Medicine Man

Alessio Fasano, M.D., is making big strides for celiac disease

Living Without’s editor Alicia Woodward talks with Dr. Alessio Fasano, founder and medical
director of the University of Maryland School of Medicine’s Center for Celiac Research. .

Alicia: Everyone used to think that 1 person in 10,000 has celiac disease. Now we know it’s 1 in 133. You and the Center for Celiac Research spearheaded the study that changed the prevalence data on this disease. Tell us the story behind this very significant change.

Dr. Fasano: It started when I realized there were no celiacs in the United States. As a pediatric gastroenterologist, I’d been practicing in Naples, Italy, and treating 10 to 12 celiac patients a week. In 1993, I moved to Baltimore and months would pass when I wouldn’t see a single celiac patient. Not one. I thought, isn’t this strange. Here’s an autoimmune disease with two ingredients—the genes you’re born with and gluten. Many Americans and Europeans share genetic makeup and grains are grains. Nobody could dispute that and yet the general wisdom here claimed that celiac disease was an extremely rare disorder. It didn’t make sense so I decided to check it out.

What happened next?
I knew we had to count the people with celiac disease in the United States. To do that, we had to develop a diagnostic tool that would be undisputedly accepted by everybody. So we developed the tTG (anti-tissue transglutaminase) test. Now commercially available, it’s the standard test used for diagnosing celiac disease everywhere. Once we had the test, we spent the next five years conducting the largest epidemiological study ever in the United States. We screened over 13,000 people from all over the country.

So suddenly celiac disease is no longer a rare disorder.
That’s right. Keep in mind that in 2003 when the study was completed, there were only about 40,000 people diagnosed with celiac disease in the United States. Since that time, due to increased awareness, the rate has doubled every three years. Today, we’re close to 100,000 diagnosed—and counting. We estimate there are about 3 million people in the United States with this disease. Think about that. There is no other pathology that is so frequent—not Crohn’s disease, cystic fibrosis, ulcerative colitis, multiple sclerosis, rheumatoid arthritis. Nothing even comes close.