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Celiac disease prevalence higher than thought.

Celiac disease is far more prevalent than previously thought but often goes undiagnosed, according to a consensus statement released by the National Institutes of Health. The statement identifies candidates for screening, suggests management strategies, and recommends areas for future research.

Many physicians think of celiac disease as a rare disorder of childhood. Classical manifestations include diarrhea, abdominal pain and cramps, and stunted growth. But serologic tests conducted on large, random populations such as blood donors have shown that celiac disease affects about 0.5% to 1% of the U.S. population, or about 3 million people, said Dr. Charles Elson of the University of Alabama, Birmingham, and chair of the consensus development panel that issued the statement, available at

"Based on the serologic tests, there are a myriad of presentations that don't fit into any one pattern," which explains why physicians often don't recognize it or test for it, Dr. Elson told this newspaper.

These findings provided the impetus for a consensus development conference, held in June, and the subsequent published statement, sponsored by the NIH, in an effort to improve awareness, diagnosis, and management of celiac disease.

Atypical symptoms of celiac disease include dermatitis herpetiformis, iron-deficiency anemia, recurrent fetal loss, infertility, recurrent aphthous stomatitis, elevated liver transaminases, loss of tooth enamel, and some neuropsychiatric conditions.

Patients with celiac disease have two abnormal genetic markers, HLA-DQ2 and HLA-DQ8, which interact with glutens in wheat, barley, and rye to produce intestinal damage and other symptoms. Following a gluten-free diet puts the disease into remission. Currently, there are no standards for defining foods that are gluten-free, and the tests for measuring gluten in foods are inconsistent, said panel member Martha Ballew of Vanderbilt University, Nashville, Tenn. (See sidebar.)

"One of the most important things to come from this conference is the recommendation that we establish an accepted, standardized, definition for the term 'gluten-free,' and that research funds be allocated to support the development of improved testing methods for measuring the gluten content of food," Ms. Ballew said in an interview.

The statement recommends screening the following for HLA antibodies: persons with gastrointestinal symptoms; those without other explanations for signs and symptoms such as persistent transaminase elevation, short stature, delayed puberty, iron-deficiency anemia, recurrent fetal loss, and infertility; and those with other conditions that are not specific to celiac disease, including irritable bowel syndrome, persistent aphthous stomatitis, autoimmune diseases, peripheral neuropathy, cerebellar ataxia, and dental enamel hypoplasia.

A positive serologic test merits follow-up with a small intestinal biopsy to confirm the diagnosis, Dr. Elson said. The panel also developed a mnemonic to identify the six elements of management, CELIAC: (C)onsultation with a dietitian; (E)ducation about the disease; (L)ifelong adherence to a gluten-free diet; (I)dentification and treatment of nutritional deficiencies; (A)ccess to an advocacy group; and (C)ontinuous follow-up by a multidisciplinary team.

"This statement is long overdue. Studies have shown that up to 80% of patients with celiac disease do not develop any symptoms until they're adults, and this was not recognized until recently. That's why so many physicians are unaware of it," said Dr. Robert Zipser, a gastroenterologist at the University of California, Los Angeles, who was not involved in writing the statement.

RELATED ARTICLE: Clues for Finding Gluten Lurking in Foods

Celiac disease sufferers face a daunting task in ensuring that their diets are really gluten-free, said Ms. Ballew.

Glutens--components of wheat, barley, and rye--are in flours made from those grains but are also found in a host of other, less obvious products. "Any type of processed food that has a combination of ingredients is suspect."

For example, dairy products may contain modified food starch, which may be made from corn or wheat.

Other culprits include:

* Dextrins. These sweeteners are sometimes made from wheat.

* Natural flavors. "These are found in everything from potato chips to chewing gum" and may contain glutens, she said.

* Caramel coloring. Used in colas and other soft drinks, it is derived from soy-based products that may contain wheat.

* Malt flavoring or malt extract. A common ingredient in corn flakes or rice cereals, these ingredients come from barley, which celiac patients must avoid. "That severely limits the choice of commercial cereals," she noted.


Los Angeles Bureau
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Title Annotation:Gastroenterology
Author:MacReady, Norra
Publication:Internal Medicine News
Geographic Code:1USA
Date:Aug 1, 2004
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