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

For the millions of people living with celiac disease, even a tiny crumb of bread can make them ill and trigger an immune response. Celiac disease is not a food allergy — it is one of the world’s most prevalent genetic autoimmune diseases, affecting one in 100 people worldwide, with 70-80% being undiagnosed. This May, during Celiac Disease Awareness Month, the Celiac Disease Foundation is boosting the visibility of celiac disease, the need for better diagnosis and treatments, and the opportunity for our community to make a difference.

When people with celiac disease eat gluten (a protein found in wheat, rye, and barley), their immune system attacks the lining of their small intestine, causing damage and malabsorption of nutrients. Left untreated, celiac disease can lead to additional serious health problems and an increased mortality risk for cancer, cardiovascular disease, and respiratory disease. Because there is currently no medication, treatment, or cure for celiac disease, patients must adhere to a strict, lifelong gluten-free diet.

For decades, the medical community believed that the gluten-free diet was an adequate disease management strategy, and research into treatments and a cure was not the priority it should be. However, thanks to a sustained strategy of patient engagement, we have proven that adherence to a gluten-free diet can be challenging and costly, and that millions of people with celiac disease still experience debilitating disease symptoms while on the diet. Through education initiatives and the work of our dedicated patient advocates, we have helped establish the clear need for research funding for diagnosis, treatments — and one day, a cure — for celiac disease.

This cause is personal for me. When my son was diagnosed with celiac disease after so many years with debilitating symptoms, it hit me hard. How could I help him? Even though I have had several negative blood tests, I know I carry the gene and could develop it myself at any time. That is why I recently joined a trial, funded by our Foundation, to help researchers develop a potentially revolutionary new screening tool for celiac disease. This tool may eliminate the need for a gluten challenge (where patients ingest the same food that makes them sick) and intestinal biopsy (an invasive procedure to check for intestinal damage). A diagnostic tool like this would be a tremendous leap forward, offering a faster and easier way to diagnose celiac disease for millions.

The Foundation is committed to leveraging all available resources to drive the development of therapeutic alternatives to the gluten-free diet. Community participation is vital, and there are many ways to get involved.

• Contribute to research studies and clinical trials: This is a crucial way to help scientists better understand celiac disease and ultimately find a cure. We support patients in learning which studies and trials are currently recruiting, and our iCureCeliac® Patient Registry helps identify qualified candidates for enrollment.
• Make your voice heard: Despite the millions who suffer, celiac disease has largely been ignored by federal research funding. You can effectively push for change by completing our free online Policy Advocate Training Program. All you need is your voice, your passion, and a commitment to making a difference.
• Learn from experts: The Foundation offers free virtual education events for all audiences. Expand your gluten-free nutritional knowledge through Culinary Medicine webinars or learn about best practices for a celiac disease 504 plan with our online School Support Sessions. Connect with the patient and caregiver community through monthly Celiac Teen Talks for ages 13-17 and Living with Celiac Virtual Meetups for all ages.
• Apply for research funding: If you are a researcher or medical student, learn about the many funding opportunities the Foundation offers to health care providers who are advancing the field of celiac disease research.
• Show your support: Engage by organizing a do-it-yourself (DIY) fundraiser through Team Gluten-Free®, our community fundraising program that lets athletes and non-athletes raise awareness and funds for the Foundation’s programs for research, education, and advocacy.

Throughout May — and all year long — we are thankful for the community’s support. Join us as we raise our voices and amplify the conversation around the need for celiac disease treatments and a cure. Together, we can make a real difference for millions living with celiac disease.

About the Celiac Disease Foundation
The Celiac Disease Foundation, established in 1990, is a leading global patient advocacy organization committed to accelerating diagnosis, treatments, and a cure for celiac disease. Our mission is to improve the health and well-being of the millions of individuals around the world affected by this genetic autoimmune disease through our strategic investments in research, advocacy, and education. Our iCureCeliac® Patient Registry and extensive patient recruitment services at iRecruitCeliac.org enable us to identify qualified patient candidates and speed their enrollment to advance critical disease research. Our unparalleled advocacy program has led the way to secure federal recognition and first-ever research funding from agencies including the U.S. National Institutes of Health and the Department of Defense. We adhere to the highest scientific and ethical standards as we work each day to promote understanding of celiac disease, empower our patient and provider community, and collaborate with partners and stakeholders to carry our mission forward.

The Celiac Disease Foundation is a member of the National Health Council. For more information on NHC membership, please email membership@nhcouncil.org