Adolescents with Celiac Disease Commonly use Maladaptive Eating Behaviors to Manage Gluten-Free Diet

Celiac.com 11/15/2021 - For people with celiac disease, managing a strict gluten-free diet can be challenging, even in the best of circumstances. The process can be confusing, frustrating, embarrassing and depressing. For many, especially young people, trying to navigate and manage a gluten-free diet can lead to impaired psychosocial well-being, a diminished quality of life and disordered eating. We know, for example, that children and adolescents with celiac disease, and non-celiac gluten sensitivity, face extra challenges with academic or emotional well-being, and may be at higher risk for disordered eating. Adolescents can also suffer stress when trying to manage a gluten-free diet.

A team of researchers recently set out to understand adolescents’ approaches to managing a gluten-free diet and the association with quality of life. Here's what they found.

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Using the Celiac Dietary Adherence Test and quality of life survey, researchers tested and surveyed a group of thirty adolescents with celiac disease, who ranged from 13–17 years old, and had been following a gluten-free diet for at least 1 year.

To explore the teens' approaches to gluten-free diet management, the researchers used a semi-structured interview that focused on developing key themes using an iterative process, and classified their management strategies and quality of life using psychosocial rubric. They then compared Celiac Dietary Adherence Test ratings across groups.

Using a four point scale, the team classified the gluten-free diet strategies that drive adaptive eating behaviors. They characterized behaviors by: greater flexibility (as opposed to rigidity); trust (as opposed to avoidance);  confidence (as opposed to controlling behavior) and awareness (as opposed to preoccupation).

More than half of those surveyed reported using maladaptive approaches to manage their gluten-free diet. Patients using maladaptive approaches to manage their gluten-free diets were more likely to be older, with lower celiac-specific Pediatric Quality of Life scores. Scoring differences between the groups ranged from 15.0 points for Isolation to 23.4 points for Limitations.

Adolescents with celiac disease, who manage a gluten-free diet using maladaptive eating behaviors that are similar to feeding and eating disorders, report lower quality of life. Teens with lower QOL scores in areas like school or emotional function might require interventions, including a Section 504 plan or meeting with a psychologist or social worker.

To reduce this risk, the team recommends that adolescents with celiac disease receive regular follow-up visits with gastroenterologists and dietitians, along with psychosocial support, as needed. Parents of adolescents with celiac disease should also talk with, and listen to their celiac teens about the dietary pressures and difficulties facing them on a daily basis. Making sure that adolescents with celiac disease learn to use healthy strategies to properly manage their gluten-free diet will help to ensure that future generations of celiac sufferers have a smoother path and a better quality of life. Remember, when our teens thrive, we all win!

Read more in the Journal of Human Nutrition and Dietetics

The research team included J. W. Cadenhead, R. L. Wolf, B. Lebwohl, A. R. Lee, P. Zybert, N. R. Reilly, J. Schebendach, R. Satherley, and P. H. R. Green. They are variously affiliated with the Department of Health and Behavior Studies, Program in Nutrition, Teachers College, Columbia University in New York, NY; the Department of Medicine, Celiac Disease Center, Columbia University Medical Center, Harkness Pavilion, New York, NY, USA; the Department of Psychiatry, Columbia University Medical Center, New York, NY, USA; and the Faculty of Life Sciences and Medicine, School of Population Health & Environmental Sciences, King's College London in London, UK.