• Carrie Russo, Randi L Wolf, Hope J Leichter, Anne R Lee, Norelle R Reilly, Patricia Zybert, GreenPeter H RPHRCeliac Disease Center, Columbia University Irving Medical Center, New York, NY, 10032, USA., and Benjamin Lebwohl.
• Program in Nutrition, Department of Health and Behavioral Studies, Teachers College, Columbia University, 525 West 120th Street, Box 137, New York, NY, 10027, USA. car2171@tc.columbia.edu.
• Dig. Dis. Sci. 2020 Oct 1; 65 (10): 2959-2969.

BackgroundLittle attention has been paid to family-wide repercussions of a child's celiac disease diagnosis and concomitant gluten-free diet management.AimsWe quantitatively and qualitatively describe positive and negative family-wide effects of a child's celiac disease diagnosis and disease management.MethodsWe interviewed 16 families with at least one child currently following a gluten-free diet, with a biopsy-confirmed celiac disease diagnosis ≥ 1 year prior. Mothers and fathers independently rated child's dietary adherence, concern about child's health status, burden in caring for child's dietary needs, and level of change in various aspects of life post- diagnosis. Children rated their own celiac-specific quality of life through a validated scale. Seventy-one in-depth semi-structured interviews were conducted with 16 children with celiac disease, 31 parents, and 24 siblings.ResultsMothers and fathers rated the effects of their child's celiac disease differently, with mothers reporting more lifestyle changes and heavier burden. Negative and positive themes emerged from the interviews. Mothers felt the burden of managing a gluten-free diet. Fathers felt guilty for carrying a celiac disease-associated gene and both fathers and siblings regretted limited food choices at restaurants and home. The need to be a more creative cook was seen as a positive effect by mothers. Fathers appreciated new family traditions. Siblings felt they had developed empathy for others. A framework is proposed to illustrate these family-wide interactions.ConclusionsA child's celiac disease diagnosis and disease management affects the entire family. Our results will inform family-centered interventions that maximize quality of life for families.

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