Background:
Celiac disease (CD) remains underrecognized in Mexico, where limited awareness, inconsistent access to safe gluten-free food, and the absence of standardized institutional protocols can create significant barriers for patients and families. Patient-led advocacy may help translate lived experience and scientific evidence into public policy.
Objective:
To describe the development and outcomes of a patient-led advocacy initiative aimed at improving recognition, safety, and inclusion of people with celiac disease in the state of Sonora, Mexico.
Methods:
Familia Sin Gluten, a patient and family-led initiative, combined community education, patient experiences, scientific evidence, engagement with healthcare professionals and institutions, and direct dialogue with policymakers. Identified priorities included improved awareness and diagnosis, safer access to gluten-free food, prevention of gluten cross-contact, institutional protocols in schools and healthcare settings, and clearer public guidance. These priorities were translated into policy proposals and presented through meetings, educational activities, public communication, and legislative engagement.
Results:
The initiative contributed to the introduction of a celiac disease legislative proposal in Sonora in December 2025, followed by an open parliamentary process in March 2026 involving discussion of patient needs and proposed measures. In April 2026, the Sonora Congress approved legislation addressing celiac disease, representing a significant step toward formal recognition and institutional protection for the celiac community in the state. Advocacy efforts also supported dialogue with healthcare institutions regarding gluten-free dietary protocols and increased public and professional awareness through educational initiatives.
Conclusion:
This experience demonstrates how organized patient advocacy can help bridge gaps between lived experience, scientific evidence, healthcare systems, and public policy. The Sonora case may provide a replicable framework for advancing celiac disease recognition and inclusion in regions where formal protections remain limited.