Print Print

How I react to gluten… what happens to you?

Posted on May 29th, 2011 by Alison 105 Comments »

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?

Be Sociable, Share!

Comments

  1. Katie, on May 29th, 2011, said:

    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. Susan, on May 29th, 2011, said:

    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. Jenny, on May 30th, 2011, said:

    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. Maura van der Linden, on May 30th, 2011, said:

    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. Melissa, on May 31st, 2011, said:

    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. Selena Cate, on May 31st, 2011, said:

    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. @mpv61, on May 31st, 2011, said:

    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. Wendy, on May 31st, 2011, said:

    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. Alison, on June 1st, 2011, said:

    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. Anne, on June 2nd, 2011, said:

    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. Sara, on June 2nd, 2011, said:

    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. Diane, on June 4th, 2011, said:

    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. Anna, on June 12th, 2011, said:

    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. Heidi, on June 13th, 2011, said:

    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. JaniceLwalker, on June 20th, 2011, said:

    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. Michelle, on June 25th, 2011, said:

    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. Rose, on July 2nd, 2011, said:

    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. Teresa, on July 11th, 2011, said:

    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. Terri, on August 3rd, 2011, said:

    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. Elizabeth, on August 3rd, 2011, said:

    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. Ruthie, on August 4th, 2011, said:

    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. Carol, on August 4th, 2011, said:

    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. Wendy, on August 4th, 2011, said:

    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. Jacque, on August 5th, 2011, said:

    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. Jacque, on August 5th, 2011, said:

    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. Alta, on August 5th, 2011, said:

    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. Susan W., on August 5th, 2011, said:

    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. Alison, on August 14th, 2011, said:

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

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

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

    Carol,
    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!

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

  29. donna valdez, on August 23rd, 2011, said:

    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. jess otieno, on October 9th, 2011, said:

    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. Elke, on October 14th, 2011, said:

    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. Nancy, on October 20th, 2011, said:

    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. Nancy, on October 20th, 2011, said:

    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. Peg, on November 6th, 2011, said:

    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. Peg, on November 6th, 2011, said:

    *Sorry for typos and extra line of text!!

  36. kath smith, on November 9th, 2011, said:

    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. @mpv61, on November 9th, 2011, said:

    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. @mpv61, on November 9th, 2011, said:

    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. Anne, on November 9th, 2011, said:

    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. Alison, on November 18th, 2011, said:

    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. kath smith, on November 23rd, 2011, said:

    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. Kayla Moore, on December 5th, 2011, said:

    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. Michele MacKellar, on December 24th, 2011, said:

    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. Alicia D, on December 26th, 2011, said:

    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. Connie, on December 28th, 2011, said:

    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. Alison, on December 29th, 2011, said:

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

  47. Alison, on December 29th, 2011, said:

    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. Alison, on December 29th, 2011, said:

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

  49. Nancy, on December 30th, 2011, said:

    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. Alison, on January 3rd, 2012, said:

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

  51. Nancy, on January 4th, 2012, said:

    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. Joy, on January 11th, 2012, said:

    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. Nancy, on January 13th, 2012, said:

    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. Allison, on February 2nd, 2012, said:

    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. gailstorm02, on February 2nd, 2012, said:

    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. Mother Angelica, on February 2nd, 2012, said:

    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. Alison, on February 8th, 2012, said:

    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. whit, on February 9th, 2012, said:

    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?
    Thanks!

  59. Mother Angelica, on February 11th, 2012, said:

    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. kath smith, on February 13th, 2012, said:

    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. gailstorm02, on February 13th, 2012, said:

    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. Missy, on February 18th, 2012, said:

    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. Alison, on February 19th, 2012, said:

    Whit,
    Read this article: I’ve accidentally eaten gluten – what can I do?

  64. Alison, on February 19th, 2012, said:

    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.

  65. whit, on February 20th, 2012, said:

    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!

  66. Nancy, on February 20th, 2012, said:

    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.

  67. Becky, on February 20th, 2012, said:

    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.

  68. @mpv61, on February 20th, 2012, said:

    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!

  69. Jessica, on February 20th, 2012, said:

    @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.

  70. Jessica, on February 20th, 2012, said:

    @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

  71. Becky, on February 21st, 2012, said:

    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.

  72. whit, on February 21st, 2012, said:

    @ 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!

  73. Lynn, on February 25th, 2012, said:

    @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.

  74. Becky, on February 29th, 2012, said:

    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.

  75. Jessica, on February 29th, 2012, said:

    @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!

  76. Becky, on March 1st, 2012, said:

    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!

    Becky

  77. Becky, on March 2nd, 2012, said:

    Question for everyone,

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

    Thank you

  78. Dr. Georgietta Gdovin, on March 2nd, 2012, said:

    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!

  79. @mpv61, on March 2nd, 2012, said:

    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.

  80. Jessica, on March 2nd, 2012, said:

    @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!

  81. gailstorm02, on March 2nd, 2012, said:

    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!!!!

  82. Michelle, on March 5th, 2012, said:

    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?!

  83. chlsy11, on March 7th, 2012, said:

    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.

  84. Lisa, on March 9th, 2012, said:

    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. :-(

  85. Nancy, on March 13th, 2012, said:

    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!

  86. Sara, on March 14th, 2012, said:

    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?

  87. Angela, on March 15th, 2012, said:

    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

  88. Becky, on March 27th, 2012, said:

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

  89. Angela, on March 27th, 2012, said:

    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.

  90. Elke, on March 28th, 2012, said:

    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).

  91. Corlissa, on March 29th, 2012, said:

    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.

  92. BeckyK, on April 6th, 2012, said:

    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.

  93. Teresa, on April 11th, 2012, said:

    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.

  94. Teresa, on April 11th, 2012, said:

    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.

  95. Becky, on April 12th, 2012, said:

    Teresa,

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

  96. BeckyK, on April 12th, 2012, said:

    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!

  97. Dave, on April 18th, 2012, said:

    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).

  98. Penney, on April 20th, 2012, said:

    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.

  99. whit, on April 26th, 2012, said:

    @ 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?

  100. Bonnie, on May 17th, 2012, said:

    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. :(

  101. Rebecca, on May 18th, 2012, said:

    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!

  102. CoriF, on May 18th, 2012, said:

    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:
    http://www.youtube.com/watch?v=SX2rTfIdpNc&feature=share&noredirect=1

  103. gailstorm02, on May 18th, 2012, said:

    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.

  104. @mpv61, on May 18th, 2012, said:

    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!!

  105. whit, on May 20th, 2012, said:

    @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!

Post a Comment

«
»