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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
      Let me hasten to add that if you will be undergoing an endoscopy/biopsy, it is critical that you do not begin efforts to reduce gluten beforehand. Doing so will render the results invalid as it will allow the small bowel lining to heal and, therefore, obscure the damage done by celiac disease which is what the biopsy is looking for.
    • Scott Adams
      This article, and the comments below it, may be helpful:    
    • Scott Adams
      That’s a really tough situation. A few key points: as mentioned, a gluten challenge does require daily gluten for several weeks to make blood tests meaningful, but negative tests after limited exposure aren’t reliable. Dermatitis herpetiformis can also be tricky to diagnose unless the biopsy is taken from normal-looking skin next to a lesion. Some people with celiac or DH don’t react every time they’re exposed, so lack of symptoms doesn’t rule it out. Given your history and family cancer risk, this is something I’d strongly discuss with a celiac-experienced gastroenterologist or dermatologist before attempting a challenge on your own, so risks and benefits are clearly weighed.
    • Greymo
      https://celiac.org/glutenexposuremarkers/    yes, two hours after accidents ingesting gluten I am vomiting and then diarrhea- then exhaustion and a headache. see the article above- There is research that shows our reactions.
    • trents
      Concerning the EMA positive result, the EMA was the original blood test developed to detect celiac disease and has largely been replaced by the tTG-IGA which has a similar reliability confidence but is much less expensive to run. Yes, a positive EMA is very strong evidence of celiac disease but not foolproof. In the UK, a tTG-IGA score that is 10x normal or greater will often result in foregoing the endoscopy/biopsy. Weaker positives on the tTG-IGA still trigger the endoscopy/biopsy. That protocol is being considered in the US but is not yet in place.
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