By: Marilyn Geller, Chief Executive Officer, Celiac Disease Foundation 

Celiac disease is one of the most common autoimmune diseases in the world, yet it remains underdiagnosed, misunderstood, and underfunded. This May, during Celiac Disease Awareness Month, we have an opportunity to change that.   

At the Celiac Disease Foundation, our mission is clear: accelerate diagnosis, advance treatments, and improve the lives of everyone affected by celiac disease. But progress doesn’t happen on its own; it happens when patients, providers, researchers, and advocates take action together. This month amplifies our efforts to educate health care providers and patients who may be unaware they are at risk, support families struggling to navigate the disease, lead policy change, and accelerate research toward better treatments and, ultimately, a cure.

Celiac disease is a chronic genetic autoimmune disorder in which eating gluten, a protein found in wheat, rye, and barley, causes damage to the small intestine. More than 70% of people living with celiac disease are still undiagnosed, putting them at risk for serious long-term health complications, including infertility, osteoporosis, neurological conditions, and an increased risk of cancer, and cardiovascular disease.  Currently, the only treatment is a strict, lifelong gluten-free diet, which requires ongoing vigilance—reading every label and managing costs that can be two to three times higher than a conventional diet. 

How You Can Get Involved This May

Know the Symptoms: Get Tested 

Recognizing the signs of celiac disease is one of the most important things you can do for yourself or a loved one. If you have persistent or unexplained symptoms, or a family member with celiac disease, you may be at higher risk. Our free Celiac Disease Symptoms Assessment Tool can help you to identify your risk of developing celiac disease and make informed decisions about your health.  

Power Research That Leads to Treatments 

Join our iCureCeliac® Patient Registry and explore current clinical trials and studies. Patient data fuels the scientific breakthroughs that lead to new diagnostics, treatments, and a cure. 

Advocate for Policy Change—Especially in Massachusetts 

Policy change is one of the fastest ways to improve lives. This year, Massachusetts is considering two critical bills that could transform care for people with celiac disease:  

• • The CAPE Act H.5013 / S.2928 (Celiac Awareness and Pediatric Evaluation Act): A proposal to add routine celiac disease screening to the standard lipid panel already recommended for children ages 8–12.  
  • The SNACCK Act H.5012/ S.2927 (Safe Nutrition, Allergen, and Celiac Communication for Kids): A bill to ensure schools clearly communicate gluten-free and allergen-safe meal procedures. 

If you live in Massachusetts, your voice matters right now. Contact your state representative and senator and urge them to support these bills: CAPE Act, SNACCK Act. Personal stories can make a powerful difference.

Support the Medical Nutrition Therapy Act 

Help us advocate this May for better access to essential nutrition care for people with celiac disease. The Medical Nutrition Therapy (MNT) Act would expand Medicare coverage to include dietitian services for celiac disease. Join us in urging Congress to support this important legislation here: https://celiac.org/mnt/#/18/  

Learn from Celiac Disease Experts 

Take advantage of our free virtual education programs, including: 

• • Foundations of Celiac Disease: Dietitian-designed to support individuals navigating life with celiac disease 
  • Culinary Medicine Webinars: Latest research and nutrition strategies from experts 
  • School Support Sessions: Everything you need to know to support your child with celiac disease in school 
  • Living with Celiac Virtual Meetups: Expert tips, resources, and guidance on thriving with a celiac disease diagnosis

Support College Students with Celiac Disease 

Help improve the college experience for students with celiac disease by sharing our peer-reviewed, published National Recommendations for Supporting Students with Celiac Disease in Higher Education. 

Published in the journal Nutrients, these evidence-informed guidelines provide colleges and universities with clear, actionable strategies to ensure safe dining, appropriate accommodations, and equitable access to campus life. 

Download and share the full recommendations with students, parents, and higher education leaders at https://celiac.org/school-college/. 

Apply for Research Funding 

If you’re a health care provider or medical student focused on celiac disease, explore our research grant opportunities to support your work in improving care and outcomes.

Fund the Future with Team Gluten-Free® 

Turn your next run, bake sale, birthday, or community event into a Team Gluten-Free® fundraiser to raise awareness and support the Foundation’s research, education, and advocacy initiatives. 

About the Celiac Disease Foundation 

The Celiac Disease Foundation, established in 1990, is the leading global patient advocacy organization committed to accelerating diagnosis, treatments, and a cure for celiac disease, a serious genetic autoimmune disease. In partnership with the Society for the Study of Celiac Disease, the Foundation’s scientific advisory and professional leadership body, we unite the strength of the clinical, research, and patient communities to drive progress. Our mission is to improve the health and well-being of the millions affected by celiac disease through strategic investments in research, advocacy, and education.