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Negative Biopsy Results


resoree

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resoree Newbie

Hi. I had a positive blood test result more then six months ago and started my gluten free diet then. I still had some stomach problems every now and then but managed to gain some weight, but I also lost some recently. Because I have an HMO, it took more more then six months to get my upper endoscopy and sigmoidoscopy done. (i read others experiences and no one had a painful endoscopy experience like me. I vomited and my whole esophagus hurt for almost a week!) Anyways the results from the biopsy came out negative. Do you think the results were negative because i was on a gluten free diet for so long (i did cheat every now and then)? What do they do with the biopsies at the lab? Since then (four days ago) i stopped my gluten free diet and so far its been good. I just wondered if it was possible to have a positive blood test and a negative biospy.

Leslie


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lovegrov Collaborator

Postive blood test with a negative biopsy is not at all unusual even among people who keep eating gluten. The person taking the biopsy samples might miss the damaged areas or the lab might not be experienced reading celiac slides. In addition, you should not have gone gluten-free before the biopsy because, yes, six months is indeed enough time for the damage to heal. The final question is what criteria does your lab and doctor use to establish celiac? Some won't call it celiac unles your villi are completely flattened (yours wouldn't be because you went mostly gluten-free) but more and more experts are saying it should be called celiac with MUCH less damage.

Depending on which blood tests you had, these rarely give false positives. What blood tests were positive? What symptoms were you having? Did they resolve on the gluten-free diet? Did you feel better on the diet? These are some other questions you have to ask yourself.

richard

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    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • 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—
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