Celiac disease is more common than previously thought


One of the year's great medical awakenings is the recognition that an intestinal disorder called "celiac disease" is much more common in the United States than once believed.

Celiac disease, also known as "celiac sprue," occurs in adults and children. It can cause a wide range of symptoms, including stomach pain, both diarrhea and constipation, vomiting, bloating, loss of appetite, and weight loss.

Others have no obvious link to the intestines. They include anemia; rashes on the arms and legs; short stature, slow growth, and delayed puberty in children; infertility and repeated miscarriage in women; fatigue; and painful sores in the mouth.

It means that thousands of people with those symptoms may finally get the right test, the right treatment, and blessed relief when they visit the doctor.

Doctors have not been tuned into celiac disease because conventional medical wisdom said it was rare in the United States. Estimates said it affected barely 1 in 4,700 people. When patients appeared with the symptoms, doctors naturally put celiac disease near the bottom of the list of possibilities.

Patients often went home with the wrong treatment or no treatment and that unsettling idea, "It's just my imagination."

Doctors began to question conventional medical wisdom last year, after publication of a study headed by Dr. Alessio Fasano, of the University of Maryland medical school. In his native Italy, celiac disease was very common, and Fasano treated patients all the time.

Fasano expected that to end when he moved to the United States. Instead, he found just as many patients with symptoms here as in Italy. Fasano and his associates launched the study to see if celiac disease might be more common than anyone thought.

The study, which included 13,000 people in 32 states, found that celiac disease actually affects 1 in 133 people in the United States. That puts celiac disease among the most common chronic (lifelong) diseases.

Celiac disease's status as an under-diagnosed disease got an official stamp of recognition this summer. The National Institutes of Health (NIH) convened a panel of experts to examine scientific evidence about celiac disease. They concluded that celiac disease might affect 1 out of every 100 people.

Many doctors, convinced celiac disease is rare, don't think to test patients who have symptoms, NIH said. Several are available, ranging from blood tests to a biopsy of the small intestine. The clincher, NIH said, occurs if symptoms disappear after patients start eating a gluten-free diet.

Gluten is a protein in wheat, rye, and barley. People with celiac disease have immune systems that go ballistic when gluten appears in the body. Even small amounts can trigger symptoms.

Plenty of detailed information on celiac disease is available online. For starters, try the Celiac Sprue Research Foundation (www.celiacsprue.org), the Celiac Sprue Association (www.csaceliacs.org), the Celiac Disease Foundation (www.celiac.org), and the University of Maryland Center for Celiac Research (www.celiaccenter.org).