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Rebound Effect?
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Hi all,

So I am new here -- just recently started eating gluten-free after years of undiagnosed stomach issues. I've been tested for celiac (while eating wheat) and it came up negative, but I recently got some family history news that leads me to believe gluten might be the issue causing my problems.

So I cut out gluten a few weeks ago, and I've noticed now that even when I have the slightest amount of gluten, I have terrible stomach issues. It is quite dramatic and happens quickly -- and is much worse than the stomach issues I had a month ago.

Any thoughts on why gluten is so much worse now when I get even a little bit, as compared to a month ago when I was eating bread and pasta on a regular basis and only having stomach issues sporadically?

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It happens. It's common to have a stronger reaction after going gluten-free than you had before going gluten-free. That's why so many refuse & simply can not tolerate glutening themselves for testing after they had already gone gluten-free.

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It happens. It's common to have a stronger reaction after going gluten-free than you had before going gluten-free. That's why so many refuse & simply can not tolerate glutening themselves for testing after they had already gone gluten-free.

Thanks for the reply. I had been holding out hope that I wasn't gluten intolerant, but my reaction lately has me thinking I need to start coming to terms with it.

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Your tests may not have consisted of the complete celiac panel & that's why you came up negative. Most docs don't know what the full panel consists of. Then there are also false negatives --- close to or 30%.

At any rate you have discovered your problem as well as the answer to the problem. Good for you!

What I said before about stronger reactions also applies to those of us with dh (dermatitis herpetiformis) the celiac rash. And there's NO WAY I'm going back on gluten to prove to some doc something that I already have proof of. It's going to take long enough for the antibodies to get out of my skin so I don't get this anymore --- I will not do anything to knowingly prolong that process.

And welcome to the board!

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Welcome :)

Your observation is a good one. And a big clue.

And I always say to people who ask about it: if you did NOT have a gluten problem, you could take it out for months or years, eat it and be perfectly fine.

If you do not feel fine, that's your answer.

You say it only happened sporadically, but your system was so flooded with gluten back then (eating it on a regular basis) and so it is very difficult to tell when exactly you were sick from it. We get used to feeling crappy. We adapt.

Taken out entirely, you felt better and one small amount will give you a reaction and get your attention more quickly.

You should see what happens to me from trace gluten cross contamination....It's not pretty. :blink:

To echo SQUIRMY's thought here, I agree that just because the celiac panel was NEG, it does not necessarily mean you are not gluten sensitive (or a celiac- to- be or an actual celiac ) My blood tests were negative.

If gluten makes you feel bad, don't eat it.

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I was only gluten free by accident before testing. I was doing an Adkins type diet with my mom. I got SOOOO much better in 2 weeks but my doc wanted to test for Celiac. So he said I needed to be eating Gluten and I had a big bowl of pasta the night before. OMG I had the worst night and last 3 weeks. I have continued to eat gluten in prep for a biopsy but then the blood work came back negative. He told me he believed since I had even by accident been gluten free that is was a false negative and to continue to eat gluten to retest. I have to tell you I am the sickest I have ever been in my life with a week to go. I am calling him in the morning and telling him I am done! I can't do it. I can barely stand up, GI problems are awful! I am so swollen I can't bend my legs. I didn't have a reaction this strong till after being Gluten free and that was only for 2 weeks! Obviously my body is telling me something.

I guess I am just saying yes you can get that much worse after restarting gluten even after a short period of time off it. ;)

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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