Alessio Fasano, MD, came to the US from Italy looking to expand his horizons beyond celiac disease. Instead, he became a leader in the treatment, research, and education of celiac disease and other gluten-related disorders.
When Alessio Fasano, MD, came to the US from Italy more than 2 decades ago, he had had enough. His main reason for the journey was to expand his horizons beyond celiac disease.
“I was sick and tired of almost exclusively dealing with this disease,” Fasano recalls. “That was my professional life in Italy. And I found it exciting to come to the US and open up my clinical and scientific interests.”
But things didn’t turn out as planned, fortunately. Today, Fasano is a world-renowned pediatric gastroenterologist and research scientist who has become a leader in the treatment, research, and education of celiac disease and other gluten-related disorders.
Ground in tradition
Fasano completed his medical training at the University of Naples, a place he describes as one of the sanctuaries of celiac disease.
“In Europe during the past few centuries, there are spots that are focused on specific medical interests,” he explains. “Naples was focused on celiac disease. This was a pediatric condition at the time, with GI disorders, and they had the expertise to understand some of the intimate mechanisms with the disease. They were the pioneers, at the forefront of the disease.”
But Fasano wanted a change. He moved to the US with no intention to continue working with celiac disease. But what struck him almost immediately was that celiac disease did not appear to exist in the US. He was told it was rare, and then experienced the phenomenon firsthand as nearly a year passed without a single case presenting itself in his clinic.
At the time, the incidence rate of celiac disease in Europe was 1 in 300, but in the US it was 1 in 10,000.
“I thought, ‘how is that possible?’” Fasano recalls. “After all, the ingredients are here. We have the same genes that our European ancestors brought over here, we eat the same grains that they eat in Europe, and we have huge discrepancies.”
Those discrepancies prompted Fasano’s re-entry into the world of celiac disease—not just as a clinical entity, but also examining the mechanisms that lead to the disease.
Opening new doors
In 1996, Fasano founded the Center for Celiac Research, the first celiac center in the US, which is now located at MassGeneral Hospital for Children. His perseverance in the face of skepticism about US rates of celiac disease led to a groundbreaking study that established the rate of the disease at 1 in 133. It also changed the way he and others viewed the disease.
“The premise I was working on at that time was this is a pediatric condition; that only kids get this, with GI symptoms,” Fasano says. “The lesson I learned by looking into this is the clinical outcome is not always GI. You also have other intestinal symptoms. And it’s not confined to pediatrics.”
Fasano learned that celiac is an autoimmune disease, which was also a major breakthrough. He had always been under the impression that with autoimmune diseases the patient loses the ability for tolerance, and never recovers. But that’s not the case with celiac disease.
“If you look at the poster person for the disease, it can be someone who looks exactly like anyone else,” he says. “If you have the genes, provided you eat gluten, you can develop celiac disease anywhere in the world.”
Facts and fantasies
In 2014, Fasano, together with Susie Flaherty, wrote Gluten Freedom (Turner, May 2014), as a guide to a healthy, gluten-free lifestyle. He wrote the book, he says, because after 17 years of research at the Center for Celiac Research, where he serves as director, he found the pendulum had swung 180 degrees.
“We went from being oblivious of the disease, to the situation now where the claim is everything that is wrong in life is the fault of gluten; so much so that everyone needs to go gluten-free,” Fasano says. “I thought that it was time to put things in order.”
Putting things in order, indeed. A recent poll conducted by Scientific American found that more than 30% of Americans want to cut down or eliminate gluten from their diets. At present, the gluten-free market is a $6.3 billion industry that continues to grow. And that concerns Fasano.
“[Gluten] has become the most fashionable diet ever in the US, and has been vilified as a fad,” Fasano explains. “I won’t dispute that there is a fad component, and the market testifies that is the case. My problem is that for celiac individuals, the gluten-free diet is like insulin for diabetics. They don’t have the capability to survive if they can’t implement a gluten-free diet. But not as a fashion, as a necessity. So, calling this a fad, that concerns me.”
In good hands
Fasano says he loves working with young people and being a mentor, as well as enjoying his clinic time, and being able to make a difference in people’s lives.
“There is nothing better than to leave behind a legacy when you are working with smart, passionate, dedicated people who will continue to move the field forward,” he says. “It’s very rewarding to know that when I retire, and I’m playing bocce, the work that has been done will be left in very good hands.”