2015 Year in Review
For far too long, celiac disease has been relegated to the margins of America’s $3 trillion healthcare industry. As a consequence, millions of Americans who have this serious autoimmune disease are suffering needlessly today. Quite likely, there are undiagnosed celiac disease sufferers right here in your neighborhood, living in agony from the cramping, constipation, bloating, diarrhea, anxiety, fatigue, depression, brain fog, joint pain, and countless other symptoms associated with celiac disease and gluten sensitivity.
How do we know this? The math is actually quite simple. Researchers estimate that three million Americans have celiac disease, or slightly less than 1% of the population. That is approximately the number of Americans with Parkinson’s disease, multiple sclerosis, muscular dystrophy, lymphoma, leukemia, and myeloma combined. Yet, despite the surge in interest around the gluten-free diet, only one in six of those with the disease has been correctly diagnosed.
In 2015, Celiac Disease Foundation (CDF) focused our efforts on changing this persistent ignorance about celiac disease that continues to threaten the well-being – both short- and long-term – of millions of Americans. As we did in 2004 by achieving federal recognition of celiac disease through the National Institutes of Health (NIH) Consensus Development Conference, we took our arguments, our data, and our passion about ending the needless suffering caused by celiac disease to the heart of the American massive medical enterprise, Washington, D.C., the home of the NIH, the Food and Drug Administration (FDA), and the U.S. Department of Health and Human Services (HHS).
Additionally, in 2015, we focused our efforts on supporting the small, but exceptionally talented, celiac disease research community that is seeking to answer the difficult questions that continue to surround this disease. Specifically, what are the long-term implications of celiac disease? Why are there no approved drug therapies to mitigate disease impact? And, more importantly, why is there no cure?
In February 2015, CDF funded and sat on the Steering Committee that organized the first-ever FDA meeting on celiac disease. The FDA Gastroenterology Regulatory Endpoints and Advancement of Therapeutics (GREAT3) Workshop served to formalize the discussion of therapeutic treatments for celiac disease. This landmark conference addressed endpoints and outcome measurements for clinical trials for products intended to treat celiac disease. In April 2015, in preparation for the FDA’s Gastrointestinal Disorders Patient-Focused Drug Development Workshop, the second-ever FDA meeting addressing celiac disease, CDF surveyed our community. Over 1,000 individuals responded in just two days. The results of the survey were illuminating, and deeply disturbing. They were not, however, a surprise to anyone with celiac disease or who cares for someone with the disease.
- 45% reported it took five years or more after symptoms presented to receive their diagnosis of celiac disease. Only 21% were diagnosed in the first year. Note that this reflects the population fortunate enough to receive a correct diagnosis.
- 21 different symptoms were reported by our respondents as having a significant impact on their life. 50% cited abdominal pain, and slightly less than that cited fatigue. Chronic diarrhea and bloating ranked high, as did brain fog for more than 27%, and depression or anxiety for more than 25%.
- Even though 85% report that their symptoms have improved since adopting a gluten-free diet, 54% report that there are specific activities that are important to them that they cannot do because of the disease.
- More than 60% report that the high cost of gluten-free foods is a financial burden.
- Almost 70% report that symptoms last three days or longer after exposure to gluten. More than 8% report that symptoms last 14 days or more.
- 40% report missing school/work days due to symptoms.
It is evident that adherence to a strict gluten-free diet helps our community survive, but that therapies are needed to test and treat accidental exposure and to treat celiac disease that is not mitigated by the gluten-free diet. In addition to the FDA Workshops focusing on the drug development pipeline, we were invited to meet with Dr. Susan Mayne, Director of the Center for Food Safety and Applied Nutrition, to address the gluten-free food labeling needs of the celiac disease community. We have committed to providing Dr. Mayne’s office with patient-reported data regarding the efficacy and impact of the FDA gluten-free labeling rule and its communication through our national celiac disease patient registry tool.
CDF met with the White House on their Precision Medicine Initiative, and later with NIH on the same program. We are driving the effort with Congressman Tim Ryan’s (D-OH) Washington, D.C. staff to strategize support of H.R. 3648: Gluten in Medicine Disclosure Act, which aims to require that medication labels identify any gluten-containing ingredient.
Education and support
CDF remains dedicated to providing the public with innovative tools and technologies in the promotion of celiac disease education. This year, CDF was proud to add another resource to our array of online tools for patients and consumers on celiac.org. Complementing the Symptoms Checklist, Healthcare Practitioner Directory, and 7-Day Gluten-Free Meal Plan, CDF launched the Gluten-Free Allergy-Free Marketplace, an online destination hosted on celiac.org, also available as an app for iPhone and Android. Featured at celiac.org/marketplace, the Marketplace showcases products and services from companies that care about the gluten-free and allergy-free community, and have made a deep commitment to supporting CDF’s mission of diagnosis, treatment, and a cure for celiac disease.
National Conference & Gluten-Free EXPO
This past May, Celiac Disease Foundation hosted its National Education Conference & Gluten-Free EXPO at the Pasadena Convention Center, with more than 3,000 people in attendance. This is the largest gathering of its kind in the United States for patients, family members, and the public to receive credible information about celiac disease and other gluten-related disorders, and to sample the latest and best in gluten-free products. Attendees of the National Conference were rewarded with presentations from members of CDF’s Medical Advisory Board, including: Joseph Murray, MD, Sheila Crowe, MD, and Shelley Case, BSc, RD. The National Conference included an educational nutrition and dietetic panel, moderated by Shelley Case, BSc, RD, featuring Anne Lee, EdD, RD, LD, Director of Nutritional Services, Dr. Schar USA, Inc., and Yang Pan, MD, PhD, Principal Scientist, PepsiCo. This year’s event also included a 25th Anniversary GALA Dinner, honoring CDF’s Founder, Elaine Monarch.
Chapters & Support Groups
Through its Chapters and Support Groups, CDF provided education and support to more than 60,000 individuals with celiac disease and other gluten-related disorders, and trained more than 5,000 school health personnel in recognizing pediatric celiac disease through the CDF SoCal Chapter School Nurse Awareness Program (SNAP). CDF also provided direct education and support to tens of thousands of people through our monthly INBRIEF eNewsletter and quarterly INSIGHT print magazine.
CDF continued our vigorous outreach efforts to increase public understanding of celiac disease through national public awareness campaigns, speaking engagements, media appearances, and online and social marketing. Some of our accomplishments include:
Thanks to research, we have learned more about celiac disease in the last three years than we learned in the previous 50. For example, we now know that the prevalence of celiac disease is doubling approximately every 15-20 years in the population. This is a stunning rate of growth. Unfortunately, we don’t know why. We have also learned that celiac disease has significant comorbidities with a number of other diseases. And while there is evidence, for example, that undiagnosed celiac disease in young children has a direct link to type 1 diabetes, we don’t understand why. These are the reasons we continue to invest in research:
- In the first national effort to systematically address the emotional and psychological issues of young people with celiac disease and other gluten-related disorders, CDF and Children’s National Health System (Children’s National) have launched a partnership to expand mental health education around this specific issue, and to empower healthcare providers to effectively diagnose and treat celiac disease. Children’s National is based in Washington, D.C., and is recognized as one of the nation’s top pediatric teaching hospitals by U.S. News & World Report. The partnership is funded by a generous endowment from the Resnick Family, longtime CDF supporters.
- The relative paucity of research funding from both federal and private sources for celiac disease is leading to another issue: a dearth of young researchers entering the field. To help maintain a critical pipeline of young talent into celiac disease research, through the North American Society for the Study of Celiac Disease (NASSCD), CDF is funding a three-year professional development grant to fellows in the U.S. pursuing a career in celiac disease research.
- Structured and monitored tracking of celiac disease patients and their families, as well as of individuals who have genetic markers for celiac disease but no disease presence, will both speed the development of therapeutic treatments for disease and help chart comorbidities and long-term disease impact. CDF has partnered with a dozen other disease advocacy organizations and the Patient Centered Outcomes Research Institute (PCORI) to build the Unified Celiac Disease Registry to improve medical research.
In 2016 and beyond, we will focus on further PCORI efforts, including patient recruitment for the Unified Celiac Disease Registry, so that clinical research can happen faster, more efficiently, and less expensively than is possible now. We will continue to work with the NIH, FDA and Congress to elevate celiac disease on the nation’s healthcare agenda. Through celiac.org, we will add to our innovative digital tools for screening, diagnosis, and treatment. In addition to offering comprehensive resources, we also look forward to hosting our 2016 National Conference & Gluten-Free EXPO in partnership with Children’s National Health System and UCLA and USC Medical Centers, our Ask-the-Dietitian and Team Gluten-Free programs, and more.
2015 was an amazing year for CDF Team Gluten-Free! TGF members from across the country hosted and participated in over 100 events. Celiac Disease Foundation knows how hard our CDF Team Gluten-Free members work to raise funds and increase awareness of celiac disease, and we are so grateful to have them as part of the CDF family. Looking back at this year, we want to acknowledge some of our TGF members who have really inspired us this year.
Micah Martin’s six year old daughter’s diagnosis of celiac disease inspired him to take action. This year, Micah set out to complete the “Double Trifecta” with Spartan Race for Team Gluten-Free. Micah competed in six races across California while raising awareness for celiac disease, including the “Charity Challenge” Spartan Race this October which allows athletes to “Race for a Reason” and represent their charity. Micah led a team of six elite athletes to compete on behalf of Team Gluten-Free!
“Keeping her healthy is a daily struggle, but with the help of CDF, we are finding more ways to keep her healthy and living gluten-free.” – Micah
Julien Solomita co-hosted two Team Gluten-Free Meetups this year. A YouTube Vlogger with over 600,000 subscribers, Julien was determined to use his popularity to help increase awareness of celiac disease – a disease close to his heart after being diagnosed at age 15. Over 350 people have joined us for our Celiac Disease Awareness Meetups with Julien to meet their favorite YouTube personality, enjoy gluten-free food, and learn more about celiac disease. It is through events like these that Team Gluten-Free is helping fulfill the mission and purpose of CDF.
“CDF was my very first connection to gluten-free living. They taught us how to survive the gluten-unfriendly world of eight years ago.” – Julien’s Mother, Lisa
Adrienne Bender hosted many Team Gluten-Free events this year, including a benefit dinner at Eno Terra Restaurant in March, and a TGF workout class at The Max New Jersey in October. Adrienne partnered for the second year in a row with Chloe + Isabel, an online jewelry boutique. Twenty percent of the proceeds using a special benefit link went back to CDF Team Gluten-Free this fall. Adrienne will be hosting her final TGF event of the year this December when she partners with the New Jersey Devils to hold a Celiac Disease Awareness Hockey Night!
“Fundraising helps our son feel like a part of a community, rather than being ostracized because he can’t eat the same things his friends do.” – Adrienne
Be a part of the team dedicated to creating a world without celiac disease! Team Gluten-Free is CDF’s community fundraising program that provides a simple way for athletes and non-athletes alike to get involved and raise awareness and funds for Celiac Disease Foundation’s programs for advocacy, education, and advancing research. Fundraising efforts may include any event – from marathons to bake sales, movie nights to wedding favors – any way that you can have fun while raising funds. The possibilities are endless.
We are grateful to have such amazing CDF Team Gluten-Free members. Next year is YOUR chance to join! Visit the TGF page to learn about other events and to find out how you can get involved.