May is National Celiac Disease Awareness Month! If you suspect that you or your child has this disorder, your first step should be to make an appointment with a gastroenterologist, who can accurately diagnose your symptoms. To get you started, here are some important facts about celiac disease.
What is celiac disease?
Celiac disease is a genetic, autoimmune disorder affecting the gastrointestinal system. Children and adults with celiac disease cannot digest gluten. Gluten is the protein found in wheat, rye, and barley.
How is it treated?
A gluten-free diet is the only treatment for celiac disease.
How do you know if you have it?
Symptoms associated with celiac disease vary widely from person to person. Everything from fatigue and headaches, to bloating, diarrhea, and constipation can be signs of the disease. Celiac disease may also be present without any symptoms at all. Blood work for elevated celiac markers, as well as genetic testing, can help rule out or establish suspicion for celiac disease. If it is suspected, an endoscopy with biopsies is recommended for definitive diagnosis.
What foods must you avoid?
The gluten-free diet eliminates all food items containing, or that have come in contact with, wheat, rye, barley, and their derivatives. This includes spelt, farro, and malt. One of the biggest challenges of living with celiac disease is learning to identify all hidden sources of gluten in recipes and prepared foods. For example, soy sauce, salad dressings, and mustard often contain gluten.
What if you don’t avoid these foods?
In a person with celiac disease, failure to comply with a gluten-free diet leads to increased risk for certain cancers, poor growth and development in children, persistent abdominal pain, and nutrient deficiencies.
What sort of things need to be monitored after receiving the diagnosis?
The first step after diagnosis is initiating a gluten-free diet—a multidisciplinary approach is key to a successful transition into a gluten-free lifestyle. A dietitian helps to establish meal planning and maximize dietary intake. A nurse practitioner follows with blood work. A social worker and certified child life specialist team up to provide emotional and educational support as needed. Depending on the person and disease process, blood markers are checked every three months to yearly to ensure adequate control of the disease.
Support for children with celiac disease
Beginning and maintaining a completely gluten-free lifestyle can be challenging for children and adolescents with celiac disease. NYU Langone’s Pediatric Celiac Disease and Gluten-Related Disorders Program offers families the tools they need to make this transition as easy as possible. In this program, pediatric gastroenterologists, nurse practitioners, and other nursing professionals, nutritionists, and social workers focus on improving the health and quality of life of children with celiac disease and non-celiac gluten sensitivity.
Ayelet Schieber, MS, RD is a registered dietician in the Pediatric Gastroenterology Program at NYU Langone Medical Center.
At Hassenfeld Children’s Hospital at NYU Langone, we understand that caring for infants, children, and teenagers is a special privilege. That’s why we partner with our young patients and their families to offer expert medical and surgical care. Our specialists treat children with conditions ranging from minor illnesses to complex, more serious issues at locations throughout the New York metropolitan area.