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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Anyone Not Have A Stronger Reaction To Gluten After Going gluten-free?
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16 posts in this topic

I've noticed that this seems to be a common theme, but it also may just seem more noteworthy to post about a more severe reaction to gluten after going gluten-free than to post about an unpleasant but not especially spectacular reaction.

Starting this thread in the hopes of pulling for the other end of the sample and maybe getting a more balanced perspective.

And yes, I am aware that even if you don't have a huge reaction, with celiac it is not OK to eat gluten, and it *will* damage you even if you don't have an immediate, punishing reaction. From the sound of it, accidental gluten ingestion happens to most of us at some point, though, so it strikes me as relevant information even if fully committed to being gluten-free.

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I was going to post something similar. I was gluten free for 3 weeks then decided to "test" (a piece of bread) and had no reaction. At least no tummy ones. I was really surprised since my tummy has still been really bad even without gluten so maybe I really don't have a gluten issue?

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If I accidentally get some gluten, i.e., in a Rx or such, my reaction is the same as before gluten free. Of course, I recognize it for what it is and am more aware of it, but it is not any different.

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Outside of some mild cramping and "C" on occasion, i seem to really not have any :blink: so strange.

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I fit this post. I had no symptoms prior to going gluten free - and have had no symptoms since going gluten free - four months ago. If it weren't for the positive blood tests and positive endoscopy - I would question whether or not I really had Celiac! I can't imagine that I haven't messed up being totally gluten free over the past four months. I was actually hoping to get a tiny bit more sensitive so I would know if I am sticking to the diet correctly.

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I was glutened a couple of times in the first two months and I remember those reactions being the same as those I had before going gluten-free. The symptoms just seemed more noticeable because I was not longer used to stomach aches and bloating.

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Not me. I was diagnosed as a silent celiac and have been strictly gluten free for about 19 months now. As far as I know I have only been accidentally glutened twice. The only way I knew is that I found that one product packaging had been labelled incorrectly; the other was in a restaurant in Europe that caught my mistake after the fact. Didn't get sick or anything but I am still unwilling to ingest any gluten. Sometimes I wish I had some indication of being glutened - not very sick, obviously, but just something minor.

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I fit this post. I had no symptoms prior to going gluten free - and have had no symptoms since going gluten free - four months ago. If it weren't for the positive blood tests and positive endoscopy - I would question whether or not I really had Celiac! I can't imagine that I haven't messed up being totally gluten free over the past four months. I was actually hoping to get a tiny bit more sensitive so I would know if I am sticking to the diet correctly.

Omg this is pretty much exactly me, even down to the timings. I got screened because my sister was diagnosed, however I've never had any noticable symptoms. Accidentally got glutened a few days ago (was so annoyed, my own fault for not checking properly) and didn't really react at all.

I know that those who have strong reactions would call us lucky, but I was actually hoping I'd have something noticable as a barometer for whether I'm getting CC'd or accidentally ingesting. I know that I have to follow gluten-free strictly, but without any tangible benefit after 4 months it's pretty frustrating.

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Physical symptoms are a poor indication of what is actually happening in the intestine. Even people on a strict gluten-free diet can have damage that persists for a long time, even years. While this forum is not intended to provide medical advice, everthing I have read would indicate that if you have had a positive diagnosis you should be avoiding even traces of gluten.

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I've been gluten free for 8 years, and for the first six of them I had very strong reactions

to the rare glutening I experienced. I went over a year without being glutened, and then

this past May I was glutened by a restaurant. I knew it happened in the restaurant, but

I am a 48-hour reactor, so I had time to prepare. It was the mildest reaction I've ever had,

which may have something to do with the digestive enzymes, detox tea, and charcoal I

started taking right away, or might not. So either that combo works GREAT (possible) or

my reactions are now much less severe. Or both!

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Ummm...in my post above I spoke too soon. Had the first obvious gluten reaction in my life this week. And by obvious I mean something that I could without question immediately tie obvious symptoms to a product that contained gluten. Of course I would never, ever deliberately ingest gluten and I, too, realize that despite being so-called asymptomatic (I had other symptoms in retrospect such as miscarriages but did not tie it to gluten at the time) damage is still being done. Anyway, 15 little minutes after eating 1/4 of a pudding cup, I suddenly had a migraine (rare with me these days), vomiting, swollen lips, diarrhea and plugged sinuses. Sure enough. Somehow I had missed "wheat starch" on the label. I am such an avid careful label reader! It is actually a relief that I got sick so I now know what to look out for. It was very difficult before not having a clue whether I was glutened or not! Well, now I know. ;) Makes me wonder whether I had some sort of allergic reaction, too, considering the swollen lips and plugged nose/sinuses. Now I can better relate to those of you who get so ill!

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love2, with swollen lips and vomiting that does sound like a possible allergic reaction. May be worth talking to a doctor to see if you sshould have epipens around. I am not an expert, but my son has nut allergy, and we were advised that if you have had a reaction it can become more severe on subsequent exposures.

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love2, with swollen lips and vomiting that does sound like a possible allergic reaction. May be worth talking to a doctor to see if you sshould have epipens around. I am not an expert, but my son has nut allergy, and we were advised that if you have had a reaction it can become more severe on subsequent exposures.

Yes - I'm booking a doctor appointment anyway and will definitely bring this up. It does indeed sound like an allergic reaction. I am thankful Benadryl took care of it but one never knows with subsequent exposures!

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I didn't have strong reactions at first, I might get a little bloated if I ate quite a bit (at first I used to cheat here and there), but over the last year and a half I stopped cheating and every time I've been accidentally glutened since, it's been about 10x worse then the last time. It's strange how much it increased for me, especially since I was pretty well asymptomatic at first. Now if I get glutened I'm very sick for a week (bloating, nausea, fatigue etc...) and it's been a month and a half since my last gluten instance and I'm still feeling it unfortunately. It also seemed to have knocked out my immune system too, as I am normally very healthy but have been sick with either the flu or a cold since then.

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I didn't have strong reactions at first, I might get a little bloated if I ate quite a bit (at first I used to cheat here and there), but over the last year and a half I stopped cheating and every time I've been accidentally glutened since, it's been about 10x worse then the last time. It's strange how much it increased for me, especially since I was pretty well asymptomatic at first. Now if I get glutened I'm very sick for a week (bloating, nausea, fatigue etc...) and it's been a month and a half since my last gluten instance and I'm still feeling it unfortunately. It also seemed to have knocked out my immune system too, as I am normally very healthy but have been sick with either the flu or a cold since then.

Don't underestimate how much of the "lingering glutening" might be the flu. If you're in the US, flu is EVERYWHERE right now.

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I got "glutened" today at work. I have been gluten-free since Jan. 3. I needed a fork for my lunch, and went to the cafeteria to get one. 15 minutes after eating, I had horrific diarrhea - and was in the bathroom for 15 minutes. The only thing I can think of, is the students touch as many forks as they can before they ever pick one.

No more cafeteria forks for me!!

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    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
    • Will my doctor test me? So many symptoms...
      Welcome, @iwillmoveamountain! Of course you are not wrong to pursue getting testing for celiac. My advice is to drop that doctor and find a new one, preferably one who is celiac savvy, and who will listen to you and test you for the disease.  
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