For families managing celiac disease, ensuring a child avoids gluten isn’t just a preference, it’s a medical necessity. Yet until now, there’s been no standardized, validated tool for clinicians to assess a child’s risk of gluten exposure. That changed with the recent publication of the Gluten Exposure Risk Assessment (GERA), the first validated screening tool specifically developed for caregivers of children with celiac disease.
Developed by a national consortium of experts across 12 leading pediatric medical centers through the RAISE-CD (Research, Awareness, Innovation, Service, and Education for Celiac Disease) network, GERA helps clinicians identify behaviors that increase the risk of gluten exposure at home and in everyday life. The study, published in the American Journal of Gastroenterology, included input from gastroenterologists, dietitians, psychologists, nurses, and patient advocates through a rigorous Delphi process, followed by validation testing with more than 850 caregivers.
While current methods for assessing gluten-free diet adherence, such as dietitian interviews, serology, and even biopsy have limitations, GERA offers a quick, behavior-based screening tool that provides actionable insights for clinical teams. The final tool includes nine items spanning two domains: Home and Outside the Home. The assessment addresses tangible risk factors like sharing kitchen equipment, trusting gluten-free menus without asking questions, and eating parts of gluten-containing foods.
“This is a major advancement in pediatric celiac care,” said Vanessa Weisbrod, Chief Education and Community Engagement Officer at the Celiac Disease Foundation and one of the study authors. “GERA bridges a long-standing gap between what caregivers observe in daily life and what clinicians need to know to provide better care. It empowers families and clinicians with a common language to assess risk and make more informed decisions about managing the gluten-free diet.”
Importantly, the study found that behaviors observed by caregivers were more reliable indicators of gluten exposure risk than general knowledge of the gluten-free diet or even reported frequency of exposure. Notably, the GERA was significantly correlated with provider assessments of exposure risk but not with perceived frequency of gluten exposure or quality of life metrics. Future research is needed to determine if long-term use of this tool correlates with improved health outcomes for pediatric patients following a gluten-free diet.
Clinicians can now incorporate GERA into routine follow-up visits to better identify patients at higher risk of gluten exposure and intervene earlier to prevent complications. The tool is available for clinical and research use without licensing fees.
To learn more about the GERA or download the final assessment questions, visit: http://links.lww.com/AJG/D738