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Rome

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Rome Newbie
Rome
Posted

Hello,

I am new to this forum. I was dx with MC 5 yrs ago. A couple of weeks ago I had blood drawn to test for transgluminase IgA and endomysial(?) blood test. Anyway, they both came back positive for celiac according to my GI. I am not sure of the lab values, but I will try to find out. Anyway, I had a colonoscopy and endoscopy today to confirm the dx of celiac sprue. The doc said all looked good on the endoscopy, no inflammation noticed. My question is, can you have a positive blood test with a negative biopsy? I hear of false negatives all the time, but false positives? I should find out results in about a week. The doc did say that I am for a fact gluten intolerant.

Thanks!

Rome

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Jestgar Rising Star
Jestgar
Posted

If you have a positive blood test, then somewhere in your intestine you have enough damage to allow food proteins to leak into your blood. Just because it wasn't in the part they can see doesn't mean it isn't there.

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    • trents
      Eating gluten before blood test

      By trents · Posted

      Understood. And don't beat yourself up about this. Many are in the same boat as you, having experimented with the gluten-free diet before getting formerly tested. It is a logical, common sense approach when you don't have the knowledge about how testing works or you don't have the healthcare resources to afford testing. And some experience such severe reactions to gluten that it is impossible to get through the gluten challenge in order to get tested. So, they must live with the ambiguity of not knowing for sure if they suffer from celiac disease or NCGS. But at the end of the day, the antidote is the same for both. Namely, life-ling abstinence from gluten. Recently there was an article on posted on this forum about the develop of a new testing method for diagnosing celiac disease that do not require a gluten challenge. It is still in the developmental stage and probably years away from becoming main streams even if it pans out. But there is hope at least.
    • Dema
      Eating gluten before blood test

      By Dema · Posted

      Ooh thanks for all the info I'll check them out, though I may not be functional after 6 slices for 6 weeks 😅
    • Dema
      Eating gluten before blood test

      By Dema · Posted

      alright thank your help! 🤍
    • Scott Adams
      Eating gluten before blood test

      By Scott Adams · Posted

      Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      Celiac symptoms but negative endoscopy and antibody test + family history of gastro problems

      By Scott Adams · Posted

      Your experience is incredibly common and frustrating for many in the celiac and gluten-sensitive community, and it's especially challenging with the added layer of healthcare disparities for people of African descent. A negative endoscopy and blood panel, while the gold standard, are not infallible and can miss cases, particularly if you weren't consuming a significant amount of gluten leading up to the tests (the "gluten challenge"). Your dramatic improvement on a gluten-free diet is the most critical piece of evidence here—your body is giving you the answer the tests could not. The symptoms you're describing now, especially the dyshidrotic eczema and blister bumps, are huge red flags for a gluten-related disorder, and your GP dismissing the possibility of dermatitis herpetiformis without a biopsy is a significant oversight. Requesting a new dermatologist and specifically asking for a skin biopsy next to an active lesion (not on it) is the absolute best next step. In the meantime, documenting your symptoms with photos and a food/symptom diary will build a powerful case for yourself. While the financial burden of a gluten-free diet is very real, your health is the priority; perhaps focusing on naturally gluten-free whole foods like rice, beans, and vegetables, rather than expensive processed substitutes, could be a more sustainable path forward until you can get a definitive opinion.
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