Stony Brook Children’s Hospital opens celiac disease and gluten sensitivity center

Stony Brook Children’s Hospital has opened the first center on Long Island dedicated to the unique needs of children and families with celiac disease and gluten sensitivity.

Designed to meet the growing incidence of celiac disease in Suffolk and Nassau counties and located at Stony Brook Children’s Service at 4 Technology Drive in East Setauket, the multidisciplinary, comprehensive center improves access to diagnosis, treatment, management and support services. The center is the first on Long Island to offer this highly specialized care to children, according to Anupama Chawla, MD, Professor and Division Chief of Pediatric Gastroenterology and Director of the Celiac Disease and Gluten Sensitivity Center.
“The key to treating celiac disease and gluten sensitivities is patient compliance with dietary changes,” said Dr. Chawla. “Making these changes can be tough on families, so we make ongoing support and education part of our comprehensive treatment plan.”

The center’s team is led by board-certified pediatric gastroenterologists who assess children for this notoriously difficult-to-diagnose disease, with diagnostic testing performed at Stony Brook Children’s Hospital. The team then works with children and their families to make dietary changes to support improved health. Children are closely monitored thereafter, not only for symptom resolution but also for optimum nutrition, growth and bone health.

Currently, eliminating gluten from the diet is the only effective treatment for celiac disease and gluten sensitivities; however, several therapies are under investigation. In fact, physician-researchers at Stony Brook are currently conducting studies that may influence how celiac disease is understood and treated.

The team includes highly trained nurse practitioners and a registered dietitian. These specialists help educate children and families on nutrition, food choices, label reading, eating strategies and all the other day-to-day interventions necessary in the treatment of celiac disease.

JESSICA GARRISON: A PATIENT STORY

Celiac patient Jessica Garrison of East Northport, age 10, has been in the lowest percentiles for height and weight since age two. She had an extended belly, and often was moody and irritable. She had difficulty focusing in school, particularly in math and reading.

“We just thought this was who Jessie was,” said her mother, Sandra Garrison. At age nine, however, concerned about her short stature, Jessica’s pediatrician ordered blood work. “Her numbers indicating celiac disease were off the chart,” she said.

An endoscopy confirmed the diagnosis. “Within a week of going gluten free, we began to see a difference,” Garrison said. “Jessie was happier. Her energy improved and she began to look healthier.” Over the ensuing several months, her belly flattened out and she was able to focus better at school – so much so that she didn’t need the extra tutoring she had once required.

“Going gluten free isn’t easy, but Dr. Chawla and her team – especially the dietitian Deborah Salvatore – have been so supportive,” Garrison said. “They have connected us with resources and whenever I have a food question, all I have to do is call and they get back to me right away.”

A year after her diagnosis of celiac disease, Jessica continues to heal. She has grown almost an inch over the past six months, put on weight and will enter middle school in the fall, fully able to participate in all the activities that she loves, including gymnastics and cheerleading.

Learn more about the Celiac Disease and Gluten Sensitivity Center at stonybrookchildrens.org or call (631) 444-8115.