Celiac sprue — a disease that goes against the grain

By Anne Bromley

If you have heard of celiac sprue disease, you are better informed than some doctors — at least in the United States.

While the incidence of this condition seems to be growing, knowledge is lagging. It might actually be more prevalent than cystic fibrosis, inflammatory bowel disease or multiple sclerosis.

A brief primer, then. Celiac sprue is a form of a food allergy, but rather than produce an immediate and obvious physical reaction like peanut allergy, the immune reaction to proteins found in certain grains (known as gluten in wheat) instead slowly damages the small bowel, setting the stage for other illnesses and increasing the risk for some kinds of cancer. Symptoms include gastrointestinal discomfort, diarrhea, weight loss and/or a rash.

The disease is little-known in the U.S., but since the 1940s, it has been well documented and studied in northern Europe. Greeks described the celiac condition as early as the second century A.D.

A recent spike in the diagnosis of celiac disease — likely due to a new blood test for the disease — has sent U.S. physicians and dietitians in pursuit of the latest information about celiac sprue, also known as gluten-sensitive enteropathy. At a recent national conference devoted to gastroenterology, the sessions on celiac disease were well attended, said Dr. Sheila Crowe, an associate professor of internal medicine who came to U.Va. last year.

A specialist in gastrointestinal inflammatory conditions, Crowe has had a long-standing interest in celiac disease and its management. Support groups are helpful, Crowe said. People with the disease share new information, such as where to buy gluten-free products (there are several options locally).

The exact prevalence of celiac disease is hard to determine. Since the blood test came out just a few years ago, it may be simply that more people are being identified rather than more people having it. As Crowe explained in a recent lecture: “Celiac disease may be much more common than previously thought, with a prevalence as high as 1 in 125 to 1 in 300 [people] in the western world. The true prevalence of celiac sprue remains to be established by large multi-center studies in which serology and intestinal biopsy are consistently evaluated.”
U.Va. hopes to participate in that kind of national study, which is currently in the planning stage, she added.

Carol Parrish, a nutritionist at U.Va. who started a celiac support group, asked Crowe to help heighten awareness here. Crowe has since lectured to medical students, residents, GI fellows and others in her department. She’ll also speak on the topic at a forum that U.Va.’s Digestive Health Center of Excellence is hosting next month.

The disease can be tricky to diagnose, because it has many symptoms. The classical form in which children have diarrhea, suffer from malnutrition and failure to thrive or grow, is much less common now. Celiac disease often causes non-specific GI symptoms and it can also be the culprit behind symptoms usually attributed to other causes. A physician might see a woman patient in her 60s who feels more tired than usual, turns out to be anemic or has osteoporosis — all caused by celiac disease. It can also lead to repeated miscarriages. Some people might not feel bad at all.

The disease arises from an abnormal immune response to certain proteins in grains such as wheat, rye, oats and barley leading to inflammation and damage in the small bowel of genetically susceptible individuals. As a result, nutrients don’t get absorbed properly.

The good news is that celiac disease is much more detectable now, thanks to more accurate blood testing, and can be almost completely cured with a change in diet. Although that sounds simple, the bad news is that it’s a pretty drastic change — to cut out eating foods made with ordinary flour: breads, pasta, baked goods like cakes and cookies. Rice and cornmeal can stay on the menu, however.

The payoff is getting cured. “A gluten-free diet can put you back to the same life expectancy,” Crowe said. “If not treated, it can get worse and the chronic inflammation predisposes you to increased risk for some kinds of cancer.”