Celiac disease remains difficult to diagnose

The consumption of wheat, rye or barley may cause a wide variety of symptoms in people with the disorder.

By Susan J. Landers, AMNews staff. July 26, 2004.

Washington -- As many as 3 million people in the United States have celiac disease but only about a tenth have been diagnosed, concluded an independent panel of experts convened by the National Institutes of Health to examine the disease.

"We know that celiac disease is caused by an immune response to the gluten in certain common grains, so we have a very effective treatment -- a gluten-free diet -- but if physicians don't recognize when to test for the disease, patients are going to suffer needlessly," said Charles Elson, MD, professor of medicine at the University of Alabama.

Dr. Elson chaired the NIH Consensus Development Conference panel that spent three days in late June developing recommendations for diagnosing and managing the disease.

The wide variety of symptoms that can signal the presence of celiac disease, which has a strong genetic component, may make diagnosis more difficult today. "The newer cases are presenting in a different way than they were when I went to medical school," said Dr. Elson. "We used to identify celiac disease as the ultimate paradigm of malabsorption syndromes."

While malabsorption, diarrhea and weight loss in children are still identifiers, new signs among older people include constipation, pain that is not clearly defined, an intensely itchy rash, anemia, infertility in women, osteoporosis and fatigue.