Celiac symptoms varied; disease not so rare

Researchers warn that many more people than previously thought have this digestive illness and remain undiagnosed.

By Susan J. Landers, amednews staff. March 3, 2003.

Washington -- Physicians should expand the classic definition of celiac disease beyond chronic diarrhea, weight loss and a big belly in youngsters who recently began eating gluten-containing foods. The definition should include, for starters, constipation, weight gain and excessive fatigue.

A study by the University of Maryland Center for Celiac Research found that one in 133 Americans not considered at risk for celiac disease may have the serious digestive disease, a number much higher than the one in 4,700 Americans currently diagnosed.

Seeing the signs
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"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," said Alessio Fasano, MD, the study's principal investigator and professor of pediatrics, medicine and physiology at the University of Maryland School of Medicine in Baltimore.

The multicenter study took place over five years and included blood samples from 13,145 adults and children. Researchers found that celiac disease, caused by an intolerance to gluten, was present in one out of 22 of those who had first-degree relatives with the disorder and in one out of 133 who were not thought to be at risk.

Study results were published in the Feb. 10 Archives of Internal Medicine.

Many people with the disease are thought to be undetected by the radar of even the most attentive physician because the symptoms are actually very wide-ranging, contrary to what has been taught in medical schools.

More than 1.5 million Americans have celiac disease, many undiagnosed.

A major goal of the University of Maryland researchers is to urge primary care physicians to heighten their suspicion that celiac disease could be the cause of a variety of patients' symptoms, said Dr. Fasano.

"You can have vomiting, bloating or constipation or you can have symptoms that have nothing to do with the gastrointestinal system, such as chronic fatigue syndrome, joint pain, osteoporosis, depression or miscarriage," he said.

There has been a misperception that celiac disease was rare in the United States because diagnosis was firmly tied to the classical symptoms, said Dr. Fasano.

"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," he said.

Celiac disease is considered both an autoimmune disease and a disease of metabolism and can become active for the first time after surgery, pregnancy, childbirth, viral infection or severe emotional distress, according to the National Institute of Diabetes, Digestive and Kidney Diseases.

Diagnosis and treatment

A physician who suspects that celiac disease is the cause of a patient's symptoms should order a blood test to measure levels of antibodies to gluten. The "gold standard" for diagnosis is a biopsy of the small intestine using an endoscope, said Dr. Fasano.

There is no cure for celiac disease and no medications to treat it. However, people with it can lead healthy lives by following a strict, gluten-free diet -- avoiding all products derived from wheat, rye, barley and a few other grains -- not an easy task.

Celiac disease occurs in 1 out of 22 people whose first-degree relatives have the disorder.

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

Researchers at Stanford University and at the University of Norway reported last fall that they had found a peptide molecule that serves as the trigger for the autoimmune disease and are now working on a treatment that breaks down that molecule.

The culprit was identified as a fragment of gluten called gliadin, which is resistant to digestion and which is responsible for the intestine-damaging response experienced by celiac patients.

In Europe, many more people are diagnosed with celiac disease, and the new study now places Americans on a probable par with Europe. That conclusion makes sense, said Dr. Fasano, when taking into account the European heritage of many Americans and the fact that celiac disease is genetic.