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At Least 8-11 Biopsies Required For Accurate Results


love2travel

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love2travel Mentor

As I've already mentioned on a few other threads, last night I heard an excellent presentation on celiac disease and the importance of proper biopsies. Insist that your surgeon takes at least 8-11 biopsies for greater chance of accuracy rather than the usual 3. In Canada (and presumably similarly in the US) only 39% of biopsies are done CORRECTLY!!! No wonder there are so many negative results when these poor folks really do have celiac disease.


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Takala Enthusiast

Good grief. :(:o<_<:blink::ph34r:

maximoo Enthusiast

Hi where did you hear it? on a radio station? on the net? Please provide details. I m sure everyone here would love to hear it including me.

cdog7 Contributor

Wow. That would explain a lot. :-/

love2travel Mentor

I was at a lecture in person so got it straight from the "horse's mouth". The gastroenterologist does not have celiac disease but celiac disease is her life. She is a huge advocate and has been instrumental in future labeling laws, etc. She has based this information on personal experience (having seen TONS of those who have been misdiagnosed and many surgeons who did not even know what they were looking for so they didn't search hard enough), experience from her co-surgeons as well as other health practitioners all over Canada. Thankfully she is also a prof in med school so she is instructing on how to properly do biopsies. Unfortunately she was unable to address the doctors and other health care practitioners on their own but plans to in the future. There were two doctors that I know of in the audience.

Talked to someone following the presentation and she likened doing biopsies to soil testing - you need many samples from everywhere.

heather Goble Rookie

My doctor only took 2 and told me that 3 days back on gluten after being gluten free for over a month was plenty of time! Really frustrated and feel like it was all such a huge waste of time and money.

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    • Scott Adams
      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.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
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