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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 Celiac.com's FREE weekly eNewsletter   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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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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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    • Hi Matt,   Thank you very much for a thorough response. Your link seems to cover pretty much all the questions one might have in my current situation. I appreciate it.   Have a wonderful day, Lex
    • I am worried about the cost but I think having that test done would help me rule things out. Either way I need to see a G.I my issues are getting out of control.
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