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Tested Negative
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2 posts in this topic

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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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,

Kayla

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    • Hi Alok, I suggest not eating any soy.  Soy is one of the top 8 food allergens in the USA.  Soy has other things about it that are not helpful to us.  Plus it is often sprayed with pesticides that are not so great for people.  Maybe you can try some other food for a while?  Also it might help to wash all your vegetables before using them. Just some ideas, I hope they help.
    • What she said!     The antibody panel is an important part of follow-up!
    • I have Celiac, Hashi's thyroid disease, Sjogren's Syndrome and Reynaud's Syndrome.  All have gotten better, inflammation wise, after 11 years gluten free.  I am very strict with my diet, never take chances if I feel the food is not really gluten free and limit the number of times I go out to eat.  I am not saying I never go out but it is normal for my husband and I to not see the inside of a restaurant for 3-4 months at a time and then I only eat at the places that have never glutened me.  I am lucky in that the state I live in has 3 restaurant chains that are run/owned by Celiac's, so they get it right every time. You have not been gluten free for very long, in reality.  It took me three years to completely rid myself of all symptoms related to the disease.  I was 46 at the time of diagnosis.  I know it is hard to accept that healing can take that long but you have to measure it differently.  Looking back, you should feel better than you did a year ago.  As time goes on, healing slowly takes place until you realize that certain problems have disappeared.  It is not as cut and dried as taking an antibiotic for an infection. http://www.drweil.com/drw/u/ART03424/Elevated-Creactive-Protein-CRP.html  Read this article on elevated c reactive protein. It is by Dr. Weil, who is a Harvard trained physician who chose to go the more natural route to healing people.  All his stuff is interesting.  Yes, your elevated level will most likely come down, as you heal better.  Pay attention to it but don't let it freak you out too much! 
    • Hi Calla, I think the safe answer is 12 weeks on gluten for a blood test.  I am pretty sure they say 2 weeks on gluten for the gut endoscopy.  But usually people/doctors don't want to  do an endoscopy before a positive blood test, so catch 22 there. There's a chance you still have active antibodies in your blood after 3 weeks off gluten.  But nobody can tell you for sure.  If you can get you doctor to test you now and in 9 more weeks if you are negative now, that might work.  If the doctor is willing to do 2 tests, that would be great. The best thing would have been to do all celiac disease testing before going gluten-free.  But sometimes it doesn't work out that way. The University of Chicago celiac center has an FAQ that answers some of your questions. http://www.cureceliacdisease.org/faq/i-dont-have-the-money-to-get-tested-for-celiac-disease-but-a-gluten-free-diet-makes-me-feel-better-is-it-okay-to-start-the-diet-without-being-diagnosed/ Welcome to the forum!  
    • Couldn't have said it better!  
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