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    Low Rates of Biopsy May Drive Under-diagnosis of Celiac Disease


    Jefferson Adams
    Image Caption: Photo: CC--a.drian

    Celiac.com 08/01/2012 - Failure to conduct small bowel biopsies during endoscopy, especially on men and people of color, may be one of the reasons that celiac disease remains under-diagnosed in the United States, according to a new study. This finding was made by a research team that set out to study sex and racial disparities in duodenal biopsy evaluations for celiac disease.


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    Photo: CC--a.drianThe study, by researchers at the Celiac Disease Center at Columbia University Medical Center (CUMC), revealed that the United States has low overall rates of small bowel biopsy.

    The research team included B. Lebwohl, C.A. Tennyson, J.L. Holub, D.A. Lieberman, A.I. Neugut, and P.H. Green. They are affiliated with the Celiac Disease Center of the Department of Medicine at Columbia University Medical Center at Columbia University, and the Department of Epidemiology at the Mailman School of Public Health at Columbia University in New York.

    Celiac disease is a common but under-diagnosed condition in the United States. Moreover, studies indicate that, although celiac disease occurs at the same frequency in both sexes, women are diagnosed at a rate that is twice that for men (2:1).

    Black patients are also diagnosed with celiac disease less frequently that non-black patients, though the rates of celiac disease in the black population remain unknown.

    For their retrospective cohort study, the team set out to measure the rates of duodenal biopsy during Esophagogastroduodenoscopy (upper endoscopy, or EGD) in patients with symptoms consistent with celiac disease. These were adult patients undergoing upper endoscopy for symptoms including diarrhea, anemia, iron deficiency, or weight loss, in which the endoscopic appearance of the upper GI tract was normal.

    To accomplish their study, the team searched the Clinical Outcomes Research Initiative National Endoscopy Database from 2004 through 2009.

    They looked at data for 13,091 individuals who met the inclusion criteria, 58% of whom were female, and 9% of whom were black.

    They found that doctors performed duodenal biopsy an average of 43% of the time; 45% for female patients and 39% for male patients (P < .0001). Black patients received duodenal biopsy in 28% of EGDs performed, compared with 44% for white patients (P < .0001).

    Multivariate analysis showed that male patients (odds ratio [OR] 0.81; 95% CI, 0.75-0.88), older patients (OR for 70 years and older compared with 20-49 years, 0.51; 95% CI, 0.46-0.57), and black patients (OR 0.55; 95% CI, 0.48-0.64) received duodenal biopsy at lower rates overall.

    Over time, rates of duodenal biopsy rose slightly, but overall remained low in patients with possible clinical indications for biopsy.

    From these findings, they conclude that non-performance of duodenal biopsy during endoscopy may be contributing to the under-diagnosis of celiac disease in the United States.

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    Guest Fiddle-Faddle

    Posted

    The problem here is not that there is failure to perform biopsies, but that the biopsy is required at all for diagnosis of celiac disease, but this goes back to how celiac was defined as a disease 50-60 years ago--before the sophisticated blood tests of today were available.

     

    A biopsy should not be necessary if:

    1) blood work is positive and

    2) dietary response is adequate.

     

    It's great to report on the findings of recent studies, but it's also important to analyze--and in some cases, criticize--those findings.

     

    In most cases, it's OUR tax dollars, and the dollars WE have paid the pharmaceutical industry, that are funding these studies. We have every right to question, analyze, and criticize them.

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    Guest Pam Larsen

    Posted

    My husband was just diagnosed with blood work for celiac disease in June and the doctor immediately scheduled him for a biopsy. We opted out for a couple of reasons. We have a very high deductible so the burden of cost of the biopsy would fall to us, and if the treatment plan is "change your diet" why would we have the biopsy? It has been 2 months and he is doing great. He has only had 3 times that he has been sick (and we know what he ate). He is putting on some weight. Leg cramps don't exist anymore. Bowels seem to be normal. I am anxious for a year to pass and have a CMP done to see if all his blood work is in the normal range. It took about 12-15 years of misdiagnoses to finally figure this out, so he has been extremely malnourished. Dietary response has been excellent and cheap.

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  • About Me

    Jefferson Adams is a freelance writer living in San Francisco. He has covered Health News for Examiner.com, and provided health and medical content for Sharecare.com. His work has appeared in Antioch Review, Blue Mesa Review, CALIBAN, Hayden's Ferry Review, Huffington Post, the Mississippi Review, and Slate, among others.

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  • Related Articles

    Scott Adams
    The following is from a talk given at the Gluten Intolerance Group Annual Educational Seminar on April 1, 1995 by Dr. Alessio Fasano, Pediatric Gastroenterologist, University of Maryland School of Medicine which was also reported in the May 1995 issue of the GIG Newsletter. The findings of these experts indicate that the incidence of celiac disease in the general population could be as high as 1 in 300-500 people when one takes into account all forms of the disease. Here is a report of the meeting:
    The question which was brought up was How prevalent is celiac disease?. Although there is much data on the incidence of celiac disease that has been collected in Europe, there is almost no data from the United States. After compiling data on the incidence of celiac disease in Europe, something very unusual was noticed.
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    There are three major ways in which celiac disease presents itself in patients. The first are the asymptomatic patients who have no symptoms whatsoever, but exhibit damage to their small intestines upon examination. The second are patients with the latent form which means they have blood-tested positive for celiac disease, nut no tissue damage has occurred yet. This form will later develop into the typical or atypical forms. The third is the typical presentation, which shows up when the patient is between 6 and 18 months old. These patients develop the classic symptoms: diarrhea, fatty stools, lack of weight gain, irritability and anorexia. Typical presentations of celiac disease are rather rare in comparison to the other forms, which leads to the overall under-diagnosis of celiac disease, and is illustrated by the following statistics:
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    Cumulative Prevalence
    Classical (Typical) Form
    1 in 2500
    Atypical - Late Onset Form 1 in 1500 Asymptomatic Form 1 in 1000 Latent Form (celiac disease Associated with other Diseases) 1 in 300-500* *Researchers in Italy have reached the conclusion that the incidence of celiac disease would be more like 1 person with celiac sprue for every 300 to 500 in the general population, when looking at all forms of the disease.
    Serological screening using anti-gliadin and anti-endomysial antibodies allows doctors to obtain a much more accurate picture of the actual number of people affected by celiac disease. In Europe, for example, researchers have found a much higher incidence of celiac disease than expected (1 in 300!), and it is spread uniformly throughout the population. Researchers re-tested the cities of Malmo and Copenhagen and found the incidence in Copenhagen to be 1 in 300. The difference between the two cities is in the clinical presentation of the disease. In Denmark there were more people who exhibited symptoms of osteoporosis, dermatitis herpetiformis, short stature and other atypical presentations. The awareness of physicians that these presentations could be celiac disease was very low.
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    Study: 159 Children With Atypical Symptoms*
    Symptom Group No. Screened Positive Screen Negative Screen Short stature 78 7 71 Poor weight gain 21 6 15 Chronic diarrhea 17 1 16 Abdominal Pain 8 1 7 Asymptomatic 35 2 33 *Please keep in mind that this study was not based on a random cross-section of the population, but, rather on children who already exhibited atypical symptoms.
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    Scott Adams
    Abstract for the Italian study:
    Catassi C; Ratsch IM; Fabiani E; Rossini M; Bordicchia F; Candela F; Coppa GV; Giorgi PL
    Coeliac Disease in the Year 2000: Exploring the Iceberg [see comments]
    Department of Pediatrics, University of Ancona, Italy.
    Source: Lancet 1994 Jan 22; Vol. 343(8891):200-3
    Comment in: Lancet 1994 Jan 22; Vol. 343(8891):188
    Comment in: Lancet 1994 Mar 12; Vol. 343(8898):675
    Comment in: Lancet 1994 Apr 16; Vol. 343(8903):984
    Unique Identifier: 94118649 It is now generally believed that sub-clinical Coeliac disease is common in the general population. We have undertaken screening for this disorder in a school district in central Italy. Screening was divided into three levels: first, IgG and IgA antigliadin antibody (AGA) assay on capillary blood obtained by finger prick; second, AGA plus IgA anti-endomysium antibody (AEA) test and measurement of serum immunoglobulins in venous blood; and third, intestinal biopsy. 3351 students (66% of the eligible population) aged 11-15 years attended first-level screening. 71 (2%) were recalled because of AGA positivity; 18 of these satisfied second-level criteria and underwent intestinal biopsy.
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    No. of Students in Study No. Positive for IgG and IgA Antigliadin Antibodies No. Positive for AGA plus IgA Anti-Endomysium Antibodies No. w/ Positive Intestinal Biopsy 3,351 ( = 100%) 71 ( = 2.1%) 18 ( = 0.537%) 11 ( =.328%) *Please note that the finding in this study of 3.28 per 1000 includes only those who satisfied all criteria of diagnosis, including a biopsy. Many of the original 71 kids (2%) who tested positive for IgG and IgA antigliadin antibodies may later develop typical or atypical symptoms, and have positive intestinal biopsies.

    Tina Turbin
    Celiac.com 06/28/2010 - Studies on the genetic links to celiac disease are leading to more research which may lead to new and more effective ways to treat the disease, an exciting  prospect for celiacs who may want to enjoy some gluten now and then.  Celiac disease is an autoimmune disease, the source of this being gluten, a protein found in wheat, rye, and barley, affecting about 1% of the population and 300 million Americans. The disease attacks the villi,the finger-like structure which line the small intestine, leading to stomach troubles and malabsorption of nutrients. Left untreated, it can cause severe health conditions and complications such as anemia, osteoporosis, miscarriage, and even cancer.
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    Jefferson Adams
    Celiac.com 03/22/2013 - Enterocyte damage is one of the common features of celiac disease, and often results in malabsorption. Presently, doctors don't know very much about the recovery of enterocyte damage and its clinical consequences. Serum intestinal fatty acid binding protein (I-FABP) is a marker that allows researchers to study enterocyte damage.
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    Source:
    Aliment Pharmacol Ther. 2013 Feb;37(4):482-90. doi: 10.1111/apt.12194.

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    Jefferson Adams
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    Source:
    J Clin Gastroenterol