The Celiac Disease Program at
Children's National Health System
The Celiac Disease Program at Children's National Medical Center is dedicated to developing a national model for other hospitals to follow in the detection and treatment of Celiac Disease in children. The goal of our Program is to improve the way that pediatric Celiac Disease is diagnosed and treated through the implementation of our 5-part approach. This approach ensures that the highest quality of care is provided to our patients with Celiac Disease. Along with each patient’s primary gastroenterologist, our staff and community mentors act as the portal through which families are introduced to our Program.
At the time of diagnosis, our patients and their families experience the support team of physicians, nurse practitioner, dietitian and their community mentor. Every newly diagnosed patient leaves the GI Clinic with a Getting-Started Kit that includes this Celiac Disease & Gluten-Free Diet Handbook, a reusable shopping bag filled with gluten-free food items and contact information for a mentor who has been diagnosed with Celiac Disease or has a child with this condition. More about our mentoring programs can be found on page 27.
Additionally, we direct our patients to our website (www.childrensnational.org/celiac) which can help them begin their gluten-free journey. Appointments with a dietitian typically occur within 1-2 weeks of diagnosis; however, if families need dietary assistance prior to their clinic visit, our staff is available for phone consultations.
Our 5-Part Approach
1. As health care providers, it comes as no surprise that treating the medical needs of our patients is the first part of our approach. We have the facilities, staff and support team to provide the highest level of diagnostic testing and on-going medical care for our patients.
2. The second part of our Program deals with another crucial step in healing – that of meeting the psychological needs of our patients. As maintenance of a gluten-free diet can prove to be a significant challenge, especially for adolescents and young adults, we offer psychological support as part of our clinic. Our Celiac Disease Program includes a psychologist to help children and their families adjust to the lifestyle changes associated with celiac disease. We strongly believe the mind and the body must be treated together to insure the best outcome for our patients. Our Program:
- Employs integrative medical techniques, such as biofeedback, to help children deal with the stress associated with their lifestyle change
- Empowers children to feel confident when explaining their dietary needs to others
- Treats feelings of isolation and depression resulting from their diagnosis
- Creates support groups for children and their families
3. Our third focus is educating and training health-care providers. This is another important way to continue providing excellent care for our patients with CD. This is accomplished through continuing education programs for physicians, nurses and other health-care providers who care for pediatric patients. Education is the best way to increase awareness about Celiac Disease in the community and about the indications for screening.
4. The fourth part of our Program involves community outreach and advocacy. The goal of this activity is to help families navigate a gluten-free diet inside and outside of the home by educating people involved in many aspects of the child’s environment. To advocate for our patient families, our staff makes presentations at schools and daycare centers for teachers, school nurses and food preparation staff. These efforts are proving to be an excellent way to support our patients with Celiac Disease as well as to educate those who play an integral role in the lives of our patients.
Our Program also trains community mentors who accompany newly diagnosed families to the grocery store to help them manage shopping for food in a new way. In addition, our community mentors are available to respond to questions about their experiences of raising a child with Celiac Disease. This is a powerful form of support that can help our newly diagnosed families to make a less stressful and more efficient and effective transition to a gluten-free life.
5. Finally, no comprehensive program would be complete without our 5th component, research. Clinical research helps to create new approaches to diagnosis and also provides evidence-based information which can help to improve medical care, management and treatment. We plan to create interdisciplinary projects aimed at improving our understanding of the complexities of Celiac Disease.
Establishing a standardized approach to the care of pediatric patients with Celiac Disease is one of the first goals of our research agenda. For example, there are currently no national guidelines which provide recommendations for the on-going evaluation of potential problems like vitamin deficiencies, osteoporosis and thyroid disease. We hope to be at the forefront of developing a comprehensive management protocol.