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Adherence to Biopsy Guidelines Increases Celiac Disease Diagnosis


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.

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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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7 Responses:

 
Celiac Mom
Rating: ratingfullratingfullratingfullratingemptyratingempty Unrated
said this on
15 Jun 2011 11:26:17 AM PDT
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!

 
iwantmybrainback
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said this on
20 Jun 2011 3:55:23 PM PDT
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.

 
c. kolthoff
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said this on
30 Jun 2011 7:57:09 AM PDT
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.

 
Ellen
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said this on
20 Jun 2011 11:34:46 PM PDT
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.

 
mike libbey

said this on
06 Sep 2013 6:14:51 AM PDT
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.

 
Cynthia R.
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said this on
20 Jun 2011 1:44:12 PM PDT
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.

 
Theresa
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said this on
30 Jun 2011 4:19:39 PM PDT
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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JaneWhoLovesRain, what is odder to me than that there is an older disease that Doctor's have forgotten that explains many of the same symptom's and doctor's do not even think about it today since the "War on Pellagra" was declared over a 100 years and why doctor's don't (at least in the West) think about it any more. Dr. Heaney wrote a nice online article about this topic. http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/ Here is fairly recent article about how Pellagra can present in patients and the title says' it all from the International Journal of Dermatology. https://www.researchgate.net/publication/227807440_Pellagra_Dermatitis_dementia_and_diarrhea Dermatitis, dementia and Diarrhea are the 3 D's (4th D is death) of Pellagra. Typically it is only diagnosed today if you are in a subset of the population like an alcoholic for example or you have a gastric bypass. See this article from the New England Journal of Medicine http://www.nejm.org/doi/full/10.1056/NEJMicm050641 and despite all the signs of Pellagra (skin issues etc.) . . .. Pellagra in it native tongue (Italian) where it was first diagnosed was called "rough/sour skin" who knows that today??????? Very few I would venture to guess. The NEJM can only say they have "Pellagra-like dermatitis" it has been so long since any doctor's seen it they can't (with confidence) diagnose it clinically. But taking Niacinamide 3/day for 6 months can help alleviate your symptom's if indeed the DH of Celiac is the dermatitis of Pellagra being medically misdiagnosed. Here is a an article featured on celiac.com about why/how Pellagra can be confused for Celiac disease. https://www.celiac.com/articles/24658/1/A-Differential-Diagnosis-How-Pellagra-Can-be-Confused-with-Celiac-Disease/Page1.html Because they haven't seen Pellagra in 75+ years no one recognizes it anymore. ****this is not medical advice. I hope this is helpful. Knitty Kitty and I are the Niacin warriors on this board. See this thread where Knitty Kitty says Niacin helped the itching of DH. If that is so then it might help your DH (if you have it) and your GI problems too if they are caused by co-morbid Pellagra. see my blog post about where I say "I had Celiac Disease and Developed Pellagra" that talks about this in more detail. Again good luck and your continued journey and I hope this is helpful. 2 Timothy 2: 7 ?Consider what I say; and the Lord give thee understanding in all things? this included. posterboy by the grace of God,

I should say I am confused about how to interpret--- Does this mean celiac or no celiac? Thank you all---I greatly appreciate it.

KathleenH, I swear by MatteosPizza and they make National Delivery. I have been known to buy them by the dozen. https://www.matteospizza.com/ BellaMonica's is not a bad corn based crust. By not bad I mean "suprisingly good" that can be bought at most grocery stores. Here is there ZIP locator page to see if they are carried in your local area. http://glutenfreepizza.typepad.com/gluten-free-pizza/where-to-find-bella-monica.html I hope this is helpful. posterboy,

Hey all--have Hashimoto's and am being worked up for epigastric discomfort and IBS like symptoms--- My blood work had an IgA within the lower end of normal range, negative TTG, but weakly positive DGP. My endoscopy showed a "nodular" duodenum with the biopsy stating there was "reactive lymphoid hyperplasia"... I have a follow-up with the GI in 3 weeks. Wondering about any help?

DH wasn't linked to celiacs until 1967 from my research...