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      • Frequently Asked Questions About Celiac Disease   09/30/2015

        This 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 email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity

    Tested Negative

    Started by sick&tired,

    2 posts in this topic

    Posted · Report post

    I'm new to the board. I've read articles about CS here but I guess not enough. After years of agony and endless tests with no answers, I finally read about Ciliac Sprue and put myself on a gluten-free diet. I was elated when my pain, bloating, mental fuzziness, and fatigue suddenly went away. I stayed well for about 5 months and then had a bad relapse after eating in a Chinese restaurant. I think I had several things to eat I shouldn't have, including soy sauce.

    So I started investigating more and realized I could really only eat things that were whole foods or prepared items that were already deemed OK. I can deal with it. Anything is better than my quality of life before. As I read more, I realized my grown children and grandchlidren could be at risk. I wanted to get diagnosed so my family would have some definite results in hand if I tested positive.

    I went to my GP Doc and asked him for the test for antibodies to endomysium and tissue transglutaminase. He is not at all familiar with this disease and asked me why I would want the test if I tried the gluten-free diet and felt better. I answered I was especially concerned about my grandbabies having it and possibly becoming malnourished.

    He is also not at all familiar with the blood tests and after calling the lab to see if they could accomodate the tests, he was told they were esentially the same test. (Are they?) So I only had the tissue transglutaminase, I think.

    Anyway, the office called me today and told me the test was negative. I was crushed because if it wasn't CS I must be crazy! Then I read here how one must be "active" to test positive. I can't live like that. I was so, so, so sick last summer. I felt my life was over.

    Any other options? And any Docs in the Metro Detroit area who are in the know?

    I do have other auto-immune and connective tissue diseases. For me, they pale in comparison to the pain and agony of my Celiac Sprue symptoms.

    Thanks so much for your time and sharing.


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    Posted · Report post

    If you have been gluten-free for that long the test would show up neg. I think you have to be eating Gulten for a while to show up pos. You may want to try the Enterolab you can e-mail Dr. fine and ask if it would work for you. You can do the genetic test and that would tell you if you have the gene.

    --Good luck,



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