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  • Diana Gitig Ph.D.
    Diana Gitig Ph.D.

    Adherence to Biopsy Guidelines Increases Celiac Disease Diagnosis

    Reviewed and edited by a celiac disease expert.

    Celiac.com 06/15/2011 - A duodenal biopsy during endoscopy is the gold standard for diagnosing celiac disease. Because the histopathological features suggesting celiac disease , specifically villous atrophy, can vary in severity throughout the length of the small intestines, the American Gastroenterological Association Institute recommended in 2006 that at least 4 specimens be taken for examination. Yet the degree of adherence to this recommendation has not been assessed, and neither has its impact on diagnoses. A recent study by Benjamin Lebwohl at the Columbia University Celiac Disease Center concludes that most physicians are not following the guidelines, but they should be; doing so doubles the diagnosis of celiac disease.

    Dr. Lebwohl and colleagues collated the specimens sent to Caris Life Sciences, a specialized GI pathology laboratory that receives samples from endoscopy centers in forty-three states plus the District of Columbia and Puerto Rico. They looked at 132, 352 patients who had endoscopies for various indications between January 1, 2006 and December 31, 2009. From these endoscopies, only 35% followed the recommendation of submitting at least four specimens. There was a slight increase once the guidelines were proposed, in 2006; but by the end of 2009 adherence to the guidelines was still a low 37%. Interestingly, the number of specimens submitted could be directly correlated with the probability of a positive diagnosis of celiac disease.

    Adherence varied by indication, with the highest rates (43.9%) among patients undergoing endoscopies for diarrhea and the lowest rates (30.0%) among those having endoscopies because of heartburn. Among patients having endoscopies for malabsorption or suspected celiac disease adherence was only 38.5%. Adherence to the guidelines also decreased with the age of the patient. The researchers did not have access to socioeconomic or racial data regarding the patients, so could not determine if that factored into adhering to the guidelines.

    The proportion of patients diagnosed with celiac doubled when at least four biopsy specimens were submitted. This increase varied by indication; it was most apparent in those undergoing endoscopy because of malabsorption and suspected celiac disease, but was present for the other indications as well. This study validates those recommendations; hopefully the slight increase in adherence since they have been proposed will continue to grow.

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    Where is the logic to adhere to this recommendation? Endoscopy after a positive blood test, and especially after relief of symptoms with dietary modifications, smacks of creating reasons to get paid. Endoscopies are time consuming and painful. Why do unnecessary harm to the patient?! If there are antibodies, that means the Lyphocytes are primed to attack. Villous atrophy will occur, whether it has or not already. I for one WILL NOT put my 6 year old thru this painful procedure only to confirm what we already know!

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    I just got diagnosed with celiac in March of this year, and for one I am relieved to finally have a name to what I have. The Endoscopy and biopsy that they did on my small intestine was not painful at all and I wouldn't even know that they had done anything at all!! Thanks to celiac.com I'm getting lots of information, and It's helped me out a million! Thanks.

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    Guest iwantmybrainback

    Posted

    Where is the logic to adhere to this recommendation? Endoscopy after a positive blood test, and especially after relief of symptoms with dietary modifications, smacks of creating reasons to get paid. Endoscopies are time consuming and painful. Why do unnecessary harm to the patient?! If there are antibodies, that means the Lyphocytes are primed to attack. Villous atrophy will occur, whether it has or not already. I for one WILL NOT put my 6 year old thru this painful procedure only to confirm what we already know!

    This is in response to Celiac Mom. As an Certified Peri- operative Nurse and a celiac patient, I have never observed nor felt any pain or discomfort either operatively or post-op endoscopy. In my experience, the average time spent in an out-patient setting is 1 hour prior and 1/2 hour in recovery room. The actual procedure is usually less than 15 minutes. I surely would want to rule out everything else prior to committing my child to a life time of such a restrictive diet.

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    Where is the logic to adhere to this recommendation? Endoscopy after a positive blood test, and especially after relief of symptoms with dietary modifications, smacks of creating reasons to get paid. Endoscopies are time consuming and painful. Why do unnecessary harm to the patient?! If there are antibodies, that means the Lyphocytes are primed to attack. Villous atrophy will occur, whether it has or not already. I for one WILL NOT put my 6 year old thru this painful procedure only to confirm what we already know!

    Right on Celiac Mom! I was very fortunate when I was diagnosed. The blood screen came back positive. The doctor said we could do a biopsy, but, seeing as I already had a lot of inflammation, she personally didn't see the point in adding to it with a biopsy. "If you strictly follow the diet for four months, you'll know whether you improve or not." And she was right. This article just shows what a crock it is that endoscopies are considered the "gold standard" of diagnosis. The diagnostic protocol is spelled out by gastroenterologists. And they certainly aren't going to declare that one of their most profitable procedures isn't necessary. It's worth noting that the doctor I saw wasn't a gastroenterologist and her income didn't depend upon endoscopies.

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    This is in response to Celiac Mom. As an Certified Peri- operative Nurse and a celiac patient, I have never observed nor felt any pain or discomfort either operatively or post-op endoscopy. In my experience, the average time spent in an out-patient setting is 1 hour prior and 1/2 hour in recovery room. The actual procedure is usually less than 15 minutes. I surely would want to rule out everything else prior to committing my child to a life time of such a restrictive diet.

    I just spent two months recovering from a severe hemorrhage and almost went into shock caused by a duodenal biopsy during a simple endoscopy! It was done with the intention to diagnose celiac disease. A simple, everyday test STILL can cause ill effects.

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    I tested positive on my blood test over a month ago. I saw the GI today and found out that I have to get an endoscopy and colonoscopy. The thing that worries me is that I was told to add gluten to my diet 2 weeks before endoscopy and biopsy. I had been doing really well on gluten-free diet but how am I going to handle the effects of eating gluten? I don't want to be calling in to work. I know I have to take day off for tests.

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    Where is the logic to adhere to this recommendation? Endoscopy after a positive blood test, and especially after relief of symptoms with dietary modifications, smacks of creating reasons to get paid. Endoscopies are time consuming and painful. Why do unnecessary harm to the patient?! If there are antibodies, that means the Lyphocytes are primed to attack. Villous atrophy will occur, whether it has or not already. I for one WILL NOT put my 6 year old thru this painful procedure only to confirm what we already know!

    Biopsy to confirm a blood test are not 100%. If the child is correctly diagnozed then it is necessary to determine if family members are affected by this disease.

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  • About Me

    Diana received her B.A. in Biochemistry from the University of Pennsylvania, and then a Ph.D. in Cell Biology and Genetics from Cornell. Now she is a freelance science writer and editor in White Plains, New York.  Her son was diagnosed with celiac disease in 2006, at the age of five, and she has been keeping her family healthy by feeding them gluten free treats ever since.

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