Life StoryJune/July 2008 Issue

Medicine Man - Celiac Disease Research

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

Celiac Disease Research

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.
You and your team of researchers discovered zonulin, the human protein that may hold clues to the cause and treatment of celiac disease and other autoimmune disorders. Can you talk about that?
Yes. It turns out that celiac disease is an excellent model for gaining insight into how other autoimmune diseases develop. In studying this condition, we’ve realized that in addition to genes and the environmental trigger (that’s gluten), there is a third element —the loss of the intestinal barrier that protects us from invaders. In other words, people with celiac disease have a leaky gut. Big chunks of molecules—allergens—pass through the intestines and trigger a response by the immune system, which harms the patient genetically predisposed to autoimmunity. We discovered that zonulin is the protein that unlocks the intestinal barrier and creates the leaky gut. People with celiac disease produce higher levels of zonulin. So do people with Type 1 diabetes, multiple sclerosis and other autoimmune diseases.

What does that mean?
Now that we know that zonulin increases intestinal permeability, we can develop inhibitors that block it from doing so. Alba Therapeutics Corporation is working on this technology and we are really starting to see the light at the end of the autoimmunity tunnel. Alba is currently conducting clinical trials on AT-1001, a substance which addresses the leaky gut issue, and they’re making exceptional progress.

What is your hope for the future?
I hope for a better life for my patients. Even when patients believe they are strictly eating gluten free, gluten can sometimes sneak into their diet and create problems. Having a pill for celiac disease, like the one currently in clinical trials, could be a safety net above and beyond the diet to make sure that patients aren’t harmed by cross contamination. I’d also really like to see this technology work for devastating autoimmune diseases like multiple sclerosis and rheumatoid arthritis. I have close family members with these conditions and so I very much hope this technology means effective treatment is coming soon. LW

For more information, contact the Center for Celiac Research at

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