Undiagnosed Celiac Disease Common, Study Finds

Finnish researchers detect it in 1 of 99 children

Please note: This article was published more than one year ago. The facts and conclusions presented may have since changed and may no longer be accurate. And "More information" links may no longer work. Questions about personal health should always be referred to a physician or other health care professional.

HealthDay Reporter

(HealthDay is the new name for HealthScoutNews.)

WEDNESDAY, June 18, 2003 (HealthDayNews) -- A surprising number of apparently healthy children are walking around with undiagnosed celiac disease, an autoimmune condition that makes a slice of bread dangerous, a Finnish study finds.

The current estimate is that one of every 250 Americans has celiac disease, says the Web site of the National Institute of Diabetes and Digestive and Kidney Diseases. But Finnish researchers tested 3,654 children in a pilot screening program and found that one in 99 had the disease, says a report in the June 19 issue of the New England Journal of Medicine.

Celiac disease causes the immune system to unleash an attack on the lining of the intestinal tract when it comes in contact with gluten, a protein found in wheat, rye and barley. Ability to absorb nutrients is reduced, leading to weight loss, anemia, skin problems and other disorders. The basic treatment is a gluten-free diet, for life.

Celiac disease sometimes is detected at birth. But it can take years for symptoms to develop in some people.

"The crucial question now is whether population-based screening should be considered outside research programs," says the journal report.

It's too early to say whether every child should be screened for celiac disease, says research leader Dr. Markku Mäki, a professor of pediatrics at the University of Tempere Medical School.

"We are providing more and more evidence that we are doing good by early detection and treatment," Mäki says. "But we haven't given enough of a proof that we should be doing population-based screening."

Cost is an issue. To screen the Finnish children, the Finnish researchers first looked for antibodies indicating celiac disease in blood samples, then did an endoscopy to look at the intestinal tract when those antibodies were found. Then intestinal tissue samples were taken and tested for final proof.

"We need a cost-benefit analysis" to show that widespread screening should be undertaken, Mäki says.

The results in the Finnish study resemble those of a study done 18 months ago at the University of Maryland, says Dr. Alessio Fasano, director of the university's Center for Celiac Research and author of an accompanying editorial.

"We found an incidence of one in 133, a prevalence that approaches 1 percent," Fasano says. "That is much more frequent than some more recognized conditions, such as cystic fibrosis."

But still, "the payback from screening is not evident," Fasano says. One reason is that a gluten-free diet demands rigorous discipline, which can be difficult or impossible for teenagers. Gluten is "promiscuous," found not only in bread but also in pizza and a number of other foods, he says, and teenagers often don't comply because it subjects them to ridicule.

The only solid way to show that early screening pays would be to tell half the symptom-free people found to have the disease to follow the gluten-free diet and leave the other half to their own devices, checking for damage over the years. That would be "completely unethical," as well as take a long time to show whether detection is cost-effective, Fasano says.

But he says he sees physicians becoming more aware of the early symptoms of the condition and testing patients for it.

One group that should be tested for celiac disease is children with type 1 diabetes, in which the body makes no insulin, says Dr. David Wyatt, professor of pediatric endocrinology at the Medical College of Wisconsin. He and a colleague, Dr. Steve Werlin, found that 5 percent of 200 young diabetics they tested also had celiac disease.

"After we did that study in 1999, it became our practice to test for celiac disease," Wyatt says. "I don't think it is routine in other practices, but it is getting there."

The common thread is that both are conditions in which the immune system mistakenly attacks healthy tissue, Wyatt says.

More information

An A-to-Z overview of celiac disease can be found at the National Institute of Diabetes and Digestive and Kidney Diseases. You could also try the Celiac Disease Foundation.

SOURCES: Markku Mäki, M.D., Ph.D., professor, pediatrics, University of Tempere Medical School, Tampere, Finland; Alessio Fasano, M.D., director, University of Maryland Center for Celiac Research, Baltimore; David Wyatt, M.D., professor, pediatric endocrinology, Medical College of Wisconsin, Milwaukee; June 19, 2003, New England Journal of Medicine

Last Updated: