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Celiac Disease and Looking for What You Know

By: Jule Klotter

For decades every European doctor has been trained to identify celiac disease. In the US, however, celiac disease has been viewed as a 'rare childhood disorder.' A Wall Street Journal article (December 9, 2005) uses this disparity to show how medical education and lack of research can create 'blind spots' in clinical diagnoses. Celiac disease is an inborn condition in which the person is unable to breakdown the peptides in gluten, a protein in wheat and barley that gives the grains' flour elasticity. Undigested, this protein activates an immune-system attack on the small-intestine lining, impairing the body's ability to absorb nutrients. Symptoms, if and when they appear, include abdominal distension, vomiting, diarrhea, muscle wasting, extreme lethargy, and fatty stools. Damage to the intestinal lining can and does occur without any symptoms at all. Symptoms disappear when patients avoid gluten-containing foods: bread, pasta, and most packaged foods.

The culprit, gluten, was identified by Dr. Wiilen Dicke, who had noticed in 1950 that children with celiac disease improved when flour became scarce during and after World War II. During the 1960s, researchers began devolping tests to identify people with the disease. Biopsies of the intestine, the first test produced, revealed destruction of the villi that line the intestine and absorb nutrients. Blood tests, developed in the 1970s and 1980s, identify celiac-related antibodies and make it easier to screen large groups of people for the disease. Testing shows that up to one percent of the population in many European countries has celiac disease. Patient groups in those countries have pushed for government-funded research, leading to more accurate tests and identification of a genetic variant in people with celiac disease. Researchers have also begun to figure out why gluten triggers the immune system to attack the intestinal lining. Publicity about Celiac research has led to more diagnoses and more funding for more research, while European health authorities urge doctors to become aware of the disease and its prevalence.

Except for a short period of interest in the 1960s, US researchers have ignored celiac disease, partly because of 'a perceived rarity of the condition.' A lack of economic incentive has probably been another factor. Effective, dietary treatment for the disease gives drug companies no reason to study it. This lack of opportunity to develop a novel (and patentable) treatment for celiac may have discouraged research by academic researchers as well. Without publicized research studies or the drug advertising that brings an illness and its 'cure' into public awareness, US doctors just assumend that celiac disease was a rare condition. A 1994 Mayo Clinic study confirmed that opinion with a finding that only one in 5000 Americans had celiac disease. Mayo researchers used gastrointestinal symptoms in one Minnesota county to make their diagnoses instead of using diagnostic blood tests to make this sweeping claim.

As foreign-trained doctors and scientists moved to the US, their awareness of celiac disease came with them. They insisted that celiac disease was more prevalent in the US population than commonly believed. In response, the National Insitutes of Health (NIH) funded a few studies in the mid-to-late 1990s. Peter Green and colleagues at Columbia University surveyed US celiacs. Their 2001 study that screened 13000 people found the incidence of celiac to be one in 133 Americans, similar to the incidence in many European countries. In 2004, the NIH convened a panel of experts to consider the question of celiac prevalence. The experts came up with an estimate that is very close to the percentage found among Europens: 0.5% to 1% of the US population, or about 1.6 million to three million people.

This makes me wonder what other conditions with nontechnical solutions are being ignored.

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