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bk-63

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bk-63 Newbie

Well, I guess for starters I should introduce myself. I'm a 22 year old grad student in Missouri and have been gluten free for right at about a year. I discovered this site and forum a few weeks ago while trying to research different products and have looked at it almost daily since then, so I joined! I self diagnosed myself last year after have no luck with various doctors and diets, and having a discussion with a friend who had recently found out she was gluten intolerant. I have no doubt that gluten was the problem, as every irritating, confusing, and embarrassing symptom has since cleared up, but I still think it would be nice to know for sure. I know what the doctors say about the different tests and how accurate they are, but I guess I'm wondering whether its really worth doing? Thanks!


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Kay DH Apprentice

Since you have been gluten-free for a year, the celiac panel or other blood tests would likely be normal. The endoscopy/biopsy and blood tests require +3 weeks of eating lots of gluten if a person has been gluten-free. My celiac panel was run after going gluten-free, and was normal (my GP has since learned about celiac). My GI only had me on the gluten challenge for a week and only took one endoscopy biopsy, which was normal. You could have the genetic test for HLA-DQ2 and DQ8, which don't require being on gluten. Even lack of these genes does not exclude celiac or gluten sensitivity, because researchers are finding more genetic markers. Best test for leaky got and inflammatory response to gluten is how you feel when off the nasty compound molecule, and how you feel when reintroduced. There is an estimated 5% diagnosis of people with celiac. I suspect many of the remaining 95% have diagnosed themselves, including me. If you are in a country that give tax breaks or other benefits to a celiac/DH diagnosis, then that is a contributing factor. This is not true of the US.

bk-63 Newbie

Thank you for the information! I'd definitely rather stay self diagnosed and not have to eat gluten again for a test :(

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      Thank you that’s really helpful, hopeful won’t have to have a biopsy.
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