More Than a Diet: Improvements Needed in Care for Children with Celiac Disease
The burden of maintaining a gluten-free life can take a toll on mental health, especially for children with celiac disease who often can’t eat what everyone else is.
A new study from UC San Francisco reveals that when these children face social risks like stigmatization, anxiety, or depression, they have increased difficulties sticking to a gluten-free diet and experience more symptoms.
The paper, recently published in The Journal of Pediatrics, suggests that care strategies focused on only enforcing a strict gluten-free diet may need to be revised and that a more multi-disciplinary approach to care is needed to reduce these disparities.
“Notably, our study found that around 6 in 10 children living with these social risks experience worse disease activity and poorer dietary adherence, which warrants fundamental change and improvements to how we care for children with celiac disease in the United States,” says Telly Cheung, MD, first author of the study and a UCSF pediatric fellow at the Wadhwani Lab in the Division of Gastroenterology, Hepatology, and Nutrition.
The Challenges of a Gluten-Free Diet
Celiac disease currently cannot be cured, and a gluten-free diet is currently the only treatment. While eating a few cookies once typically won’t have devastating consequences, children unable to consistently follow the diet can suffer from impaired growth, delayed puberty, and organ disorders.
Cheung’s study found multiple social risks that were each associated with a more than doubled likelihood that a child has difficulties maintaining the gluten-free diet: social stigmatization, poor health literacy, and mental health comorbidities.
“Poor disease control can lead to severe consequences later in life, including infertility, intestinal cancers, and weakened bones,” said Cheung. “We’re finding that these children need more support to overcome the loneliness and distress that comes with not being able to fully participate in shared eating experiences.”
Cheung noted that anxiety may cause hypervigilance around food and increase the risk for eating disorders, and depression can lower motivation to maintain a gluten-free diet. Some children with poor health literacy may not know what they shouldn’t eat or how drastic the consequences could be.
“Integrating behavioral health specialists, expert dieticians, and social workers into the standard care model for celiac disease will help provide the necessary psychosocial support for effective, lifelong management of symptoms,” said Cheung.
The Future of Celiac Disease Care
UCSF Benioff Children’s Hospitals is committed to screening and addressing the social determinants of health that affect children with celiac disease. Our Celiac Disease Program in Oakland recently implemented a food insecurity screening initiative to identify and support high-risk households, and all our clinics across the Bay Area use a personalized, age-appropriate approach to help families navigate dietary constraints as they face new situations.
“Novel drug therapies for celiac disease are rapidly emerging, and we anticipate that millions will seek gastroenterology care for celiac disease screening and treatment guidance as these drugs develop. This work on social risks highlights critical variables that may soon impact more primary care practitioners,” said Cheung.
To support UCSF’s ongoing efforts to improve celiac care through research, eligible individuals are invited to join the UCSF Pediatric Celiac Disease Registry.
Authors: Co-authors from the UCSF Department of Pediatrics are Sharad Wadhwani, MD, MPH, Christine McDonald, ScD, MS, Mala Setty, MD, and Patrika Tsai, MD.