The Center for Celiac Disease at The Children’s Hospital of Philadelphia is one of the largest and most comprehensive of its kind in the United States, supporting more than 1,000 children with celiac disease — and their families — each year.
Opened in 2006, the Center is run by a core team of dedicated gastroenterologists, pediatric nurse practitioners, registered nurses, registered dietitians, psychologists and researchers. Social workers and child life specialists also collaborate to provide developmentally appropriate care and disease explanations.
Education and training is not just provided to the patient, says Ritu Verma, MD, section chief of clinical gastroenterology in the Division of Gastroenterology, Hepatology and Nutrition and founder of the Center for Celiac Disease. “We bring in any caretakers who are going to participate in the child’s care, including parents and grandparents, and then we teach them together.”
Caring for the entire family is what sets the Center apart from many other celiac clinics; because there’s a genetic predisposition to celiac disease — and many who have it may not even display symptoms — experts at the Center encourage everyone in the family to get screened for it.
The goal of the Center for Celiac Disease at CHOP is to provide specialized care and support for the child and the family, whether you are looking to confirm a diagnosis, navigate the gluten-free lifestyle, or are seeking a second-opinion evaluation.
Celiac disease is a condition in which the body’s immune system reacts against the protein gluten, which is common in wheat and grains and found in foods such as bread and pasta. Symptoms can range in severity and include abdominal pain, weight loss, chronic fatigue and poor growth — or there may be atypical symptoms or no symptoms at all, which presents many challenges in diagnosis.
Nearly 1 in every 133 Americans has celiac disease. It is often misdiagnosed as inflammatory bowel syndrome or lactose intolerance. On average, patients with celiac disease suffer symptoms for more than 11 years before they are diagnosed correctly. If left untreated, celiac disease can cause long-term, life-threatening damage to the intestine.
The first step in diagnosing celiac disease is through a panel of blood tests to check for the presence of certain antibodies. If a patient tests positive for celiac disease, an intestinal biopsy is necessary to confirm the diagnosis.
“That is still the gold standard for diagnosing celiac disease,” says Patricia Bierly, MSN, CRNP, a nurse practitioner who manages the Center with Dr. Verma. “We can also look for genetic markers for celiac disease, but just because you have a predisposition for the condition doesn’t mean you will develop it.”
Newly-diagnosed patients at the Center attend an education class with their families and caretakers to learn about celiac disease and nutrition. The only cure for celiac disease is lifelong avoidance of foods with gluten, so the clinical staff works closely with patients and families to to ensure a firm understanding of a gluten-free diet.
“Cross-contamination is a big issue here. You have to make sure that your sandwich does not touch another sandwich that has gluten in it. We spend a lot of time discussing that,” Dr. Verma says.
Dr. Verma, Patricia Bierly and Center staff give follow-up consultations and have even set up email addresses and online support groups to answer questions for families at the Center, the general public and outside physicians.
The Center also provides family screening for celiac disease, as well as assistance with adult gastroenterologist referrals.
Every year, the Center hosts an education day about celiac disease for CHOP families which features a range of gluten-free foods, child activities, speakers and gluten-free vendors. The staff also travels to educate other physicians and cafeteria staffs at schools about celiac disease.
“I don’t think there’s any other Center like this in the country,” Dr. Verma says.
Lean more information about the Center for Celiac Disease and its resources:
To schedule an appointment with the Center for Celiac Disease, call 215-590-3076.
Reviewed by: Ritu Verma, MD
Date: March 2013
The Center for Celiac Disease