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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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    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
    • trents
      @GlorietaKaro, your respiratory reactions to gluten make me wonder if there might also be an allergic (anaphylaxis) component at work here.
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