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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?  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,

In the last two years I have been diagnosed with Hashimotos and B12 deficiancy... started b12 shots (every two weeks) and thyroid meds. In the last 6 months or so things for me went back down hill. Wieght gain horrible fatigue horrible peripheral neuropathy If I ate even a small meal it felt like I had swallowed a watermellon for days. Forget a normal bathroom rotuine. Horrible headaches some for a week at a time HUGE hair loss and what I thought was razor rash ALWAYS on my legs from ankle to hip. ETC...

I had blood tests about 6 months ago for crohns and celiac they were negative (although my crohns titer was up in the positive range). I also had a "negative" endo and colonoscopy. I say "negative" because it said I had long term small intestinal swelling....

Because of these results I was diagnosed with IBS and put on dicyclomine.... (it quit working)

The PA I was seeing recently left the office I visit and I had to reestablish myself....

Almost immediatly she asked if I have ever heard of celiac or gluten free....

another blood test for celiac ordered....,

I have been (I am trying really hard crosscontamination is a pain!) gluten free for about 5 days

The new test is back negative

however I feel SO much better after only 5 days can this all be psychosomatic?

 

I hope I wasnt too confusing I just didnt want to go over the last 5 years of doctors visits.... questions and answers welcome.

Thanks

Justsoconfused

Edited by Justsoconfused

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Hi Justso,

 

Welcome to the forum! :)

 

Not having celiac disease doesn't mean you don't have a problem with gluten.  NCGI can cause similar symptoms, and won't show up on celiac disease tests.

 

Non-celiac wheat sensitivity article
http://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

Innate immune response in AI diseases
http://www.celiac.com/articles/23149/1/Gliadin-Triggers-Innate-Immune-Reaction-in-Celiac-and-Non-celiac-Individuals/Page1.html
 

 

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Paul is right, Non-celiac gluten intolerance is much more common than celiac disease and it has basically the same symptoms as celiac, just minus the villi destruction. It could be NCGI, i have seen stats that state it is resent in 6-30% of the population (I've seen 6% sited the most). Because you have Hashimoto's and low B12 , I would say there is a chance you have celiac disease that is not serologic ally positive or seen in biopsy, but it is a slim chance.

Either way, treatment is a gluten-free diet. Best wishes. I hope you continue to feel better.

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I concur with the above peeps. :)  Good advise.

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I am in exactly the same boat! negative tests but anemic and with all the celiac symptoms - gluten-free for 6 days and I feel like a different person already - I don't know what to think either!

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