Celiac disease is one of the world’s most prevalent genetic autoimmune diseases. The disease affects between 1 in 100 and 1 in 170 people, whereas the rates vary between different regions of the world. For example, it affects an estimated 3 million Americans, 70–80% of whom are undiagnosed. As celiac disease causes the body to attack its own small intestine, it can lead to many other severe health conditions, including cancer.
For Celiac Disease Awareness Month in May we spoke with Marilyn G. Geller, CEO of the Celiac Disease Foundation, whose focus is trained on three principal areas: medical research, patient and healthcare provider education, and public policy advocacy.
Please tell us more about the three principal areas you focus on.
The only approved treatment for celiac disease is lifelong adherence to a gluten-free diet, but for many, the diet is not enough. Up to 50% of celiac patients report disease symptoms despite adherence to the diet – debilitating symptoms that can result in missed work and school. In addition, patients report that the burden of disease management is second only to end-stage renal disease.
We invest in research, advocacy, and education to accelerate the development of treatments and a cure for celiac disease. Our research investments include direct grants to researchers and building state-of-the-art research tools and support, including recruiting patients for clinical trials and studies, that help researchers do their work faster and at a lower cost. Our advocacy work is focused on securing federal funding for celiac disease research from the National Institutes of Health and other federal agencies. Historically, the federal government has ignored or downplayed celiac disease.
Our education initiatives have multiple objectives:
- Increase diagnostic rates from current estimates of 30%.
- Provide the celiac patient and caregiver community with the latest news and developments, including the opportunity to enroll in clinical trials and studies.
- Assure that healthcare providers are aware of research news and updates to diagnostic and disease management guidelines.
Please let us know more about the iCureCeliac® Patient Registry and iQualifyCeliac.
iCureCeliac® was created in 2016 as the first public patient registry for celiac disease. Patient registries empower patients and caregivers to share with researchers the impacts of living with celiac disease to shape public policy and advance the development of better treatments and a potential cure. iCureCeliac® is a powerful research database, with more than 7,600 participants providing data for numerous peer-reviewed publications and poster presentations, to help us solve celiac disease.
iQualifyCeliac is the Celiac Disease Foundation’s patient recruitment screening platform. Researchers need patients to participate in studies and clinical trials to advance critically needed therapeutic options through the development pipeline. The Celiac Disease Foundation, through iQualifyCeliac, offers robust patient recruitment services, targeting patient candidates to speed enrollment and improve trial retention to drive discoveries that may lead to better treatments, and ultimately, a cure.
The following motto can be found on your website: “Help create a world without celiac disease.” What needs to be done to achieve this goal?
Eliminating celiac disease means finding a cure. Although medical research is difficult to forecast, our experts believe this may be 20 years in the future. The Celiac Disease Foundation is making strategic investments in research and advocacy to bring that day closer. As we move toward this goal, we continue to focus on improving the quality of life for all those affected by celiac disease, which includes supporting research for better diagnostic testing, therapies that mitigate accidental gluten exposure, vaccines that prevent celiac disease either temporarily or permanently, and even funding research into developing wheat varieties with reduced allergenicity.
How important is (early) diagnosis, and what can undiagnosed/untreated celiac disease lead to?
The earlier the diagnosis, the quicker the patient can shift to a gluten-free diet and start the process of healing their intestine and thus improving some or all of the 200+ possible symptoms and long-term effects associated with celiac disease, including failure to thrive, gastrointestinal issues, brain fog, depression, infertility, heart disease, and cancer.
Which role do digital tools and solutions play for patients and family members nowadays (e.g., The Eat! Gluten-Free app)?
Celiac.org, the most visited celiac disease site in the world, provides up-to-date information on celiac disease with an extensive line-up of educational resources and research-driven tools.
- The Symptoms Assessment Tool serves as an entry-point diagnostic tool for millions, providing a physician letter to encourage testing for those at risk for celiac disease.
- The Symptoms Assessment Tool is linked to the Celiac Disease Foundation’s online Healthcare Practitioner Directory, helping patients and caregivers find physicians and dietitians familiar with treating celiac disease in their local area.
- The Eat! Gluten-Free app is the best place to find the latest celiac disease news, as well as gluten-free products, meal plans, and recipes.
- Hundreds of thousands of patients and caregivers access our social media pages to build community and stay updated on the latest developments.
- Our online advocacy training program, found at celiac.org, trains individuals to become Celiac Disease Foundation State Advocacy Ambassadors to help drive policy change and improve the health of those living with celiac disease.
- The host of digital tools developed by the Celiac Disease Foundation provide necessary information about improving disease diagnosis, advancing biomedical research for treatments and a cure, and supporting those who must follow a gluten-free diet.
What are your plans for this year’s Celiac Awareness Month in May?
- Raise It, Give It, Get It: Proud Sponsor King Arthur will be sending baking products and swag for qualifying donations made to the Celiac Disease Foundation between May 1 and May 31.
- Instagram Giveaways: Proud Sponsors of the Celiac Disease Foundation will support the celiac community through Instagram Giveaways allowing entrants the opportunity to win gluten-free prizes, products, and swag from participating brands.
- Shine a Light (May 16): May 16 is International Celiac Disease Awareness Day. We are partnering with celiac disease organizations around the world to celebrate the day with the Shine a Light on Celiac campaign by lighting up landmarks across the globe.
- Celiac Strong Day (May 16): More than 190 schools nationwide will participate in our second annual Celiac Awareness Day. Students are encouraged to wear celiac blue. Each school will receive Celiac Disease Foundation brochures and swag and gluten-free snacks from Proud Sponsors Crunchmaster, Jessica’s Natural Foods, and Snyder’s.
Many thanks for your time and for the interview.