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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.

Rebound Effect?
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6 posts in this topic

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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  • Forum Statistics

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    • Will my doctor test me? So many symptoms...
      Remember that you have to be eating a normal gluten diet for the testing so don't cut back & don't stop eating it. Make sure they do the full, current celiac panel: Anti-Gliadin (AGA) IgA
      Anti-Gliadin (AGA) IgG
      Anti-Endomysial (EMA) IgA
      Anti-Tissue Transglutaminase (tTG) IgA
      Deamidated Gliadin Peptide (DGP) IgA and IgG
      Total Serum IgA   
      Also can be termed this way: Endomysial Antibody IgA
      Tissue Transglutaminase IgA 
      GLIADIN IgG
      GLIADIN IgA
      Total Serum IgA 
      Deamidated Gliadin Peptide (DGP) IgA and IgG
    • 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!    
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