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.
Months 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?
Katie says
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.
Susan says
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.
Alison says
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.
Jenny says
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.
Maura van der Linden says
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 🙂
Melissa says
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.
Selena Cate says
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.
@mpv61 says
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.
Wendy says
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.
Anne says
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.
Sara says
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.
Diane says
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.
Anna says
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.
Heidi says
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.
JaniceLwalker says
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)
Michelle says
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!
Rose says
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!!
Teresa says
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!
Terri says
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).
Elizabeth says
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.
Ruthie says
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.
Carol says
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.
Wendy says
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.
Jacque says
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. 😉
Jacque says
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.
Alta says
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!
Susan W. says
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.
Alison says
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?
donna valdez says
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.
jess otieno says
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?
Elke says
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.
Nancy says
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?
Nancy says
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.
Peg says
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 =
Alison says
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.
Peg says
*Sorry for typos and extra line of text!!
kath smith says
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
@mpv61 says
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.
@mpv61 says
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.
Anne says
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.
kath smith says
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
Kayla Moore says
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!
Michele MacKellar says
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
Alison says
Michele,
Ugh – sorry you made that mistake. Further proof of your gluten intolerance in case you needed it! 🙂
Alicia D says
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!
Alison says
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!
Connie says
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!!!!!
Alison says
Hi Connie,
Thanks for mentioning the asthma – I am still trying to get people to believe this one!
Nancy says
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.
Alison says
Nancy,
Interesting – I wonder what was directly causing that. I assume you are gluten-free now?
Nancy says
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.
Joy says
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!
Nancy says
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.
Allison says
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.
gailstorm02 says
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.
Mother Angelica says
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
Alison says
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!
whit says
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!
Alison says
Whit,
Read this article: I’ve accidentally eaten gluten – what can I do?