As part of its ongoing mission to accelerate treatments and improve quality of life for the millions affected by celiac disease, the Celiac Disease Foundation was proud to once again sponsor Celiac Disease on the Horizon, a bi-annual scientific symposium hosted by the Celiac Disease Center at Columbia University. Held May 1–2, 2025, in New York City, the conference convened a distinguished international faculty of physicians, scientists, dietitians, industry leaders, and patient advocates to address the urgent need for non-dietary therapies and innovations in celiac disease research and care.
The Foundation’s deep investment in research, education, and expanding access to care was reflected throughout the program, with featured presentations by Chief Scientific and Innovation Advisor Dr. Robert Anderson, Chief Education and Community Engagement Officer Vanessa Weisbrod, and Foundation-funded researcher Dr. Amelie Therrien. Across the sessions and panel discussions, the conference underscored the momentum building in the field, from advances in diagnosis and immunopathogenesis to the rapidly growing pipeline of potential drug therapies.
The conference opened with a robust discussion on the current landscape and future of celiac disease screening in the United States and around the world. Dr. Knut Lundin shared data from Norway’s large scale screening efforts, demonstrating the impact of widespread serological testing in identifying undiagnosed cases early. Dr. Marisa Stahl followed with an overview of screening challenges in the U.S., highlighting how many individuals remain undiagnosed for years due to lack of routine screening in primary care and asymptomatic presentations. Mayo Clinic’s Dr. Joseph Murray examined environmental risk factors for celiac disease, emphasizing the need for further research to improve our ability to predict who may be at risk for developing the celiac disease. Building on this international perspective, Dr. Carlo Catassi presented progress on Italy’s new legislation mandating celiac disease screening in children, a public health initiative poised to dramatically improve early detection and long-term outcomes across the country.
Multiple speakers advocated for more accessible and systematic screening approaches, including case-finding in at-risk populations, improved serologic tools, and the integration of genetic and microbiome data to identify those most vulnerable to developing the disease.
Dr. Robert Anderson, the Celiac Disease Foundation’s Chief Scientific and Innovation Advisor, presented “In vitro diagnosis of celiac disease: progress and challenges,” offering a compelling overview of emerging diagnostic technologies. As the lead developer of the first non-invasive IL-2 test for celiac disease, Dr. Anderson discussed how laboratory-based methods could be the future of celiac diagnosis. His talk emphasized the importance of balancing scientific rigor with real-world application. In vitro diagnostics could prove especially valuable for patients with limited biopsy access, children, and those on gluten-free diets who are reluctant to undergo food challenges. Dr. Anderson’s work continues to redefine how clinicians approach diagnosis and how researchers assess efficacy in clinical trials.
A highlight of the conference was the presentation by Dr. Amelie Therrien, recipient of the 2024 Celiac Disease Foundation – SSCD Outreach Program to Improve Detection of Celiac Disease Research Grant. With support from the $100,000 grant, Dr. Therrien is conducting a research project to assess the prevalence of undiagnosed celiac disease in Hispanic communities, an area historically underrepresented in celiac research. During her talk, Dr. Therrien shared early findings from her community-based screening initiative, revealing deeply concerning disparities in diagnosis, awareness, and access to care.
Her work emphasizes the importance of culturally tailored outreach and education, and the need for multilingual resources and trusted community partnerships.
In a powerful session titled “Patients’ perspective on serologies, biopsy, and what it means to have a confirmed diagnosis,” Celiac Disease Foundation Chief Education and Community Engagement Officer Vanessa Weisbrod spoke to the lived experience of navigating the diagnostic journey and the importance of a confirmed diagnosis. Drawing on both personal insights and data from the iCureCeliac® registry, she highlighted the emotional toll of delayed or missed diagnoses, confusion around inconsistent testing guidelines, and the anxiety many patients face around the duodenal biopsy. Her presentation called for better provider education, clearer clinical pathways, and the inclusion of patients in research and policy decisions that impact diagnosis and access to treatment. Vanessa’s message was clear: science cannot advance without centering the voices of those it aims to serve.
One of the most anticipated sessions at the conference focused on the current landscape of drug development for celiac disease, an area where hope has long outpaced delivery. In a candid talk, Dr. Dan Leffler of Takeda Pharmaceuticals and Beth Israel Deaconess Medical Center addressed the frustrating truth, “We’ve been five years away from a therapy for celiac disease for the last 15 years.”
Dr. Leffler outlined several key reasons why progress has been slower than anticipated. First, the need for gluten challenge studies, while biologically informative, are not suitable as registrational trials under current regulatory frameworks. Yet, studies without controlled gluten exposure often fail to produce meaningful data. Finally, validated endpoints, the measurable outcomes required by regulatory bodies like the FDA, have been difficult to define and standardize in celiac trials. Without clear markers of clinical benefit, proving a therapy’s effectiveness remains a major hurdle. Despite these challenges, Dr. Leffler emphasized that “real progress has been made.”
Dr. Leffler’s point was echoed by experts presenting updates on therapeutics such as TAK-101, TAK-062, TAK-227, Amlitelimab, DONQ52, TEV-53408, and Latiglutenase. Each targets different aspects of celiac pathophysiology including gluten digestion, immune modulation, and antigen presentation.
Finally, the growing need to standardize how gluten is measured and regulated in the context of celiac disease was addressed by Dr. Jennifer Sealey-Voyksner. During her talk, she introduced the newly formed International Society for the Study of Celiac Disease Gluten Safety and Standards Committee (GSSC), an international working group dedicated to improving the scientific and regulatory framework around gluten safety thresholds. Dr. Sealey-Voyksner outlined how emerging advances in analytical chemistry, immunology, and immune biomarkers are transforming our ability to detect and characterize gluten peptides that trigger the immune response in celiac disease. These scientific breakthroughs not only hold promise for enhancing diagnostic accuracy and therapeutic trials, but also signal the need to revisit and revise food labeling and safety standards.
The Celiac Disease on the Horizon conference made clear that while the road to non-dietary therapies is complex, the science is advancing and so is the sense of urgency. With world-renowned experts pushing boundaries in diagnostics, drug development, and expanded access to care, and with patients and advocates helping to shape the research agenda, the future of celiac disease care is brighter than ever. The Celiac Disease Foundation is proud to help lead this charge through funding innovative studies, amplifying patient voices, and building the global partnerships needed to drive lasting change. Together, we’re not just imagining what’s on the horizon, we’re helping to make it a reality.