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Question About Results
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My genetic testing came back positive for carrying the genes. My blood work was negative. My biopsy showed damaged. He said it's possible for people to walk around with the genes and not have celiacs. He told me to try the gluten free diet to confirm and I been doing it since October 2011. I'm not getting this... Anyone else have results like mine?

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My genetic testing came back positive for carrying the genes. My blood work was negative. My biopsy showed damaged. He said it's possible for people to walk around with the genes and not have celiacs. He told me to try the gluten free diet to confirm and I been doing it since October 2011. I'm not getting this... Anyone else have results like mine?

Yes. My blood work was either negative or non-conclusive. (It was almost seven years ago so I don't remember.) The gastroenterologist bet me $50 that I didn't have celiac disease but my internal medicine doctor was sure I did. I had already had a colonoscopy that didn't show any major problems a year before. My doctor insisted that the next colonoscopy have biopsies EVERYWHERE. I only had damage in one small area close to my ileocecal valve, but I was diagnosed with having celiac disease and went on the gluten free diet. I got better almost immediately. My problems with fibromyalgia improved immensely and my stomach problems stopped. Now I only have problems when I accidentally get gluten.

Note of caution...there is gluten in LOTS of things - salad dressings, salsa, soy sauce, spices, soup, shampoo, makeup.

There is a lot of information available about what foods are safe. Good luck.

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My genetic testing came back positive for carrying the genes. My blood work was negative. My biopsy showed damaged. He said it's possible for people to walk around with the genes and not have celiacs. He told me to try the gluten free diet to confirm and I been doing it since October 2011. I'm not getting this... Anyone else have results like mine?

You aren't seeing any improvement yet?

Sounds like you have celiac, he just wants you to eat gluten free to confirm.

I went gluten free in November. I have had to stop eating eggs, and now lactose to feel better.

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I see an improvement on and off. But my nutritionist said she thinks because i have such a bad anxiety disorder and stressful life that my stomach isn't healing as fast as it could be. I can't tolerate corn, eggs, or alcohol

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    • Thanks.  This is very helpful.  Our first post diagnosis grocery store trip took several hours, just trying to read labels to make sure everything is safe.   Our son loves bread and this going to be the hardest part. 
    • i would agree with most of your assessment but overall the popular chefs are very aware. Ed Kenny at Town did have  gluten-free options on the menu.  Mavro's will fix something special given advance notice but its expensive.  excellent but very expensive.  Alan Wong is very aware and will have his staff prepare something as well.  We did find many options at both Oahu  whole foods -- mostly  with tofu. the only thing  there is to be aware of cross contamination with things  next to it.  they make a great gluten-free southwestern tofo dish which is great but not if its sitting next to anything with gluten. Its not whole foods but people use the smae  spoons and tongs i found more at   down to earth in peal city than by  University ave  
    • Hi,  I'm in KOna but my kaiser doctor just retired  who was pretty good about it. I dont know of a specialist here  but most of hte kaiser docs wil test you if thats when you need to talk to them about. good luck  
    • Yes.  And wouldn't it have been nice if your doctor had tested you for Celiac disease before you went gluten free? Then you would know if your issues are Celiac or not.  That would help you know how careful you need to be, what other illnesses and problems to look for, whether you might be passing a genetic disease on to your children, if you should look for another cause of your symptoms, etc  
    • I would be very careful in giving this kind of advice, she is in an advanced stage. I was there and one additional symptom that I was getting was a strong urge to commit suicide so eating gluten for three months might not be the way to go for some people. If a gluten free diet stop the problems them gluten is the problem or a least part of it. I eliminated MSG from my diet because I notice that the common denominator for some products that affected my well being was MSG. I eliminated oats because I notice that I would get canker sores every time I ate it. Wheat is what affect my brain the most, irritability gets uncontrollable, my mental capacity greatly diminish, rash in my arms appear, can't sleep,etc. Barley makes my stomach groan, and constipated. Will try testing how Rye affect me some later time. 
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