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Largest study ever finds that one out of every 133 Americans may have celiac disease

Although serious conditions ranging from diabetes, anemia, short stature, infertility, Down syndrome and diarrhea can all be associated with celiac disease, few people in the U.S. have heard of it. A new, multi-center study led by the University of Maryland Center for Celiac Research in Baltimore finds that celiac disease is much more common in this country than previously thought.

For the study, published in the February 10, 2003 edition of Archives of Internal Medicine, researchers screened more than 13,000 people in 32 states.

"We now believe that more than 1.5 million Americans suffer from celiac disease, making it twice as common as Crohn's disease, ulcerative colitis and cystic fibrosis combined," says Alessio Fasano, M.D., the study's principal investigator and professor of pediatrics, medicine and physiology at the University of Maryland School of Medicine.

Celiac disease is a digestive disorder that is triggered by the protein gluten, which is found in wheat, barley and other grains. People who have the disease should not eat foods that contain gluten. Those foods can set off an autoimmune reaction in the intestines that cause a variety of gastrointestinal symptoms and prevent the proper absorption of food and nutrients, leading to serious health consequences.

"Symptoms of celiac disease vary among individuals," says Dr. Fasano. "It can be a difficult disease to diagnose because symptoms can include anemia, osteoporosis, diarrhea, and constipation. Alternatively, there may not even be any symptoms." Dr. Fasano's preliminary studies found celiac disease in about 1 out of every 150 people. "This new study demonstrates that celiac disease is just as common in the U. S. as in Europe, which makes sense since there is a genetic link to the disease and many Americans are descended from Europeans," says Dr. Fasano, who also heads the division of pediatric gastroenterology at the University of Maryland Hospital for Children.

He adds, "We hope this study will change the perspective of the health care community and that physicians will be more likely to test their patients for celiac disease."

The new study, which is the largest multi-center, epidemiological study ever on the prevalence of celiac disease in the U.S., took place over five years and included blood samples from 13,145 people, including adults and children. The purpose of the study was to look at the disease's prevalence in both "at-risk" and "not at-risk" populations.

Nearly 9,000 people were considered "at-risk" because they either had relatives with celiac disease, symptoms such as diarrhea or abdominal pain, or other disorders associated with celiac disease, including diabetes, Down syndrome or anemia. More than 4,000 study participants were considered "not at-risk."

The study found that among "at-risk" participants, celiac disease was present in one out of 22 people who had first-degree relatives with the disorder. It was also present in one out of every 68 adults with CD-associated symptoms and one out of every 25 children with symptoms. Among those study participants who were considered "not at-risk," celiac disease was found in one out of every 133 people.

There is no cure for celiac disease and there are no medications to treat it. People with celiac disease can lead normal, healthy lives by following a gluten-free diet. This means avoiding all products derived from wheat, rye, barley, oats, and a few other lesser-known grains.

"Gluten is poison to celiac patients. Avoiding gluten requires major lifestyle changes, and it impacts entire families," says Dr. Fasano.

Celiac disease is an autoimmune disease, just like diabetes and rheumatoid arthritis. "There are two elements that play together for someone to develop an autoimmune disease. You must have a genetic predisposition and there must be some environmental factor to trigger the disease," explains Dr. Fasano. "Celiac disease is the only autoimmune disease where that trigger is known. That trigger is gluten." Dr. Fasano adds, "This study is also very important to the scientific community because researchers will now be able to use this data on celiac disease to help uncover what causes other autoimmune diseases."

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