Was Your Biopsy Thorough Enough to Diagose Celiac? New Study Says, “Probably Not.”

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An interesting article from this month’s Gastrointestinal Endoscopy today.

If you have already been diagnosed with celiac disease, this article might not be relevant for you. If you had a biopsy come back as negative or inconclusive, but are still convinced you’re celiac…then this might shed some light on the mysterious depth of your intestines.

If you’re still eating gluten and contemplating a biopsy, then I highly recommend you take 2 minutes and read to the end here. Because it turns out that the overwhelming majority of biopsies don’t take enough samples.

Without enough samples, the rate of diagnosis isn’t particularly good. I know, right? Shocking.

The study in question looked at more than 130,000 individuals, all of whom had undergone biopsies between 2006-2009. Not all were suspected of celiac disease; some were in for other complaints.

Only 35% of the biopsies took four or more samples (four being the recommended number). The most common number taken was two. To explain why this is a problem, I’m going to borrow a quote of the study’s lead author, which I found in this EScienceNews.com article:

“Celiac disease can affect the small intestine in a patchy distribution, and so just one or two biopsy samples could potentially miss the evidence of the disease,” said lead author Benjamin Lebwohl, MD, MS, a gastroenterologist at the Celiac Disease Center at Columbia University Medical Center, in New York.

Even in cases where the doctor suspected celiac disease, the percentage of patients who got four samples taken was only 40%. When four or more samples were taken, the overall rate of celiac diagnosis doubled. The rate amongst patients who were suspected to have it increased sevenfold.

Apparently it doesn’t take much longer to take four samples than two – about an extra minute, according to the article. I’m sure there’s more time spent in analysis too, but still: if you’re going to have a patient undergo a procedure like this, you might as well do it right. Right?

If you had an inconclusive biopsy but believe you have celiac, do you know how many samples were taken?

2 thoughts on “Was Your Biopsy Thorough Enough to Diagose Celiac? New Study Says, “Probably Not.””

  1. The doctor who did my biopsy took one (1) sample, right next to the stomach. He is the head of the gastroenterology department at the University of Utah, but he is a “liver” man rather than a digestive tract man. I went home and the next day discovered that he should have taken a minimum of 4 biopsies, going as far possible down into the small intestine. Not a thing I could do about it. It came back negative, of course, even though I get deathly ill within two hours of eating gluten containing foods.

  2. I have a friend who has celiac desease. She has a memory problem and cannot remember how she was diagnosed. The only symptom she can remember is itching after over indulging in strawberries. She is 76 years old. What can I do to make sure her diagnosis was correct. She has accidently eaten bread and other things that she should not have eaten without any symptoms. Please help me help her.
    Thank You

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