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Negative Biopsies?

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Here's a significant research paper of interest to all of those who have had a negative biopsy. Another reason not to fully trust negative biopsies is (1)labs miss read them 20% of the time, according to the attached research report, (2)the doctor may not take enough samples -8 are recommended,(3) or there are not enough taken in the right places, as damage can be spotty.

Variability in small bowel histopathology reporting between different pathology practice settings: impact on the diagnosis of coeliac disease.

Source: J Clin Pathol. 2011 Nov 12. Celiac Disease Center at Columbia University Medical Center, Division of Digestive and Liver Diseases, Department of Medicine, Columbia University, New York, New York, USA.

ABSTRACT

Background and Aims - Coeliac disease (celiac disease) diagnosis requires the detection of characteristic histological alterations of small bowel mucosa, which are prone to interobserver variability. This study evaluated the agreement in biopsy interpretation between different pathology practice types.

Methods - Biopsies from community hospitals (n=46), university hospitals (n=18) and commercial laboratories (n=38) were blindly assessed by a pathologist at our institution for differences in histopathology reporting and agreement in diagnosis of celiac disease and degree of villous atrophy (VA) by κ analysis.

Results - Agreement for primary diagnosis was very good between this institution and university hospitals (κ=0.888), but moderate compared with community hospitals (κ=0.465) or commercial laboratories (κ=0.419). Diagnosis differed in 26 (25%) cases, leading to a 20% increase in celiac disease diagnosis after review. Among those diagnosed with celiac disease by both institutions (n=49), agreement in degree of villous atrophy (VA) was fair (κ=0.292), with moderate agreement between the authors and commercial laboratories (κ=0.500) and fair with university hospitals (κ=0.290) or community hospitals (κ=0.211). The degree of VA was upgraded in 27% and downgraded in 2%. Within different Marsh score categories, agreement was poor (κ<0.0316) for scores 1 and 2, both missed at other centres, and fair or moderate for scores 3a and 3b. Information regarding degree of VA and intraepithelial lymphocytosis was lacking in 26% and 86% of reports and non-quantifiable descriptors, eg, 'blunting' or 'marked atrophy' were prevalent.

Conclusions - celiac disease-related histological changes are underdiagnosed in community-based hospitals and commercial pathology laboratories. Because incorrect biopsy interpretation can cause underdiagnosis of celiac disease, greater celiac disease awareness and uniformity in small bowel biopsy reporting is required among pathologists.

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Thanks for posting. Hopefully this information is read by all GI doctors. I really feel for the unfortunate folks that have a false negative on biopsies and are told to just keep eating gluten. At least my new GI tells anyone who is symptomatic to try the diet strictly even if both blood and biopsy are negative. Wish there were more like him and that I had changed to him years ago...

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Quite frankly this makes me more ambivalent about ANY test.

I mean jeez, really????

This is very problematic for at-risk populations (relatives of Celiacs, autoimmune patients) who are advised to undergo repeat testing to "catch" Celiac.

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Quite frankly this makes me more ambivalent about ANY test.

I mean jeez, really????

This is very problematic for at-risk populations (relatives of Celiacs, autoimmune patients) who are advised to undergo repeat testing to "catch" Celiac.

And even when symptomatic they are told to keep eating gluten until a biopsy is positive....

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And yet they still call endoscopy the gold standard for diagnosis. I'd call it fool's gold.

Who is that famous celiac doc in San Diego? Dr. Green? I called their office when I first was diagnosed by blood tests and they refused to even see me if I hadn't been diagnosed by endoscopy. They won't even make you an appointment. They said I had to do a gluten challenge and have the scope otherwise go somewhere else. And he's the "expert."

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I've come to the conclusion the dx of Celiac via endoscopy is a dx of "severe intestinal damage by gluten".

If I understand the testing correctly you can show damage but still not receive a positive test result.

"lesser damage" can be caused by other things, but also be caused by gluten. I'll assume (and I know what that makes me) severe damage can be caused by other things, too.

So I'm confused.

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My gastroenterologist totally concurs with this! A doctor thought I had Celiac (had never heard of it before) and sent me to someone who did a colonoscopy (I know, stupid, right?) to diagnose it! Of course, he said I didn't have it! After researching, my husband and I decided that I'd go on a gluten-free diet anyway! It made such a difference! Recently, I've been really ill again. I went to a new gastroenterologist and he suggested an endoscopy! We did it an the said that there was significant damage and looked like lots of other Celiac patients he's seen. But the biopsies were negative! He said that he didn't care, diagnosed me with Celiac, and helped me to figure out what has been causing the problem these last two months!!! I'm so bummed that it has taken this long to find a good doctor who is willing to look past the test results!

Good luck!

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