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How I react to gluten… what happens to you?

Posted on May 29th, 2011 by Alison Read 333 Comments - Add Your Own »

Wonder what happens when a girl with celiac disease eats gluten? Read on!

There was actually a time that I wanted to eat gluten just to see what would happen to me. I had been gluten-free for many years, and I didn’t know how my body would react. I also thought it would make for a good blog post! Well, here it is, but not intentionally. I have been “glutened” three times in the past year. I’m not talking about a tiny bit of cross-contamination — I accidentally ate gluten. And paid for it.

First there was the muffin incident, and although there was no obvious gluten, there is no doubt in my mind that there was a significant amount of it in that muffin.

One bite of glutenMonths later came a lunch out with colleagues to an Italian restaurant. One of my colleagues ordered the “gluten-free pasta” that turned out to be not gluten-free. Oops. I found out after I had eaten one bite of her pasta. Just one bite.

And the last time was a few weeks ago, when I ate gluten at lunch. The owner of the restaurant believed something to be gluten-free, but it turned out to be an appetizer made of semolina (which is wheat). This time I ate with my colleague and nutritionist Sheila Wagner, who is gluten-intolerant, so it was interesting to note the differences in our reactions.

In all three instances I reacted almost the same way:

  • Anywhere from one to four hours after ingesting the gluten, I began to feel nauseous and my stomach started hurting.
  • The nausea got gradually worse until I ended up vomiting and having diarrhea.
  • After that I was practically comatose. I could barely walk and had an uncontrollable need to lay down and either zone out (I caught myself staring out the window and I had no idea how long I had been doing it), or go to sleep as though I have been drinking alcohol and need to pass out for a while until I sober up.
  • I fluctuated between feeling hot and clammy to feeling chilled and shivering. This combined with achy muscles made me feel as though I had the flu.
  • After sleeping, I came to and felt sober again, although one of the times I remained spacy for hours after, and even a little bit the next day.

Sheila reacted in a totally different way when we ate the same meal:

  • She had a headache by the time we left the restaurant and began to feel bloating that she has not felt in a decade.
  • She awoke at 3:30 am that night with a “blaring” headache, stomach ache, a little nausea and an elevated heart rate (like she drank a bottle of booze).
  • She couldn’t go back to sleep and the headache got much worse. Her brain felt very slow, her bowels were also slow, and she had a low back ache and left neck pain.
  • She also had phlegm in her throat and sinuses.
  • She continued to have soft tissue and joint pain the entire next day and her headache persisted for about 24 hours.

All this from gluten!

In a way I feel lucky that my body gets rid of the gluten right away, so my symptoms don’t persist into the next day like Sheila’s did. I have heard from some of you who feel it for days, even weeks. If you’ve been gluten-free for a while, it would be interesting to hear what happens to you if you accidentally (or on purpose!) eat gluten.

How do you react to gluten?

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  1. I also get the headache almost immediately! I also bloat and burp, and then usually get some form of serious GI distress within a few hours. I had a “gluten free cookie” which was certainly not GF at a ceremony recently, and oh boy did I regret that! I ended up skipping the afternoon part to sleep it off.

  2. I ate gluten on purpose about 3 months ago, and ended up with the vomiting. Then, about a week later, I ate something that should have been gluten free, but once again, was vomiting within about 2 hours.

    Prior to my celiac diagnosis, I never vomited, I just never felt good. So I guess, the longer you go without, the worse your reaction will be (at least for me) if exposed.

  3. I suffer from IBS and what makes it worse is gluten. I have had this now for about 3 years. I try to stay away from as much gluten as I can but some days I have a reaction. When I have gluten within 10-20 minutes, I get terrible stomach cramps and my body gets rid of it. (diarhea) I feel real clammy and hot following it for about 10 minutes and within an hour I feel just fine. I have been tested twice for celiac but both have came back negative.

  4. I’m extremely reactive and will start within about 15-20 minutes to have nausea and stomach cramps. I get dizzy and will usually vomit within an hour. I get clammy and sweaty as well as achy and will then get diarrhea. The nausea and diarrhea and flu-syptoms will continue for usually about a day.

    I also get loopy and fuzzy brained for several days. I can’t focus and all I want to do is fall into a coma somewhere. I’m exhausted and feel very weak.

    Needless to say (I hope) I never voluntarily eat gluten :)

  5. headache – can turn into a 2 to 3 day migraine
    bloating, diarrhea, joint pain, fatigue

    It can take about 3 days to get back to normal. We just found out that my daughter has a wheat allergy – among many other food allergies. I can control things at home, but eating out still worries me.

  6. What a great idea for a post. I’m always curious how others feel when they have had gluten. Mine is mostly headache. It is super strong but sometimes it is mild. I never fully know if I’ve had gluten or not. When I found out that I was celiac I didn’t have any stomach issues. I could eat anything and feel fine, except for being dreadfully low in iron. I kind of wish that I did have stomach issues so that I would know 100% that a food was contaminated. It makes trying to be 100% gf very challenging.

  7. I was diagnosed 10 months ago and have only had gluten once, accidentally, through cross contamination at a Starbucks. :( Within an hour of ingestion, I had to find a bathroom. Luckily I made it. It was just one bout of diarrhea and then no problems after that.

    I had only been GF for 2 months at that point; my assumption is that the next time could be worse. Before my diagnosis I didn’t have “typical” symptoms — I was merely a bit anemic and had migraines (which have disappeared since going GF).

    It’s not surprising that gluten would affect us all differently now, since symptoms prior to diagnosis and going GF are so different, too! It’s interesting to hear everyone’s stories.

  8. I put myself back on after being sort of off. I became bloated after 5 days of cereal and a migraine and sinus within the next fee days with bread added. The dizziness and almost passing out came a few days later and was the thing that lingered for days. I also get leg twitches with accidental. When I was trying to figure it all out I was keeping a symptom/food journal and found two times having an eggcmuffin I would become dizzy within 10 minutes and felt like I would pass out. I also have an accelerated heart rate with some cc. I tested negative on my blood test with only 2 weeks of more gluten in my diet. Celiac or just gi I don’t know… And am ok with that. I have had allergies improve as well as knee pain and some Female issues improve going GF.

  9. Susan,
    The vomiting is interesting… I do remember many times after a night out to dinner that I ended up vomiting. I probably thought it was from also drinking alcohol, or from food poisoning.

  10. I get depression and brain fog as my main symptoms of being glutened. The only gluten I have had in almost 8 yrs is from minor cross contamination. I am curious as to what would happen if I ate a big bite of gluten, but not curious enough to do that.

  11. I discovered I was intolerant after trying to go back on gluten after first avoiding it during the time I breastfed my food-allergic child. I could not concentrate, had migraines and was severely depressed. As soon as I was off gluten I felt so amazing. I was unstoppable. Since then I’ve been off gluten and I never cheat. I have noticed I don’t get cold sores anymore, my migraines are non-existent and I don’t feel bloated and irritable. Joint pains and low back pains are gone too. Recently I had a bit of x-contamination and it was only a smidgeon of it – next day I was not myself. I was crying and could not function. I had to call my husband home from work to help me with the girls. Mental and emotional effects that time.

  12. I get a gas attack which gives me symptoms mimicking acid reflux, shortness of breath, heart racing, my eyes and nose dry out completely, stabbing gas pains in my stomach as the gas moves through my system, and once the gas hits my colon, it acts like constipation, blocking elimination. I feel better when I don’t eat.

  13. You know what my first symptom/indicator is? I swear I can feel the gluten in my mouth…kind of like it’s a little numb? For instance, one time I got Carvel soft serve ice cream with sprinkles on top, and within about 5 bites I could just TELL that something was up. So I stopped eating and Googled it, and sure enough there was gluten in the sprinkles. Other than that I echo all of the usual symptoms mentioned. The thing that always makes me wonder is when I have a tiny bit of gluten how my body reacts. Sometimes I’ll have mild headaches, be a bit gassy, or extra fatigued, but I can’t discern if it was gluten or not. I guess all you can do is be as careful as possible and pray that if you do happen to get glutened the symptoms will pass quickly.

  14. I got glutened exactly two weeks ago and I’m still feeling the effects of a bloated belly. I believe I am gluten intolerant, but I did a celiac test after I went gf, so that remains a mystery. At any rate, I avoid gluten and hav edone so for 3 years.
    This last incident must have been a large dose of gluten because I started feeling really drowsy at the restaurant, like I wanted to lay my head down on the table, shortly after eating. This was embarrassing as i was out with a group of friends and they thought i was overly tired and wanted to take me home. By the time I arrived home, I realized my belly was distended, and it grew 6 inches around by morning. The abdominal pain was terrible and lasted for days. My joints ached and I felt in a brain fog for several days. My belly eventually started to deflate but I still amok back to “normal” yet.

  15. I’m celiac and depending on the amount of cross contamination, if it’s just very little, I can tell within about 20 minutes and then have to run to the bathroom for the big D. A couple of “gluten free” products (not the usual standard products) I have reacted with D later on in the day or night too. Once though, it must have been quite a bit more than that as I ate at a fast food restaurant and had their gluten free chili. Someone must have put in a mistaken order of burger with some crumbs into the chili in order not to waste it. In 20 minutes my stomach started hurting and getting worse cramping and hours later while waiting for my plane to go back home, I had to run repeatedly to the airport washroom to throw it up and I was really feeling out of it, almost wanting to pass out and wanting to lie down from feeling so tired. My brother and son were beside themselves as I was doubled up in pain. Luckily the plane was late getting in and had to be de-iced several times. I was worried they might not let me on the plane thinking I was contagious. :-( I stopped throwing up in time for boarding and could rest and sip a little bit of water the rest of the way home. That was stressful! I hope that never happens again! It did seem to take a couple of days to get over it as it did feel very much like a “flu”. (I haven’t had any of that gluten free chili since, not trusting it anymore)

  16. Sheila’s symptoms sound almost identical to what happened to me last night! I’ve been avoiding carbs/sugar for the last month – so no white flour, pasta, bread, etc. But since I was being taken out for dinner for my birthday, I decided to splurge… and I had been lazy about the no carb thing for much of the week – adding whole grain bread and some white pasta back in (I’d had a little pasta at lunch). Well, I had two rolls at the restaurant, and some blue cheese dressing from a jar (not homemade)… I got a cracking headache before I got home, and I thought I was going to fall asleep in the car driving home. Then I woke up at 2am with a KILLER headache that just kept getting worse. This morning, I had several bouts of diarrhea, and I have not felt “normal” all day. I have felt hungover since about 3am… ugh. I don’t think I need to be tested, but I will have my doctor confirm it’s gluten (or wheat). Wow. So good to see why I’ve had headaches, brain fog, bloating, etc. for soooo many years!

  17. I’ve been gf since high school, so going on 10 years now. Ive had a few instances where I had minor contaminaton. Usually when that happens I have some stomach pain a couple of days later. Yesterday afternoon I had some French fries at a restaurant that I thought were gluten free. Hours later I developed a horrible sore throat and major fatigue. I woke up this morning and those symptoms were worse. However, I had a new symptom of intense pain in the middle of my back on the left side, as well as pain inside all around my abdomen. That tipped me off to evaluate what I had to eat. Do you think the cold symptoms are part of it or separate? I’ve never had such a bad reaction ever! I still feel horrible!!

  18. I’ve been GF for about a year and a half now and have been accidentally glutened a few different times. I’m still not very in tune with my immediate reactions. I think after dealing with symptoms all of my life I am so used to dealing with the pain that I don’t recognize it right away yet. This past weekend I was accidentally glutened. Within about 2 hours I had such bad brain fog that I don’t remember a thing that happened for about 2-3 hours after the fog kicked in. I was on a business trip which was horrible because my boss thought I was drunk! When it finally started to wear off, I still had that “drunk” feeling for the rest of the evening. I couldn’t sleep good that night, my lower back was killing me. The next day I still had the brain fog, made several trips to the bathroom, was absolutely exhausted and by early that evening my left leg was aching with a tingly numbing pain. I slept better that night but woke up in the morning with the DH rash. So now I have the painful itchy blisters on my back again. It’s good to have a place to hear what others experience to know that we are not alone, that others understand what we go through. It is so painful physically and emotionally! Thanks to everyone for sharing!

  19. I’m still new to the gluten-free lifestyle and have made more mistakes than I care to admit.

    When that happens I get immediate bloating and yawning, which turns into not being able to keep my eyes open, along a headache that prevents me from sleeping. :) Like Sheila slow bowels (for up to two weeks or longer). In addition, it exacerbates my Chronic hives and Angioedema (which they believe is due to the years of damage undiagnosed Celiac has caused) and intensifies my joint pain (caused by the Chronic Angioedema).

  20. My classic reaction from a significant dose of cross-contamination takes weeks to resolve, although it isn’t as acute as others’ reactions. I wonder if anyone else is like this. Sometimes I immediately feel flushed, my cheeks turn red, and I seem to feel my immune system kick into high gear, but sometimes symptoms don’t appear until the next day. For about a week and a half, every time I eat a meal, I have belly pain and bloating for an hour or two accompanied by astonishing (ahem) odors (which are often the telltale sign that I’ve been celiacked). Within a week I start having migraine headaches about two days out of every three that last for about another week. Sometime within the first two weeks I start to notice the achey joints and difficulty going up and down stairs. I have fatigue, depression, and brain fog throughout. And one day, somewhere between three and six weeks after the initial ingestion, I notice I’m not struggling up or down steps and I must be all better. I’ve only vomited twice from a gluten reaction, and once was before I was diagnosed with celiac disease. As I’ve gotten more and more paranoid about cross-contamination, the frequency of these reactions has slowed to two or three times a year.

  21. When I’ve been glutenised I usually get a burning throat – feels like I’m swallowing razor blades & headache straight away and then severe cramping in my intestines for the next few weeks along with bloating. I also become constipated and have no energy it can take a while before these symptoms pass.

  22. My husband went out for dinner to a restaurant with our kids for Father’s Day. This restaurant has gluten free pizza and offers to make most items on their menu gluten free upon request. It was his first time eating there.
    He had the GF pizza and when they brought bread to the table the waiter told him the corn muffins were GF.

    About 2 hrs. later he began to feel ill. In fact he has never had this severe of a reaction before. At first he had violent vomiting and diarrhea. Then muscles throughout his body started to go into spasm. It got so bad that he was no longer able to stand due to the muscle spasms in his legs. He also shivered uncontrollably (I think his body went into shock). I had to call 911. He was rushed to the hospital where he was given an IV of two bags of saline fluids and a bag of potassium. The ER Dr. said he was severly dehydrated and his potassium was very low.

    He was sore but doing better the next day. He has spoken to the manager at the restaurant, who was very upset and apologetic. They are going to cover his medical costs. They also did some investigating and determined that his pizza was GF, but the corn muffins were not. The restaurant staff was suppose to know they were not. Their policy is also to have a manager speak to any customer ordering a GF meal.
    This was the scariest experience we have ever had in the 11 years he has been diagnosed.

  23. That is so scary. Glad he is ok and also that the restaurant took responsibility. Leg muscle twitches is one of my “I know I have been glutened” effects too.

  24. I’ve been gluten free for about 5 years. My symptoms before being diagnosed were bleching, major bloating, and abdominal pain, tremendous flatulence, loose stools. I ended up being anemic as well. I’ve never had headaches that I remember from gluten but have suffered from migraines since in my 20’s.
    I’m wondering if the headaches, and heart palpitations some people have after eating out may be MSG related. Also, I take magnesium citrate/malate,(500-1000 mg/day)for the migraines and that has completely stopped them.
    I still have the same symptoms above if gluten slips in.

    Has any one ever noticed if you ask a friend, “Does that soup have wheat in it?”
    They immediately say “No”.
    Then you ask, What did you thicken it with?
    And the say, “flour”.
    It can get frustrating at times.

    I usually always take something GF to any dinners just so I don’t starve by time the evening is over. 😉

  25. My 16 yo daughter has the abdominal issues stated above but also breaks out with the dermatitis hepatiformus on her arms/elbows. She hates is, but has adjusted to a GF diet well.

  26. I get sick to my stomach within an hour, painfully bloated, and sometimes feel like I need to vomit, but can’t. I’m spacey within 30 minutes, sometimes with slurred speech. It’s like I’m drunk. My feet swell a bit and tingle (not visibly, I can just feel it). Sometimes I’m painfully bloated and constipated for a day or two, sometimes less, but finally, diarrhea comes. I’m generally feeling like I have the flu for at least 24 hours. I’m weak for a few days afterwards, depending on how much I consumed. Everything I eat causes me to have heartburn for a while too. Yuck!

  27. I’ve been gluten free for about 2 years and I have Crohn’s disease. For years I thought the majority of my health problems were from the Crohn’s or side effects of the medication. I have a chiropractor also does a form of alternative medication where he uses your body’s strength to test reaction to different substance. He had gone to a siminar and talked with another doctor who was discussing a patient with Celiac’s and thought of me. He tested me for reaction to gluten. Major reaction! I had no muscle strength when exposed to wheat, even when it was in a glass jar!

    Now if I’m accidentally glutened I start belching about 2 hours later, then it’s major gas, bloating, abdominal pain, muscle aches, diarrhea, and nausea. This can last 1-3 days depending on the amount of gluten. If it’s long exposure of a minimal amount, the abdominal symptoms are mild but I live in a mental fog and am very gassy until I can figure out that something has gluten in it. I kept taking Gas X chewables but the symptoms never improved. Actually the gas got worse! I found out after a while that the chewables aren’t gluten free so I took the gel and that didn’t help either. That has caused the worst symptoms and put me in to a Crohn’s flare that has lasted 3 months and I’m still not over it. I had been in remission with the help of high dose medication when I went gluten free and was able to stop the meds. Now I’m back on most of them. I’m not a happy camper! LOL! Working on getting everything under control and being more vigilant on reading ingredient lists.

  28. Terri,
    Interesting about the hives and angioedema – these reactions aren’t as well-known, so I’m glad you posted here!

    Wow – that’s a long time to resolve. I’m thankful I get it out of my system quickly.

    Burning throat — yikes! And you too, a long recovery. Not fun!

    Your poor husband! His reaction sounds like mine with the vomiting, diarrhea, muscle cramps and shivering, although I didn’t need to be hospitalized. It’s still unbelievable to me that we can react like this!

    I know it’s not a great solution, but has anyone thought of inducing vomiting to help get it out of your system?

  29. am gluten-intolerant – the next day i will have a huge headache that always centers around the eye sockets (different from any other headache) and lasts for 2-3 days, really stiff finger joints (whenever i think maybe i’m getting arthritis, i know i’ve gotten some gluten,) brain fog, and irritated stomach with 4-5 bowel movements a day versus one, and just generally feel like i have a hangover for 3-4 days.

    interestingly enough, my sensitivity has increased – i seem to get this reaction through cross contamination as we are entirely gluten-free. my daughter is a very sensitive celiac and it seems as though contamination bothers me as much as her – she can’t eat anything made on shared equipment, WHICH INCLUDES MANY PRODUCTS LABELED GLUTEN-FREE.

    yes, i was tested for celiac (blood work) and it came back negative.

  30. Great post! I’ve been GF for about 8 months now and I’m still trying to learn my symptoms.
    I also had negative blood tests about 12 years ago and have since suffered from terrible IBS, chronic neck and back pain, and lots more… Luckily, I found a great new alternative doctor who immediately had me do a special DNA test and confirmed it right away. I am glad that science around CD and gluten sensitivity has progressed so much, but I still don’t understand why testing is such a phenomenon for the medical community. Now, because the mainstream medical processes only focus on traditional testing methods instead of the new advanced DNA testing, I will be paying out of pocket for my daughter to be tested instead of my well-paid insurance :(

    So far, I’ve noticed bloating, headaches, and depression, but it sounds like this may become more apparent.
    I’m really surprised that the symptoms and reactions are so different after being GF for an extended period of time than when gluten had a commonplace in our diets. Does anyone know why this is?

  31. I’m lucky… I only become gassy and get either softer stool or diarrhea. I had it for a week once after eating the “gluten free” pizza at Boston Pizza. I’m sure it was contaminated during preparation.

    Before I was diagnosed I didn’t know I had any symptoms. I had gas, but did not associate it with gluten. Mostly I just couldn’t get myself to eat it anymore. It took returning from Europe to the specialist who diagnosed my mother to be tested, as two doctors there would not test me. Luckily, again, I actually came out positive…

    Likely I should have been diagnosed in elementary school when I started to really dislike eating bread. I have learned over the past 11 years of being gluten free and reading about it: trust your body, not any test. PS: my site http://www.ohsouseful.com isn’t terribly useful yet, but it does have a really nice bread recipe on it, if you’re interested.

  32. Any advice you could give me would be awesome and greatly appreciated. My dad has celiac, he was diagnosed probably some time in his fifties.

    I have had, for years, reflux problems, heartburn, stomach problems, at times bowel problems, extremely dry flaky skin and on occassion a rash, along with the usual, depression, fatigue, moodiness, bloating, constipation, brain fog, etc. etc. I also starting having migraines within the past two years, which I thought may be hormone related, I am 42.

    Starting in April, my life was spun into a big ball of Extreme STRESS. I began having panic attacks(first time in over ten years), then in July I started having problems breathing, I thought it was all anxiety related but the anxiety has subsided and I still have problems breathing, my chest gets real heavy, feels like i can’t get a decent breath. Then I presented with a rash on my lower back, right side, EXTREMELY itchy, of course I scratched away and then it hurt and now it’s scabbed over. Someone thought it was shingles but my mom(she’s an RN) said no way, I don’t have any pain with it that is always associated with shingles.

    I have been off gluten for 3 days, I believe my breathing is better, but not completely back to normal. My rash doesn’t look as red and irritated. I have also had SEVERAL bowl movements each day since i’m off the gluten. I was tested years ago for celiac and all test came back negative, I really don’t want to go thru that expense again. I don’t believe they can do anything for me anyway. How can I figure this out on my own?

  33. Also, another strange thing that happens, if i drink a couple beers and hit the sack, I always wake up several hours later almost in a panick. It’s like I am vibrating inside, and cold as can be. It’s a horrible horrible feeling. I would actually try to eat before I went to bed thinking my blood sugar was dropping or something so I would eat something carby-go figure. Don’t know if this is a gluten problem or not.

  34. I am so happy to have come across this blog and related links and such!!! I have been gluten free for only 3 weeks, with one experience knowingly eating something with soy sauce with wheat, sort of as a test. I am 55 and thinking I have had at least a wheat and/or gluten intolerance for decades, always contributing symptoms to something else, never thinkging food allergy or intolerance.

    I have had severely itchy skin and attacks of torturous itchyness for decades now. Always thought it was an allergy, or sensitivity to something in our well water, or pets, or medication, or anything else never thinking food.

    I used to take extreme measures to try to stop the itchiness, but nothing ever worked except time passing and lately high doses of benadryl – you’d think I would have had a clue then!!! Thought it was related to medication, or a number of other conditions that I was too afraid to even think about much or get tested at a doctor.

    For various reasons I started eating better recently (which in my former life equals minimal pasta, bread and carbs) and one Sunday afternoon put together regular pasta, cream of chicken soup and vegetables for a what’s in the pantry meal. Within 10 to twenty minutes or so I started with a horrible itch attack and finally thinking maybe the reaction was due to something I had eaten did a search on food allergies causing itchy skin. Pulled up this site amongst others.

    The combination of the regular pasta and cream of chicken soup gluten filled ingredients in one dish must have caused the almost immediate severe itching attack. Immediately quite eating that food and the itching was gone in about an hour.

    The next morning I had a bowl of what I thought would be a healthy and good for me breakfast from wow bao with goji berries and other healthy things. Again within a few bites and 10 minutes or so, severe itching again. Quit eating it.

    After those two experiences, two days in a row, went cold turkey gluten free. NO ITCHING AT ALL for almost three weeks. I HAVE NOT FELT THIS WELL IN MY LIFE FOR AS LONG AS I CAN REMEMBER!!!!

    I have always craved carbs, pasta and bread. Often felt tired and out of breath with little excertion and a general sense of not feeling well, for years!!! Thought it was due to high blood sugar, generally being out of shape, past unhealthy lifestyle choices, etc.

    Also for years have had joint and bone pains, thinking arthritis or something similar. My feet especially would ache so bad and at night my legs would be very achey and I realize now, were bloated (feet and legs) but not enough to really shout out bloating, always thought “fat”. Have had tingling and pain in my hands also, thinking carpal tunnel or arthritis.

    Not only did the itching disappear when I went gluten free, but my no more joint and feet aching, no leg aching, my legs have gotten skinnier due to what I realize now is the absence of bloating, I don’t crave carbs at all, I don’t feel like needing/wanting to go on eating binges anymore, my skin feels like new inside and out. So hard to describe – feels silky and almost new now, definitely a difference!! I have had a patch of thick dry skin on one elbow for years – even that is clearing up!!! Much less tingling in hands, almost gone but not quite, no more aching though!

    Feel overall just so much better than I have!!! More energy, don’t get out of breath as easy, actually walking miles a day without a complaint! Don’t just feel tired and blah and like laying down for a rest as I often felt when not gluten free.

    Two days ago I had a dish seasoned with soy sauce with wheat in it,but absolutely no other gluten in any of the other ingredients (it was Pad Thai with shrimp homemade). I knew it had wheat in it before I ate it, but ate it anyway as a test.

    Within an hour I started getting pains in my feet, and my legs ached all night. The next day, after absolutely no other wheat or gluten than what was in the soy sauce I had a horrible itchy skin attack that lasted most of the day, subsiding somewhat with high doses of Bendadryl a couple of time in the 12 hour day. This is the second day after and now itching, pains or aching today at all!

    It seems absolutely too good to be true!!! But reading this blog and others’ experiences, I realize it very well can be and is true!!! I don’t need a doctor’s test or visit to confirm, though I will share with my doctor when I got to a routine visit in two months.

    I am also losing weight slowly, but at least am losing!! Very hard to lose weight with my carb cravings, wheat or gluten drunkiness and other apparent reactions to these in my diet. Will be interesting to see if my sugar levels go down also with the diet change, especially since I am feeling better, eating better, and walking.

    SO thanks to all who have shared!!! If being gluten free has so improved my quality of life in just three short weeks, I am going to shout it out to anyone who will listen, hoping they will be helped also.

    Sincere thanks again for this blog and everything related!!!

    Within an hour or so started pain in my feet =

  35. *Sorry for typos and extra line of text!!

  36. hi to everyone on here and a fabulous informative place it is. Just wanted to ask as my daughter is undergoing food allergy testing as has many symptoms one being a high temperature not sure as to how common this is a Dr recently told me an allergy wouldn’t present with an increase in temperature. Any thoughts on this or anyone having high temperatures with other symptoms.Many thanks

  37. Kath, has your daughter been specifically tested for celiac disease? Celiac disease isn’t an allergy, or course, and many doctors have very little clue as to what it is.

    Also, celiac disease likes to invite all kinds of other autoimmune diseases to the party, some of which (like lupus) do have a high temperature as a symptom. So having a diagnosis of celiac disease should cause your daughter’s doctor(s) to look into other autoimmune diseases for the cause of the high temperature and other symptoms.

    Good luck! Getting a proper diagnosis is so important and I hope your daughter’s situation gets all figured out.

  38. Kath, this site http://thyroid.about.com/cs/endocrinology/l/blchecklist.htm lists various symptoms and what autoimmune diseases they can go with. It lists fever as something that can go along with celiac disease and/or gluten intolerance.

  39. Kath, I agree, get tests for celiac disease. A positive test will diagnose CD but a negative test cannot rule out CD or gluten sensitivity. So if tests are negative, but your daughter is having symptoms, she may still want a GF trial.

    Labs such as Cyrex and Enterolab do have tests for gluten sensitivity. Such testing is not accepted by the mainstream medical community at this time. I used Enterolab and my remarkable response to the GF diet to be convinced that I never want to eat gluten again.

  40. Peg,
    So glad you are finding relief! Gluten-free is definitely agreeing with you. I used to be itchy all the time, my whole life. There was no rash, but I felt itchy under my skin. No itching after cutting out gluten.

  41. Thanks for the relpies have only just realised so sorry for not getting back. Yes daughter has been tested before for celiacs and numerous other allergies although having excluded dairy for a year previous to the testing and wheat 4 weeks before and tests came back negative(obviously),but have since been refered to a specialist who has re tested for celiacs having had to put her back on wheat 4weeks before testing and awaiting results.she is also not good with dairy or soya but seems ok with goats milk.She tends to run the high temperature after having dairy products causes cystitis type symptoms which the Dr doesn’t think is possible??? the wheat tends to affect her mood along with bad stomach aches to name a few.We are in UK too think Drs not too clued up,has been a long struggle. Many thanks again to all replies

  42. I have recently been, somewhat, diagnosed with a gluten allergy. –my doctor told me to stop eating gluten and if it made me feel better then i obviously have it.. :/ Anywho.. I used to get extremely bad migraines that would cause me to get sick. The migraines would last around 4 days to almost 2 weeks. It was miserable. That was about 2 1/2 years ago when the symptoms started occurring. Now, Until a few months ago my symptoms increased to fatigue, diarrhea, and even severe depression. I also would go out after work and have a beer with my friends.. & of course my choice in beer had to be Blue Moon– a wheat beer… the next day i felt as if i had just drank a fifth of tequila all by myself the night before. It was awful. I stopped drinking them and switched to something that seemed to be way more mild, a cider beer. No side affects. I decided to do a little research on the internet and read some posts about beer and what could cause my terrible Migraines. A website told me that beer companies are substituting a chemical in their beer with an artificial substitute which sometimes causes and increase in a gluten intolerance. I began reading about the gluten allergy and noticed most of the symptoms seemed to be coming directly from it. So I saw the doctor and listened to her advice. I went in telling her that i thought i might have it. I told her all of my symptoms- diarrhea, and then constipation and visa-vis, severe depression, migraines, bloated stomach, and nausea. She treated me separately for each thing. I got a phone number to a GI for my diarrhea, constipation, and bloating. I got migraine medicine (which actually really works), a prescription for nausea medicine and a year supply of Zoloft. So i decided to start the diet. I felt great! I didn’t eat gluten for almost 4 months and realized that each and every symptom had gone away. I did take the zoloft for about 2 of those months. I felt so great with being gluten free that i decided to stop taking the zoloft and realized that I felt that i also didn’t need to take that! Recently though, i broke my great GF running streak and ate some pasta… don’t ask why.. :( because i don’t know why either.. lol. Within literally 2 min of my first bite my headache started and within 5 minutes of my first bite i began vomiting continuously. I vomited around 20 times within an hour and then within about and hour and a half i had terrible diarrhea. Whew! I won’t be eating gluten on purpose EVER again. With this experience it is frustrating that i had pretty much had to diagnose myself. Which i am very grateful for posts and awesome blogs just like this one to help me determine exactly what i have. It’s also great that there are always little helpful tricks to get through it. My biggest issue is not being able to eat things that other people can. But! life goes on and i intend to make it great and so can everyone with a gluten allergy!~even without that delicious cupcake at the birthday party! 😉
    Also– I found Kroger grocery store (or some places it’s called Payless) to be extremely helpful. They everything tagged within the store that is gluten free with a branch of wheat marked out with a red X. Also, places like Buffalo Wild wings have a gluten free sauce, like their Honey BBQ! It’s great on a salad!

  43. I am so happy to have found your web.site.
    I broke my leg last week and my sweet hubby has been getting Jack in the Box taco’s and french fries for my lunch.

    I noticed that I have not been feeling well, achy, bloated, terrible tummy pain constanley in the bathroom, legs cramping and in a fog. I know I have to stay away from Gluten,and I was thinking what’s wrong with me,I know I have not had Gluten, but yet I feel like I have!
    I then was checking out the taco’s at Jack in the box and found your post.
    It will take me at least three weeks to get the gluten out of my system.
    And this too shall pass!!!
    May everyone stay GF in 2012

  44. I have been on a long road for 2 years trying to figure out what is wrong with me. Severe Watery Stools up to 8x a day all of the time, severe, bloating, fevers after I eat, swollen eyes, hair loss, pains, some constipation out of nowhere after having watery stools, fatigue, migranes. I went to the GI and he diagnosed with IBS, I litterally was getting so sick I was afraid to eat. I had errands to run on Friday so I decided not to eat all day until I got home, I ate a 4 inch sub and within 20 min, had a fever, I was tired, and my eyes started itching and swelling, Later that evening I was on the toilet for several hours. I have concluded I must be allergic or intolerant to gluten. Its been 3 days and I have finally gone to the bathroom like a normal human should!

  45. recently diagnosed….I do not have the terrible gi problems but wheat/gluten kicks my asthma into high gear, wheezing, coughing, mucus overload, fatigue.
    Also I get muscle pain and headaches…and it doesn’t take much either!!!!!

  46. Michele,
    Ugh – sorry you made that mistake. Further proof of your gluten intolerance in case you needed it! :)

  47. Hi Alicia D,
    Keep it up — IBS is BS! It’s just a name for “I don’t know what is wrong with your stomach.” You are smart to try gluten-free. Good luck!

  48. Hi Connie,
    Thanks for mentioning the asthma – I am still trying to get people to believe this one!

  49. My father has Celiac Disease an I started having gluten intolerance symptoms about 6 months ago and one of the first symptoms I had was trouble breathing. My chest would get real heavy and I would wheeze and couldn’t get enough air. It would come and go, I thought it was anxiety but it happened even when I was not at all anxious. I thought I was losing it, I don’t have asthma. I was going thru an extremely high stress period and I was told that such a situation could bring the disease on.

  50. Nancy,
    Interesting – I wonder what was directly causing that. I assume you are gluten-free now?

  51. Yes, I’m gluten free now. I did have some gluten last week, a roll with dinner and some cookies afterword and that night I became very anxious and extremely nauseated, so after that I’m done. My breathing is definitely better now. Another thing i notice when I eat gluten is my cheeks and nose get really red and I get spots of eczema on my face. Still not sure if it’s celiac or just an intolerance but i’m interested in seeing how I will feel after a few months of gluten free eating. I’m going to keep a food/symptom diary so i can keep track of things.

  52. So glad to hear your symptoms, as some of them I did not realize were results of gluten intolerance. Now I see that my brain freeze and feeling as though I had a sinus infection was a result of taking a bite of something that I knew I shouldn’t have.

    When I told my doctor I had been gluten free for over a year and that this stopped my depression difficulties (I live a happy life) and bowel problems, she said she would not test me, and ‘stay with what works for you’. I didn’t realize that there was a blood test, as well as a biopsy.

    I baked some gluten free cookies to take to an event and put a note on them. A young lady (college student) kept coming back for more, so I asked her if she knew they were gluten free and she said she was autistic and her doctor told her to stay away from gluten as it made her symptoms worse. Has anyone else heard about this?

    Anything that can help folks live a normal life is worth publishing!

  53. I know this is not a pleasant topic but has anyone experienced black specs or black spots on their stool? This is new to me and has me a little concerned. Can’t think of anything I would have eaten to cause that.

  54. I know it’s been a while since Kath posted, but I wanted to respond to the temperature thing. I was tested and diagnosed with corn, egg and wheat allergies about 6 months ago and also suspect a beet sugar allergy as a lovely counterpoint to my daughter’s cane sugar allergy. One of the symptoms both of us have is that are faces and ears turn bright red and we both feel flushed and hot. I took my temperature a couple times but it was never about 98.6.

    A couple months later my doctor began suspecting a thyroid problem and wanted me to chart my basal body temps but they were totally whacky and unhelpful. One day it would be 97.1, the next 98.2. I’ve been tracking my temps for about 2.5 months now and have finally figured out that it’s my allergies that cause the fluctuation. If I go off my diet (which I do way too frequently) my temperature the next morning is “normal”. When I stick to my diet I have an abnormally low temperature which is a symptom of the hypothyroidism my doctor ultimately diagnosed me with.

    An interesting side note, my thyroid has likely been busted for years but the symptoms were masked by my allergies. The allergies cause me to have diarrhea and hyperactivity but the hypothyroidism causes constipation and fatigue. I didn’t feel sick, but I didn’t feel great either and sometimes one or the other would take precedence and I’d be pretty off. Once I went on my allergy-free diet I couldn’t get out of bed in the morning because the thyroid problem was so bad. The thyroid problem is also why I deviate from my diet as often as I do. A little corn syrup goes a long way in clearing a backed up intestine.

  55. Oh, this sounds like me right now!!! Ate something I should not have after 16 months, think I’m going to die I’m so sick. Been looking for site to help get this crap out of my system. Glad to hear you all are like me.

  56. I’m a mother on a mission to get my boys healthy and well. I have two sons both born c-section and we have always had issues with what the doctors call seasonal allergies (hay fever). But this year has just been the worst with additional medical problems and reocurring infections. After a countless number of doctors, script after script of antibiotics and steroid creams and internal steroids I came to a dead end. After many books and literature on line I have changed our diet and that is how I found this site. My boys are 6 and 7 years old. They have had rounds of antibiotics for allergic rhinitis/sinusitis, bronchitis, otitis media (middle ear infection) and now my 7 year old son has been diagnosed with eczema. I have been battling this skin rash since last September until I decided to change our diet! In just a matter of a week I can tell the difference in his skin and he has complained much less of headaches.

    Has anyone else experienced anything like this? My 7 year old son also has geographic tongue which each and every doctor seem to shrug off; I believe this is linked to all of his other symptoms, infantile colic,headaches, nasal congestion which leads into infection, dry cough, and skin rashes. My other son has had 4 ear infections in the last four months along with upper respiratory infection. I’m ready to homeschool them and move out to the country. I’ll do anything to free my sons from pain. I have my family on a gluten-wheat, dairy free diet and any comments will be appreciated. Thanks

  57. Mother Angelica,
    Every symptom you mention is caused by gluten, dairy or both. Stick with the diet and I’m sure you will see more positive changes!

  58. This has been so helpful to read. Makes me feel like I am not making up my symptoms. I have been GF for almost 4 years and am very careful. I traveled through France without one episode, I know how to eat out, and I can cook for myself and my family without contamination.

    That said, several times I have gotten cross contaminated, but I can track it back. On Tuesday, I had one of my “events,” as I call them, but can not track back the culprit.

    My obvious symptom is intense abdominal pain, to the point that I can not function. On Tuesday I considered going to the ER because the pain was so intense. It woke me up at 6am, lasted until 4pm and then just went away, leaving me exhausted and scared! As I was dealing with the pain, I thought about all the gluten I did avoid and if I was in such pain, why didn’t I have one of those “cookies?” (Just a little GF humor)

    My question, does anyone have a remedy for such pain? For me, the reaction tends to be 24-36 hours after consumming the gluten so I can’t vomit. I tend to be constipated with a great deal of belching; I feel like my small intestine has just shut down. Does a laxative help? Any one have something that makes them feel better?

  59. Thank you Alison.

    I have definitely changed our eating habits/lifestyle, cleared out the cabinets of all junk food and we are on our way!

  60. Hi Alison thank you for taking the time to add your response to the temperature rise due to allergies.I find it so frustrating when Dr’s seem to not think outside the box.If symptoms don’t “match” to what they have read,then we are wrote off,as have found with my daughter as she doesn’t fit a “typical type” her celiacs test and wheat allergies came back normal yet her body screams differently.they suggested we put her back on wheat and dairy to “see” how she gets on indefinatley….. Hmmm I don’t think so.Does anybody know how one can have such severe symptoms yet have negative results?? Thank you

  61. Dear Alison: I was told by one dr. these test are not accurate and if the diet works stick to it. i have a different dr. now (the other left town) and because the test results were not positive, but the other dr. said I did I have it she goes by test results. I stick to the diet I don’t get sick don’t have symptoms and feel better unless i have gluten then I’m deathly ill. I would stick to the diet it would hurt as long as it is a healthy diet!

  62. So as I sit here in pain- I realise those 2 bluemoon beers and chocolate chip cookie were soooooooo not worth it! I have been gluten free for 2 years- we are on vacation so I decided that since I went gluten free for thyroid issues that if I snuck in some gluten it would be ok….wrong. I woke up 6 hours later -threw up everything I ate after the beers…in reverse order???!!! And now while everyone else is out having fun – I am sitting here by myself -not too far from the bathroom…. I am guessing that since going gluten free my body now just rejects any contact with gluten. I can say I will NEVER have any gluten on purpose again!!! It is not worth a day of vacation! At least by finding this site I have some more proof that it was a gluten reaction and hopefully I will feel better tomorrow!!!!

  63. Oh Missy,
    Sorry for your pain! Many of us have been there. It’s definitely not worth it. I hope you didn’t remain sick for too long.

  64. Thank you Alison, I will get some, hope not to have to use it, but if I do need it I will let you know how it works!

  65. Does anyone have any experience with genetic testing for Celiac? My dad has celiac and instead of guessing or dealing with false negative blood test, or having syptoms that could be something else I would really like to be tested for the genes. If I don’t have the genes then I don’t have to stay away from gluten. If I do have the gene than it would probably be best to cut out gluten for good. I just wasn’t sure how helpful the genetic testing would be.
    Thanks for your help.

  66. I wanted to post as well. It is SO helpful to be able to read others experiences. Over the past six years I have been very worried about my health. Mine problems began with ear infections, that would return as soon as the antibiotic were gone. Over a period of three years the doctor kept giving me them, saying we’re going to get it this time. I simply quit going and deal with it. I began having very dry skin,a fluttering feeling in the colon area that is now a raw feeling, stinging eyes/skin, breaking out in red dots and eczema. Burning throat so bad I went twice to see if I had throat cancer, hair loss, vaginal BV, dandruff, now scalp eczema, gum recession, got braces at 40 yrs old, sore bones, terrible muscle spasms even if I turned my neck. I have gone to the doctors SO many time and if everything on the lab work saying you are fine they would say you are FINE, would you like an antidepressant! Of course I’d go on my way with out.I feel like I have aged 30 years in the last 10. Celiac test was negative.I have tried a gluten free diet have made it 3 wks at which time my craving get so bad I cave and begin the pain cycle all over. My Ferritin (iron stores) is always low since 1999. Now I must take vitamin D all the time or that drops too.

  67. Becky, have you had your thyroid checked? A few of those symptoms could be caused by that. Have you seen a good dermatologist and showed him/her pictures of every kind of skin problem you’re having?

    When you tried the gluten free diet, did your symptoms lessen? If so, you should go off gluten and stay off. Find some decent gluten-free alternatives and don’t let yourself give in to “cravings.”

    There’s some doctor out there who can figure out what you have. Keep looking!

  68. @Nancy, I don’t know if there is a standard well recommended gene test, but I have had some DNA testing done by enterolab. My doctor (chironeurologist) here in GA recommended it and likes the test with them over others, although it depends on the person/situation and what you’re looking for. Anyway, it was effective in showing me that I did not have all of the genes for celiac but I do have some, making me highly sensitive to gluten. I was having multiple health problems and cutting gluten out has had a very positive effect: I certainly react to it badly when I accidentally ingest it. From what I’ve read, the chances are quite high for family members to have similar genes in this regard. I’ve actually just tested my daughter with the same test and found her to have the same genes as I. Good luck; I hope that helps.

  69. @Becky,
    I have had many similar symptoms as you, with the breakouts and eczema, other skin issues, fluttering feelings in my bowels, terrible muscle spasms, and others. I tested negative for Celiac 10 years ago when this started to get bad (blood test) and it came up negative. Last year I found a new doctor and was tested differently (DNA test by enterolab) and found that, while I don’t have all of the genes that make up celiac, I do have several of the genes which apparently makes me highly sensitive to gluten. I have since had gluten out of my diet for more than a year now and it has made a significant positive difference. When I do accidentally ingest it, I get many of the same symptoms back immediately, and quite severe. I am not sure of your situation, but from my experience, the blood test wasn’t the answer. I would consider taking it out of your diet entirely for at least 3-6 months and seeing how you feel. Good luck

  70. I have suspected thyroid for over twenty years. I’m always very cold. And with the low Ferritin and Vitamin D now…. My mother & sister both have low Thyroid.
    After during some research I came across something interesting, many people with Thyriod problem have Celiac Disease too!
    I have had my hormones tested recently through saliva test and all were below normal. I am in CA and going to see Richard Shames next week. I really hope this brings some answers.He said you can have a Thyroid problem even with normal TSH.
    I hope is is not Candida. I was recently doing McCombs plan but like I said by week three I was hungry ALL the time, my craving didn’t get better they got worse. I am back to not Gluten and will try to stick it out long enough to see if enough of my symptoms disappear.
    Jessica, did your muscle spasms stop without the gluten alone or did you have to supplement minerals for them to stop? I have twitches under my skin and terrible muscle spasms.
    My dad went his entire life with colon problem, constipation, bleeding. He was too afraid to go to the doctors (men). Five years ago he had his colon removed and died from complications. But what interests me is he too had ear problems as a child and had to have some bone removed near his ear. But I wonder now if he has Celiac disease.
    Anyway, it is wonderful to be able to compare stories to try and put this all together.

  71. @ Becky I too am Hypothyroid and from what I have read there is a corelation between gluten intolerance and hypothyroidism. Hang in there and fight. It took me years to find a Dr. that would prescribe Armour for me and a few more years to get enough! Finally, I feel like I’m a normal person (what ever that means at 53 but I certainly have more energy, sleep better and can eat about 1500 calories a day without gaining weight). Next, from what I’ve read, you need to be GF for at least 6 weeks before you really see the results. I can tell you that since being GF, I look better, I have had many fewer colds and did not get Asthma after the cold (as usual) and there is no longer the “mysterious” stomach pains. The GF food is readily available these days and some of it is not bad. When I started being GF four years ago, I just gave up any carb but we can have pasta, crackers and cookies (Mary’s Gone crackers are my favorite). You can and will feel better!

  72. @Becky, I would like to know how your appointment with Dr. Shames goes. I am thinking of seeing him. I live near San Mateo. Please write a review of your experience with him on Yelp, or at least post it here!!!

    I have Hashimoto’s and have been on Synthroid for 15 years. I’ve eaten gluten all my life with no known problems until this past year, when I inexplicably began getting bad gas, bloating, reflux, and loose stools. I thought it was lactose intolerance getting worse, but it would happen when I didn’t even have any dairy or dairy derivatives. Now I realize it was gluten doing it to me.

    About a year ago, I realize now in retrospect that I must have been having an auto-immune attack. I developed a painful capsulitis inflammation in both big toes (revealed on an MRI). Then I began developing adhesive capsulitis in one of my shoulders! My body felt stiff, as if I was filled with glue. I began to wonder what the hell was happening to me. It was very scary. I believe that gluten was contributing to all of this. Dr. Langer told me outright: if you have an auto-immune disease, you should not eat gluten because it could make things worse!

    I started seeing Dr. Langer in Berkeley in January. I’ve only seen him once so I don’t have a strong opinion of him yet. I am hoping he will switch me from Synthroid to Natural Dessicated Thyroid, because I think some of my problem is also that Synthroid isn’t doing the job for me anymore.

    My Celiac test was negative, but my IgA is very low. As I understand it, a low IgA will interfere with accurate Celiac test results — it will never show the true state of things. So I got the gene test done through Entero Lab. And guess what? I have BOTH genes: the one for Celiac and the one for gluten sensitivity!!! The people at Entero Lab told me that this is a very strong indicator that I should stay away from gluten. It isn’t as strong an “answer” as a positive Celiac test….but because of my low IgA, no Celiac test will ever show correct results. The gene test shows what’s in your genes, no way to fake it or have a false result. I will probably have my kids tested, too.

    I have not done a gluten challenge yet. I hope that the worst that happens is gas and bloating. I feel very sorry for those of you who have vomiting and diarrhea and joint aches. And the story about the hospitalization, wow scary stuff!!!!

    Anyway, BECKY, please report back about Dr. Shames!!! If you want you can email me at: canyonheathmom@yahoo.com.

  73. Jessica,

    Did your muscle spasms stop without the gluten alone or did you have to supplement minerals for them to stop? I have twitches under my skin and terrible muscle spasms.

  74. @Becky,
    I was having muscle spasms and severe, chronic pain throughout my neck and back before finding my new doctor. Along with testing for gluten, we did also do other tests to get a comprehensive view of what was going on with my body. I did have some other issues to clear up (h pylori and yeast) but the gluten seemed to be the main culprit for the inflammation, pain, and spasms in my neck/back. The doctor put me on some apex supplements based on the test results and what my body was showing as deficiencies, but no drugs. As the year passed, I found it amazing that my reaction to gluten became more severe the longer I had remained gluten free (I accidentally ingested it a few times over the year as I was learning). When I do accidentally ingest it, one of the first reactions I notice is immediate inflammation in my neck/back and tons of pain. So, I’m not sure if you’d need other supplements to address any deficiencies or issues, but simply taking gluten out may have a huge impact. You’d have to look into what’s going on to know more; sorry. I hope you figure it out!

  75. Did you remove ALL grains to be Gluten free? The only grains I am having currently is 100% Brown Rice. Colon area feels much better. I seem to be doing okay. But the muscle spasms mostly in my hands continue. I am on McCombs Plan for Candida (yeast) already.
    Also can I ask if you were taking a lot of antibiotics before all this?

    Greatly appreciated!


  76. Question for everyone,

    Since realizing your cannot eat gluten, are you still eat the store bought “Gluten Free” foods, with out symptoms?

    Thank you

  77. I am an optometrist. 2 years ago I was examining a patient’s eyes and during the initial history she told me she cured asthma and lupus. At this point in my life I was 40 PD overweight, I had reflux disease so bad that I was whispering to patients, I had asthma since age 3 maximally medicated , and acne rosacea that a dermatologist could not manage.
    With her guidance I have been off all meds and lost 40 PDs with a gluten free diet, OPC and ORAC liquid supplements, digestive enzymes, and Aloe to drink to maintain my digestive system.
    When I eat gluten, which is only accidental, I take a benedryl and mucinex to keep my airway open and drink aloe and water. I get these supplements from Nutrimetrix . I am a new person. I think gluten is linked to MS autism reflux disease etc . I just found a new gluten free restaurant and gormet italian bakery shop, the best bakery products ever! It is called Grandma’s GrottoGrandma’s Grotto, 986 Easton Road, Horsham, PA 19044. They have a mail order business, try them, you will be sooooo happy!

  78. I have celiac disease. I eat store-bought items marked as gluten-free as well as many items that just don’t have any gluten ingredients, although they may be processed in the same place as gluten ingredients. I’ve only been glutened once so far, and that was from a Starbucks regular frappacino (probably cross-contaminated from a light one; I didn’t ask for a clean blender).

    I make sure to buy my GF flours from places that are GF-only to try to avoid cross-contamination problems there.

  79. @Becky,
    I did not cut out all grains; as I started to explore more with the plethora of gluten free flours (almond, rice, coconut, quinoa, chia, millet, etc). While I was on the anti-yeast diet, I cut out corn in addition to gluten-grains. I actually went back to eating corn but have since eliminated it again. I did another elimination diet and found that corn was causing some issues; broke out in a rash when I did eat it again after 3 weeks without. As far as antibiotics go; hadn’t been on antibiotics on quite a long time. If you have more questions for me specifically, feel free to contact me directly at jessica_otieno@yahoo.com. Hope that helps though!

  80. Been reading where rice from the Mississippi delta is high in inorganic arsenic. Most of the gluten free products I buy have a lot of rice flour. Maybe this is why some of us aren”t getting better. Sure is scary!!!!

  81. Happy to find this site. I was glutened just Saturday night and am wondering how long this will last! It started with the bloating and the diarrhea; then the stomache PAIN/cramping in waves. I felt like I wanted to vomit…but it didn’t happen. The pain is lingering and the extreme fatiuge and brain fog are there as well. I was diagnosed with Celiac last fall and have been gluten free for about 6 months. This is my first full glutened experience. Any ideas when it will stop?! Tips for getting through?!

  82. Oh this is so similar to how I feel! Yesterday I was accidentally ‘glutened’ at a restaurant. About thirty minutes after eating I started getting a headache, which got worse into the night, and is still hanging on today. The nausea and bloating set in about an hour after eating. I ran to the bathroom and vomited as soon as I walked through the door. Then I fell asleep as soon as my head hit the pillow. Today my body aches. I’m also spacey and so tired. All from a little gluten! I have to be so careful when eating out and explain to the servers that I get very sick. A lot of people don’t understand how important it is that I don’t consume any at all! Even a little bit makes me sick.

  83. I had multiple health issues that got increasingly worse with every year and month to the point that it was unbearable. I constantly had either constipation or diarrhea when I had to go at least 10 times per day. I suffered horrible acid reflux and went though bottle after bottle of Mylanta. For many, many years, on and off, I had a red, swollen, scaly, itchy rash around my nose and mouth, especially in the corner of my mouth; a dozen doctors couldn’t help me. I had headaches and migraines and terrible dizziness and tiredness. I started to suspect that I was celiac and changed my diet. I took huge doses of vitamin B complex since I was suspecting that my mouth rash was a vitamin deficiency from being unable to absorb nutrients. Within days my problems were beginning to disappear one by one and by the time I had my doctors appointment a few weeks later I was feeling a lot better and my blood test came back negative. That was over two years ago and I’m not willing to go back on gluten just to get a potential positive test and a diagnosis, but I do often wonder if I really am celiac since I never got a positive test. These days if I get glutened I get acid reflux the same day and constipation for about a week. I sometimes get bad headaches and even migraines and wonder if I got glutened without knowing it. I’m not the strictest of dieters and occasionally take risks that I shouldn’t. A few days ago I caved in and ate Chinese take-out and the next day got a horrific migraine. A couple of days later I all of a sudden felt incredibly exhausted and could hardly stay awake at work and by the time I got home I felt worse than I had felt in ages with headaches, acid reflux, exhaustion, and an overwhelming feeling of being terribly ill. Strangely, no stomach issues, though. Perhaps my symptoms are changing over time and the most common symptom, stomach issues, are being replaced by the headache and fatigue. I also avoid dairy now since it seems to cause terrible joint pain. I think my times of eating out are soon gone because every time I do (even when I don’t cheat), I get sick. :-(

  84. Okay, so I started eating wheat stuff pretty heavy on Friday the 2nd, ate a lot each day until Tuesday night and then had bloodwork drawn on wed the 7th. My Dr. is testing me for celiac, thyroid disease and lupus. Hopefully I ate enough wheat to cause a reaction if I am celiac, since most people react to it right away I figured that I would be good with 5 days of wheat. If the celiac comes up negative I may have myself tested for the gene since my dad has been diagnosed via biopsy. If it is possible that I can develop it I would like to stay away from wheat as much as I can. I will have the results on April the 3rd and waiting quite unpatiently until then!

  85. I am so glad that I came across this post. I was diagnosed with thyroiditis and autoimmune IC (a bladder condition associated with gluten/wheat allergies) back in July of 2011. I finally went gf in Sept after resisting. I didn’t realize how sick I’d been until I started getting better. Well last night I decided it was ok to eat my sons pizza crust. I think I was curious if the gf was really why I’ve been getting better. Well needless to say I am sick as a dog today. I woke up feeling awful. My stomach is distended and painfully bloated, my torso is covered in hives, everything feels stiff, my nose in running, I keep burping, and I’m nauseous. This is horrible. I am never doing that again. I haven’t eaten anything all day today and it’s almost 6pm because I am so nauseous. Also because I have IC my bladder is now inflamed and I have been having to pee every 20 minutes or so since I got up this morning. I’m worried that I might get dehydrated so I’m forcing water down. I have never been tested for Celiac although my doctor thinks I likely am. Since I was already gf for the IC testing for Celiac would have been useless. Does anyone have any suggestions for how I can feel better today? Do I need to just wait this out?

  86. I get the flu like symptoms. They can come in as little as an hour and last for about 24 to 48 hours. I have also noticed pain under my arms. In the axial region. I thought I was having a heart attack when this began. I think its my lymph nodes reacting to the invasion of gluten. No energy what so ever. Bloating sometimes with no relief and diarrhea on other occasions. I get really depressed too. That one is big. Chills that feel like a fever but with no fever. I find it hard to eat after being affected by gluten. My throat seems swollen and I find that most of my food I had eaten is not digested when it comes back out. TMI sorry :) I feel for everyone who suffers from this.. it has been a difficult experience. And a foggy brain.. I think that is from the lack of nutrients being absorbed… that sluggish flu feeling.. ugh

  87. Anyone else besides Angels experience swollen lymph nodes/ Makes me wonder cause both my daughters have complained of this.

  88. I also suffer from Hypothyroidism. It has been a very fun journey to say the least. I have to say I have learned so much about my body and what we put in it and how it can effect our ability to live.. better yet thrive. You have to be so careful about what you eat out there now. With all the GMO happening, I think that has something to do with the increase in allergies. I did not have this problem as a child. My mother would make wheat bread all the time.. none of these symptoms. Now if I ingest it I swell inside and out. My brother has always had asthma. The doc asked him if anyone else had allergies and he said no. The doc said they just have not discovered them yet. I feel its true. Your body is always changing to adapt. If they are changing our food with genetic engineering then it would make sense that our bodies would reject it. Just some of my soap box theories :) My lymph nodes act out quickly too. Actually went to the hospital on many occasions thinking I was having a heart attack. My heart would palpitate and it would make them think something was happening as well. It was gluten and dairy all the time.

  89. My kids all had different symptoms (eldest – tummy, followed cumulatively by leg and then also by headaches; 2nd child – 3 months of diarrhoea but no parasites, and he’s turned out to be lactose intolerant like his father; and 3rd child – damaged enamel, somewhat odd stool and small white pimples on his arms like I had as a child). I was “told off” by a pediatrician for putting my children on a gluten free diet, because it’s “expensive, inconvenient and then they would not know if they indeed had an issue with gluten;” he didn’t even ask me why my husband & I had chosen to do so. This conventional medical standpoint, that requires confirmation by a biopsy of the small intestine before EVER going gluten free, is somewhat like walking across a street on a green light despite seeing a car heading through red: is it better to be “right” in terms of conventional diagnostic practices, or to be well? I would rather not compromise their physical and neurological development when evidence and family history suggests that gluten is a problem. My children may well decide to challenge the diet at some point. They will be well-placed to gauge and to express their reactions at that time.
    I am personally a rubber-stamped Celiac, as are a few others in my direct/extended family, and never cheat on my diet. Even people who have no apparent reaction or are completely asymptomatic have been shown to do damage to their ever-important villi. Becky – PS: foods labelled “gluten free” in Canada and many other places can actually have 20 parts per million of gluten, so if you are noticing a reaction or do not feel well, you may wish to eliminate packaged foods or at least try to seek out dedicated gluten free production facilities (with the hope that their source materials are uncontaminated).

  90. My reactions aren’t that extreme yet. I am self-diagnosed gluten and lactose intolerant. My doctor says its IBS since my barium swallow test shows spasming and I have a history of anemia.

    It started with years of being bloated, never being able to suck in my gut. My metabolism crashed and I gained an extreme amount of weight that I couldnt lose. Next symptom to show was faint nausea after eating, then I started getting stomach aches and cramping. Shortly after noticing more of these symptoms, I connected that I often get gas about 20 to 30 minutes after consuming gluten or dairy products. I have been gluten free for a few months now, but not completely lactose or dairy free yet which leads to confusing food reactions. The longer I am on a gluten-free diet the more I see reactions when I screw up. It took about 2 months GF to get past the extreme fatigue and need to sleep 10 or more hours a night so I am not going back. That said- because its not celiacs or extreme- I am sloppy about ingredients like modified starches and hydrolyzed products since there is some discussion over ‘are they’ or ‘arent they’ gluten.

    I am not convinced that my intolerances are limited to milk and gluten since I react the odd time when both dairy and gluten are excluded. And its sometimes controled foods that I make at home, completely from scratch so I know the ingredients.

    My reactions to gluten are: headaches, randomly- extreme pain right behind my eyes that never progresses to a full migrain. Anxiety or depression. Burning and red face. I get really sweaty, have to urinate more frequently, and this usually leads to mild dehydration. (I actually spent a couple years trying to find the cause of my chronic dehydration before I started to suspect my diet.) Stomach pain and cramping. Sometimes mild nausea. Need to sleep sometimes after eating. Brain fog or the sensation of being on drugs. Inability to walk in a straight line. I only experience constipation if its combined with not drinking enough fluids in a day, something I am hyper-vigilent about since I have/had chronic dehydration issues.

  91. I am stillworking through all of my issues, but so far I’ve been diagnosed with several food allergies, IBS, and gluten intolerant. When I get glutened I immeduately feel dizzy-ish (not like the room is spinning, but sort of like I’m looking in a fun-house mirror -a bit warbly!). Then within a few hours I get really crampy and gurgly in my gut. For about 4 days I have these intestinal symptoms plus soft stools (WAY more than usual), and frequent urination (5+ time per hour). Thanks for starting this discussion – its nice to compare with others.

  92. Becky…Swollen lymph nodes were the first symptom that alerted me that something was wrong 15 years ago. I scheduled an appointment with my doctor and by the time I went to my appointment 2 weeks later my skin on my lower back had broken out in blisters. My doctor looked at them and told me I had shingles. He gave me medicine, which I took with no relief. I kept getting the blisters and they itched like crazy. I ended up going to another doctor a while later and got the same diagnosis from her. I knew the diagnosis was incorrect because the medicine never helped. I suffered for 13 years before finally going to the right doctor. As a child I had swollen lymph nodes under my ears, they would swell to the size of grapes and they were very tender. When I scheduled the appointment with my doctor for swollen lymph nodes, it was different. The lymph nodes in my groin, right where your legs meet your pelvis were swollen and aching. It was pretty painful. I have been gluten free for approx. 2 years now and no longer get swollen glands. If I get an accidental glutening sometimes they will swell up.

  93. I noticed a lot of people talking about frequent urination after being glutened. Is that a reaction to gluten? When I told my doctor about frequent urination we traced it back to MSG. Before I cut out MSG or if I got some unknowingly, as soon as I did I would have to pee about every 5 minutes with a full bladder and that would go on for at least an hour.

  94. Teresa,

    What other symptoms did you have before going Gluten free? Any problems with teeth, hair, muscles?

  95. For several years now I’ve had some boutd of frequent urination (prior to going gf). I’d pee constantly & have VERY sudden urges! My reg. Dr. called it ‘bladder spasms’ and gave me a trial (7 day) pack of Detrol. It went away each time. I now wonder if these had been times when I’d been particularly heavy handed with the gluten!

  96. I am self-diagnosed. After years of doctor’s visits for fatigue, sinus problems, inability to build muscle mass, and even psychiatric evaluation ending with a bi-polar diagnosis, I began a Paleo diet as last-ditch attempt to eliminate any allergies to wheat or dairy. Within 2 weeks I was a different person. I have narrowed down severe fatigue depression, and acute sinus problems to dairy. Gluten causes me recurring flu-like symptoms and inflammation which leads to TMJ-like jaw popping and awful bone pain.(both dissapear when I’m gluten free and return quickly if I eat it) In addition I become very irritable and sensitive to sound. I am slowly recovering from my last gluten mistake – I’m in my 4th day of flu-like symptoms (brain fog, migraine headache, and fatigue).

  97. I am not celiac but have a gluten intolerance and I find that after eating something with gluten i immediately get really bloated. I have a smaller frame (weigh around 110 lbs 5’4) and my stomach goes from being flat to looking 5 months pregnant, sometimes a pair of jeans worn prior will not fit the same day after the incident. The bloating lasts about 2 days afterwards. I also cannot go to the washroom afterwards for a few days, which makes the bloating worse. I get anxiety and depression. I feel as though I am in a haze afterwards. For some reason I feel as though if I eat more gluten when I accidentally do, the pain will go away. I get cramps too and I feel as though the insides of my lower abdomen are pulling and twisting. My skin also breaks out within the week of eating gluten. Does anyone know of any remedies to relieve the bloating afterwards for in the future because I find it unbearable ?? So far cardio is all that works, but only minimally.

  98. @ Penny. This is not a cure, but if I feel like I’ve accidently been “glutened” I take a lot of a probiotic product, what ever I have in the house. I find that the probiotic keeps my intestine from shutting down totally. Before I had a diagnosis, I would take normal stomach medicine (Rolaids to Prilosec) but they all slow the digestive system down. The probiotic seems to act as a laxative and speeds up my intestinal track, ridding it of the gluten that is causing all the symptoms. Wouldn’t it be nice if there was a “gluten-aid” like there is lactaid?

  99. I instantly get horrible bloating, then a “burning-aching” feeling in my colon. Does anyone else get this? It gets inflamed and I can barely even sit down! I also have IBS. I was diagnosed with a gluten allergy when i was 6- among many other allergies.
    My other symptoms are heartburn, nausea, migraine headache and swelling/aching in my joints and muscles. In most cases, I get so nausea and acid reflux that I must lay down. Although sometimes I won’t feel this last reaction until the next day. By the next day, my body hurts so bad it’s like I’ve been hit by a terrible flu bug! I can’t even get out of bed when this happens….I have facial/jaw pain that Advil won’t even take fully away. My tonsils will swell up and my lymph nodes also. I also have constipation for weeks, and my skin breaks out with acne (that includes boils)!

    It’s terrible! Even a single bite of gluten- or a trace amount of it does this; like Alison said! I’m so sorry to all my fellow anti-glutens who also deal with similar reactions. :(

  100. First, thank you for this sight, and to all the people sharing their experiences. I went to my doctor two years ago, broke down in her office (which is wholly inappropriate behavior where I live, in Switzerland!) and asked to go on anti-depressants. Since moving to Switzerland two years before, I was an emotional wreck: unbelievable mood swings (mostly down), so unhappy (but unable to verbalize why), exhausted all the time… and with two small boys at home with me, it felt unbearable. I complained that I always felt ‘bloated’ and she gave me a disbelieving look. (I’m 5’8″ and 112 lbs and yes, I WAS bloated). She gave me a blood test and found I was iron anemic and had low B12. There was NO discussion about WHY I might be anemic! I had an iron transfusion (and was allergic to it; that was fun) along with a B12 shot. I felt a bit better and got on with life. 2 years later, after roller coaster depression and exhaustion, I found a new doctor who also discovered I was anemic: my iron count was 4. Yes, 4. But all of my other numbers were fine. She prescribed another round of iron transfusion (the kind I am not allergic to) and, clever woman, decided to find out WHY I might be anemic. Two blood tests later, she called me to confirm Celiac disease.
    I am just starting to eat GF. I made pancakes this morning with SCHAR flour, which is made from corn, and felt like someone dropped a lead balloon in my stomach. I’ve had a gurgly bloated gut all day. Now I’m wondering if my issues don’t end with gluten.
    I know that this is the start of a serious adventure!

  101. First, Rebecca and others, you need to keep in mind that Celiacs is NOT an ‘allergy to wheat’. Its actually an autoimmune disease. Avoiding all gluten and cross-reactors is the only treatment for it at this time. I think that is the mind set you have to have starting out. You may react to just about everything when you start because your body is trying to adjust to the changes. Often times doctors will start you on exclusion diets that cut every possible food you might react to, after a period you slowly introduce foods and test your reaction. You will get much better feedback from your body this way than cutting one thing out at a time.

    This is the best video I have every found to explain Celiacs and Gluten-sensitivity:

  102. I have been gluten free 17 months now and have found that I can not eat dairy or any corn any thing that I do not get gluten like reaction. Of course I went better then 20 years not Dx. Still healing from the damage but don’t look to ever eat gluten, dairy or corn again.

  103. To Rebecca: Congratulations on getting a diagnosis — that’s a start! As for the corn, a lot of people find that there are other things they can’t digest well due to the damage to their small intestines. Dairy is often a problem, for example. It may be that you’ll be able to eat corn eventually, but avoid it (and anything else that troubles your system) for now at least. You are on your way to better health, and thank goodness for that new doctor!!

  104. @gailstorm & mpv61…I’ve been GF for almost 4 years! And yellow corn used to bother me, but now I have no problems at all with it. I just remembered when reading your posts about my stomach hurting sometimes when I had corn chips, unfortunately now I can eat as many as I want!

  105. Becky…Sorry for the delay in replying. I always had dental problems. While my sisters had beautiful teeth, even my baby teeth went bad. As I got older I would be even more particular about my teeth, brushing them 3 times a day, flossing every time after I ate, using listerine at least a few times a day and going to the dentist every 6 months for cleanings. It still did not make a difference. My gums were receding and I had cavities every time I went for a cleaning. I checked with my dentist to make sure I was flossing properly and brushing properly. Nothing mattered. The last few years before going gluten free, I was getting canker sores mostly on my tongue – all the time. The dentist suggested that I try a rinse. Nothing helped! Shortly after going gluten free and I also stopped using fluoride with the recommendation of my good doctor, my dental problems ceased! My canker sores were gone! When I went to the dentist after that, they commented on how everything was looking excellent. I told my dentist everything needed to be gluten free and fluoride free too. They were surprised but they saw the results too.

    I never had any issues with my hair but I have read that if you have celiac or DH and are still consuming it, it can cause Alopecia or alopecia areata, which is hair loss either entirely or patchy and it can be anywhere on your body.

    As for my muscles, I was always very physically fit, played a lot of softball, worked out at home 3-4 days per week and was very active. I always had great muscle tone, until about 5 years before going gluten free. I couldn’t build muscle to save my life. I’d go to the gym, work out at home and walk on the treadmill and kept gaining weight and losing muscle strength. I thought I was eating right (healthy according to the food pyramid). Shortly after going gluten free I was dropping weight and able to build muscle again.

    I also had neck, back and shoulder pain, numbing pain in my left leg and sometimes in my arms, bone pain (I thought I had cancer or something-it’s not normal for your bones to hurt!), frequent urination, chronic fatigue, oh and I am short too (which can be an effect from gluten), every time I ate my nose ran (which my doctor says is a symptom from eating something that your body cannot handle and the reason it runs is because it is trying to get rid of it), painful periods, irritability, vitamin K deficiency, anemia and brain fog. There’s probably more, but they are gone now so it’s hard to remember them all.

    What kinds of things are you experiencing?

  106. The blisters on my hands are the indicator and can occur within an hour (wheat and dairy) or delayed a day or two with other intolerances. Wheat and dairy are the ones that gives me the WORST symptoms. Eye twitches, BAD DH blisters (I mean bad, even on my scalp) and I drop weight. Im only 110 lbs @ five foot nine and I CANNOT afford to lose more. Sometimes I cry about it.(I do not weigh myself it’s terrifying) constipation is a BIG problem and the number one bad reaction is the anxiety and emotional distress.

  107. I am self diagnosed and have been GF for 2 years, having suffered from horrendous diarrhoea, nausea, stomach pain and terrible acne for many years. The symptoms worsened 4 years ago and included vomiting and blackouts. On 3 occasions I have had a reaction that included terrible itching, heart racing, pounding headache and the inability to walk in a straight line. My problem is that no one believes that being coeliac can cause blackouts. I had a brain haemorrhage 4 years ago and have regular scans which are clear, have also had heart monitors and epilepsy tests but again all were clear. Does anyone else suffer blackouts

  108. Within 20-40 minutes of eating Gluten my stomach starts churning loudly and I get stabbing gas pains, usually followed by loose stools or diarrhea. I get sleepy and usually have a headache, and feel sluggish, and generally just want to go to bed for the rest of the day.

    I’m new to being Gluten Free, so it’s taking time to figure out exactly what has gluten in it and what doesn’t. And I sure can tell when I’ve missed something and it has gluten in it :(

  109. This thread was very helpful. I have been eating gluten and dairy free for a short while not because I’ve been diagnosed but because I always felt awful and I wanted to clean up my diet. Last night my boyfriend wanted pizza so I said sure, I’ll have a slice and live a little. Bad idea! I felt tired almost right after eating, then got a head and neck ache so I fell asleep. This morning I woke up feeling like I had been drinking (which I don’t do either ) and like Igot the flu. My hands are swollen like they use to get with artheritis and I am all sinusy and phlegmy. I ache everywhere. I am hoping to get an appt with my doctor when Monday comes to confirm and also hoping this dreadful feeling passes.

  110. I was glutened last night and hate myself right now lol. It was my own fault, I convinced myself a dish at a restaurant was GF because I was desperate for a carb that doesnt taste like cardboard. GI problems (the big D) promptly follow and stick around for a few days. I also have intense anxiety and depression… But I think the depression is mostly from missing all my favorite foods and the insidious stomach/GI problems that even a small CC can cause. Sigh…

  111. Sandra, it does get easier, but it’s no fun to have a reaction!

  112. Michelle, Don’t eat any more gluten!

  113. Ben, gluten affects the brain so your anxiety and depression could be a reaction from the gluten. The correlation is well-known in the celiac/gluten intolerance world.

  114. I have been gluten free for 2+ years. Vegetarian for approx 16 years. I had joint pain about 2-3 years ago after major stressors (injury and sudden/tragic death of my father) in my life. I basically had a nervous breakdown and had to rebuild myself, emotionally, physically as I was grieving and still recovering from my injury. It’s taken 5 years to recover.

    The joint pain slowly went away after 8 months of being gluten free. I would still get some swelling in one finger but overall felt pretty good. I think I may have had small doses of gluten (by accident) over the past two years but no major issues from it that I could put my finger on. Recently (about a month ago) I had thai food three days in a row (left overs!) and had diarrhea for about 5 days. No stomach pain just couldn’t keep food in me. I took a high dose probiotic for about 3-4 days.

    It was around that time I started to feel joint pain. I was also eating lots of salads with balsamic vinegar (daily) and realized maybe that could be it also. I was feeling good after several weeks of juicing, eating veggies, cutting out vinegar and dairy. I also increased my thyroid meds. After a week of feeling good (on vacation no less) I think I ingested either gluten or hot peppers/vinegar and then had vinegar again (duh) and the pain started to get intense. I’m taking daily baths in magnesium oil and sauna to detox it all out of me. I don’t know what kickstarted this pain again and it’s driving me nuts. I think I may, along with my gluten intolerance and thyroid issue, have candida issues – and maybe the vinegar causes it to go crazy.

    Or, I was glutened (again) at the airport on our way home and started this mess of joint pain again. Worried, but trying to stay positive and eat very clean, read every label and detox best I can. Just interesting that the pain went away for about 8 days and now it’s back…how long can accidentally eating gluten cause a reaction. It seems others have not just gluten issues but other dietary allergies along with it – how long do “those” symptoms last as well. Just trying to figure this out as I go along and share my story to help others! Thanks… really like your blog!

  115. My gluten reaction causes SEVERE shortness of breath, all my body itches, my stomach bloats to 9 months pregnant!!! I’m a chef, so it’s getting a little difficult in my job because I have to taste everything… now my boss is understanding and I’m not tasting anything with gluten.
    And I have a question, can this gluten attacks worsen an existing heart condition?

  116. To EddiePR:

    If you have celiac disease, you shouldn’t be working with wheat flour. It’s in the air and stays in the air for quite some time and it gets in your mouth/nose and into your gut.

    My doctor basically said, “Don’t go on any bakery tours and don’t work with wheat (rye/barley) flour.” I won’t even make a box of gluten brownies anymore.

    I know that would be terrible to have to change your job because of gluten, but it might be the case. You may want to start looking around to see if there are any GF cafes in your area. They’re few and far between, but they do exist.

    If you don’t have celiac disease, I don’t really know if the same rules apply.

    As for the heart condition, you should probably ask your heart doctor, your gastroenterologist, your general practitioner, and everyone you possible can until you get someone whose answer you trust to be well-informed.

    Good luck!

  117. To EddiePR
    You ask about the heart and gluten. You might want to take a look at the book “Wheat Belly” or check out the Wheat Belly blog or Facebook page. Wheat Belly was written by a cardiologist who tells all his patients to get off wheat along with a few more things. He says he is seeing great improvement in his patients health.

    I had heart bypass 12 yrs ago and before I went gluten free 9 yrs ago I was short of breath and having pitting edema in my legs. My doc thought I was blocking again. I dropped gluten and those symptoms and many more totally disappeared. I can’t prove it but I truly believe that the inflammation from gluten played a large part in my coronary artery disease.

    I don’t have CD but I am very gluten sensitive. I have been glutened by air borne gluten. I think it is important to be 100% GF whether you have CD or GS. Wheat is bad for us in so many ways.

  118. I have a question Few months back I had a problem with vomiting and the other. After many visits to the doctor someone suggested it could be a gluten intolerance. So I stopped eating foods with gluten and the symptoms stopped. But why after 40years the sudden violent reaction to foods with gluten?

  119. To my sisters and brothers from another mother,

    I echo your symptoms and pain. I have multiple intolerances and am getting to the point where I’m reacting to just about everything. My reactions are elevated heart beat, extreme bloating, burning, stomach pain, brain fog, extreme fatigue, highly negative depression and diarrea. If you are like me the #1 thing you want if your symptoms are not under control is answers. I was able to find some answers – I recently took the ALCAT test which measures your white blood cell reaction to different foods and food additives. What I found that I had not considered was that in addition to gluten and eggs which I was aware of, the test results indicated I was also severely intolerant of Soy and several food preservatives. Boy if you think going GF is hard try avoiding all preservatives! I am not saying it is a magic bullet but if there’s a chance it can help someone else in the way it has helped me, please, do yourself a favor and consider it. As part of the test they will come to your home or office to collect blood samples. It includes phone consultations with nutritionalists to help answer any questions you may have. I found it cheaper to order from a company in California rather than directly from them. I used Accessa Labs for reference. http://www.accessalabs.com. It is not cheap but if you are like me and are desperate, please consider it. I have already verified several of the results were spot on. Cashew nuts, for example, came back with a reaction. I thought it was odd, so I bought a jar and had a few handfuls. I reacted to the cashews just as I did to gluten, same old feeling of being glutened.

    Good luck to all of you, I sincerely wish you all the best in your efforts to live a normal life with our… abnormalities :)

  120. I have been 98% GF for two years (occasionally cheat with a bite of amazing bread or piece of dessert) now but recently went in to the doctor’s to get a host of allergy tests. I didn’t know that I couldn’t be tested for reactions to gluten unless I ate it again (or so was told by the doctor) and I very happily followed her prescription and ate gluten for almost 2 weeks before going back for the blood test (mostly bread, pizza, regular beer!). The last day that I knowingly ate gluten, I developed a severe cramp in my upper stomach, which then traveled down my left side into, presumably, my intestines. I had that cramping for 5 days to the point where I could barely eat or do much besides lie flat on my back. Got the blood results back which confirmed what I already intuitively knew: I do not have celiacs but rather am gluten-intolerant.

    It’s now been 10 days since my cramping began (and then lessened) and it’s back and I AM SO FRUSTRATED!!!! I am being stricter than I’ve been in a long time, ensuring that I do not eat gluten, but it’s very challenging to eat because I develop a cramp within 30 minutes of eating. I plan to connect with a recommended naturopath after my wedding in 2 weeks! because no mainstream doctor has been useful to me yet in dealing with this issue. My question to others–is there any specific thing I can eat or drink to help speed along the elimination of the remaining gluten and/or help to lessen my discomfort? Have I done irreparable damage to myself by going so wholeheartedly back to a gluten diet for those 13 days? I would appreciate any and all feedback on these questions. Thank you!

  121. Dee, I had candida and my doctor told me not to eat fruit or any kind of sugar. It helps me within a day or two. Hope your feeling better:)

    On a different note…One thing I think that can be overlooked is that celiac damages the small intestine which hinders us from being able to absorb nutrients. We have to make sure we are GF and taking vitamins to replace the ones we are deficient in from the disease or the pain will persist.

    I just came across an interesting book called “Recognizing Celiac Disease” Has anyone read it?

  122. @Stephanie, try probiotics, or PGX Granules(at most health stores) PGX is a high fiber pack of granules that is used mostly for weight loss, fills you up, but it has other health benefits as well, and whenever my stomach/intestines are out of whack this always seems to help smooth everything over. If you are going to try it do so several days before your wedding, it may make you a little gassy/bloated. In which case you can take half a pack at a time. They do have a website so you can google PGX and check it out. I mix it with an orange juice/soy/yogurt smoothie, it taste like whatever you put it in. Good luck to you.

  123. Stephanie, sorry to hear you are having difficulty getting over a gluten challenge. I know others who have had this problem too.

    You may want to stick with simple foods and leave out all grains, beans and dairy. Try making a bone broth. It is very healing to the lining of the intestine. Here is one recipe but if you use google, you can find many. http://nourishingwellness.com/2011/12/the-healing-power-of-bone-broth/

    Hope you get to feeling better quickly.

  124. @Stephanie – the test you took was an IgG4 antibody test. The reason you have to eat the offending food first is because your body doesn’t produce the antibodies until it detects the “foreign invader”. However, two weeks probably much more than is needed to register antibodies on the test. That’s why in my post above I recommended the ALCAT test because you do not have to poison yourself to get test results, and it’s accuracy is excellent. There is some debate on the accuracy of antibody tests but it is another piece of data to arm yourself with. Combine it with the ALCAT and you’ll have more answers. Theralac is the best probiotic on the market in my opinion, and Digest Gold makes the best digestive enzymes. Google products like Carnosoothe and Perm A Vite, they also can help heal your insides. Keep in mind, many of us who are intolerant of one thing are likely intolerant of other things as well – our immune system is not wired correctly. You probably have inflammation as well which is one of the roots of so many evils, so check up on products like Wobenzym and see if you think that would interest you. My most recent poisoning incident took close to two weeks to recover from, so hang in there, try to reduce your stress and congrats on your wedding!

  125. I have Diverticulitis and every thing i ate went through me and terrible cramp pains my life revolved around my bowels [if you no what i mean] that went on for a long time.Then i was told to go on wheat and gluten free foods and i am so much better can go out and not worry about any thing. I do find the food very expensive but the main thing is my life style is much better.

  126. Your reaction to gluten is exactly what has happened to me twice in the last 3 months. I am not sure what the offender was though, as I have always been able to tolerate gluten products. Could I suddenly not be able to, or to have a food allergy? After eating dinner and beginning a dessert each time, I could not finish the dessert; I felt incredibly dizzy first and then all the other symptoms began as your described. It lasted about 3-4 hours. I have been able to eat all the ingredients before though, that were in each of the desserts! Could it be wine? I had wine both times and I hardly drink alcohol, but again, I have had it before several times. It is very scary because I get anxious about eating in public now and then!

  127. It’s very helpful to read what symptoms other people have. I was recently diagnosed with Lupus. My doctor advised me to go gluten free (even though the blood tests came back negative for intolerance). The majority of my joint pain and fatigue disappeared after about 10 days. Over the weekend I accidentally ate gluten. I have had the big D for three days, stomach cramps, fatigue, and some joint pain. I also have more sinus and allergy issues. This latest bout has only strengthened my resolve to remain gluten free. I don’t care to spend 1/3 of my life in the bathroom.

  128. Wow…All of these responses and so far I’ve only seen a couple that are similar to me.

    I’ve not been diagnosed with anything. Nobody has ever suggested it or suspected it. I was diagnosed with fibromyalgia maybe 10 years ago; a whole host of widespread issues and we asked about fibro bc my mom has it. The thing is though….that for both my mom and I, we do not respond to 90% of the typical fibro treatments. It’s frustrating. I even went to a doctor (granted, a rheumatologist) who was supposed to be good at finding the odd things because we thought maybe I don’t have fibro or at least there’s something else going on. He found nothing except a bit of a Vit D deficiency. I was disappointed. Yet still….nobody mentioned gluten.

    I only went off gluten because I started DDPYoga recently (you might have seen the youtube video of Arthur Boorman, the vet who couldn’t walk without braces and canes and is now a limber little thing) and it was highly suggested by a bunch of programs founders that we should ditch gluten and dairy and soy. Many others doing the program proclaimed how wonderful they felt. Despite not wanting to, I went GF. I didn’t have any miraculous cures yet but I suppose it’s a slow road. I do feel better, though. I’ve been GF for 7 weeks.

    Twice now since going GF I’ve had gluten. Knowingly. The first time was because I’m a food addict and the food was there. I couldn’t resist. The second time was 2 days ago. Part of the reason I did it was the food addict in me, but mostly it was to test and see what would happen. I thought the first time might have been a fluke. But no…the same thing. It felt just like a fibromyalgia flare-up, which can feel like the flu. At first I thought I had no symptoms the first 16 hours, until I read here and see that anxiety is a symptom. I woke up numerous times in the night, once from a panic attack and it “manifested” in my bad arm. It feels like the muscles themselves in whatever area is vulnerable are also irritated and almost itchy. I have to grab a workout squeeze ball and tire out the muscles, and then take something for the severe anxiety. The next day I felt ok at first, chalked up the bit of tired and sore to 4 hours sleep on the couch. Until that evening….when the flare-up hit me big time. I’m not sure why it took so long to hit me like that. No GI problems. Tired, cranky, whiny, anxious, sore, achey…would have killed for a big tub to soak in. I broke down crying at one point.

    Next day? I feel pretty damn good. It’s all out, it seems. I exercised and had the energy for even more time this morning. I’m curious that I seem to get no GI problems, but perhaps it’s too early to rule that out. Perhaps in 6 months time my reactions will be more like those above me have described.

  129. Thats crazy, I just recently for about a year now have been gluten free, thinking i have a gluten intolerance with all the signs and symptoms. But if i compare all of you, and your friend Shiela’s, i get all of your symptoms and half of hers. i just had an incident a couple nights ago and it was only from cross contamination. It gets worse and worse each time i have gluten. I feel a world of difference being gluten free, and i honestly prefer it! :)

  130. Have been reading posts for about 8 months since I went gluten free last October, pretty much as a hunch I had an allergic reaction causing severly itchy skin, but when i went gluten free many, many, many symptoms totally unrelated seemingly to bowel and stomach problems went away almost totally including joint aches and pains, awefull restless leg syndrome (very painful aching calfs), bloating legs and feet that I did not even notice were bloated (thought it was just fat!) until I went gluten free. Posted a page somewhere on this site I think, will post a link if I find it with my full story, but oh my goodness everyone and anyone should at least try a gluten free diet to see if their life improves!! I have read so many tetimonials – most doctors I personally think don’t have a clue, or don’t care. I had an upper GI and a small intestine biopsy after geing gluten free for 6 months or so, negative of course, plus genetic blood tests for markers, also gave a very limited chance of having celiac, but oh my goodness again!! Whe I asked the clinic about the biopsy results and if it was rated for different conditions of the celia, they had not a clue what I was talking about. Plus only one spot biopsied, but I don’t need doctors’ confirmation of my sensitivity and/or intolerance to gluten – my total life transformation is proof enough to me. If I feel better, a bazillion symptoms of pain and discomfort are GONE, I have more energy than I can ever remember, and on and on and on, just for going gluten (and oats) free, pashaw (sp?) to the enterologist who casually said if you feel better gluten free, stay gluten free. Waste of my time and money going to him!! Now that I have been gluten free for 8 months, when I do get glutened intentionally (oh so little for oh so only a few bites) or unintentionally, I do now have bowel responses almost immediately, but once all is “cleaned out”, fell well again. If I have wheat in any form, severely itchy skin only relieved with high doses of benadryl, and horribly aching leg muscles. Still have some fibromyalgia of hands thinking some gluten in some of my medications, but relatively minor compared to how bad things used to be, hands, knees and feet – thought I had horrible arthritis, all but minor hand tingles are now gone. So, try it, if it works in the least, it is worth it! More, and more gluten free products out every day, and cooking becomes easier when you learn to read ingredients and keep your food fresh, and as pure and gluten free as possible. Wish I could advocate more!!! Hang in there all!! I am 56 and feel better than I can ever remember in my whole life!! Thinking I have had gluten sensitivity and/or intolerance for decades!! Best wishes to sll! SO thankful for this site!!

  131. P.S. Sorry, NOT fibromyalgia of hands!! Neuropathy of hands, I think! Not a medical person, but tingling and numbess in hands and fingers, usually goes away if sure no gluten or wheat exposure at all!! Sorry my medical terms may be way off but hope I get the general ideas across! Thanks!!

  132. My original post is above – search for “Peg, on November 6th, 2011, said:” :-)

  133. I have celiac and have been off gluten for a few years. Prior to diagnosis i had no symptoms. Now if i eat gluten i get an instant low grade headache and within 2 hours get the sour pre-puke mouth. Around hour 4 i finally throw up by which point there is nothing in my stomach and the pain is intense and unlike regular puking. It feels as if i am trying to throw up my toenails. After vomiting i am fine and good to go, but i would do just about anything to avoid the turbo puke!

  134. “Turbo puke” – good term Mike!

  135. Just wondering if anyone has used products like Glutenzyme, Gluten Ease, Gluten Digest, etc. with any good results? I usually take 2 – 3 with meals I eat out and sometimes I think they work and sometimes I’m just not that sure. Would like to hear any comments.

  136. I was taking Gluten Defense. It just doesn’t work tho’. I find when I take a quality HCL supplement when I think I have eaten an allergen, I have less reaction.

    Btw, PEOPLE need to stop drinking Aloe Vera. I experienced some really nasty side effects, including bruising for no reason (BAD bruising) bleeding after i’ve cut myself for WAYY too long and the worst rash I’ve ever had.

  137. I had given up gluten I was experiencing bloating and discomfort. I started to get really bad stomach cramps and other symptoms my doc diagnosed me with ibs I didn’t agree with this. the symptoms didn’t get better with meds until I started eating a more natural diet lots of fruit and veg. I have been vegetarian for most of my life but wasnt eating well. No more meds and I have gone back to eating gluten in small amounts and feel healthier than ever. I am starting to wonder if all those gluten free products I had been eating were the cause of my symptoms.

  138. Every now and then I get a severe attack.My whole body gets covered in lumps and I itch so badly that i do not have enough hands to scratch all over my body from head to toe.I have been admitted to hospital on these ocassions and they have given me oxygen because i battle to breath.They also put me on an adrenalin drip.When this starts happening to me i have taken 4 Allergex pills and they still do not help me with this symptom.Please could you advise me on what you think could be the cause of this as i have been to see my G.P. and all he has told me that i must keep an adrenalin injection with me.Surely there must be a resolution to the cause of this.It happens proberly once a month.This attack takes place at anytime,even while i am sleeping.

  139. A said ” I am starting to wonder if all those gluten free products I had been eating were the cause of my symptoms.” GF foods dont have anything in common other than that they are GF- no common ingrdiant at least not the gf food i eat. You might look up the barrel theory that basically says that your body can handle a given amount of toxins(for one toxin is gluten). Once the barrel is full, toxins overflow in the form of symptoms (rash, exima, headache, lactose intolerance etc). Once i quit gluten my asthma, allergies and lactose intolerance disappeared.

  140. To “A”: My experience of going off gluten- actually left me more sensitive for several months. I reacted to everything! Don’t rely only on the data you get from a few weeks gluten-free and don’t switch to a reliance on GF processed foods. (You could be switching from one ‘poison’ to another unknown ‘poison’ which skews your data.) Best medicine is to go to natural foods that rot, and give enough time for your body to heal before making judgement about what is happening. It could be a combo issue with gluten AND grains (which are commonly used for GF substitutes).

    Forums are helpful but they are not definitive. There is no cookie cutter model for gluten intolerance. We are biological beings being having biochemical reations to everything that goes into our bodies. Dose can also make a difference.

    It honestly took about 2 months for me to start feeling more like myself again, and to stop having contrary reactions to food. 7 months in, things are stabilzed, I can see that my reactions follow a 2 day pattern. Anxiety starts 12-24 hours after ingesting small amounts, signs of dehydration are present. Blinding migraine-esk headaches follow 24-36 hours after ingestion. Sometimes my sides itch but I don’t get rashes. Stomach does not always react now unless I eat significant amounts of gluten- and food combinations do amplify the reaction. High sugar or dairy with the gluten usually causes a strong reaction within 20 minutes of ingestion. So no donuts for me! :)

    Since reaching the 6 month elimation mark- other things/issues have become clear enough to be addressed. Things that before were unnoticed because the gluten issues hid them.

  141. I have been gluten free for 2 weeks. Felt so good, energy like I’ve never had and my skin totally cleared up. I have dermatitus herpetiformis. this has been my only symptom of CD.
    Looking for somewhere to eat out and Dominoes Pizza had a sign advertizing gluten free pizza. I was weak and could not resist. That was my first reaction to gluten since I stopped eating it. My reaction was aweful. No energy at all and my skin is unbearable. My reaction to gluten before I went gluten free was not that bad. Do the reactions get worse as time goes by in your gluten free lifestyle?
    Does anyone have something to share about DH? I have been to at least 4 Drs., no one could diagnose me. I have had the sores for 3 years and kept searching for the cause, kept coming back to Celic website and discovered DH. Thank you God for leading me to the Celiac.com website so i could diagnose myself. Anyone know how long it takes for the DH to go away? I have been on Dapsone for 2 weeks but don’t want to stay on that medicine. Too many side effects.

  142. I have dermatitis herpetiformis. (gluten free for 3 weeks) I am self diagnosed, no other symptom of CD. I have been to many drs. and they could not figure out what my skin problems were. For some reason I kept returning to the website for CD, finally saw picture of DH and knew what i had. I have had the sores for almost 3 years, i am on Dapsone but do not want to continue because of side effects. My skin has almost completely cleared in 2 weeks of Dapsone until i accidentally ate gluten 3 days ago. My skin is driving me crazy and I have litterly no energy. This reaction was worse than any I have had before. Is that because I have been gluten free for 3 weeks? Just wondering if these episodes get worse. I would love to hear more experiences with DH. I am so thankful God continued to lead me back to CD websites. I have prayed for a diagnosis for a long time. My sores are on my face.

  143. I was glutened a few hours ago. I found this page and felt so much better just by knowing I’m not the only one!

    So my first symptom was about 1 hour: indigestion (felt really full, was burpy and felt very uncomfortable and bloated).

    Then after 3 hours I had an “attack” of intestinal cramps. Then I had to empty my intestines very painfully.

    Then I had hot flushes, drowsiness, shortness of breath, accelerated heart-rate, nausea, gases, burps and head twinges.


  144. Hi,
    I was recently diagnosed(3months ago) and I’m nearly 50. Going on a gluten free diet suddenly made better so many problems I’ve had all my life(skin problems, aches and pains, headaches, brain fog and the list goes on and on)
    I just got back from Bali on holiday where I had a not so nice experience with food. As careful as I was, I think I got glutened almost everyday. Bad stomach problems, headaches, skin problems returned on my hands and feet. Its now 3 days since I returned and my stomach is still upset. How long can this go on for?

  145. James, what really worked for me last time I was glutened was taking probiotics (good bacteria found in kefir, yogurt, or even pills) and also taking 2 charcoal pills on an empty stomach.

    Hope that helps!

  146. OMG where do I start? Since middle school…heartburn. Sinus surgery in my 20’s. Battled with depression. Nothing extreme. Prolosec on and off throughout my adult life. I’m now 37. Two years ago I hit rock bottom. I hate to even mention it, I’m tired of expressing it. Along with nightmare periods, I started having hallucinations about killing myself, understand this was not suicidal thinking. Psych med after psych med, attempted treatment at bipolar disorder for the mood swings and downright nasty tantrums. Come to find out, I’ve been anemic the whole time, likely for the past 13 years. My ferritin was at 3 (three)!!! When things really got bad (two years ago) I was having strange reactions to certain foods. I couldn’t figure out what it was. Doctors responded to me like I was an idiot. I kept mentioning the “high” that I would get with certain foods. I gave up gluten in a desperate attempt to stop the acid. Wouldn’t you know, it worked. Then I had accidentally consumed it. I can feel it in my body within minutes. I feel funny. Then the brain fog comes in. Then the mood swings. The MOOD SWINGS!!!! The weakness. I had endoscopy 2 years ago for the throat spasm I was having. Nothing. The look on my doctors face in response to me asking, “Do I have celiac?” told me that he didn’t even look. Now I sit here trying to figure out the difference with gluten intolerance, Celiac, wheat, etc. etc. still anemic. Seeing a hematologist next Thursday for an infusion since I can’t get my numbers up. Then I’m having ALCAT testing done. I’m at the end of my rope with this crap. Certain people like to ridicule me because I know that I can’t eat gluten. Like it’s a friggin joke that being malnourished made me nearly suicidal. I take absolutely no psych meds anymore. When I’m off gluten I am this amazing person that I’ve never known. I’ve missed out on so much of my children and I’ll never get back the best years of motherhood. It kills me. And yet I still sit here and wonder if it’s Celiac. My gyn never checked my ferritin because he said that my RBC were fine. I’ve lost my faith in doctors. I’ve done all the legwork. If I got all of my copays back for this matter, I’d have enough money for another PROPER endoscopy. Sorry to sound negative. Got glutened 6 days ago. I don’t know where to go from here.

  147. just last night I ate a heavy gluten pasta dish and then left home feeling fine i danced for about an hour then my tummy started hurting and i needed to lay down. soon after that I was throwing up and diarrhea at the same time. I couldn’t walk and had to be carried.(I’m 9yrs old)i felt like I was going to faint. after 20min of sitting down I was feeling fine and could walk again.its ether gluten or the flu… probably gluten.

  148. I think we can drive ourselves crazy with trying to pursue a diagnosis. Celiac disease or gluten sensitivity – the treatment of a 100% GF life is the same for both

    Mucha, yes that is maddening that your doc was right there and did not take a biopsy of your small intestine. But even if it was positive, what other treatment besides a GF diet. Did he do a biopsy of you esophagus?

    There is an excellent post on Mark’s Daily Apple about gluten sensitivity/celiac disease. Also read the comments – so many finding that removing gluten improves their health. The Primal/Paleo community may have it right – give up grains and other inflammatory foods. Just because one does not have CD does not mean that gluten is not setting the body on fire. http://www.marksdailyapple.com/how-common-is-gluten-sensitivity/#axzz25dFJLrpH

    I did do testing through Enterolab 9 yrs ago. I gave up gluten and never looked back.

  149. I’m just wondering what people have discovered for the foods that make their symptoms worse? I have a wheat/rye/barley allergy that makes me itch, sweat, get irritable, and have diarrhea. I’ll get sore and achy a bit. It’s not a severe allergy, so once in a while I’ll eat bread/pasta, etc. despite the effects based on the fact that i love the food. However, when I eat things such as bought cookies or chips (chips are the worst) I get Severe body ache and chills (just like other people have been describing). Other things like the foggy head, tired, headache, etc. A couple of nights I woke up in the worst pain I could hardly sit up. All of my muscles and joints were throbbing. Thinking common sense, it’s not like I did any strenuous exercise. The next day was terrible, I couldn’t pick my kids up without wanting to yell out because it hurt my wrists so bad. I finally figured out the common food I ate after this happened a couple more times. Chips! I have always suspected I may have an intolerance to soy (which the chips have an element of). I can’t understand why I just get itchy and a little sore from eating plain bread, but if I eat these premade junk food produc I have intense pain? Is gluten stronger in these foods? I just wonder what others have the worst reaction to? I get tingling/hurting hands and feet when I eat things such as salad dressings and

  150. Continued…

    Sauces-they make me itchy too so I have cut out a lot of that for a while now buys sometimes I cheat and eat a little bad food and remember why I stopped! I’m going for celiac testing soon, just on a gluten diet for two weeks prior to the test and it’s killing me! If its not gluten problem, has anybody had similar reaction to soy lethicin?

  151. This is interesting indeed. I found out after suffering for over 20 years symptoms of IBS and insomnia aching joints, headaches, nausea etc that I was in fact GI. 12 months after going Gluten Free I feel great, well, not today at least. On sunday my husband and I stopped at our local Muffin Break for a gluten free muffin and cup of tea. I don’t eat out a lot as I don’t trust other people to know what gluten free actually means, but, these people seem to have got it right (usually).
    By about 2pm, 2 hours after eating the muffin I felt like I had “hit the wall”, I could have laid down in the supermarket aisle and gone to sleep right there and then. I struggled to associate the items on my shopping list to the items on the shelf! I abandoned the shopping and went home. I didnt sleep at all that night. The next day I suffered from wind, discrete wind, thankfuly, then early evening the diarrhea started. That continued through the night and next day until about lunchtime, needless to say I didnt sleep that night either. Today, I have had to take a day off work and missed a fantastic course because of it. I am exhausted.
    And yes, I think the Paleo community are thinking along the right lines, very interesting stuff.

  152. @Kendra,

    Make sure two weeks of gluten is enough for an accurate test result.

  153. my reaction tends to depend on what type of food I eat.
    If I eat a bagel…my reaction can usually be the “tired..zoned out feeling”…generally occurs within a half hour. I just want to lay down and curl up.

    I’ve actually been trying to avoid gluten…breads and buns…still trying to figure this out…but…tonight I goofed up and here’s the scoop on that.
    Well…today I bought some muffins for the kids…they looked so good that I had some too. Muffins and some milk..then all of a sudden when I was finished my sinuses were just turned on…coughing…gagging on mucus and ready to throw up.
    I know it’s not the milk because I drink it every single day and don’t have any problems…but I know it was the muffin.
    It is odd that I can have pancakes and milk and not have any troubles, but the minute I try to eat bread or a bun or in this case…a muffin…all h… breaks loose with my sinuses.
    I wish I could understand it all.

  154. Mucha,
    Just stay off gluten — what else is there to do? Who cares what anyone else thinks about it. You know it’s right for you. Live your life!!

  155. I just found out I am allergic to wheat. My reactions were very strange. I would eat and the day after have bouts of diarrhea and while getting this I would break out in hives on my face and lips. Breathing was shallow and my tongue would slightly swell. I would take bendryl right away and within ten minutes I would be back to normal. The doctor thought it might be a combination of foods when eating and leaving my body would create a reaction. So I got tested and the only food that came back on the test was wheat.

    I know if I have almonds or some cheeses I itch, so I stay away from anything that I might set me off. Now I see wheat is in everything and this makes sense to me. So I am eating wheat free about six days a week and sometimes slip but I know I must make the full exit from wheat. Your site is a great help and thank you for all the information. Paulette

  156. My five year old son was sick all the time. To the point of pnuemonia 3 times in 6 months. Was diagnoised with wheat,barley,oats,rye,soy,and peanut allergy. He was put on a gluten free diet. If he eats anything with gluten within 2 hours it turns in shortness of breath,wheezing,extreme coughing,headache,stomache cramps that double him over,leg pain,and lethargic. This can last for 24 hours to days.

  157. Why do I get very painful gums after I eat wheat or milk? (Which I’m allergic to, it’s just that sometimes I can’t seem to stay without.)

  158. I recently figured out that I was gluten intolerant (I probably have Celiac disease, but never got tested). When I was a toddler I was constantly throwing up. It was kind of funny, because it would usually happen after I started laughing or took any sort of transportation, so my family never figured out what was wrong with me. To say the least I was a kid who had malnutrition. I was super skinny, with graying skin and despite all the energy I had in me, I looked ill. Coming from Chinese descent, my parents tried to make be better by drinking Chinese medicines. This stopped me from throwing up, but after that I just started getting chubby. I was never fat or over weight until I went to college and started taking birth control, which some how started up my symptoms of Celiac disease again. When I drink even half a bottle of beer, I have a blotchy redness all over my skin, and bloodshot eyes. I can normally down shots 3-5 shots before feeling anything, so that definitely wasn’t normal. After being glutened, I feel nauseous and bloated. If I try to suck my stomach in I automatically have to run to the bathroom to puke. I also fart a lot. Sleeping isn’t a problem, but waking up is. I feel dead, and I get these eye bags that extend out to my cheek bones (from being bloated) so my eyes feel so much weight that it’s hard to open them. However, if I get enough sleep that night and automatically wake up on my own, I don’t have a problem waking up. I realized that the amount of gluten I eat affects the duration of time I’m bloated for. There was this time that I ate a whole serving of fries and ended up being bloated for days, and remember this clearly because I sadly had a music video shoot while I was still bloated. Then there were others times when I ate a piece of bread, and would be visibly bloated for two or three hours from when I wake up. I also get foggy brained, slurred speech to the point where I sound like a retard. Not great when I get picked on during lectures. I also realized that eating gluten while having a low immune system or eating something that I’m slightly allergic to will magnify my allergies and I will have hives either on my face or all over my body. After two weeks of going off of gluten, I slimmed down a lot, I dropped an entire dress size and my cheek bones were define for the first time in my life. It has officially been 4 months since I have voluntarily eaten gluten. Still slightly new to this new diet, it has been a challenge to find out what I can and cannot eat, and ordering food on days when I’m too busy to cook proved to be difficult. However, I love the new me and I don’t think I’ll ever voluntarily eat gluten ever again.

  159. While a doctor has never officially diagnosed me, my symptoms completely fit. When i first became ill, i had almost all of the symptoms that each individual had in the article. For 2 months while figuring out what was wrong, i would wake up at 3am (if not before but it was almost like an alarm clock) vomiting, then diarrhea for the next few hours. From the beginning of the episode i’d have a migraine (which isnt abnormal i’ve suffered from those my entire life, going gluten free helped tremendously) that would last for the next 3-4 days. During the second and third day i’d get the body aches. Seemed to localize themselves to my spine. It was like i had been in a car accident and had whiplash plus a bruised back. So incredibly painful and no pain medication will touch it. I get the spacy feelings but not nearly as much, and i also get really jittery. I tell myself that it is from the pain, and not being able to relax, but it has turned into a symptom of its own, of course i’ll be getting clammy and feeling feverish during all of this. For me this only lasts for about 4-5 days if i’m strict on my diet after getting “poisoned”. For the week or so after that i’ll have a small incredibly itchy rash on the back of my neck along with a cold. It’s like my immune system dies when i get glutened and will get sick no matter what. I’ve probably left 1 or 2 things out, but these are my main symptoms of being glutened. If i live gluten free then these pretty much dont exist and life is good. When i get a small amount of cross contamination i’m no good for the next 5 days.

  160. Never again!!!!! We were out for football and I decided to eat wings, I figured what’s the worst that can happen!!! I am so ill right now I cannot even explain. My stomach is killing me, nausea, anxiety, phlegm, my body hurts and I have been up since 4. Lesson learned!!!!!!

  161. I have not been tested, but I don’t need one. I have the GI problems, the rash, the ataxia, and a few other things like fatigue and joint pain. When I am glutened, the first thing that happens is that I feel instantly tired — within 15-30 minutes of eating — not just tired, but like passing out. If it’s cross contamination, I may never have the GI issues, but the rash will go crazy that day and I’ll have ataxia attacks (vertigo, slurring speech and having trouble finding words, can’t walk straight like drunk) within a few minutes. If I have GI issues, they’ll start 4-6 hours later. The ataxia will stop that same day, the GI issues will usually clear up in 3-10 days, but the rash will take several months — not to mention that the fatigue and joint pain can last as long as the rash. My doctor doesn’t think gluten can do all this, so I’ve done other testing but it’s only when I’ve challenged the GF diet myself that I get the symptoms triggered, again and again. It’s just so nasty, tho, that some symptoms last a month or more, so it can get confusing when still having rash and joint pain even tho GI symptoms are better.

  162. What a fantastic website! I’ve been diagnosed coeliac for 3 years and try hard to keep to a GF diet ….and am pretty successful !
    However, I ate some bread on Tuesday (supposed to be GF) but was most definately not! My stomach has been gurgling ever since, had chronic gas and feel very lethargic.
    As other posts have commented, I do belive that symptoms are worse the longer you are GF

  163. Can anyone tell me if there is a reliable test for food allergies, such as Alcat? Please know by experience. Been reading many things that state these are not reliable.

    Greatly appreciated!

  164. Although tests are often helpful, there are no perfect tests. Even Dr. Fine of Enterolab says that the tests from his lab should be used as guides to help make decisions about foods. Sometimes eliminating foods can give the best answer.

    Another lab you may want to look at is Cyrex. It has an interesting array of tests. I do not know much about Alcat.

  165. I’m so happy to have this site. Since I have never been tested for being Gluten Intolerent, I sometimes wonder if I made it all up. I’ve been GF for more than 4 years and at times I wonder if I should try some gluten. Then I read some of the postings from this site, and I remember the gastric pain and fatigue. I have NOT tried gluten and wont! Thank you!

  166. I have had the same symptoms but haven’t been diagnosed yet…growing up I got the occasional back cramps in my lower right side so…last year 2011 I had about a couple of sips of coffee and with with in 10-15 I was having the unbearable pain I ever f er t…every time I stood up it felt like I was going to passed out…I eventually drunk a Ginger ale and about 4 sips later I was throwing up…then 2012 I ad sunken doughnut..iced coffee with doughnuts… same affect but his time nothing was working so I made myself throw up…and instantly I was fine… this last time was which was today 10-21-

  167. I have had the same symptoms but haven’t been diagnosed yet…growing up I got the occasional back cramps in my lower right side so…last year 2011 I had about a couple of sips of coffee and with with in 10-15 I was having the unbearable pain I ever f er t…every time I stood up it felt like I was going to passed out…I eventually drunk a Ginger ale and about 4 sips later I was throwing up…then 2012 I ad sunken doughnut..iced coffee with doughnuts… same affect but his time nothing was working so I made myself throw up…and instantly I was fine… this last time was which was today 10-26-12..I had some different effects…. I had breakfast eggs potatoes and a biscuits.. I instantly got got sleepy so I laid down.. a couple hours later I woke up with the same pain…I ended up throwing up but after. I go go lay down I get a slight headache… and the pain slowly goes away…so this time I didn’t get instant relief…but I going to get checked…..but it seems I experience most of the same symptoms

  168. After doing A LOT of research as to why I had nickel sized red marks on my body with severly itchy raised bumps inside the mark; depression, contstant SEVERE gas and bloating, migrains, joint pain, moodiness, constant brain fog, chronic constipation, diagnosed with Hashimoto’s and Fibromyalgia, sever gum disease and boneloss etc etc etc….I decided I must be at the very least sensitive to gluten. I mentioned this to my doctor and that I had stopped eating gluten and she pretty much laughed at me. She can laugh, I don’t care .. I was beginning to feel so much better…bloating and gas gone, fog is diminishing, level of pain is lowering. I have now become a fanatic about ensuring there is no gluten in my diet. Even while being as diligent as I possibly can, every once in awhile I KNOW I have ingested something with gluten in it. Tonight though was my fault completely with a gluten oops. I have always baked elaborate cakes for friends and family…wedding cakes, birthday, showers … whatever and I love doing it…mostly the creative process…I have never really liked eating cakes. Anyhow, I am busy making breadsticks and some from scratch lemon cupcakes tonight (my grandson’s birthday is next weekend). I was very careful with the breadsticks (dead man’s fingers…its a pirate themed birthday)… wore gloves…apron that came off when I was done etc. Then, I started on the cupcakes…and completely forgot myself and licked off a drop of batter that fell onto my finger. It was a small amount so I was hoping that there wasn’t enough to hurt me..after all it was a drop. Shortly after that, my throat started getting sore and it almost feels like my lips are a bit swollen. The muscles in my arms (between my elbow and shoulder)are so sore, I can barely lift my arms, my leg muscles feel like they won’t hold me up and fatigue and shivering uncontrolably..I am a bit cold but not enough to almost shake out of my skin and now my stomach hurts, I can feel the gas building and my chest and inner thighs are itchy and tingly. After being gluten free for the majority of three months (two other accidental glutenings at restaurants…I now eat only at completely GF free restaurants); all these symptoms and the severity have completely caught me off guard…I did not expect this…Almost to the point where the first thought that goes through my head is .. you must be imagining this because you know you got a bit of batter in your mouth and swallowing it before thinking…what the heck did I just do. Are these things consistent with being glutened? The other two times what I remember most is watching my flat stomach distend enough to look 6 months pregnant, as well as the severe gas, constipation and brain fog.

  169. It seems like I’ve had a variety of symptoms, enough to wonder if they’re really from gluten or not, although I didn’t experience them until I cut it out and then reintroduced it deliberately or ingested it accidentally. I thought I’d try going without gluten just to see if it would clear up my persistent acne. I’ve also dealt with chronic constipation over the years. I’m hypothyroid as well. After the first day, I was no longer bloated, and within days my constipation had resolved. My acne began to improve as well. The first time I noticed symptoms after ingesting gluten again was the day after I’d had a biscuit from Bojangles, about a couple of weeks after that first cut, although I hadn’t cut out gluten completely. I had some rice at lunch the same day that may have been suspect as well. I got really bad cold chills that evening and felt really out of it, maybe brain fog. About two weeks or so later, I had bloating and constipation come out of nowhere two weekends in a row, never lasting more than a couple of days each time. I realized it may have been from gluten-free cookies that I baked on cookie sheets that probably hadn’t been completely cleaned from when I baked regular cookies on them. I’ve had cookies really stick to them and had a very hard time getting them cleaned. I threw them out and bought new ones. The last time, I ate corn which had been thickened with flour for lunch on a Sunday, which I didn’t find out until I called the restaurant a couple of days later. The next day after eating it, I had painful bloating and ended up becoming really sleepy and fatigued during the day. It lasted through the night, and my energy began to return the next day. I felt pretty good until Friday afternoon, when I started feeling unstable and off balance. I was in a meeting and thought I’d get up and grab my laptop. I nearly fell just trying to get out of my chair. I carefully made my way to my office, grabbed my laptop securely with both hands, and went back to the conference room. That night, I basically sank into the couch while I was watching TV and thought I’d have to crawl to my bedroom when it was time for bed. I felt like I couldn’t fight gravity. What I don’t know is if that episode on Friday might have been from what I ate on Sunday, which is the most gluten I’ve had in my system since the biscuit, and I’d gone a lot longer without ingesting any gluten when this episode occurred. I didn’t feel any painful bloating before Friday’s episode. I decided to check some hand lotion I’d been using regularly leading up to Friday and saw that it had vitamin E (no source listed) in it. I decided to go back through my hand lotions and replace them with lotions without obvious wheat ingredients and vitamin E, not an easy thing to do. One other idea I had about Friday is that maybe then is when the autoimmune attack on my thyroid occurred, or it had been happening over the course of a few days, and I didn’t feel it until Friday. “Paranoia” has become my middle name. I would love to blame gluten for all these episodes, but with the symptoms being so different each time, I don’t know if I can. I would love to hear if others have had a wide array of symptoms each time they’ve been “glutened”. I feel like I’m going insane. :-( I’ve been trying to be as close to 100% gluten free as possible for a little over a month.

  170. Another thing I forgot to mention is that my sleep has been worse since cutting gluten. I’m lucky if I pull over five hours in a night. Not sure what would be causing that. I’ve considered my thyroid medication and gluten withdrawal. I’m on a slightly lower dose of thyroid medication right now. I’m alternating 50 mcg and 25 mcg, where before I was taking 50 mcg daily. I’ve basically eaten gluten all my life, and up until September 11th ate some kind of whole wheat product, such as bread or crackers, almost daily. The thought of having another food allergy/intolerance scares me. I’ve thought about asking my doctor about testing.

  171. RE: Donna R.
    It took me 3 months of being GF before I even noticed my DH clearing up a little. I had DH for 13 years without the proper diagnosis so that could be different for you. I’ve never used Dapsone. My rash is always in the same place and it is usually about the size of a quarter and what works for me is to ice pack it and the itch stops as long as the ice is on it. It has been about 2.5 years since going GF and I notice that the reactions are becoming less severe as time goes on. I also eat Dominos GF pizza and I have no reaction to it. However there are things such as wine that other people have no issue with that I can’t tolerate. You just have to find what works for you. One thing I’ve learned is that I have to remember or write down everything I eat so that if I have a reaction I can recheck everything I ate and figure out what the culprit is. Sometimes it’s something you wouldn’t suspect. At one point I was eating some bars that were made GF but processed on equipment that also process wheat. I usually have no issue with that but those were what was making me sick and it took me a while to figure that one out. Good luck! Stick with it…it’ll get better:)

  172. So pleased to find this site.
    I have been gf since July 2011 and have been glutened a few times.
    Wondered if anyone has had symptoms after eating gf oats?
    I ate a bowl of gf porridge on Saturday and have not been the same since. I have stomach pains,bloating and bad wind. I also feel sick after eating anything,hope i get back to normal soon,it’s so annoying!!

  173. Just wondering if anyone didnt get symptoms until the next day. I was just diagnosed with celiac disease 2 weeks ago. For Halloween I went to my Aunts house and brought my own food but did have some deviled eggs that she made (along with spooky baked goods that she probably made on the same counter). Today I ate the same rice dish that Ive made my self for lunch that I have eaten several times and I immediately felt sick with horrible stomach cramps, shakes and diarehea after eating – all ingredients are labeled gluten free so could it have been contamination from the eggs from yesterday?

  174. I had another thought about the symptoms I had that led me to try lowering my thyroid medication. One night, I only had about 2.5 hours of sleep, and I felt like I was having hyper symptoms like rapid heart rate. This was the same night I’d had the biscuit from Bojangles. Three days earlier, I’d eaten half a breadstick at my mom’s. I started to wonder if this had actually been part of an autoimmune attack, as I had remembered today that Hashimoto’s can fluctuate between hyper and hypo. I think a reason my sleeplessness has gone on like it has is that I’ve been undermedicated. I’m feeling a little worn today in spite of taking my 50 mcg dose this morning. I’m going back to my 50 mcg dose everyday and see if things get better. I’m beginning to think my initial insomnia was indeed due to withdrawal, and I made things worse by trying to change my medication and supplements.

  175. Mucha,
    I can really relate to you feeling like you’ve missed out on some great times of your children’s lives. There have been times in the last few years when I have been so low and negative, I just knew my kids would be better off without me. That is a terrible feeling.
    Since my Celiac diagnosis and going totally GF in May 2012, I’ve noticed a massive difference. Physically, the changes are extraordinary, and I have much more control over my mental and emotional states. I still get angry, frustrated and low, but it’s not the dragging, debilitating depression I suffered with.
    Keep on trying the GF diet. Even more, try only to eat things that are simple. By that, I mean, food in it’s purest form. Nothing that’s been processed. Eat real cheese, fruits and vegs, meat and GF grains. Don’t use sauces, seasonings (except salt and pepper and simple herbs), anything that comes from a can!

  176. @Carla,

    I have also had reactions to g/f oats. The reason for this is that oats contain a protein called avenin. About 5% of coeliacs have avenin-sensitive enteropathy.The Irish Coeliac Society recommends that you do not try these until you have been on a gluten free diet for 3 years, and if you have a reaction to avoid from then on.

    Great info here on reactions, thanks

  177. @Jennifer

    I get one symptom long after I have eaten gluten. About 10 – 12 hours after I get knee pain.


  178. @ Jennifer-
    Most of my reactions for gluten occur 12 to 24 hours after I consume it. Anxiety or depression can take up to 3 days to appear. My dairy/almond reactions are usually 20 minutes to 4 hours later. Everyone is different- lots of common themes across both those with celiacs and those with intolerance- there is no single box that everyone fits in. Gluten is a tricky little protein.

    Try tracking your diet AND how you feel separately. I draw a line with hour marks, and then write meals above it and record how I feel below the line. That’s the only way I could see the delayed correlation and identify gluten as my culprit. Its also been the only way I can figure out additional foods that cause inflammation for me since my official diagnosis is IBS, a diagnosis that is about as effect as your doctor looking at a rash and saying- oh, yes, you have a rash.

    Tracking your diet and knowing your reaction time will also help with ammending your diet because then you can know what to avoid next time. It could be as simple as cross-contamination in your Aunts eggs- or she could have used a mayo or mustard with a gluten ingredient.

  179. I have been diagnosed with CD (was tested for it because my mom and sister tested positive first). And you know what? I have NO symptoms – no stomaches, headaches, anything from eating gluten. I have eaten it my whole life and I love bread and pasta. I eat it daily with no problems. My sister also ate it her whole life but after being diagnosed (she was tested because she’s anemic) all of a sudden she went on a GF diet and developed adult acne out of nowhere. I don’t get why a GF diet would cause acne – has anyone here had this problem?

    Anyway I’m glad I stayed away from the GF crap, it tastes like cardboard. Quite honestly I think Celiac’s disease is a load of crap. All of the symptoms listed here seem to be common ailments.

  180. To each his own. But for me, and a ton of other people, gluten makes us deathly ill. Say, think, and do whatever you please but don’t say Celiacs disease is just a fad. For some maybe. But for the real people that have it and have to eat ‘cardboard’ as you call it, it’s not some game or crazy diet. It’s our life and it’s forever.

  181. I have been gluten free for just over 1 year now and it has drastically changed my life only for the positive!!! My story is on this website, and thanks to this website also, I was able to determine that I have a serious gluten intolerance!!

    Now that I have been almost 100% gluten free for so long, if I do eat something with gluten, intentionally or not, I usually get a reaction up to 24 hours later, mostly severe pain and swelling in hands, feet, and really most if not all joints.

    I did a test the other day – craving something sweet, at a home with no gluten free snacks, ate two pop tarts just for kicks and memories, and the next day it was like my hands were on fire!! Just reinforced my reaction to gluten is and that I need to stay away!!

    So thankful for this website and other websites addressing gluten intolerance and celiac disease!! I am 56 years old and feel the healthiest I have ever been in my whole life!! Yay!!

  182. MAureen, your sister might have DH instead of acne. She might want to check that out. I have had DH on my face and to everyone else it looks like acne. It takes 6 mo to 2 and a half years to go away after eating gluten free.

  183. I’m curios if anyone with celiac or gluten sensitivity has a low/extremely low cholestrol #. My dad has celiac, i’m not sure yet if i do, but i have a total cholestrol count of 150, my HDL and LDL are below the average #’s, like off the chart. I read somewhere that this can be related to celiac disease. Just wondering if anyone else has the same thing. Thanks.

  184. There is such a thing as “silent” celiac disease. Just because you notice no symptoms doesn’t mean damage isn’t being done every time you eat gluten. Did you have the celiac panel done to get your diagnosis? My understanding is that for something to show up on the panel, there already needs to be a fair amount of damage present. It’s definitely no fad to me; going gluten-free means that I can stop the autoimmune attack on my thyroid and hopefully prevent its complete destruction. My acne has improved, and GI symptoms that I had previously have practically disappeared. While it’s too soon to tell for certain, I think my monthly cycle is regulating as well. I also just feel better in general. I actually have enjoyed the gluten-free products I’ve tried and even converted a favorite brownie recipe to be gluten-free. The brownies tasted as good as, if not better than, the original ones. However, I’m actually trying to focus less on grains and more on meats, fruits, vegetables, and nuts/seeds, especially because of the arsenic issue with rice.

  185. Nancy, I had extremely low cholesterol my whole life until I changed my diet about three years ago at age 41. Now it’s high! I read somewhere that it is low before you’re diagnosed/changed the diet (I’m self-diagnosed) because the intestines are not absorbing the fats; just like I was really vitamin deficient (rashes around mouth on and off for many years) even though I used to eat a very healthy and nutritious diet with plenty of vitamins. My intestines just didn’t absorb anything. I also used to take one whole Ambien to sleep sometimes, but now even a third of an Ambien is too strong for me. I’d like to find out more about this. And I’d like to know how to bring the high cholesterol down. : )

  186. Hi Peg,
    You just made my night! I’m so glad this website has helped you and I’m sure you have helped many others!

  187. Thanks for the reply Lisa,

    I had bloodwork done because I was going to get a life insurance policy, i was turned down for the lower rate and couldn’t figure out why. Talked to my doctor and he said there was a study done relating to low cholesterol and cancer. The people in the study with low cholesterol were more succeptible to cancer. I wanted to know why i have low cholesterol and that’s how i stumbled upon the relation to celiac disease. So I’m trying to figure out how to raise mine a bit and you want to lower yours! I’m not sure what your diet is like or whether you exercise on a regular basis, I know there are medications you could take, but I myself would rather try the diet & exercise method first. It is intersting though that yours was low before a GF diet. I’m going to try the GF diet and see if it makes a difference. I have heard from many sources that having damage due to gluten allergies/celiac can definitely have an affect on how your body absorbs things from food. Thanks for your input!

  188. Nancy, I just read that when the villi (little hairs) in the intestines are flattened or damaged from gluten in the diet, absorption is hindered, thus, low cholesterol (as well as low minerals, vitamins, etc.). Fiber, including wheat, acts to carry bad fats (i.e. cholesterol) out of the body, so when those on a gluten free diet have less fiber to help get rid of the cholesterol, the cholesterol level goes up. Many GF foods are also often high in fat and salt and full of other not so good ingredients to give it a better flavor and that is something that contributes to cholesterol problems. So when you combine intestines that have repaired themselves (can take several months or even years) and finally are able to absorb nutrients (and medicines!) together with a diet that lacks a type of fiber that people eat a lot of, like whole wheat, and instead eat a low fiber and largely rice-based foods (I LOVE rice!), it results in both types of fats now being absorbed and not enough bad/cholesterol is flushed out of the body together with fiber. What I need to do is eat more fiber (would brown rice work?) and less fat. And exercise more (like my husband always tells me ~grin~). I still weigh the same as before my diet change (122 lbs, 5.4 ft). What you should probably do, Nancy, is test for celiac (before you change your diet! I didn’t and after I changed it and felt SOO much better I didn’t want to go back on gluten in order to just take the test) and go on a GF diet if you do have it (symptoms or not, there is damage that will only get worse with age); chances are high that you have it since it is genetic. OR you could try a GF diet for a few months (a few days or weeks is not enough to fully heal the intestines, but probably will make you feel better if you had symptoms) and see if you notice any difference in your cholesterol levels. It is disgraceful that the insurance company turned you down just based on low cholesterol and a supposed risk of cancer (what DON’T you get cancer from anyway?!). Unfortunately, a celiac diagnosis may also cause some trouble with insurance (but I’m not sure since I was never actually diagnosed by a doctor). On the other hand, a negative test does not necessarily mean that you don’t have it, so… only your body can tell you what’s going on. Good luck!

  189. Hrm used to eat a LOT of cereal. used to get a lot of bloody diarrhea.

    Dont eat it so much anymore and dont get the diarrhea but within half an hour of eating something with high gluten I get a serious craving to smoke tobacco, brain fog, aching joints, lethargy and depression that I feel ill, and no one believes me because I dont have the obvious sweats etc.

    Not sure how to proceed

  190. I have trouble with all bleached products. Turns out I have gastritis.

  191. Since I have figured out what was making me feel so ill, I was able to pin point my symptoms when I consume gluten. Shortly after I eat bread/pasta I would get sharp pains in the middle of my abdomen and I could hear food and liquid moving very loudly through my intestines.. The aches we all very random all over my body but an overwhelming sluggishness and pounding headache always occurred. The next day/ that evening always followed with watery stool, vomiting and sometimes blood would appear in either. The only thing I could compare the feeling to is a bad “red wine hangover”… After months of feeling so horrible, I was then unable to consume any fried foods or alcoholic beverages as it lead to instant sever pain in the middle of my abdomen slightly below the diaphragm (this is where your small intestine starts). The reason for this pain was because with celiac disease, it causes trauma to your small intestine as your immune system attacks it… Just glad to have found out why I have been suffering for so long and greatful that this is a manageable condition… Good luck to all of you.. And if you have ANY uncomfortable symptoms always get te proper testing to make sure it isn’t something more life threatening.. You are in charge of your health! Blessings to all.

  192. My reaction when accidentally getting contaminated is an immediate head spinning, dizziness, feeling like I am going to pass out. This happens within 1-15 min. of eating. I then get a rapid heart rate, feel really flushed, sometimes begin shaking, followed by extreme fatigue, and sometimes crazy diarrhea. Have found if I immediately begin drinking Green Tea it does help somewhat. Also, as soon as possible, I take OSC pellets (for flu) under tongue on empty stomach, and up the Vitamin C and Immune System support vitamins, as it really is an immune system attack… Tiredness and mild flu like symptoms and irritability/depression will last a few days to a week or two later, but it does take 6 months to completely get gluten out of your system, so I will have random things for awhile. :(

  193. I have been gluten free for about a month and a half, obviously getting some cross contamination a few times and feeling extremely nauseous to the point where I have to be near the toilet for fear of throwing up, although I never do. My throat is where most of the problems occur, feeling tight and like I’m unable to swallow. A couple nights ago I ate a specific gluten free pepperoni stick, which I’ve never had a problem with but this time I microwaved it which makes it really spicy and greasy, a couple hours later I was throwing up, which lasted for hours. I ate some gluten free toast the following day and was fine but I woke up this morning with a stomach ache and a nauseous feeling. I’m not sure if its because I didn’t eat much yesterday but I tried eating more toast this morning and had a hard time getting it down. Has anybody else had an issue with spicy/greasy foods with a newly healing stomach from celiacs? After that episode I’m thinking I should steer clear until my stomach has fully healed.

  194. I have read many of these posts and believe I can add something to the equation. Many say their Gliaden tests come back negative, so I offer you this….please read “The Yeast Connection”, and books like it…as I feel there is one more layer of the onion to peel to discover the root cause of the distress for many of you.
    Gluten sensitivity can be one of the symptoms of an overgrowth of candida yeast in the GI system. There are many articles and books on the subject…author Doug Kaufmann’s life’s work is about this problem. He has written many books on the subject, and has a TV program and website called “Know the Cause”. My integrative MD put me on a “4-R” program (Google it), similar to Doug’s and it was like a miracle. I have read about this subject extensively for several years, now, and I offer it to you as another means of figuring out what’s going on….Be Well.

  195. I am so happy to find this site. I have been glutened and am a wreck; blaring headache for 4 days; stomach extended like 9 months pregnant and rock hard; cannot touch my stomach, cannot lay against my husband gently with it when trying to sleep at night, which i cannot do any way due to tossing and turning and flipping all over due to the stomach pain; the heart burn is on overkill – acid shooting up into my head – my teeth ache from it – my right ear aches from it – i have a stuffy nose and cough and NO i do not have a cold; this is common symptom for me – i feel scared; sad; irritated and hopeless; i have no energy; i cant concentrate – i feel like i am exploding from the inside out – we are way up in canada and i cannot get to a store at this moment so am drinking cup after cup of very warm water with ibuprofen…thank you for letting me share and vent – i feel better now that everyone knows how i am feeling…i feel angry…it was an accidental glutening…and the suffering seems to have no end….tomorrow is day 5….going to lie down and see if can close my eyes in a prone position or it is back to the reclining chair for a second night so i can be upright…grrrrrrrrrrrrrrrrrrrrrrrrr…..gluten is poison to me….i feel like i am being physically beaten up inside without ceasing – i am internally exhausted…sigh..i hate gluten with all that i am…. :( ty for letting me share. being gluten free has given me back my life – that is why am so angry, even a slip up robs my life to such an extent it is just overwhelming.:(

  196. I had an endoscopy that showed intestinal inflammation, but negative for celiac. My allergist tested me for food allergies and I was positive for wheat, yeast, soy, milk, eggs, gluten. I have joint stiffness and pain. Sore muscles and lower back pain. I get severe fatigue and feel spacey and unable to think straight for days. Depression also sets in. After being diagnosed, I went on a super strict diet and eliminated all the culprit foods. Not only did I lose 30 pounds, but I was feeling great. I slipped and started to eat the foods again. Initially I didn’t feel so bad, I think because my stomache had healed. But now I feel worse than ever. It seems like the symptoms came back 10 fold. Going back to eating healthy again. It is hard and challenging…but it makes me feel better.

  197. Wow! I react the same exact way you do!
    First, my stomach a gut bloat. Then, nausea and brain fog followed by severe headaches. Then muscle pain followed by ‘cold intolerance.’

    It usually takes DAYS to a full week for me to recover from a single incident.

    My only complaint about it all… Dating? Pish posh! There will be NO eating out. I either need a gluten-free guy or someone more creative and willing to dine in.

    Something you might find interesting:
    “The Celiac Sprue Association website states that up to 1 in 133 have CD, and only 3% of those have been diagnosed! Other estimates are around 1 in 2000. There is also evidence that people of Irish or Swedish descent have the highest incidence. It is much more prevalent in lighter skinned individuals than in darker skin and in Asians. And many thyroid patients have it.”

    I was misdiagnosed with thyroid disease as a young teen. I do have Irish, German, and Swedish blood pumping through my veins… very pale. It makes sense to me.

  198. Maureen:
    I can’t quite understand why you would even get tested for Celiac Disease if you think it is a “load of crap”. The symptoms people are experiencing are not “common ailments” as you put it. No different than if you have a food allergy or another autoimmune disease, your body reacts adversely to let you know that something is wrong. Once gluten is removed and is strictly kept out of the diet, the symptoms or “common ailments” go away. I hope that you don’t take your diagnosis lightly. It is causing damage to your body that you may not notice right now, but if you continue to ignore it, you will regret it later. You are blessed to have found out early before you had to deal with any of the symptoms that we are all dealing with. Sticking your head in the sand will not change reality.

  199. My doctor recommended I stop eating gluten because of a suspected allergy- so i stopped eating it 2 months ago. I didn’t want to do the celiac test (minor surgery) so eliminating all gluten consumption was the alternative. I have done fairly well with eliminating all gluten and now experience marked reactions with any gluten contamination. With cross-contamination I feel a lesser extent to what I will explain next. These reaction are minor compared to the symptoms I am feeling today…..

    Last night on New Years Eve I went out to eat with relatives I was meeting for the 2nd time. We went to a restaurant and got family style meals to share between everyone. I didn’t want to be rude so I ate what everyone else was eating. Big mistake- which i regret. Within an hour I felt achy, headache, nauseated, stomach hurt, and all together awful. I slept for 10 hours (I would have slept longer but had to do something this morning). 17 hours after I have eaten gluten I have a migraine, sinus pain, my eyes are red/itchy/burning, my ears hurt, I am sensitive to sound, I still feel nauseated (feeling in throat like I am going to be throw up), back pain, stomach cramps, dizzy, all over malaise and exhaustion. Additionally, I feel extremely “hung over” but I do not drink alcohol at all- in any capacity. I was hoping to be productive today, but that is not going to happen. I just hope I feel better tomorrow.

    UHG. I feel so sick I think I will go back to bed :(. My recliner is just not cutting it.

  200. to the other maureen… who is not me…. you had said this in your post-

    “I have been diagnosed with CD (was tested for it because my mom and sister tested positive first). And you know what? I have NO symptoms – no stomaches, headaches, anything from eating gluten. I have eaten it my whole life and I love bread and pasta. I eat it daily with no problems. My sister also ate it her whole life but after being diagnosed (she was tested because she’s anemic) all of a sudden she went on a GF diet and developed adult acne out of nowhere. I don’t get why a GF diet would cause acne – has anyone here had this problem?

    Anyway I’m glad I stayed away from the GF crap, it tastes like cardboard. Quite honestly I think Celiac’s disease is a load of crap. All of the symptoms listed here seem to be common ailments.”

    One of my best friends has celiac, she has no symptoms… this is a problem as it has caused her to have thyroid problems, and an inability to get pregnant. (apparently there are connections between autoimmune diseases and gluten intolerance)

    The only thing i can think of with a GF diet and acne is that happens to be a symptom of a thyroid problem could be something like really dry skin, but oily hair. It is possible that by eating gluten, you were causing really dry skin, when in reality your skin is not as dry as you thought it might be- tough reality- but there are acne treatments that can fix it.

    I personally happen to have a dry skin condition unrelated to gluten intake or thyroid health (my thyroids are fine). I can tell you that since I have stopped eating gluten, the hair on my body in general grows in much faster…. I have no idea why this is, but it is fascinating to me…. guess my integumentary system must be healthier. PRETTY SURE that this isn’t a “common ailment”… or really an ailment at all- but just shows me that my body’s defense system against the elements is working better without gluten.

    So Maureen (nice name by the way), even though you don’t have symptoms (lucky you), you can end up have MAJOR problems down the road…. and WILL have problems if you do indeed have celiac and you continue to eat gluten. It is your life, and no one can live it for you- but I would listen to your doctors… I bet they know a little but more about how your body functions than you do (unless you are a doctor yourself). Good luck- Pasta and bread and everything with gluten were my favorite foods too…. good thing I figured this out now so that I can be healthier :)! I am a 26 year old, who played a division 1 sport in college as well as majored in Chemistry and Spanish…. unfortunately diagnosis might happen later in your life- it sucks- it is a lifestyle change- but NECESSARY if you want to continue to live a healthy life.
    Again, best of luck to you in the new year.

  201. I’ve been gf for 9 months. When I eat just little bit I get headaches, exhuastion/depression, gas. If I eat a lot I’ll get stomach cramps and gallbladder pain too. Often the headaches and gas don’t show up until the next morning. I had gallbladder disease pretty bad for several years, doctors kept begging me to have it removed, and ultrasound showed it getting worse. I had a 24 hour attack once and a 36 hour attack once. The pain is excruciating and once I associated it with gluten I was highly motivated to eliminate it from my diet. At one point my gallbladder was so enlarged my right abdomen was larger than my left and constantly tender to the touch, it hurt every time I ate for a year. Now my gallbladder doesn’t cause any problems for me anymore, I forget I have one.

  202. PS- Thank you Allison for your blog… I am grateful to know that I am not the only one who has side effects like this… it makes me realize I am not alone.

  203. Happy New Year y’all! I am just coming off what I believe to have been a gluten reaction. I’ve not been tested for celiac as I think it would be wasteful. I know something ugly happens when I eat gluten and that reason enough to avoid it. Make that somethings. Three days ago, I ate Progresso Pea Soup and got sick in the night. Next morning, I checked the label and, sure enough, it contains barley flour. I missed it by not reading all the way to the bottom of the ingredients list. I experience : ‘weasels in the gut’; both skeletal and soft tissue pain; sinus pain and phlegm; wheeziness; general weakness. The most distressing aspects are the depression and anxiety along with mental fog. These are just the worst symptoms. What I have read here has helped me see that gluten reactions can present in many forms. In the 4 months that I’ve been cautious about gluten, I have had 2 severe reactions, each time from not reading a label carefully enough. Oddly, if I remain 90+% gluten free, I can have a small amount of pasta or Walkers shortbread occasionally. I am most fortunate that I have a new PC physician and she is very supportive and open to alternative and complementary medicine. There! I feel better having shared, even if it is digitally!

  204. Thanks for sharing your reactions everyone… let’s stay GF for 2013!

  205. I had gluten the other evening as part of a New Year’s celebration… Big mistake. I feel like I’m the blueberry girl in Willy Wonka – my skin feels stretched (even though the only thing that actually bloated was my stomach, I have ended up with puffy, swollen ankles and arthritis-like pain in my joints in the past, before I was gluten free). My ears itch inside – does anyone else have that happen? I think it’s the weirdest of my symptoms… Anyway – I really need to learn that even a little gluten bothers me at this point, because I’ve been generally GF for over a year. I think it builds up in my system or something, because I wasn’t careful over the holidays… now I’m paying… anyone else have this “build up” thing? Thanks!

  206. Maureen 2 – such a bummer. Hope you have recovered by now. :(

  207. @maureen2
    Acne is usually occurs due to bacteria, if your skin is oily it is a better environment for bacteria(it lays on the skin longer/easier), hormones also play a huge role in acne. If you are having an autoimmune reaction to something and can throw your system-including your hormones out of whack, it’s possible.

    I’ve had the itchy ear thing, could be due to swollen lymph glands putting pressure on your ear canal. Also if your having throat/sinus issues due to ingesting gluten, that can affect your ears as well.

    Hope you all feel better and find peace in the new year!

  208. Within 30 minutes of ingesting gluten, I feel EXTREMELY sleepy, sometimes have stomach gas, abdominal cramping, mental fogginess, irritability, and what I would call a generally depressed mood. Don’t blindly believe those labels- keep a food diary.

    Check out (I’m not affiliated) “Now Foods Gluten Digest.”

  209. Had to double check to make sure this wasn’t a secret restricted woman’s site. Very little male input.
    My symptoms are different than most. I don’t know for sure I have been gluttened until 8 to 12 hours later. The symptoms last for 6 to 7 days before I Start to feel better. I now mark my calendar to count off the days till I’m whole again. I just discovered I am a celiac over the last 6 months, after 3 years of doctors and all sorts of test. Wish I could get a refund since they didn’t discover it.
    My problem is it attaches my organs with a slight inflammation of my heart and lungs causing shortness of breath, labored heart beats, which causes fatigue. Many times I first know I have been hit because of a pain in the center of my back. I will also experience brain fog, bloating along with gas. As bad as this is, I can at least function now from a hit of hidden gluten. Before I stayed wiped out and could barely function. I am very thankful I finally know what is making me sick. Now I want to help others who have been suffering to find relief.

  210. My reaction is straight away a dry cough, then usually stomach pain, diarrhoea (several hours after), tingling all over my body, shortness of breath and I feel like I might faint. Horrible… does anyone else get a dry cough???

  211. Just a thought about the acne problem. When you have celiac disease your body has been depleted of vitamins and minerals because it was unable to absorb them due to the damage in the small intestine. My daughter had bacne (back acne) very bad and we tried the otc remedies to no avail. I then took her to an allergist who tested her for environmental allergies, that came back with no triggers. He would not test her for food allergies. So I took her to a dermatologist who put her on the washes, antibiotics for a year, creams, etc. She did that for 6 months with absolutely no change in symptoms. I finally went to the pharmacy and bought a multivitamin and it cleared up in 2 weeks and has not come back! That was about 5 years ago. I wish I would have started with that. Good luck!

  212. Hello everyone, this website is amazing, for the past year I’ve really been tryin to figure out what’s wrong with me. And it’s only getting worse. I’m 23 years old, almost one year sober from alchohol and believe it or not but I thought getting sober would turn my life around. The past month has been the worst.

    My first episode was after eating 4 slices of papa johns pizza. 15 minutes after consuming I felt soo sick, headache, eye sockets hurt, felt feverish, had to lay down, I fell asleep for a couple hours and woke up so congested and had so much phlegm I could barely swallow. Now I’ve never been tested for gluten intolerance or celiac. But now I’m having light episodes almost everyday about 4 months since that first major incident. Pizza always sets it off very noticeabley. However most other times its very light episodes I get very tired eyes.

    My joints and whole body just aches all the time it’s ridiculous. I sleep 10-12 hrs every single day. 8 just isn’t enough I can’t ever force myself to get out of bed. I wake up very sore every day. I was diagnosed with IBS 2 months ago right before I separated from the Air Force. My stools are very frequent 3-4 times a day greasy dark most of the time. Or I’m constipated for days at a time. I’ve had bad cystic neck acne that literally appeared overnight 2 years ago and has got alot better after multiple doses of antibiotics. I was also diagnosised with a chronic dermitis around my eyes. Very itchy red scaly. I use kotaconazole whenever it flared back up which has been going on for 3 years. I also have very bad dandruff that nothing can get rid of for 2 years now as well.

    Could this all be from gluten. It seems now that maybe my body is just having enough of everything. I’m tired of feeling so crappy all the time. And I know I’m not making these symptoms up. I’m slightly depressed and never motivated. I’m young an almost sober now for a year. My life should be amazing but I feel horrible.

    Sorry if I’m out of place here, but this site made me see maybe this one thing, gluten, is what’s been slowly causes all of these problems.

  213. Oh I have also noticed as of late, that it seems like my body parts fall asleep fast like my legs or feet or hands. It’s really weird but it’s like I have poor circulation or something. And like 3 times a day when I stand up I get very faint. I don’t know. I need to see a doctor all of these symptoms seem to point right at this disease. I’m just tired of everything.

  214. Matt,

    Definitely get tested for celiac disease! If your general doctor doesn’t know much about it, make sure to see a gastroenterologist to talk about the symptoms and get tested. All the symptoms you’re mentioning have probably been mentioned somewhere in this thread.

  215. My nose itches as soon as I have gluten and then the rest of my face will start to itch. About an hour or so later I will feel pain in my muscles and feel my joints starting to feel weird. I also start to feel my mood change. Very little gluten and I just get pain in neck, joints, headache, stomach issues, mood change, and my muscles might twitch. The more gluten I have the worse the systems are and I can be down and out for a few days – with my muscles feeling like they are ripping and my legs being very sore and not able to hold me up. Before finding out that I have a gluten issue – I got to the point it was attacking my brain. My muscles were done for and I couldn’t think anymore. I couldn’t trust myself to leave the house. I hated myself and everyone else – I just couldn’t shake the pain and the numbness. My life was gone. So glad they finally found out the issue, but it wasn’t until a divorce – loss of job – and me so wanting to die.

  216. Headache like no other, nausea, bloating, fatige, chills feels like flu. Just had some Titos Vodka tonight second time in a row I had the “Gluten free” vodka and got sick so its not working out for me. Yuck. This is a cool place to share I only call out Titos to save anyone else from what I am feeling at this moment ugh. Had one and half cocktails felt like I had to go right to sleep and just woke up, three hours later sick as a dog reading about Gluten in mid of night. In 27 days into my GF diet and this is my second nasty attack and its from a GF vodka ugh. I feel like Im going to throw up and my head is killing me.

  217. Once I had only wine at a restaurant and was dosed with gluten, granted it was a brewery and I ordered in the bar, so maybe a drop of beer splashed in my wine. I woke up shivering and with a high fever in the middle of the night, and ended up with a massive breast infection. I also had major pain in my joints and muscles, I was in bed for 2 days, not fun with 2 little kids to watch. Since then, I’ve noticed the joint and muscle pain, along with chills every time I’m accidentally dosed. I believe in taking responsibility for what I consume. I bring food to people’s houses when we are invited for dinner and always investigate a restaurant before eating there. Just because a restaurant has a gluten free menu, doesn’t mean I wont get sick. I also don’t eat MSG, HFCS, or many other processed foods. I react the same to rice as I do to gluten. I just wish someone would make a good gluten free beer… the biggest thing I miss is Stone Brewery’s beers. The substitutes are just not up to par.

  218. Dewayne,
    I Hope you see this message. When you say it took three years of doctors to find your gluten problem are you celiac or sensitive and how did they find it finally.
    My symptoms sound a lot like yours. However my celiac test came up negative but I know they can be false. I now worry I may be in tolerant to other things such as corn.
    Anyway I was just wondering how they came to find out it was gluten causing your problems?

  219. When I eat it, I itch. My legs itch continually after eating it as if my legs are afflicted by athlete’s foot (athlete’s leg?). It is from below the knee to my ankles. Imagine an itch that will only subside when you afflict pain the area. Then sometime later, it returns witha vengeance.

  220. To the previous commenter. Just to tell you that is what happens to me. Just be glad it is not on your face like mine is. The sores are right out front for every one to see. There is always something to be thankful for. Hang in there.

  221. I am always good about checking labels to make sure good is gluten free. There was an Amy’s pizza in the freezer, I always eat Amy’s gf pizza. I made that to eat around noon today. Around 2pm I felt very nauseated. From there, I think I vomited about 30 times with also diarrhea. I literally thought I was going to die. I was so cold and had goosebumps on my body, yet I was covered in sweat. My hair was soaking wet. I could barely move and this went on for hours. My brother almost called an ambulance. I also agreed to it too, it was such a horrible feeling. I almost passed out a few times too. After sleeping on the bathroom floor for several hours, I was able to stand up with help. Turns out the pizza I are was only vegan, not gluten free. I couldn’t believe it! I thought for sure I had food poisoning, but it was gluten! The same experience happened several months ago, but I thought it was food poisoning from a restaurant bc I never had the symptoms of vomiting or almost passing out with the sweating and shivering sensations. I am finally in bed now and have been drinking plenty of water to stay hydrated, but I still don’t feel the best. At least I moved off the floor! I hate gluten!!! When ppl always say they feel sorry for me not being able to eat things, I don’t care bc it is not worth it. I don’t think I’ll ever feel the same way even about gf pizza again!

  222. Food, not good.. Sorry auto spell!

  223. Oh girls, I am SO HAPPY I’ve found this website!!!

    For YEARS I’ve had severe menstrual cramps (to the point of fainting), frequent nosebleeds, eczema, blurry vision, pain during intercourse, horrible gas, bloating and also sleepiness and a totally fuzzy brain fog (once I fell asleep on the lecture because I just couldn’t keep my eyes open), loose stools, sometimes leg cramps and etc. etc., all listed here.

    I’ve done some research recently and connected the dots (they were quite IN DA FACE :D) and well yeah, it seems I am gluten intolerant – so 2 days ago I started my GF diet – AND broke it already today as my colleagues had some buns for everyone and I didn’t want to be rude, so I took one and ate 1/2 of it. Bleh, bad idea. Immediate tummy bloating and I had to go to the toilet. This taught me a lesson and I’m now GF for real!

    Hopefully as my GF lifestyle progresses, I will get rid of this intercourse pain as well (endometriosis, hello), it’s not fair to my boyfriend. :/ Also these nosebleeds….before going GF, I’ve been happily eating various buns here and there and in one day I’ve had SIX nosebleeds. I thought it’s because of the dry winter air, but now I see it was gluten.

    Sigh. But thank you everyone for BEING and this web for EXISTING. Such a relief I’m not the only one – and also SUCH a relief to finally know what has been causing me all these problems for all those years!

  224. Mimi you may be interested in this study called “Gluten-free diet: a new strategy for management of painful endometriosis related symptoms?” http://www.ncbi.nlm.nih.gov/pubmed/23334113

    I hope you start feeling better quickly.

  225. Welcome to the club Mimi!

    Just a piece of advice: Don’t neglect your health out of “politeness”. Don’t think you are being rude when you say no to gluten-containing food! You are just starting and many people will think you are crazy and it’s all in your head… but the truth is, you know your own body better than anyone else (even the doctors who sometimes come up with negative tests). Just do what feels right for you.

    Listen to your body.

    Happy healing!

  226. i so love this site! i had posted earlier and am amazed…i have the DH skin rash on my right side badly AND i have been itching all over my body for days! to the point i am using coat hangers to scratch the areas on my back i can’t reach… altho i’m not naseaus this time but am very exhausted – i just read in someone’s post here that they are glutened when they eat rice – i have been hungry and cold and have been eating rice because i thot it was gf…gahhhhhhhhhhhhhh….that would explain my fatigue and the rash which is just awful and the itching!!! is gingerale gluten free? i have been drinking that too – i was desperately searching for why i would have the DH outbreak again….which takes soooo long to go away….well…learning as we go along here….soon i will be like way thin because i am finding it easier just to not eat. :( is very nice to meet all of you. thank you for posting all that you do – it helps me so much.

  227. Kari: Rice IS gluten free.
    Gluten is tricky and everyone’s body is different. Many people, myself included, find that it takes weeks to get the effects of gluten totally out of our system.
    As for things like gingerale and pop. It really depends on the ingredient list and your tolerance. I find sugar irritates my system in general so I try to avoid pop. People with severe gluten issues, ie. inability to tolerate even 20ppm of gluten can have trouble with the coloring or caramel coloring in pop. I have found that cutting out the gluten unmasked a host of other food sensitivities that I couldnt notice because of the gluten related inflammation.

  228. Something that I have been learning is that other foods cause some of the same inflammation issues with me… rice and sugar being two of them. It just seems that it is rarely only one thing that causes food sensitivities or allergies. I switched to organic as much as possible and cut out a few of the other foods that I suspected were causing me problems and it seems to be helping.

  229. Rice with flavoring ex. “chicken flavored rice” is usually NOT gluten free. The seasoning has gluten in it. To be absolutely sure with rice you should buy the plain unflavored or look for rice that has the GF on the box. Zattaran’s has a GF rice. There are a lot of flavorings and seasonings that have gluten in them and sometimes it’s hard to spot. Best of to buy things that state they are GF.

  230. Thank you Cafly and Nancy for your responses, I appreciate your taking the time to help me. I am very pleased to hear that rice is gluten free and now I can purchase Zattaran’s. I think it might be the gingerale, I am going to call the manufacturer tomorrow and ask. I am kind of hoping it contains gluten because then I could more easily identify the cause of this DH outbreak, like an “aha” moment :) Thank you again – have a wonderful day! kari

  231. I have been tested many times for celiac and wheat allergy but nothing comes of either one. Within 24 to 72 hours after eating gluten my right leg will hurt like severe shin splints. Even a finger tip touch is too much. I also have psoriasis on the entire right palm, beginning on wrist, in and behing right ear and between toes on both feet and IBS. I am at a loss.

  232. ‘and behing right’ should have read and behind right.

  233. To Eugenia,

    By any chance have your symptoms accured after taking antibiotics?
    I am trying to figure out if antibiotic played a role in this. I was given them for three year for ear infections. We know now that is not a treatment that works for ear infections.
    I was tested for Celiac, negative.

    I now realize if I eat grains of ANY kind, my large intestine gets very painful.I have symptoms through out my entire body. For everyone help. PLEASE visit the site Gluten Free Society. He explain that when we react to Gluten, we react to ALL grains including rice. Diary ALSO contains Gluten. I cannot have sugar either, I guess due to bacterial overgrowth.
    I am waiting for Mcombs Candidia Plan and will do that for a min of four months. Staying off all the above food is very hard. When I cave my symptoms come right back.

  234. Yesterday I had what was supposed to be gluten free loaf and am sick as a dog. Alt.hot cold, severe abdominal pain, breathing issues,tight tingly throat, loose stools, severe nausea, inability to sleep, joint pain, left side chest pain (feels like a heart attack). Symptoms will last for days or weeks. Last time it was this bad was the night before my wedding when they cooked my gluten free pasta in the same water as the regular kind! I really dislike eating out, I wish my family would get it that I would rather make a meal for them than eat out, but they don’t want to make work for me. It was interesting to hear some of you write about bladder involvement, I thought I was alone in my spasms and frequent urination. Thanks for helping me feel less alone on this long night.

  235. I went gluten-free on February 4 from a recommendation from my wonderful life-wellness chiropractor. She had attended a 2 day nutrition and health seminar. I have suffered from major back issues since May, 2012. By July 4, 2012, I could not get out of bed with a walker. It has been a long road of recovery without surgery, thank God. Doing much better every month since January. She recommended gluten-free because of the inflammation of the chronic back pain and inflammation from being obese apparently fights each other. I have not been able to get lower than a certain 10 pounds for the last 3 years. When I went gluten free – I lost 17 pounds in 2 weeks, my back started feeling better, I had a ton of energy, more focus, better bowel movements, and I was so happy. The weight keeps melting off, and I focus only on eating fresh foods, and staying away from the sugar loaded GF bread/pasta/chip items. I have not felt this good in years. Now, Saturday, was my first binge day since January. PMS – had gluten free cupcakes, probably gluten frozen yogurt and gluten veggie pizza. Went to bed. 48 hours later, explosive diarreha that had weird stuff in it. Had excruciating back pain through the nights from Saturday through Tuesday night (can’t tell if that is the gluten or the PMS), but I don’t even think I will ever purposely eat gluten again. Have been gluten free again since Sunday morning. It’s just not worth it. So many pros outweigh one bite of the cons. Hats off to everyone following this healthy journey. Been reading the book, Wheat Belly. Incredible information and it completely explains why since the 80’s we see more obese people on the streets instead of fit people (my husband and I included). It seems gluten is a toxin for all of us. We will all be better off without it. I’m hoping my husband sees the results, and switches over. Cheers to all of you GFers!

  236. help. i am constantly itchy…i CANT STAND IT…i noticed if i eat nothing..i mean not one thing…for a few days…i dont itch…i do all i can to eat gluten free…so i will go out and have a gf dinner…get sick…tonight went to dinner…ate what was to be a gf dinner…i am literally clawing my skin off my entire body…even using a hanger to reach my back, i want to rip my skin off. i just took a benadryll. my lips are all rashed..i have had a recent outbreak of dh on my skin…just thank you all for letting me vent i love this site.i have been gluten free for six months this month – down a lot of weight…i just itch all the time…i heard it may be other allergies tonight…so tomorrow…zero dairy, zero soy, zero sugar, zero rice zero zero zero anything. i am in agony. my son is getting married in 3 weeks – my lips are all rashed…and i didnt itch today at all because i ate nothing again, as soon as i ate, within 45 minutes – i was in the bathroom sick and omg i am going crazy with this itching :( please someone make it stop. i am so sorry all of you – us – are going thru any of this. when i was not gluten free – i did not itch…i did have a huge open sore on my backside for five plus years….since gf that has completely healed and is now just a purple scar…but this itching is just wicked…i wonder why now that am gf i itch everywhere?

  237. Try coconut oil!!

    Eat some before every meal and put it also on your skin… like if it was moisturizing cream.

    Look for it in healthy food shops.

    Check that it is 100% coconut oil. Organic.

    Good Luck!

  238. hi everyone!hope you are all well! found out itching with being gf can be low iron! so have been upping my red meat intake as i have literally been eating almost nothing out of gluten fear…and in 4 days i am no longer ripping my skin off my body with hangers to reach where i could not to scratch!!! and if i eat one banana a day i dont feel weak. i guess for diets that are filled with gluten – foods are fortified with iron and other stuff…and i learned being on gf diet we have to make sure we eat foods that give us nutrients we might be lacking! i am so happy i dont itch like i did am hugging a cow :)

  239. and thank you rossana for your coconut oil suggestion!!!

  240. @ Kari….thank you! On my last Thyroid blood work, my Dr said I was low on Iron. I was confused as I am a post-menopausal woman. As I have been GF for almost 5 years, I don’t eat any processed food and so I must be missing the Iron fortification that I used to get that your posing mentions. Oh goody, more beef!

  241. You’re welcome!

    Another “low iron sign” is that when you drink wine, your mouth gets all stained. I didn’t believe it so I tried to prove it by taking iron supplements and now when I drink wine it doesn’t stain my mouth! And I also don’t get leg pains… I used to suffer from that a lot.

  242. All this low iron talk has been very enlightening. I recently found out that I was iron anemic. I have had a lot of the same symptoms described above… Skin itching and prickles, leg cramps and pain, hair loss, and fatigue – all off which I just attributed to Lupus. I also found out that I am copper deficient which can cause some of the same things as well. Turns out that it is probably a malabsorption issue from years of eating gluten. I am on a very strict diet right now to try and heal my gut. It is comforting in some ways to know that I am not bonkers and that there are other people who have experienced the same things.

  243. Has anyone here gone from gluten sensitive to full blown celiac? Meaning your tests were negative now positive.
    I am having some unreal symptoms through out my entire body. Metamatrix stool test was positive for gluten sensitivity but blood test a year ago way negative for celiac.
    I have symptoms with any grain even corn.

  244. Becky,

    Celiac disease can certainly strike at any time. My children who tested negative are supposed to be re-tested every 3 – 5 years, for example, unless we do the genetic test and find out they don’t have the gene.

    You should probably be retested. Good luck!

  245. For all of you that still believe only on the tests, here’s this great article:


  246. MY symptoms started after I had my gallbladder removed in 2009. Soon after i started having diarrhea. My GI doctor did and EGD and colonscopy. Which he said was fine and started me on Welchol. It did help with the diarrhea. But, my stools haven’t been the same. They are just foul smelling, pale, and very seldom formed. For the past two years I have had back pain. Two times the pain would be so bad. I have to hold on to the walls to walk. Then I started to have this burning sharp pain in my legs. I would have headaches frequently but now I have severe migraines. Especially after I eat (30min to 1 hour). For six months I had nausea, extreme fatigue, and acid reflux. Back in 2010 I believed I had Celiac or some gluten-intolerance. But, my EGD and colonscopy came back okay. The doctor never did blood test. I have an appt with another GI doctor 4/17. I’m going to request another colonscopy and genetic blood work looking for Celiac or gluten-intolerance. Because all of my symptoms point towards Celiac disease. I will keep everyone posted.

  247. Andrea,

    It seems odd to me that your doctor didn’t bother with the blood work looking for gluten antibodies. That’s usually the first step because it’s so easy, and then an endoscopy is often done to confirm or maybe to look for other problems.

    I think it might also be true that you could have the antibodies but the EGD wouldn’t show any problems yet because your celiac disease is too recent.

    In any case, I think going to another GI is a really good idea! Good luck! I hope you find a solution.

  248. Like some others here, I really suggest reading Wheat Belly (William Davis). Testing positive for CD tells you something, but a negative result is meaningless – it doesn’t even mean you don’t have CD, let alone another form of gluten intolerance. I believe that EVERYONE is to some degree gluten intolerant, to such an extent that it should be considered a toxin. Many reactions aren’t the typical GI ones.

    My reactions were the typical gut ones and I was misdiagnosed with everything possible. I was the one who figured out the problem was gluten, and the constant vomiting and diarrhea stopped immediately. So did my asthma, and my panic attacks.

    When I have (very rarely) accidentally been glutened, the first symptom 6 or so hours later is the beginning of a panic attack. This is followed by vomiting, cramping, diarrhea, severe chills and tremors, especially in my hands and around my mouth. My partner, who didn’t think gluten was an issue, began eating as I do and stopped having migraines. So, lots of people are experiencing symptoms that a being missed.

    Be watchful about casein – once your gut permeability has increased by gluten exposure, casein, which is a fairly similar protein molecule, begins generating an antibody response. My reaction to casein is very similar but a little less severe and takes as much as 24 hours to develop.

    The best way to determine what your reaction to gluten (or casein) is is to do a one month trial of eliminating gluten and casein. Reintroduce only one at a time (gluten first) and wait three days to reintroduce casein. This will tell you the most accurately what your own symptoms are – even if you don’t believe you have any.

  249. Wheat sensitivity/intolerance/allergy… whatever you want to call it… apparently runs in my family: my mom, younger sister, and I all suffer from it. My mother’s father mostly did when he was alive, though it was undiagnosed, and my mother suspects a cousin, who died in her mid-thirties, may have been a full-blown celiac back before anyone knew celiac existed. We have not been officially tested. When I accidentally consume wheat or gluten, within a few hours my face swells across the bridge of my nose and my eyes (I get swollen “bags” under my eyes and my eyelids get puffy); I suffer from headaches, bloating, minor abdominal discomfort, muscle sore and fatigue; and I end up with a sudden acne breakout. As for my mom and sister, their faces swell as do their tongues, they also suffer severe abdominal pain, migraines, bloating, and “brain fog”. For all three of us, our symptoms tend to last for two to three days.

    I’ve been wheat/gluten-free for almost three years now. The last two weeks have been very tough. I have accidentally consumed wheat/gluten three times. The first two times were my own fault (I forgot to warn my hostess that certain sauces sometimes… though not always, depending on the brand… contain wheat), and the third was last night at a restaurant whose gluten-free quinoa pasta or gluten-free sauce must not have been as gluten-free as they thought. I’m paying for it today.

    As a side note, I also have a severe dairy allergy that, within the hour, makes me unable to breathe, and I break out in hives and suffer severe abdominal pain.

  250. I’ve been diagnosed with celiac but never had any symptoms. I’ve been careful since diagnosis. But last night I decided to eat garlic bread, 3 pieces. 2 hours later I thought I was going to die. My husband wanted to call an ambulance but I kept telling him no its the gluten. So he googled it and found your post Alison. He told me that what I was saying matched with your blog. I didn’t read it until this morning and I want to thank-you for saving me from a hospital trip. Everything you described is what I went through. It was comforting to read that what I was going through was in fact caused by gluten. I’ve learned a valuable lesson from my gluten filled night. I will NEVER do that again!! Thank-you for your blog and to everyone for commenting.

  251. I can’t be around wheat at all! If it touches me I break out into a burning itchy rash. If I breath it in (if im in an enclosed environment like a bakery or boiling noodle steam, etc) I get really stuffy, nose runs, headache, my brain goes foggy, I get itchy. If I accidently ingest gluten I immediately get super sinusy and stuffy, nose runs, my head hurts, I usually go into a coma for 1-3 days, bloating, cramps, I get crazy brain, poopzilla, my joints hurt for a few days, brain fog-almost like I don’t really know whats going on most of the time, confusion, depression, i’m sure there is more but those are the most inconvenient. I’m sorry for what you all are going through and I appreciate you’re stories, it helps me feel like i’m not so alone!

  252. Face acne, terrible stomach cramps that can last up to a week and a foggy head. It can also trigger depression and the need to sleep for hours.

  253. I can “enjoy” it for a few moments and then my nose typically gets stuffy so no taste. Then I get tired, bloated, and brain fog, and I feel depressed until it’s finally out of my system. If I get two doses in two days, on the third day I feel like I have a fever and it’s hard to get out of bed. I can tell you when it is finally leaving my system because I get cold sweats and the chills, which is weird.

  254. I did not know how I would react to gluten until recently. A couple of weeks ago we were on vacation and out at a mexican restaurant. They make a yummy sauce for nachos that I didn’t even think twice about putting on my burrito bowl. Bad idea. Midway through the salad my husband asked if I had put that sauce on and that it most likely had flour in it to thicken it O.O I hate that panic that sets in when you think about the pain you might feel. I finished it though because, it would only be as bad as it was before I stopped eating gluten 7 months ago, right? Wrong! Within 2 hours the onset feeling of nausea set in and I knew I was going to throw up. And I did….twice. The most violent I have ever thrown up in my whole life. My whole body was in pain and my stomach felt like someone cutting it from the inside. We got home, I went to bed, and all was fine by morning. Thought it MIGHT have been the sauce, but maybe food poisoning. Cut to today. My husband was having our favorite pizza. It smelled soooo good. I decided I would just have the little triangle corner. So yummy. And in retrospect, SO not worth it. Not even an hour later that same feeling from the mexican restaurant night kicked in. But worse. I started sweating and was extremely dizzy, nauseous, shaky and major headache. My whole body (mainly abdomen) went into a tailspin and I threw up 7 times. After about a half an hour my body was shaking so badly from muscle spasms. I kept drinking water to make sure my body had something to throw up but I never knew throwing up could be this violent. I could feel everything happening in my stomach/intestines like they were being ripped apart. Painful and scary. Then, after about an hour and a half it was over. My stomach feels like it should. Very sore and tender. I am drinking water and feeling very cautious. Super easy for me to stay away from gluten with this kind of reaction. Yuck! A couple of other symptoms I have had that I am wondering if others do is 1 – Little bumps that come and go sporadically all over my face/arms/chest that take forever to heal and go away. I have had these for 5 years. Much better since going gluten free, but not gone. 2 – I have had a chronic discomfort/pain on my right side for the past 1.5 years that changes with intensity for reasons I do not understand. I have had ultrasounds, CT Scan, checked gallbladder function and a surgeon even looked around the area during an unrelated surgery I had and all show nothing. It is hard for me to lay on my right side most of the time and I always feel uncomfortable. Somewhat similar to when you run and get a side ache. Not as sharp as a side ache gets but more the dull ache you feel before it is full blown. Anyone?

  255. Hi Sara,

    Have you been tests for Celiac, positive/negative?

    I do have the bumps. Mine are red and take a while to go a way. I also get little clusters of blisters mostly on my hands. My hands and feels are very dry peely and callused. But the dry skin is taking over most of my body.
    I cannot eat any grains. Dr Osbourne on Gluten Free Society says gluten senitive people should not eat any grains because they all contain a protein that will cause a reaction. He says diary, nuts, soy and eggs as well. Not much left to eat and it is so frustrating.
    I have so many symptoms Chronic low ferritin (iron stores) of twenty years, terrible muscle cramps, low back ache. It’s my left side that is effected. If I lay on that side my pulse gets crazy.
    I did a Spectracell Micronutient test that reviewed that I am deficient in Chromium, Copper, Magnesium, Q10, Lipoic Acid.I have just added these in, in last two weeks and already my contipation is gone. unbelievable!

    I have always felt something was off with me but in the last 7 years, my symptoms have exploded. I came back negative for Celiac. But I think I have it.Those tests are not accurate.

  256. @Sara- i get that aching in my lower right back side, had it for two days last week, no idea why, very annoying, just wouldn’t go away. I do not have my gallbladder anymore. I have been eating gluten off/on and drinking milk the past week which i haven’t done in a while. Right now i believe I am having an eczema flair up?? Very itchy skin, with bumps coming out after I scratch, never been officially diagnosed with it though.

    @Becky- Can the test really come out false positive or false negative?? Whats the use of spending all that money if it’s not accurate.

  257. Nancy,

    Yes, the Celiac test is not accurate. Doctor are not eduated on the lastest research in regards to Celiac/Gluten Sensitivety. They go by the old symptoms of diarrhea, weight loss, ibs…. You can be a c/gs without any of these. Dr Osbourne at Gluten Free Society seems to be the most educated in this field.
    I just read the other day that gluten problems could be as common as 1/10 not the 1/133 that has been said.
    And again I find that most Celiacs/GS are not off all grains including all forms of corn. Not sure if people are truly healing.

  258. I did test positive for Celiac. Then informed I was at the worst stage. What? I did not know there were stages. I was shown a diagram of 4 levels. I was at 4. My level was 66. This was 7 months ago. Made perfect sense to me as I am was dangerously tired, extremely sick and in bed almost every day. They have had me set up to go in for blood work since early July but I have not made it in yet. I am really curious to see where I am at now.
    The Spectracell Micronutient test sounds interesting. I imagine that comes after the doctor watches your progress with eating non-gluten as there are so many symptoms it weeds a few out before they can further work with you?
    My concern about my side is that it may be something that happened due to me not getting in and properly diagnosed for so long. The pain in my side has been persistent/constant for 1.5 years. The best way I can describe it is when you get a side cramp and how it builds before it gets to that max pain/discomfort. Think of how it feels right before it gets to that worst pain point. It feels like that. All the time.

  259. Selina,

    I just read your post in regards to beging Copper deficient. I was told the same after doing a Spectracell nutient test. Currious if Copper was in your vitamin prior to this and how you are treating it?


  260. Hi Becky.

    The nutritionist suggested that I take a copper supplement (among others), so I included that in my regimen. Unfortunately, I was having some sort of reaction to something that I was taking so I stopped all vitamins and have to start over more slowly. I was told that I most likely have a candida problem in my gut (probably from years of eating processed foods) so that would account for me being deficient in some key nutrients like copper and iron.

  261. Selina,
    Thorne supplements are free of all allergens. I will only take that brand of supplements now.

  262. Sometimes depending on the amount of gluten (bread being worse than say something that contained gluten far into the list of ingredients)I immediately have burning in my throat and intestines. I can actually feel where the food is inside because it leaves a trail of inflammation. Whether or not the reaction is this severe, I always get severe gas pains later on which often lead to diahrea or constipation.

  263. thank you all for sharing. i have had crazy episodes over the years similar to many of your stories…my mother & sister both have had gall bladders out…i think they have been wrongly diagnosed & have been urging them to cut gluten/wheat bc of all the things i have been reading about our genetically modified wheat…after having an ultra sound last year & my gall bladder checking out all good…doctors told me i had reflux…hmmm? well its been 5 weeks since ive decided to cut gluten/wheat from my diet & ive felt awesome! i had 2 tiny bites yesterday of my sons mac n cheese…just to taste test it for seasoning sake…& i was in disbelief that 2 bites could bring on all these symptoms ive had in the past!!! but it must be! & to know many of you had only to take 1 bite! only confirms that my decision to go gf is the right one! no more taste tests for me!!!

  264. Hello all,

    I’m brand new to all this. I find that my throat burns and there has been no resolution. I’ve been to Mayo Clinic and they have determined there is no GERD. My local chiropractor tested me for food allergies and noted that I’m sensitive to gluten. I’m going to try GF. Does anyone else experience this burning in their throat?

  265. Alison I have very simlar reaction as you do.
    My only difference is it can take anywhere from 1 – 4 days to react. It makes the guessing what I ate so much more of a challenge. It doesnt always depend on how much gluten I have eaten either. Though I have noticed if the gluten is in liquid form (beer or alcohol) I react twice as fast.

  266. I envy you people who vomit it right away. I guess I do not because with me, I can tolerate a little cross contamination and be fine. I can even drink a few gluten beers or spirits and typically be ok. However, last night I was starving and rather drunk and my friends wanted to eat jack in the box. That place will KILL someone who is gluten intolerant. heh. anyway, I ate some pure gluten food thinking i was going to be superman and just muscle on through the symptoms. I hate myself for doing this!!! I ate a sourdough jack and fries (their fries even have gluten too) with stuffed jalapeno poppers (extremely deep fried gluteny goodness). I don’t know what I was thinking!!! sglkjslkgjlsdajg. anyway, I passed out after this horrific meal, for about 3 hours.

    So, I woke up dehydrated as hell from the lack of water and excess alcohol consumption. Desparately in need more sleep. Can’t get any. This is what happens to me, I reach a state of utter exhaustion coupled by constipation, gas, bloating, agony and I can NOT even sleep it off!!!! It feels like it kills me so fast. and theres literally no solution. I have crap health care and emergency rooms don’t take insomnia serious at all. They won’t diagnose food allergies for me, no one believes these kinds of problems are even real and they just treat you like a psych case. I can’t sleep. I want nothing more than to sleep and crap my brains out, but for me, it’s as if the gluten just gets stuck inside me causing extreme constipation and the inability to rest. I take craploads of laxatives, laxative teas, probiotics, kombucha, suppositories, enemas anything I can do to alleviate this aagony and try to get rest but sometimes (like now) nothing is enough. I’m now on 3 hours sleep after being up for 24 hours and I can’t sleep. This is fucking hell. You wouldn’t wish this agony on your worst enemy. I envy all of you who get nauseus and puke it up right away. You have no idea how lucky you are… my body always thinks it can handle it and then it gets *STUCK*

  267. I am brand new to this site. I have had 3 separate incidents within 4-5 mo. of each other where I end up in an ambulance and visiting the E.R. yet again. They chalked it up twice to food poisoning, but it makes no sense. The first time was after eating (1-single) sausage patty and an egg. The 2nd, after a hamburger lunch with my daughter. The third just happened yesterday, after eating chicken noodle soup (without chicken). Within, I would say, about 30 mins. I started feeling cramps in my lower abdoment like I was about to have diarreah. I have learned when this hits, I am in trouble. Here is the quickened version of my scenario.
    I go to the bathroom and sit to “wait it out”. The cramping remains, but nothing in the intestinal track will move just then. Next, my face and hands turn beet red, (and my eyes turn bright red blood shot look). They feel like they are on fire literally like a torch was on them. They appear puffy. Then, I begin to vomit. I do not stop vomiting until everything is gone (but normally start with dry heaves). Once the vomiting begins, the diarreah starts and both are uncontrollable, so I have learned to keep the waist basket handy. I become dry mouthed (dehydration sets in just that fast), and once I have vomited completely, the face, hands, and eyes issue resides. The eye redness may remain a day or two later. I am utterly exhausted for 2-3 days afterward. If I don’t take the ambulance, I will be in serious trouble. I have had 2 heart attacks in the past, and carry 4 stents in my heart. I worry about what this is, or what I am reacting to. It brings on some pretty severe chest pressure (they assume do to the strain of what I go through). The ambulance personell could not even give me nitro because my b.p. dropped way too low for that. (That too happens with each incident). I had to chew 4 baby aspirin with dry mouth (what a treat) to stop the pressure. Well, after this most recent trip, they said all blood work came back normal and my heart was doing “pretty good”. I need to know, where do I go to get tested in Michigan for this Celiac thing (which I never heard of until now)? Is there a site that tells you what you can and cannot eat if this is my problem? Does this even sound like it would be Celiac? Oh, I was treated for 2 years with a malaria drug (this is the drug of choice for Lupus). At the end of 2 years, they said (not in so many words), oops, made a mistake, your thyroid is actually hyper and has multiple nodules. They killed the thyroid with a radioactive capsule, but don’t know about the nodules at this point. Can someone please help me. I have a special needs daughter who cannot take care of herself and I need to be healthy for her since it is just her and I. Sorry for the book guys.

  268. For Joyce and for EVERYONE who finds their way to this site. Try it, try going Gluten Free for 6 weeks and see how you feel! Don’t wait for some test or some doctor to tell you what is or is not wrong with you, just try it! I did the ER route, the so sick I was on the bathroom floor talking to “god” and such. One day, 5+ years ago, I decided it was gluten, and except for a few accidental glutenings, I’ve been great. AND I tested negative for Celiacs.
    You will feel better! What do you have to lose by trying it? It is quite easy to be GF these days. I suggest you don’t buy a lot of the GF products because they are expensive and not terribly nutritious, but a few are good (I take Mary’s Gone crackers with me to restaurants so that I’m not bothered by the bread coming to the table). Trader Joes sells a great GF flour that you can bake with and I use their almond meal in conjunction to give more depth.
    It is easy! And so much better than feeling sick! Good luck and feel better!

  269. Hey y’all, Ive had problems with edema/fluid retention GI problems (IBS, diarrhea), extremely bloated belly after eating, hives since about 2,5 years with loads of other symptoms as well. feel it has to do with an autoimmune reaction because of how extreme and widspread the symtpoms are. always got sent away really quickly by doctors. few months ago took a blood test for gluten, came out negative. since my identical twin discovered a relationship with gluten, i started to eliminate it. on for a week now. have the feeling of becoming lighter, lost 0,5 kg of water, feel less tired and fogged after eating. as a ‘test’ and because i really missed it, ate bread today and to see if i could make life easier with xmas. that came out really wrong, started swelling up immediately, look heavely pregnant now, my belly feels as if could explode, and im nauseous. but is an immediate reaction (and i really mean immediate, right after taking the first-first few bites) possible for celiac or gluten sensitity? how can i remediate the swelling? i already took some bromelaine. thanks so much in advance for ur advice

  270. Whitney I want to thank you so much for your input. I have been put on Benadryl X4 daily (as needed) for “possible” anaphylaxis (sp). Possible? I don’t even see them ordering tests to see what I may have, out of nowhere, suddenly become alergic to. I have been doing my best to stay away from gluten, and anything with wheat. I don’t really know if this is helping, or the Benadryl, but they also put me on anti-cramping med for abdomen. Any time I eat anything anymore, it seems the cramps are right there to greet me. I just need to be myself as much as possible again, and this surely is not it. Thank you again for the time you took to reply. It’s very scary for my daughter to withness this happen to me.


  271. Dear Alison

    I am writing to you after a bad night with excruciating cramps in one of my calves, accompanied by nausea, bloat and flatulence and another unmentionable gastric symptom, headache, sore throat and heartburn. I have been trying to keep off gluten, egg, soya and cow’s milk, as I am almost 100% sure that these thing make me sick. I have also been diagnosed with fibromyalgia, which returns from time to time. My energy levels fluctuate a lot and I have trouble controlling my appetite, although less so with my new diet. I mistakenly ate some mashed potato with a cow’s milk product yesterday at lunch time, after having painstakenly prepared a dairy, egg and gluten free meal for New Year’s Day lunch , but I also had corn flakes for breakfast and in the meat loaf ( at lunch). Can just a bit of corn or a tiny bit of cow’s milk cause such a bad reaction, during an elimination diet? I am very confused ( and also very fatigued and uncomfortable).
    Can you offer any help?

  272. Many corn flakes have gluten in them; that could be part of the problem. Do you know the brand of corn flakes?

  273. Just bought myself a “green drink.” I looked at the label carefully in the store, did not say it contained any products I know to avoid. Before I opened it, I went through the ingredients very carefully and there was “sprouted barley malt.” Did my homework and sure enough, that contains gluten. Must be so careful! I almost got glutened in the name of getting healthier!

  274. Hi. I’ve been eating gluten free for 3 months (since Dec 2013) and go out of my way to eat gluten free. I still occasionally get a bout of diarrhea, bloating, burping, headache, ringing in ears (particularly right). I lay on sofa and literally feel this must be it, this time I AM dying! Only get up (multiple times) to use bathroom. Sip tepid water and hope I don’t vomit. I do get nauseated frequently (as I type this, no vomiting yet), and burp a LOT even without diarrhea or ingesting any gluten. I’m vegetarian 20 years, only skim milk, lowfat cheese and Activia, NEVER eat out, no fast food, no grease, no seasoned or spicey foods. I don’t think it’s good to rely on antacids, as they can destroy flora-good bacteria in the intestines. I had intestinal surgery 8 years ago (and bowel resection). Haven’t found a good doctor since before then. Nowadays they just roll eyes at patients and accuse you of lying without even so much as a blood test. If anyone knows of a TRULY GOOD GI doctor in Pittsburgh, Pa area, please let me know! Thanks for listening and take care.

  275. I’ve just recovered from my 2nd ever glutening; I was diagnosed with celiac in July of 2010. The first episode I commented on above (May 31, 2011).

    This time, I’m pretty sure I also got some cross-contamination at a Starbucks. I ordered a caffe mocha at about 3:45 PM. At some point that evening, my stomach started hurting.

    (Gross details ahead) At 9:45 PM, I was on the toilet with diarrhea and violent vomiting at the same time — charming! I was in the bathroom about an hour and a half; the vomiting came in 3 waves, about 20 minutes apart, with 4 or 5 heaves each wave. It was very dehydrating! At one point I was able to run to the kitchen to bring back some water to sip.

    The next day, I pretty much laid around, sleeping and sipping water. I had a headache, mild foggy brain, and nausea, and I felt kind of weak. I eventually ate a few pieces of GF toast (Udi’s!) w/a bit of butter which sat okay with me. I wasn’t particularly hungry.

    That went on for 3 days, getting a bit better each day. At some point, sinus pressure came in and some Sudafed helped that. Starting on the 2nd day I added decaf tea to the menu and a bit of Tinkyada rice pasta. Today was the 4th day; I still didn’t have a lot of strength, but I didn’t need any ibuprofen and tonight I finally had a real meal. I still haven’t felt up to coffee.

    So…diarrhea and violent vomiting w/in 5 hours, followed by 3 – 4 days of being off. Now I know.

    I feel like I need to be more careful about how/what I order at Starbucks, and I will be, but I’ve been to SB probably once or twice a week since going GF, and only had a problem twice. But still, I’m going to change my ordering ways.

    If I wasn’t home when the symptoms first hit…that could be really messy and embarrassing. At home, I’m just glad I have a trash within reach of the toilet!

  276. I have been gluten free for a month. I ate a milky way candy bar I didn’t feel bad until the following day. Horrible stomach pain that gradually got worse very tired & a headache.

  277. I went 23 or so years of my life without having a gluten allergy/intolerance (or so I think). I have had allergies my whole life, so it is very possible that it could have been better controlled had I tried cutting gluten out as a child, however it was definitely not as “big” of an issue to the public as it is now. I have also suffered from depression and anxiety since I was about 18 yrs old. I have no doubt in my mind that can be affected by gluten as well.

    Now, for my official discovery of my gluten sensitivity…
    One day I had a “rash” on my feet and ankles. Went to the doctor who gave me some cream. Nothing happened. It would come and go. I Finally went to a dermatologist who gave me an extremely strong antihistamine…just made me TIRED! Finally I went to my primary care physician who suggested that I have my dermatologist do a biopsy are of the “rash”. When my biopsy came back it was found the I have Dermatitis Herpetiformus.
    I had NO idea what this meant so I had to do some research. So what i thought was a “rash” was in fact little blisters forming on my feet and ankles because my body was fighting itself and busting blood vessels under the skin. They itched, they hurt, and they SCAR. so no cream could have even helped. the only “treatment” is a steroid called Dapsone that is also given to people with leprosy…interesting!
    There are many possible causes, but none are for sure at this time. But i read that people with celiac disease often suffer from this. so, i looked up what celiac disease was and found out this was an intolerance to gluten.
    so i did my own little test…. Sure enough, when i cut the gluten out of my diet, my “rash” disappeared.
    It has been about 3 years since my discovery. There are times I experience times of weakness and will have something high in gluten, and about 4-5 days later the “rash” comes back….
    Not the usual gluten allergy/intolerance symptom or sign, but that was how it went for me!!!!

  278. I read your reaction to gluten and thought , “She must have been listening in when I talk about what happens to me”. I,too, describe it as being on a bad drunk! I have been gluten free for over 24 years and thankful I am alive! Better to k ow what you are dealing with than to die from it!

  279. My main problem has been severe dermatitis on my feet. 10 years of getting worse to the point of trouble walking before I figured out my gluten issues. If I’ve eaten dairy recently, gluten contamination hits me in a few hours with diahrea, and in a few days my feet break out. After contamination once, I splurged and had a real pizza. I paid for that with a 4 day hangover in addition to the above problems.

  280. I end up sitting in the bathroom for hours,groaning in agony and crying my eyes out because I REALLY want to go to sleep because it’s midnight-three am. I end up inducing vomit and having serious diarrhea. I had managed to avoid it for a few months until tonight.

  281. I’ve been gluten free now for 16 months. I actually self diagnosed with a confirmation from my doctor. I was in the ER several times over a 6 month period for horrible stomach pains, slow digestion, bloating, constipation, diarrhea, and my most common symptom ELEVATED HEART RATE. My first episode I woke up at 2a.m. with a pulse of 149bpm and shivering from nonstop chills. I thought I was having a heart attack. This happened 5 times over six months with the general time feeling horrible and sluggish with painful joints. The 5 episode came with the bilateral rash “Dermatitis Herpetiformis” that day for lunch I had a turkey on whole wheat. At that moment the light bulb shown over my heard. Every time I went to the ER I had eaten something made of whole wheat flour EACH time. Pizza, spaghetti, turkey on whole wheat, fried shrimp, Cheeseburgers. Needless to say after 16 months, I’m doing better. I do however get very sick with even the slightest amount of contamination. Things I’ve found labeled gluten free that I have learned to avoid is Chex Cereals, they are labeled gluten free, but I have a reaction every time. Gluten free bread also causes a glutened reaction. I pretty much have learned to eat only from the meat counter and from the produce section with an occassional restaurant visit that has a Gluten Free menu.

  282. I was just diagnosed with Crohnes Desease but i am having issues…My upper stomach swells so bad I feel like there is a tumor or something in there. I have had a colonoscopy, an abdominal and pelvic ct scan with contrast and IV, and abdominal xray and thursday i am going through an upper GI series. I have constipation NOT diarrea when i do have a bowel movement it does not seem like i empty my bowels and I also have a fistula. I am just lost :( I feel like something is really wrong and the drs are not finding it. Im never really hungry and my like bottom of my esophogus aches sometimes…anyone have any of these symptoms. In the morning my upper stomach doesnot start off too swollen but as the day goes on it gets worse. Any help/advice would be much appreciated

  283. I am so grateful I read this blog and this is my first post to a blog so I will try to be brief and useful.
    I have over the years I have been troubled with a nervous stomach that usually was diagnosed at the Dr. Office as IBS. Never thought too much about diet as I was trying to make a living, etc. so just felt like abdomen pain was part of life.
    But in the last few years, symptoms have gotten worse. Specifically, for no specific reason (at least that is what I thought at the time) I began having more intense cramping and pain in my stomach and left side of abdomen area. This was just the beginning of what would last 4-7 days.
    My last episode was about 5 days ago so and I think the culprit is French fries (deep fried). I believe this is the culprit but not sure if uncooked onions and some gluten pizza dough is also a problem for me.
    The episodes some have described in this blog have really made me feel like someone else understands my situation so let me share my latest episode. As I mentioned, about 5 days ago, I was with some old friends and go distracted that my grilled tuna came with French fries. My first reaction was not to eat them but the low to average amount on the plate caused me to take a chance. On the way home a few hours later I had an uneasy feeling in my belly area. A few hours after that and I was yawning incessantly and tired to the point I needed to lie down. My eyes were achy and nausea began to set in….this was about midnight. It was a restless night…tossing around with a kind of stomach ache that would not go away. The next morning I was feeling about the same but thought I would try something bland to eat, specifically, grits (yes, I am from the South). Any reader of this has a right to ask: “why would you eat anything that soon”? I don’t know the answer but within about 4 hours I was inducing vomiting to hope that would make me feel better. The rest of the day was spent in bed with a stomach ache and nothing, not even sips of Gatorade would stay on my stomach without me throwing up. It’s been about 5 days now and I have gradually introduced small amounts of food and am feeling better. Hopefully in a few more days I will be back to normal.
    Now, let me back up a second to a few important issues. In a few previous occurrences, I was constipated at the time the symptom began. If that happens, my pain was at least double and maybe triple. This time, I had been eating very healthy with foods that keep me regular before the event so luckily constipation is not a factor. In addition headache and diarrhea are not usual symptoms for me.
    I could write more about this but my goal was to simply let others know that I fully understand what they are saying even though others around may not.
    Best of luck.

  284. My symptoms are very strange. If I eat lots of gluten that night I have stomach pain, diarrhea and while having diarrhea I itch, hives, throat starts to swell and I sneeze. Have to take Benadryl right away. Symptoms would start to go away but it was very scary and I did not know what I was allergic too. So I went to the doctor and he ran blood work and I listed everything I ate and thought I was allergic too. Found out I was allergic to wheat. If I find out I ate something with wheat I take the Benadryl right away it helps. So far only had one episode this year and now eat no bread, only GF pasta, breads, pizza and have started to research what I can eat. Thank god for your site which is very helpful. Paulette

  285. As I read your story about, the one with your lady friend and her symptoms ring true to me right now, yesterday morning I hate a bacon muffin, I didn’t eat again until 5pm, I had some sea food, I felt fine, it was later in the early hours I woke feeling bloated, I was in pain under my rib cage and my lower back was aching, I no it’s the muffin, if I eat bread I’m the same and with potatoes, beans, pasta I feel terrible, I woke last night at 4:45am and it’s now 2:40 in the afternoon my stomach is still giving me cramps and my back is still aching, thank god under my ribs pain has stopped. I had noticed a few month back when I ate bread how bad I felt and have gradually realised other foods what trigger this, I haven’t seen my doctor but the symptoms are like some of the above, I ised to eat all these foods and not have a problem? Could I have an intolerance to Gluten??

  286. Apologies for my spelling and up loading my comment twice, there is no edit button. Any advice will be greatly received, the more I think about it yesterday afternoon I was sweating and hot, I didn’t realise then, but people on here have mentioned there heart rate going up as mine did also, I don’t like this feeling it’s awful. My nephew has had to pick my child up from school as I’m laid on the sofa feeling really crappy and and still suffering cramps, I haven’t eaten anything yet and don’t feel I can at the moment, thank you for sharing this, it’s really helped me to notice I may have a problem with gluten.

  287. Natalie, potatoes and beans don’t have gluten in them, although depending on how they’re served (like do they have soy sauce on them, which has wheat), they could. So when you say potatoes and beans bother you, how are those made?

  288. Natalie, potatoes and beans don’t have gluten in them, although depending on how they’re served (like do they have soy sauce on them, which has wheat), they could. So when you say potatoes and beans bother you, how are those made?

    Also, what else are you eating in that meal with the potatoes or the beans? Because that item could be the thing with gluten, and the potatoes and beans could be safe items for you.

    Have you been tested for celiac disease and have you been tested for an allergy to wheat? If not, these are good first steps for anyone that suspects a problem with gluten.

  289. I was only diagnosed with celiac disease about 4 weeks ago. I had no idea what gluten exposure symptoms could be like. I was experiencing severe abdominal pain and only occassional nausea. After going gluten free, the pain and nausea stopped, but for the past 3 or 4 days I have felt like I had the flu. Fevered, nauseous, bad aches, etc. Turns out it’s all from gluten exposure. I’m very careful about reading labels so I am not sure what caused it though.

  290. Be aware of cross contamination when eating out! Pasta is a dangerous one, some chefs use the same water which is full of gluten. Take papaya digestive enzymes to help when eating any food you have not prepared. You could also be reacting to a grain that is gluten free but your body is still sensitive to like oats or flax. Find brands you trust like Udi’s and stick with them. Read every label every time, manufacturers change ingredients all the time for cheaper alternatives, wheat starch may be added when it was not in the past. If you want to feel good there is no skipping steps unfortunately.

  291. As soon as I eat pasta I become sweaty and violently vomiting until the pasta is completely out of my body , sever cramps in belly , I also had gasteric bypass almost 3yrs ago and it has gotten from not a problem to digest to now severe problems pain .

    Any suggestions besides not eat it ,
    It started with spaghetti ,then Mac n cheese and now any type . And I take small bites I have to because of my surgery

  292. I have had diagnosed CD for 18 years. At the present time my reactions to any cross contamination are extremely violent. It starts with vomiting, after 30 minutes uncontrollable vomiting which changes to uncontrollable diarrhea, headache, every h=joint in my body hurts, severe fatigue, These symptoms last for 4-6 hours. Then after that comes dry heaves for about another 2 hours. By that time I feel as though I have been beat up. The next day is spent in bed all day to recover. No amount of lomotil will help. The worst I eer became was when I had taken 6 lomotil. With the dry heaves my throat swells and then is when I get scared and cautious. The only thing that helps is literally pushing down water Yes, as I am throwing up I am also drinking more. It is imperative when you start severe vomiting and diarrhea to immediately get liquid back into your body immediately. If you cannot get water down then sit in the tub or shower while running water onto your body to replenish the water through your skin that you are losing in the process of vomiting and diarrhea. This will help rehydrate your body. The longer a diagnosed person goes without gluten, the worse your reaction will become when exposed. You desperately need an advocate with you in case of a hospital stay but I guarantee you there are absolutely no hospitals who will know what to do to help you.Watch for the symptoms and be prepared when they start happening. Keep water available at all times.

  293. I have suffered from countless sinus infections since 8th grade (going into my senior year of college). Figured out finally in college that gluten was the problem — Whenever I ingest a large amount of gluten, after about two days I will wake up with a congested nose, phlegm constantly in my throat, fever, sore throat, fatigue and other flu like symptoms. This usually persists for 3-5 days and sometimes develops into a sinus infection (brown & yellow mucus)and I will remain heavily congested for up to 2-3 weeks. None of these flu-like symptoms are contagious (to my knowledge). I often will notice if I ate something with hidden gluten I will get numbness in my mouth, scratchy throat, watery eyes, and congestion within minutes. Finally if I drink alcohol containing gluten, my face flushes and I become stuffy within about 20 minutes. I have not been tested for celiac but do know I do have at least some kind of intolerance. I also notice I seem to have spurts of diarrhea around these gluten reactions.

  294. I searched the comments for the word “Leg” because that’s what it is all about for me. I don’t get diarrhea or stomach pain. An hour after eating a mini-tart with a wheat shell I got horrible horrible leg pain from the knees to the ankles. Bones hurt terribly, muscles hurt, nerves hurt and this went on for 48 hrs, getting a little better with every passing hour, now ok after 48 hrs gluten free.

    I had recently passed on all wheat and followed a wheat-free diet for months. So this was my first wheat-cheat in a long time and the reaction I consider severe enough not to wish to repeat.

    On another occasion, on which I had wheat and dairy, which I am also allergic to…this was a whole year ago, I had so much leg pain that I considered having a friend take me to the ER. It was totally consuming. I stuck that one out, writhing in pain, and it was gone in 48 hrs.

    But I have no proof yet, only strong suspicions that it is wheat. I guess I am going to have to try wheat one more time to be absolutely sure it was the wheat and I am not looking forward to doing that. I will give my body a rest first. My sense is that it really threw my body for a loop.

    I can’t have the celiac test, my dr. says, as I have spent too much time being wheat-free and would get a negative result. Wish I had had the test before I went wheat-free.

    I now follow a gluten and dairy free diet but still eat white rice which doesn’t seem to bother me. I hope to give the rice up soon and go totally grain free anyway, for better health. Otherwise, I eat Paleo and whole foods. I have been treated for leaky gut and severe body inflammation, blood-tested for food allergies. I read a lot about all this but only found a few posts here that seemed to have the severe leg pain like me, so I am still not sure I have found the answer in gluten. One more gluten trial will tell….I’m not looking forward to it.

  295. okay so I have not been diagnosed with celiac or any other gluten related problems professionally. But I diagnosed myself (yes im one of those people lol) and my reaction has gotten terrible ever since I stopped eating it. Its crazy I try going day to day without it but about once a week I eat it. mostly flatbreads (things that don’t rise don’t give me bad reactions) I started out with chest pain after ingesting maybe an hour later for like 30 min. today about 1.5 years later I had a sandwich from publix, really good might I say. however within 15 min I was in immense pain that had me almost collapsed on the floor just absolutely unbearable, even thought of asking to be driven to the doctors or the er. I have never felt such pain. I had no clue a reaction could get worse over time. has anyone else experience a change in their reactions as well? (by the way its about 1.5 hours later and im still in trembling pain and cant breathe deep breaths)

  296. katherine,

    If you read through all the comments here (which I do from time to time — they’re pretty interesting), you’ll see that it’s typical, at least for people with celiac disease, to have an increasingly bad reaction to gluten the more time goes on that you’ve been GF.

    Your comment made me think of the old joke, “Doctor, it hurts when I do *this*.” “Well, don’t *do* that, then.”

    My recommendations (and I know you didn’t ask for them) are as follows:
    1) Get tested for celiac. If you have it and are continuing to eat gluten, you’re risking other problems like lupus, rheumatoid arthritis, Meniere’s Disease, cancer, thyroid issues, the list goes on an on. In addition, celiac affects things like iron and Vitamin D absorption, so if you have it, that sort of thing needs to be monitored.
    2) For your own sake, drop every bit of gluten from your diet. Be vigilant. Don’t cheat. You are literally hurting yourself. I don’t care how good that sandwich from Publix is — it’s not worth what you’re doing to your body, whether it’s celiac or non-celiac sensitivity. Not worth it.
    3)It took me 2.5 years of being GF to finally get my antibody level to almost normal, so don’t think, “Oh, I can’t get tested unless I go “back on” gluten. You’re not off gluten.
    4) Good luck! Being GF is a pain, but the alternative is even more of a pain.

  297. Hi there,

    Does anyone experiences night sweats that smell very ‘sweet’? I wake up saturated in sweat, so much the mattress is soaking.
    (Only happens when I’ve eaten gluten).

  298. Hi

    I have been getting terrible muscles cramps joint pain muscle soreness all over my body and generally feeling low and tiered. I previously was a professional football player (soccer) and very very active .. I now feel the opposite to how I once as..

    something called fyrbomyaligia was suggested by a doctor i wonder if anyone knows if this is related to gluten in anyway

    thanks for any help


  299. I was having vaginal burning and bladder pressure so I thought I had a yeast infection but lab tests said no. I also had a rash on my face that resembled rosacea. I thought I would stop eating anything with yeast to see if it had any effect. My symptoms lessened and then disappeared. But when I added the wheat back in, I would have immediate vaginal and bladder pain. Does this sound like celiac? I haven’t been tested–my doctor doesn’t think I am, mainly because I don’t have the weight problems (i.e. losing weight).

  300. Hi Lance & Sue,

    Wheat is the number 1 cause of inflammation, which is the number 1 cause of health issues. Wheat has been added to everything, since makes people typically eat more and get addicted to the product. Most people have been diagnosed with everything under the sun and never told to stay away from wheat. I was first diagnosed with fibromyalgia and later with several other things – before long I was a walking pharmacy company.

    Years past to find that wheat causes soooooooo many issues that the last thing it does is attack your brain. my new doctor said that the words gluten free in the grocery store is to cover future lawsuits when people finally figure out how much damage wheat has done. At this point wheat is still spun as healthy, but so are the unhealthy cows shot up with drugs.

    We are told to eat more wheat, drink more milk, and eat more beef – items we should be staying away from. Now reports are coming out saying those that were not diagnosed gluten free for years should stay away from all white rice. Brown rice is also not a good thing, since it has arsenic. In small quantities it would be fine, but all gluten free items have brown rice so you are taking in a large amount and it will eventually show up in your test results (that is how i found out about this).

    Try to stay as close to the original item as possible and do not eat process foods. If just starting out gluten free – the food you buy at stores and most places taste awful. I recommend spending some time on the internet searching for recipes, which some recipes out there taste just like the food you are use to eating. Trust me – I have been gluten free for several years now and no-one that eats at my house knows they are eating gluten free breads, pastas, etc.

    Once you go of gluten – you will see a HUGE difference. You have to check everything – your spices could be hiding gluten as well. The words all natural also could mean wheat – since it is considered natural. So please take the time to look for the words gluten free or search the web to see if the product is gluten free. Once you go off gluten you will become even more sensitive to the product and feel a million times worse.

    Also – if anyone touches a gluten item and touches your food – it now has gluten. So always make sure people to change out their gloves when eating out and that they don’t use the same utensils they use for their other products. Toss any food in your house that could have been contaminated.

    To feeling young and healthy again.

  301. I have been gf for 3 years. During that time I have bee accidentally exposed a few times resulting in various symptoms. A couple of nights ago, after having a potluck dinner at a friend’s house, that was supposedly gf, I developed severe symptoms within 2-3 hours. Severe bloating and gas pain, subsequent violent chills for 2-3 hours, subsequent fever, faintness and weakness, feeling exhausted. I have experienced these symptoms before after accidental exposure, and did vomit on that occasion, but did not react as violently as this. Very scary! I spent the next day in bed because I could barely function, and even 2 days later still have abdominal and low back pain, and very little appetite. Has anyone else experienced this sequence of symptoms after gf exposure?

  302. Hi. After expressing concerns to my doctor about my body generating a need to sit on the toilet up to 8x a day, he ordered a blood test for GI. Result: 95% certainty. Was ordered onto a GF diet until a referral was processed for an endoscopy to then take up the Gluten Challenge. In just the first 4 days of being GF I felt better. Over those 4 mths I lost 8.5 kilos, had energy, felt happier and generally ‘glowing’. Going back on gluten I have hated every minute of it. Joint pain, headaches, symptoms of carpal tunnel are back, my muscles are all tense, the headrushes and brain fogs I get within a minute of eating anything with gluten. Symptoms are manageable but frustrating with starting the trips to the loo, sleepless nights, irritability, etc. Tonight my hubby took me out to dinner as a last ‘eat out’ without having to check for GF. I am having an endoscopy tomorrow to see if I am Celiac. I have never had such a bad reaction as what I did tonight… Severe heartburn, nausea, feeling like blacking out and sweating (I never sweat unless working outside on a very hot day). Can’t wait to go GF again because Celiac or not, I have certainly seen and felt the benefits of GF. See how tomorrow goes. Here’s to a brighter and healthier me :0)

  303. My 10-year old son is gluten-free and has been now for almost 4 years. After 6 months of being gluten-free, we did not think there were benefits to him being gf so added one slice of bread each day back into his diet for 1/2 a sandwich at lunch for 7 weeks. Then, we knew he needed to be gf for sure. He started exhibiting symptoms of autism again that we had not seen in awhile and just did not realize it was the restriction of gluten that had made the difference. After being gf again for about 2 months, all of his symptoms went away. His symptoms were: being very lethargic, needing 4 hour naps plus sleeping 10 hours in the evening, hypersensitivity to touch, echolalia (repeating everything he heard and saying nothing spontaneously), making up his own words (the only spontaneous words used), confusion, things he knew before he did not know at that time, and watery to loose stool. We still experience some of these symptoms from time-to-time, but if I were to pay a little closer attention, I might find these to correlate with accidental infractions on the food restrictions. He is also casein and soy free. There are only 2 restaurants where we eat out at and that is to Chick-fil-a and Five Guys Burgers and Fries. I was not aware of how easily food contamination was in touching a product with gluten and then the non-gluten product. At home, I have always made my son’s food first, and then I prepare mine and my husband’s food. I have often wondered about the chances of him getting gluten with us using the same toaster, and after reading some of the posts, I am sure he is getting gluten that way. Need to make a change with the toaster for him. Thanks for your blog, and the many posts!

  304. Endoscopy complete as of yesterday. Specialist is certain by what he saw I have Celiac disease. Waiting on test results but he has asked for a full consultation regarding my diagnosis. Here begins a new life change for not only me but my family. Have been told that Celiac can be hereditary so once my tests are finalised, my immediate family are then eligible for testing. See how we go. Thanks so much for this page. Has been a real encouragement.

  305. Marianne, welcome to your new life and feeling better!

    Melissa, do you have a British Beer Company near you? We’ve had good luck eating there, and never a problem. Pizzaria Uno’s has worked well for us, also. And boy, do I love going to Five Guys so I can actually get fries! At Panera Bread, I get the Fuji apple chicken salad and haven’t had a problem. At all of these places, though, you still want to be vigilant and check and double-check!

  306. I was diagnosed about 9 years ago with Celiac and honestly I have never been gluten free until recently. I always thought my headaches and nausia were just because I did not eat healthy. I had decided recently to eat better and was gluten free about one month and felt great,(thats what made me notice my sysmptoms, I had never felt great before), then Thanks giving came around and I ate Gluten. I got a MASSIVE HEADACHE!I also got sick to my stomach, and could not focus or sleep for about 24 hours. I had alcohol and it made it 10 times worse, even after only one drink. Thank God for this website! I had had cat scans, and I literally wanted to die. The pain was awful in my head and did not know what was the cause. Doctors here do not know what Celiac is so every time I would go they would guess and give me a pill. Thanks for your posts! Gluten free this day forward!

  307. I started reading this website about 6 months ago after my gastro problems became worse and could not figure out what to do different. As a 65 year old male, I had tried many things over the years. After refusing to give up, I decided gluten free would be my next course of action. After 3 days I felt better and after 3 weeks without any abdominal pain, I feel like I have finally discovered what has bothered me for many years. Thanks to all of you and I hope others don’t give up until they find a solution too!

  308. I hate the fact that in Canada food producers get to flat out lie about “Gluten Free” foods. They all have gluten in them. They have a point system. It should be 0 tolerance not, oh, you only use this much of it in processing your food, that’s ok, we’ll still label it Gluten Free.

  309. @Chris – we have the same issue here in the US. Also a food can claim to be gluten free if they believe they removed all the gluten from the product – such as juices, oils, wines, and liquor. You don’t know how many times I have gotten sick on gluten free foods to find out it either has traces of gluten or the gluten was removed from the product. As I explained to one food production company – I redesigned my whole kitchen because it had once had gluten in it. I couldn’t touch the counters or use a wooden or plastic cooking utensil without getting sick.

    The other thing that gets me is when people think it is a fad diet and they don’t need to take it serious – ohh you are on that diet. NOOOOO!!!! I get very sick and will be bed bound for 3 to 4 weeks – so take the extra precautions of making sure my food is a 100% gluten free. I understand most people don’t understand why it works as a diet and why the weight just melts off – you shouldn’t be eating wheat in the first place and your body is excited that you finally are getting rid of the toxin.

    Now if only gluten free foods were not loaded with white and brown rice – we will be heading into better health for those with celiacs. Also – the other flours they use are very high in sugars.

  310. I’ve been GF for about 3 yrs but my job has me eating out a lot which is very challenging and I know when I get glutened as my primary sympton is one or more sores will open up on my face within 2-24 hours of exposure. They are a bit itchy but not intense. I have some bloating and smelly gas but no diarrhea. I have complete brain fog and feel drugged and really struggle to concentrate. My skin becomes very dry and I get dark circles under my eyes. Tests for celiac came back negative including a skin biopsy for dermatitis herpetiformas. My PCP did a RAST test for wheat, barley, rye, corn, rice & gluten and all were high EXCEPT rice and gluten but I haven’t pursued a potential allergy. My sister is positive for Celiac and I have Hashimotos disease which is autoimmune so I’m treating myself as having CD. Does anyone else get the open sores symptom? Mine seems to be only on my face. If I get a big gluten exposure my whole face will erupt. I’m also wondering what these accidental exposures are doing to my intestinal tract and my ability to absorb vital nutrients. I’m on a certified GF chewable multi vitamin and take D3 and calcium for osteopenia. As I mentioned eating out is so challenging and even when I explain CD to servers I don’t feel confident that they get it or they treat it as a fad.

  311. Hello to all,just to ask do any of you suffer with a dry cough after being glutened. Many thanks

  312. Joan Lovely, I don’t go to any restaurants unless I’ve checked them as well as possible online. glutenfreeregistry.com is one place you might find reviews of a particular restaurant. You can also put in a town & state to see what restaurants have been reviewed from the town.

    Another thing I do is just google the restaurant name and gluten or gluten free. That usually brings results. And finally, I look for a restaurant’s website and look for menus. Many of them have their menus online and if there’s a gluten-free menu listed, or items specified as GF on the main menu, that’s a good sign, but of course I still google like crazy to see if they really know what they’re doing.

    And STILL, of course, you have to be careful at the restaurants. I do have celiac disease, but I don’t really try to explain that. Instead, I say, “My daughter and I can’t eat gluten; we’ll get severely ill.” Then I generally will ask whether the kitchen understands about cross-contamination. If I’m ordering a GF pasta, I’ll ask if the pasta is cooked in separate water, with separate utensils, and a separate colander. If I’m ordering a GF pizza, I’ll ask about the pan & cutter used, etc. Often I’ll use words like, “How do they make sure that my GF meal STAYS GF?”

    I’ve been GF 4.5 years now and have only gotten glutened twice, both times at Starbucks. There have been times at restaurants that I’ve almost been glutened, have noticed an issue (like…”Hey, there are croutons on that salad. And don’t just take them off and give it back to me; you need to remake it entirely), so vigilance is KEY!!

    However, I’m a stay at home mom, we don’t eat out that often, and restaurants are carefully chosen. It’s much more difficult in a work environment when other people may be choosing the restaurant. My suggestion is to do all the homework for the area you’re in (or going to be traveling in) and talk with whoever picks restaurants. It’s a pain for all involved, but do they want you out sick and/or totally useless at work? Nope.

  313. Hi Joan,
    Yes, my family gets these breakouts too. They seem to be more cysts underneath the skin. Some become so big and lumpy that they look like a pea under the skin.

  314. Thank you mpv61 and Lisa for your valuable input. I’m going to be even more viligent when eating out. I always look for restaurants that have GF menus but now I’ll ask about dedicated GF prep and cook areas. I had a great GF meal with my family last summer at a restaurant that has a GF prep and cook area in its kitchen but I was dismayed when the server placed a large basket of complimentary rolls on the table and I had to pay an extra $5 for my small GF roll. It just didn’t seem fair.

    And to Alison St. Sure, thank you for starting this website and blog. This is a terrific resource and is helping me navigate this crazy affliction.

  315. I was diagnosed celiac almost 2 years ago. Would only get bloated and mild D. I was diagnosed by chance due to thyroid problems and severe anemia. But I never really had severe digestive issues although did have some. I also get severe GERD which was noticed during the endoscopy (I always had a cough but never thought I had GERD).

    After about 18 months on strictly GF diet I stupidly decided to see what would happen if I ate2 slices of regular pizza. After 2 hours I was vomiting violently(8-10 times) and then had very watery D. After that I just felt bloated and tired for a few days.

    If I get cross contamination I get bloated but that is it.

    No fun for any of us is it?!

  316. I am constantly testing my intolerance but recently the payback has become intolerable. For example, I had Easter dinner which happened to include 2 spanokapita that I thought would not have enough gluten to be a problem.

    Was I wrong!

    I became tired and bloated and generally rundown. The next morning I had a cough caused by a horrible nasal drip and I felt headachey and even more run down. I have since noticed a trend where I get a sinus infection or nasal drip after any gluten and it causes discomfort for 4 days at least. I also get constipated top the point of feeling toxic.

  317. So good to learn I am not dying from an incurable disease. I have only been gluten free for 4 months and been glutened once in that time – just last week. This is my story.
    Last year I developed terrible pains in my abdomen which the doc said was diverticulitis. And I felt nauseous almost every day. I was exhausted. I had every test and ultra sound known to the medical world and they all found nothing. So of course I also began developing an anxiety disorder about my health. Finally I ran into my ‘other’ doctor who has a bit of a bend for unconventional treatment and the first thing she said was “have you been tested for gluten intolerance?” Which I hadn’t at that stage.
    This was the genetic test. My results showed 3 sets of heterozygous genes for gluten sensitivity.
    That was good enough for me. I stopped eating it immediately. Within 3 days I notice that my stools were brown instead of pale orange, which they had been for years, and were more solid.
    I still had irritable bowel syndrome and by this time I had developed eczema as well. Now the IBS is almost cleared up and the eczema is more manageable. I was 55 when I found out and the doctor said that hormonal changes in menopause mean the immune system just doesn’t cope anymore.
    So last week I asked if I could get the vegie burger at a cafe in gluten free form. No worries they said. (I live in Australia). As soon as it arrived I was suspicious. The bread was fine but the burger …? But then I thought, what harm will it do. I was a bit scared but ate up.
    That night around the middle of the night I felt tenderness in my hips. I assumed it was because I have lost a lot of weight and I had been lying on one spot for too long. I also had a pain in my neck, again, thinking it was how I was sleeping. I felt a bit nauseous when I woke a couple of hours later but went back to sleep. However, in the morning it had really hit me. I was fully nauseous, aching hips and neck, phlegm and exhausted. I couldn’t eat but managed to drink fluid. Had diarrhea once. Spent the entire day in bed aching, cold, sweating, and so on as if I had food poisoning. What made me realise that it must be the gluten was that my eczema flaired up. I also had heart rate increase and palpitations. It took a couple days to get back to eating properly and even longer to feel semi-normal again. A week later, and I am still more tired than usual.
    Can’t believe how toxic this stuff can be for those of us who have some form of senstivity.

  318. I’ve never had diarrheal/stomach pains from my gluten issues… I think that is false. When I ingest gluten about 4-6 hrs later I have symptoms of brain fog, flu (feel like crap), headaches and if I’ve had any alcohol I’ll throw up!
    I’ll also get strange pains in my joints and stabbing pains in my temporal lobe. I think it’s sad it takes sooooooooo long to diagnose and that doctors are so ignorant. It took at least a year before are started to feel normal again…. Now I wake up every morning feeling GREAT!!!!!

  319. Also…. For years I had terrible sinus pains and thought I had sinititus but alas…that ALL went away when I gave up gluten. I can BREATH!!!!!

  320. Anyone else experiences a burning head. My head feels like it is on fire whether I eat a very small amount of gluten or large. It’s hard to focus when it feels.like it is boiling

  321. I used to have sinus problems, head fog, memory loss, fatigue IBS, anxiety, depression, pssoriasis. Since giving up all grains except occaisional rice and corn I have felt more healthy and energised but when I have a little bit of my sons toast or some pasta at an event for example I get an instant headache, sore burning swollen throat feeling, bloating and feeling tired and depressed. It is hard when everything around s has so many different ingredients that you cannot see so the only option is to cook/prepare everything myself. Even the gluten free products made me sick.

  322. I have been gluten free for six years until yesterday.Went to a cafe and was served mashed with gravy by mistake.I moved it to the side and requested my french fries.There was a small amount of gravy on the pork chops ; but I scraped it off and thought it would be ok.After one bite I got the hiccups and started to gag and belch.In minutes the mucus and phlem was so bad it was gagging me.I ran to the parking lot and gagged and chocked to the point that I though I would choke to death.Another customer saw me and came to see if I needed the rescue squad ; but I could tell that the reaction was starting to subside.Once My throat cleared I was able to drive home and several hours later ate a gluten free meal.I have been belching a lot ; but that is starting to subside.
    This is by far the fastest and most violent reaction I have ever had and I hope no gluten ever passes my lips again.

  323. I am on week 6 of bloating, dizziness, constipation, major joint aches, indigestion etc from being glutened @ Claim Jumper. I didn’t know symptoms could last so long! has anyone else suffered as long or longer. is there any relief in sight? I’m getting worried.
    And oh! The gas!!!! #toxic

  324. I was diagnosed as being highly gluten sensitive this Spring and have been gluten free for about 7 months. I accidentally ate a piece of regular toast a couple of weeks ago and had no ill effects. I asked my naturopath about it and he said that sometimes a tolerance can be built up so I decided to eat a donut three days ago and have been paying for it ever since. It started with flu like symptoms including congestion, muscle and joint aches and exhaustion. The congestion went away after the first day but then the intestinal cramping and diarrhea began. More exhaustion and gas. Am now on day three and am beginning to feel a little better. Diarrhea and most cramping is gone but I’m very tired.

  325. I react exactly the same way as Sheila, except my bloating is worse than the headache. It’s “lie in the fetal position and rock and cry until you fall asleep” bloating. The headache is dull and aching. The joint pain is almost like I’ve sat or slept for too long. The amount of time it lasts depends on the amount of exposure really. Generally speaking, a minute bite of something containing gluten will affect me for 3+ days.

  326. I had an incident where as soon as a ate a few cheetos it hit my stomach which started knotting up. Then I felt sick and couldn’t say anything. My husband kept trying to say something to me. I barely said anything. He told me that I really wasn’t making sense and looked like I was going to pass out. He wanted to take me to the ER. I refused. I went to the bathroom and started moving my bowels and I felt a little better. My blood pressure was up so I took my blood pressure med and sat down. My husband called 911. I told them I think it is gluten. This seems to happen when I haven’t moved my bowels and something hits my stomach just right. Once it moves through me I will be fine. They took my blood pressure and it wasn’t too high and neither was my blood sugar. I refused to go to ER. In hours I felt better but very tired. I moved my bowels 3 to 4 times in a few hours and first thing in the morning. I was just very tired. I was told I looked white as a ghost. Once I went to the bathroom the first time color was coming back but I felt very cold. I have question gluten for a long time. I believe it is the cause of hypothyroidism. I haven’t been diagnosed with it but believe the gluten is the cause of it. I am looking into become gluten free. I also runs in my family. Any help anyone has or tips I appreciate it.

  327. Does anyone get different symptoms with separate “glutenings”? I was diagnosed with celiac 4 years ago – at the time had symptoms of bloating, numbness, tingling in legs, muscle twitching, MRI that showed white spots, joint pain, etc. Still trying to figure out what my gluten reaction is. Sometimes I’ll have diarrhea and think maybe I was glutened. Other times I’ll have leg and body twitches at night and think that I was glutened. Can the body reaction be different each time? Has anyone else experienced different reactions each time?

  328. where do I begin…
    ringing ears, foggy eyes, sneezing, bloating, heart palpitations, heat flashes, flu like symptoms, slight pain in the knees, slight headache, slight itching, tiredness, patchy skin, thinning hair. heavy arms and legs, shortness of breath, irritability, loss of interest, sensitivity to pesticides and household cleaning agents. Well I will never forget date 11/11/2011, a day before, I had a wheat bread with peanut butter and jelly sandwich went to classes as I was taking college course, I felt the most horrible feeling almost all of the above. I associated my feelings with just feeling extremely low. I was scared.I felt like my whole left side was numb – that lead me to my first visit to the emergency room. I did every test you could think of, all came back negative. I started following up with my regular visits to doctors,I was told may it low blood sugar so I was advice to eat more pasta to bring up my sugar level. I did, and continued to feel even worst. I did the celiac test etc, etc, all negative. I ended up in 3 emergency rooms, brain scan and heart scan still nothing. I started researching on my own, and changed my diet completely. I did a lot juicing and eating raw vegetables,within a year I felt close to normal again. I am a school teacher and I witnessed kids who ate wheat breakfasts and lunches goes from being normal kids to hyperactive and irritable children. A few kids unknowingly expressed slight headache after eating such meals provided. I ended up on this site because today I could hardly speak to the kids at work without feeling like I am going to pass out. I prayed an ambulance would not be called due me to passing out. My heart feeling like a heavy brick in my chest, raced vigorously, shortness of breath. I thought about going to the emergency room after work, but decided to do some researched first, which lead me to this site. After reading the experiences of others,suddenly I remembered I had a nice bowl of pasta 2 days prior. It all made sense to me again. thank you all for sharing. Regular doctors don’t seem to have a clue.

  329. Wow – thanks for sharing your experience B. Lewis. I’m sorry you didn’t feel well and hope you are feeling better. I have to ask — are you normally gluten-free? Is eating a bowl of pasta unusual for you?

  330. Perhaps if someone is looking at this in 2015, this is what happens (or has happened) to me.
    Was conpletely gluten/wheat free for two months straight. I magically gained weight for the first time in years. Then i decided to have some pizza. And that pizza also turned into butter tarts. Not so good idea. About an hour later, i got severe nausea and cold/hot sweats and chills. Morse code tinnitus in my right ear. Stomach cramps. Diarreah. Racing mind and wxtreme anxiety. Brain fog so bad it felt like i was floating above my body. Acne on my face, my paoriasis is coming back. Its ridiculous. That was five days ago. Im still having watery diarreah after everything i eat. My two months of weight gain progress is going to fly out the damn window.

  331. I have been gf for over 4 years. Unless by accident (that I do not know about), I have not had any. But something is causing me extreme fatigue, dizzy, sleepy, confused and oh the itchy prickly skin. Especially face, head and neck area.
    I think it is grain… any kind even gluten free. Corn and rice I have in like chips, or something. It makes me so miserable I am going to have to give it all up. Seems like any carbs make me want to fall asleep within minutes after eating them. Anyone know what causes this?

  332. I accidentally got glutened on Sunday- it is now thursday i am finally feeling 90% better NOT 100%! what happened immediately was belly burps i call it- where my belly begins to gurgle and flop, i should of known! on monday i felt pretty good, went to grab lunch and also grabbed a sugary soda that i sip a few and throw away- those few sips i am sure amplified all that ended up happening with my body. I went back to work and turned my head i was so dizzy it felt like my eyes were wobbling! i walked down 3 flights of stairs at end of day and felt like my shoulder was being ripped from my bone. At home i was freezing cold and then hotter then heck this went on for 24 hours, horrific headache where plot how to cut my head off to survive it! but the worst was the joint and muscular pain, every joint every part of my body hurt like i was dying! it was an all out attack on my immune system and it was horrific! i am on day 4 of coming out of this my legs are still in a lot of pain, my feet are burning hot on bottoms and my right arm feels like it is broken or i pulled muscle off the bone. I want to know why in the world anyone would ever EVER want to eat this!!!!!!
    why do we have this!? who would want to feed this to children?? it is horrible. GLUTEN IS EVIL!!!

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