Sharone Jelden, of Brookline, Mass., brought her three children to the doctor to be tested for celiac disease. As an adult who lived with the disease for 23 years before being diagnosed, she knew her children could also develop it. Despite the tests’ negative results, one of her daughters was still showing symptoms.
“I had her tested again several months later and it came back positive for celiac disease,” said Jelden, who then decided to seek out the best care for her daughter. Her diligent research brought her to the office of Alessio Fasano, MD, director of the Center for Celiac Research and Treatment at Mass General for Children (MGfC) and Massachusetts General Hospital.
Jelden’s daughter was one of Fasano’s first patients when the Celiac Center opened in January 2013. For the center, this coming January marks 20 years of research breakthroughs and patient care and four years since moving to Boston from Baltimore, Md. To celebrate, the Celiac Center hosted the 20th Anniversary Celebration & Symposium in November 2016, at which Jelden shared her experience as a featured speaker.
Over the years, the Celiac Center has made amazing strides in the field of celiac research. In 2003, Fasano and his team of researchers uncovered the prevalence of celiac disease as one in every 133 people. In the late 1990s, he and his team developed a diagnostic blood test, called anti-tissue transglutaminase, or tTg, that is now used around the world. Another important breakthrough was the discovery of zonulin, a protein that regulates intestinal permeability. Fasano’s research has shown that people with celiac disease and other autoimmune disorders have increased intestinal permeability.
“There is no question that we have moved both the treatment and the science forward with some of our discoveries and innovations,” said Fasano. “Our work with zonulin has led to a therapeutic drug that has been fast-tracked by the [U.S. Food and Drug Administration] and is set to enter Phase III clinical trials. This could provide a safety net for people with celiac disease to eat safely and avoid cross-contamination on the gluten-free diet.”
The Celiac Center has also played a leading role in raising awareness and educating people about celiac disease and other gluten-related disorders. It spearheaded the effort to improve gluten-free food labeling through the passage of the Food Allergen Labeling and Consumer Protection Act of 2004. In 2014, Fasano released Gluten Freedom, a book for health care providers and the general public about living a gluten-free lifestyle. It has been translated into five languages.
“Our advocacy work with healthcare practitioners, patients, legislators and the general public is just as significant as our scientific successes,” said Fasano. “This is something that we could never have achieved without the assistance of the celiac community, industry partners, many generous individuals and the support of our colleagues at Mass General and MGfC.”
For Fasano, his years of care are rooted in a deeply held belief that every patient deserves personalized care that allows them to live a full life. Shortly after meeting Fasano at her daughter’s appointment, Jelden became his patient as well when he took a personal interest in her care. “I told him my tTG was very high and I was still symptomatic, even though I was extremely careful on the gluten-free diet. From there, he took me and my daughter on as patients. I felt truly cared for, like someone was taking the disease seriously and wanted to help us get better.”
Since meeting Fasano, Jelden’s life has significantly improved. “I’ve started Moving Pictures Productions, which is my video editing company. I go to the gym and I have energy to manage my three children,” she said. “Before, I was in survival mode for so long. After being treated by Dr. Fasano, all of the symptoms I had, like joint pain, fatigue and migraines disappeared. Now I’m finally able to experience life in a body that’s healthy.”