The gluten-free diet receives lots of public attention as the trendy way to eat, but for people with celiac disease it is so much more than a fad. Celiac affects about 1 in 133 people and causes their immune system to attack their own intestines when they eat gluten, a protein found in wheat, rye, and barley. Without treatment, celiac disease can cause a range of symptoms and serious conditions, including inflammation in the gut, malnourishment, osteoporosis, lymphoma, and cancer.
The only treatment for celiac disease is a strict, lifelong gluten-free diet, which can be extremely challenging. Since people with celiac disease must be very careful about even very small amounts of exposure to gluten, it can be difficult to find ways to live the life they want while maintaining their health. In a recent study by a group at the Celiac Disease Center at Columbia University, people with celiac disease who say they are very careful (“extremely vigilant”) about their gluten-free diet can suffer. Compared to people who are less vigilant, those who follow a strict gluten-free diet have less energy and worse daily quality of life.
What’s so hard about eating gluten-free? To stay healthy, people with celiac disease must think carefully about every single thing they put into their mouth, every single day. They have to watch out for cross-contamination in the way food is prepared because even a couple crumbs will affect their health. To be safe, people with celiac disease must not only check packaged food labels and order from gluten-free menus, but they often contact manufacturers and restaurant chefs to learn in detail how food was produced and prepared. This can be a big burden on a person’s emotional well-being. Some people with celiac disease have described the experience of the gluten-free diet as similar to that of treatment for people with end-stage renal disease.
Population-wide studies have found that people of all ages with celiac disease are at a higher risk for depression, anxiety, social isolation, disordered eating, and reduced quality of life compared to those without celiac disease. Importantly, stress and poorer mental health can negatively affect the ability to follow medical treatment. For all these reasons, mental health professionals play a crucial role in supporting a successful gluten-free diet in the celiac disease community.
The Mayo Clinic estimates that about three out of every four people with celiac disease don’t even know they have it. Many times, people seek psychotherapy for their symptoms without knowing that celiac could be to blame, thinking their aches and pains are caused by stress, anxiety, or depression. Because of this, it’s also important for mental health professionals to know the signs of celiac disease and encourage screening for the condition. It’s worth encouraging screening for celiac disease when someone has unexplained physical symptoms such as stomachaches, nausea, headaches, and fatigue, or emotional or behavioral challenges that do not get better with therapy.
Continuing Education Opportunity
The Celiac Disease Program at Children’s National Health System, in partnership with the Celiac Disease Foundation, has developed a free online continuing education program for mental health professionals. This program is designed to help psychologists, social workers, and counselors gain awareness of the struggles that are commonly experienced in celiac disease. This serves two important purposes: First, our program will help therapists be more competent in helping people with celiac disease manage the struggles that come along with the gluten-free diet. Second, professionals who complete the program can help people to receive a correct diagnosis in the first place. Our goal is to continue to provide science-backed recommendations so we can be the go-to resource for training therapists of the future. Learn more at www.celiacpsychce.org.
About the Author
Shayna Skelley Coburn, PhD
Celiac Disease Program, Children’s National Health System
Dr. Coburn is a licensed psychologist in the Division of Gastroenterology, Hepatology, and Nutrition at Children’s National Health System and Assistant Professor of Psychiatry and Behavioral Sciences at the George Washington University School of Medicine and Health Sciences. Dr. Coburn is in charge of psychosocial services in the Celiac Disease Program, which offers consultations and empirically-supported interventions to help families navigate the challenges of diagnosis and management of the gluten-free diet. She is also contributing to the local and national celiac disease community through her development of support and coping skills groups, educational programming, advocacy, and research. Her areas of expertise include coping and resilience in families with chronic illness, improving dietary adherence, and promoting positive and constructive doctor-patient communication. Dr. Coburn earned her Ph.D. at Arizona State University and completed her postdoctoral fellowship at the Johns Hopkins School of Medicine. She was a psychology intern at Children’s National Health System and is thrilled to be back as a faculty member. Dr. Coburn loves dogs, yoga, and trying new and delicious gluten-free foods.
About Children’s National Health System
Children’s National Health System, based in Washington, D.C., has been serving the nation’s children since 1870. Children’s National is #1 for babies and ranked in every specialty evaluated by U.S. News & World Report including placement in the top 10 for: Cancer (#7), Neurology and Neurosurgery (#9) Orthopedics (#9) and Nephrology (#10). Children’s National has been designated two times as a Magnet® hospital, a designation given to hospitals that demonstrate the highest standards of nursing and patient care delivery. This pediatric academic health system offers expert care through a convenient, community-based primary care network and specialty outpatient centers. Home to the Children’s Research Institute and the Sheikh Zayed Institute for Pediatric Surgical Innovation, Children’s National is one of the nation’s top NIH-funded pediatric institutions. Children’s National is recognized for its expertise and innovation in pediatric care and as a strong voice for children through advocacy at the local, regional and national levels. For more information, visit ChildrensNational.org, or follow us on Facebook and Twitter.