NIH consensus statement: celiac disease in adults called underdiagnosed.(Clinical Rounds)

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%-1% of the U.S. population, said Dr. Charles Elson of the University of Alabama, Birmingham, and chair of the consensus development panel that issued the statement.

Contrary to popular perception, celiac disease affects all age groups and has a variety of manifestations. "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 were the impetus for a consensus development conference held in June and the subsequent published statement, sponsored by the National Institutes of Health.

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

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.

The result: Patients with celiac disease may spend hours reading labels in the grocery store, then going home and contacting the food manufacturer to confirm that the product doesn't contain any offending ingredients, said panel member Martha Ballew of Vanderbilt University, Nashville, Tenn. (See sidebar.)