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Any Benefit To Getting Tested And Diagnosed Officially?


Live4Hiking

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Live4Hiking Rookie

After having years of joint pain and diagnosed incorrectly with RA as well as having non specific "food hangovers" or "food poisonings", I finally went on a gluten free diet for the last 2 months and wow! I feel like my old self again. Is there any reason to now go in a see a doc to get a blood test and/or biopsy to confirm what I already know - I cant eat glutens and feel ok?

BTW - I decided to go gluten-free after stumbling upon this site and reading all the symptoms and amazing recoveries. So thank you, to all of you!!!!


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ShayFL Enthusiast

The tests will be inaccurate now. Some say you have to eat a fair amount of gluten EVERYDAY for 3 or 4 months for the tests to MAYBE come out positive.

You have your answer.

Congratulations!!!

Lockheed Apprentice

I think the only reason to do it right now is if you need to claim some sort of resulting disability or work accommodation. I came out incredibly ambigious on all my testing except food sensitivity (which shows wheat rye barley oat amaranth millet and hops - so I have something a little more broad spectrum than just gluten going on for whatever reason). My biopsy was inconclusive and my blood test came back with one positive marker and one negative marker so one of them is false. But given that I was having so many issues I did an elimination diet and a gluten challenge and man I just can't eat gluten for sure. I think you have about as firm of a diagnosis as you'll ever have with the current technologies available.

Live4Hiking Rookie
I think the only reason to do it right now is if you need to claim some sort of resulting disability or work accommodation. I came out incredibly ambigious on all my testing except food sensitivity (which shows wheat rye barley oat amaranth millet and hops - so I have something a little more broad spectrum than just gluten going on for whatever reason). My biopsy was inconclusive and my blood test came back with one positive marker and one negative marker so one of them is false. But given that I was having so many issues I did an elimination diet and a gluten challenge and man I just can't eat gluten for sure. I think you have about as firm of a diagnosis as you'll ever have with the current technologies available.

Thanks you guys!!! That was my gut (no pun intended!) feeling, thanks for verifying.

Katsby Apprentice

I am kind of glad I didn't get an official diagnosis mainly because insurance can't turn me down if there's nothing stating that I have Celiac Disease in writing. I think the only benefit is if you are able to get support from an official diagnosis. I think in some countries they give financial aid.

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    • trents
    • Skg414228
      Correct. I’m doing both in the same go though. Thanks for clarifying before I confused someone. I’m doing a colonoscopy for something else and then they added the endoscopy after the test. 
    • trents
      It is a biopsy but it's not a colonoscopy, it's an endoscopy.
    • Skg414228
      Well I’m going on the gluten farewell tour so they are about to find out lol. I keep saying biopsy but yeah it’s a scope and stuff. I’m a dummy but luckily my doctor is not. 
    • trents
      The biopsy for celiac disease is done of the small bowel lining and in conjunction with an "upper GI" scoping called an endoscopy. A colonoscopy scopes the lower end of the intestines and can't reach up high enough to get to the small bowel. The endoscopy goes through the mouth, through the stomach and into the duodenum, which is at the upper end of the intestinal track. So, while they are scoping the duodenum, they take biopsies of the mucosal lining of that area to send off for microscopic analysis by a lab. If the damage to the mucosa is substantial, the doc doing the scoping can often see it during the scoping.
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