Background: A strict gluten-free diet (GFD) is the only treatment for celiac disease (CeD), yet it is not covered by insurance despite functioning as essential medical therapy. CeD causes intestinal damage, malabsorption, and symptoms including abdominal pain, diarrhea, weight loss, anemia, osteoporosis, headaches, and mood changes. Although a GFD restores intestinal health, it creates significant financial and psychosocial burdens.
Aims: This pilot study aimed to measure the financial and psychosocial burdens of maintaining a GFD to support efforts toward insurance coverage of medically necessary gluten-free foods.
Methods: Sixteen newly diagnosed children with CeD and 16 diagnosed for more than a year were enrolled. Newly diagnosed families completed a 25-item survey at diagnosis and four weeks after starting the GFD. Both groups completed validated food-insecurity and perceived-stress questionnaires. Newly diagnosed families submitted five grocery receipts over six months; controls submitted one. Analyses were descriptive due to small sample size and missing data.
Results: Thirty-two children participated (73% female; mean age 9). All controls completed surveys and receipts; participation among newly diagnosed families was variable, with only two completing all components. Perceived stress decreased after starting a GFD, and controls reported lower stress overall. Food insecurity was high at diagnosis and remained elevated among long-term GFD users. Grocery data showed an early spike in spending on processed gluten-free foods, later shifting toward naturally gluten-free items. Overall, GFD adherence increased grocery costs by about 11%, or roughly $666 per year.
Conclusions: Families managing pediatric CeD experienced reduced stress after starting a GFD, but food insecurity and increased food costs persisted. Even with shifts toward naturally gluten-free foods, financial strain remained substantial. Findings support collaboration with the Stanford School of Public Health to further assess economic burden, healthcare use, and gaps in insurance coverage to inform policy and advocacy.