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Can Biopsy Give Useful Info 8 Months After Gluten-Free?


Chakra2

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Chakra2 Contributor

I had a chance today to ask questions of my mom's GI doctor -- kind of an informal second opinion. I went gluten-free in January trying to address other health issues before I got celiac testing done. My original GI doc said celiac was likely but no need to do challenge or biopsy since my genetic test showed celiac genes and I was doing so much better after going gluten free. My mom's GI doc said he agreed about not doing a gluten challenge (no need to feel miserable) but that I should get a biopsy. He said that a really skilled pathologist can see signs of old damage even months after being gluten free.

I'm trying to decide whether or not to do it -- hassle, expense vs maybe getting a formal diagnosis.

Has anyone gotten useful info from a biopsy many months after going gluten free? Has anyone's biopsy late in the game still shown damage?

I'm 33 and think I might have had celiac disease since infancy, in case that's relevant.


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Jestgar Rising Star

Do you care what they find? Would it change anything you're doing? If the answer is 'no', then why do it?

Roda Rising Star

There was a person on here that opted out of the biopsy initally and then many months later had the EGD and biopsy because I believe she was still having problems. From what I can remember her biopsy was positive and they were able to address some other issues as well. I think it was foodiegurl so maybe she can chime in and talk to you. Celiac isn't the only thing that can show up on an EGD. I have had two, one before gluten free after my positive blood work and a repeat one just in April. I hesitated on the repeat EGD for four months but then decided to have it done. My small bowel biopsy was good this time but they found a gastric ulcer. So I'm glad I had it done again because the ulcer was new as I didn't have any on my scope I had in 2008. You just need to weigh the pros and cons and make the decision that is best for you.

nora-n Rookie

I know about one person who was very ill with celiac, and had a positive biopsy.

Then he ended up in a different hospital after going gluten free. After some weeks gluten free they happened to do another biopsy which was clear.

They denied he could have had celiac in teh first place and refused to read the diagnosis or any paperwork from the first biopsy, and said it would be impossible for anyone to go completely gluten free. But he had a degree in chemistry and another degree and actually had mamaged to go completely gluten free.

Anyway, they found the small intestine was healed.

I really think it varies how fast the gut heals.

Some say it heals fast with children, and slower with adults.

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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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