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Negative Biopsy

ashlee.ream

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ashlee.ream Rookie
ashlee.ream
Posted

but i have all of the symptoms of celiac and a positive blood test. maybe its crohns or IBD? my mom and i both think i do have celiac disease.

the GI said i dont have celiac which doesnt make sense to me.

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maximoo Enthusiast
maximoo
Posted

Did you go back on gluten prior to the biopsy? Or were you gluten-free up till the time you were scoped?

Jai Rookie
Jai
Posted

Well, I had an "inconclusive" blood test and negative biopsy (of course this was done several months post gluten-free) We had suspicions and there was no way I could continue to eat gluten while waiting for the biospy (gotta love Canada's healthcare system!)

My mother has celiac and I had 100% the same symptoms as she had. I eliminated gluten and s...l..o..w..l..y but surely I got better. My gastro felt confident in saying I had celiac based on elimination of other diseases and family history.

Tests are not perfect! Despite my results I will NEVER eat gluten!

ashlee.ream Rookie
ashlee.ream
Posted
  • Author

i wasnt eating gluten when they did the biopsy. it makes me really sick and my bones and muscles ache. ect. my mom and i say i have celiac even though the biopsy says otherwise.

Jai Rookie
Jai
Posted

i wasnt eating gluten when they did the biopsy. it makes me really sick and my bones and muscles ache. ect. my mom and i say i have celiac even though the biopsy says otherwise.

oh well, if you weren't eating gluten, then there you go! You have to be in order for the biopsy to be accurate. And do you feel better when you stop eating gluten? Do you need more of an answer than that? I've had a top GI tell me that clinical results are worth way more! He said negative biopsy and all, he considers me celiac...

ashlee.ream Rookie
ashlee.ream
Posted
  • Author

yes i feel alot better when i dont eat gluten. thank you for the reply :)

  • 2 weeks later...
Retrotea Newbie
Retrotea
Posted

I'm not doctor, obviously, but if the blood tests are positive I'd say you have celiac. If it's literally looking at your "tract" and you haven't eaten gluten then it would be negative. And I would think regardless if your blood test was positive, no matter the GI tract test, then it doesn't matter. I'm told I'm celiac and I honestly don't have many issues aside from joint, teeth issues, vitamin deficiency, passing out once in awhile and bloating/stomach aches. I bet if I had my tract checked it wouldn't be that bad and may even be negative, etc, even when I do eat gluten.

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ashlee.ream Rookie
ashlee.ream
Posted
  • Author

thank you! :)

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      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
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