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Anyone Not Have A Stronger Reaction To Gluten After Going gluten-free?
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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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    • Hi Calla, I think the safe answer is 12 weeks on gluten for a blood test.  I am pretty sure they say 2 weeks on gluten for the gut endoscopy.  But usually people/doctors don't want to  do an endoscopy before a positive blood test, so catch 22 there. There's a chance you still have active antibodies in your blood after 3 weeks off gluten.  But nobody can tell you for sure.  If you can get you doctor to test you now and in 9 more weeks if you are negative now, that might work.  If the doctor is willing to do 2 tests, that would be great. The best thing would have been to do all celiac disease testing before going gluten-free.  But sometimes it doesn't work out that way. The University of Chicago celiac center has an FAQ that answers some of your questions. http://www.cureceliacdisease.org/faq/i-dont-have-the-money-to-get-tested-for-celiac-disease-but-a-gluten-free-diet-makes-me-feel-better-is-it-okay-to-start-the-diet-without-being-diagnosed/ Welcome to the forum!  
    • Couldn't have said it better!  
    • If you are going for an endoscopy, then please ask for a celiac antibodies COMPLETE panel.  This will help you determine if you have been diet compliant (zapped by hidden sources of gluten or accidental cross contamination) and if your doctor misses the (possible) damaged areas during the procedure.    That way you can rule out celiac disease and THEN worry about the possibility of other AI issues.   I did this last summer.  I got really sick.  My GI thought SIBO right off the bat.  But I asked just to be tested for celiac disease.  Sure enough, I had elevated antibodies.  No need to test for SIBO or anything else at that point.  I just waited a few months for symptoms to subside.   Good Luck to you!  
    • That's good Megan, that you were tested.  Many people have the genes, but only some develop the disease.  Your doctor is right about celiac often appearing after some kind of physical stress or illness. The tricky thing about eliminating one food is that you body may be reacting to multiple foods.  So not getting better could mean you just eliminated one problem instead of 3. It's not unusual to have digestion issues for quite a while after going gluten-free.  Our guts are damaged and that damage has to heal.  But it can't heal until the immune system stops it's attack.  The immune system attack/reaction can keep going for weeks to months.  So it can be a slow recovery.  Often people report getting better and then getting worse and going back and forth on symptoms. What doesn't help is that our bacteria in our guts can get really screwed up by the disease process.  We can't properly digest things so there is more undigested food for bacteria to thrive on.  Avoiding sugars and carbs can help with that issue. Here are some starting the gluten-free diet tips for the first 6 months.  Some of these you have already taken care of: Get tested before starting the gluten-free diet.
      Get your vitamin/mineral levels tested also.
      Don't eat in restaurants
      Eat only whole foods not processed foods.
      Eat only food you cook yourself, think simple foods, not gourmet meals.
      Take probiotics.
      Take gluten-free vitamins.
      Take digestive enzymes.
      Avoid dairy if it causes symptoms.
      Avoid sugars and starchy foods. They can cause bloating.
      Avoid alcohol.
      Watch out for cross contamination. Helpful threads: FAQ Celiac com
      http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/ Newbie Info 101
      http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/
    • yes, I was tested for it. They said after stomach surgeries and other major things causing that much stress on your body you can become intolerant to gluten. It happened to my aunt as well who was in a horrible car accident. They said you can always carry the gene in your body and having that much stress on your body can start it.
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