December 17th, 2009

Did you know that celiac disease is widely under-diagnosed, and it takes a patient an average of 10 years to receive the correct diagnosis?

Reports the New York Times:

It took three decades to figure out what was making Donna Sawka so sick. Her symptoms — bloating, chronic diarrhea and weight loss — began early in childhood, and they only became worse as she aged.

Nine years ago, after developing severe anemia, a specialist told Ms. Sawka that she had celiac disease. The digestive disorder causes damage to the small intestine when gluten, a protein found in wheat, barley and rye, is ingested. People with the disease need to follow a strict gluten-free diet for the rest of their lives to avoid serious complications like osteoporosis and lymphoma, an immune system cancer.

Ms. Sawka, 48, of Fairless Hills, Pa., said she “was overwhelmed” upon learning she had the disease.

“I kept thinking about everything I wouldn’t be able to eat,” she went on. “I couldn’t even receive communion at church.”

Ms. Sawka’s reaction is a familiar one at the support group she attends. It takes the average patient 10 years to receive a diagnosis. And according to specialists, they are the lucky ones. Studies show that 3 million Americans, or 1 in every 133 people, have celiac disease. But 95 percent of them have yet to learn they have it, according to the National Institutes of Health.

“The entire disease and all of its manifestations are incredibly underdiagnosed,” said Dr. Charles Bongiorno, the chief of the division of gastroenterology and hepatology at the University of Medicine and Dentistry of New Jersey. “Patients often have it for a decade or two before they are diagnosed.”

Celiac disease is often difficult to detect because the symptoms vary so widely from person to person. Ten years ago, the medical community thought it was a rare disorder that affected only 1 in every 10,000 people, primarily children who had digestive problems and failure to thrive.

But physicians now know that the disease is much more common. Most patients never experience the so-called classic symptoms: bloating, chronic diarrhea and stomach upset. Instead, the signs are often as nebulous as anemia, infertility and osteoporosis.

Find out more.