When families walk into a doctor’s office after a celiac disease diagnosis, they’re not just handed a diet sheet. They’re handed a chronic lifelong autoimmune disease.
For decades, the gluten-free diet has been the only treatment for celiac disease. While effective for many, the diet is difficult to maintain, socially isolating, and vulnerable to accidental gluten exposure. For patients and families navigating daily life with celiac disease, better tools, better treatments, and ultimately prevention remain urgent needs.
Through decades of patient advocacy, the Celiac Disease Foundation has worked with policymakers, federal agencies, and the research community to increase awareness of the urgent need for celiac disease research funding.
Thanks to federal investment through the National Institutes of Health (NIH), researchers across the United States are working to answer the most important questions about celiac disease, from how it begins, to how it progresses, to how we might one day stop it before it starts.
The studies highlighted below represent more than $13 million in federal research investment, supporting investigators who are advancing our understanding of this complex autoimmune disease and improving care for patients.
Massachusetts General Hospital for Children
At the MassGeneral Hospital for Children, researchers are working to understand one of the most fundamental questions in celiac disease research: why does the disease develop in some individuals but not others?
Through more than $5 million in NIH-supported research, investigators led by Dr. Alessio Fasano and Dr. Maureen Leonard are following infants who carry the genetic risk factors for celiac disease. Their work focuses on the Celiac Disease Genomic, Environmental, Microbiome, and Metabolomic (CDGEMM) Study, a prospective birth cohort that tracks children at risk for celiac disease from infancy through early childhood.
Researchers collect and analyze a wide range of data, including microbiome samples, environmental exposures, immune markers, and metabolomic profiles, to understand how the immune system transitions from tolerance to gluten to the autoimmune response that characterizes celiac disease.
This “multi-omic” approach allows scientists to examine how genetics, microbes, diet, and environmental factors interact in early life. By identifying biological patterns that precede disease onset, researchers hope to develop predictive models that could identify children at risk before symptoms appear.
Ultimately, this work could enable early interventions designed to maintain immune tolerance to gluten, opening the door to prevention strategies that could fundamentally change the future of celiac disease.
Children’s Hospital Colorado
At Children’s Hospital Colorado, Dr. Edwin Liu leads the Colorado Clinical Center of the TEDDY Study (The Environmental Determinants of Diabetes in the Young), an international NIH-supported research effort designed to understand how autoimmune diseases develop in children.
With $486,752 in federal funding supporting the Colorado site, researchers followed children with genetic risk for autoimmune disease over many years, carefully monitoring environmental exposures, immune markers, and early signs of disease.
While TEDDY was originally designed to study type 1 diabetes, it has provided critical insights into the natural history of celiac disease as well. By tracking children from infancy, the study has helped researchers better understand when celiac disease first develops and what early signals may indicatedisease progression.
Over more than 15 years of research, TEDDY has produced dozens of scientific publications and helped establish Children’s Hospital Colorado as a leader in early-stage celiac disease research. Just as importantly, the project has launched the careers of investigators working across the field of autoimmune disease, strengthening the next generation of researchers.
Large, long-term studies like TEDDY are essential to understanding chronic diseases that develop gradually over time — and they are only possible through sustained federal investment.
Children’s National Hospital
While some researchers focus on prevention, others are working to improve the daily lives of patients already living with celiac disease.
At Children’s National Hospital, NIH funding supported the development of the Gluten-Free Resilience and Overall Wellness (GROW) Program, the first behavioral telehealth intervention designed specifically for adolescents with celiac disease and their caregivers.
Led by Dr. Shayna Coburn, this work was supported through a $793,000 NIH Career Development Award, enabling her team to develop and evaluate a structured group intervention delivered via telehealth.
The program focuses on helping teens build practical skills for navigating the challenges of a strict gluten-free diet, including managing social situations, handling accidental exposures, communicating about dietary needs, and maintaining emotional well-being.
The research team worked closely with families to design the program and is now testing it through a randomized clinical trial to measure its impact on quality of life and disease self-management.
In addition to supporting patients, the award helped launch Dr. Coburn’s independent research career and allowed her lab to train clinicians and scientists with specialized expertise in behavioral science and celiac disease.
Columbia University and the GLUTECH Trial
At the Celiac Disease Center at Columbia University, NIH funding is supporting the first large-scale randomized clinical trial evaluating whether gluten detection technology can improve disease management for patients newly diagnosed with celiac disease.
The GLUTECH Trial, led by Dr. Benjamin Lebwohl and Randi Wolf, is funded through a nearly $7 millionNIH grant and involves collaboration across four leading U.S. celiac disease centers including Columbia University, University of Chicago, Vanderbilt University Medical Center, and Beth Israel Deaconess Medical Center.
The trial is enrolling 200 adults recently diagnosed with celiac disease to evaluate whether at-home gluten detection tests, which can identify gluten exposure through urine testing, can improve intestinal healing and disease outcomes.
In addition to biopsy-based healing outcomes, the study will measure patient-centered outcomes such as symptoms, quality of life, dietary adherence, and blood markers of disease activity.
Studies of this scale require coordination across multiple institutions, specialized infrastructure, and long-term funding, making federal investment essential for generating the evidence needed to guide future clinical care.
The Role of Advocacy
The progress highlighted here did not happen by accident. It reflects years of work by researchers, clinicians, patients, and advocates including the Celiac Disease Foundation’s leadership in advancing federal policy and research priorities for the celiac community.
When patient voices and scientific discovery come together, real change becomes possible. And with continued advocacy and sustained research investment, the future of celiac disease care may look very different than it does today.