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.
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.
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:
- 6,000,000 unique visitors (and counting) educated annually at celiac.org – a 20% increase from 2014
- Continued #1 Google ranking as the leading source for information about celiac disease
- Doubled email subscribers from 2014
- 50,000+ Facebook likes and 20,000 Twitter followers
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.
2014 Year in Review
Celiac Disease Foundation (CDF) was established in 1990 by Elaine Monarch to support the celiac disease community by funding important advocacy, education, and research initiatives. Today, under the guidance of a national Board of Directors and an internationally renowned Medical Advisory Board, the Foundation has grown to include a nationwide network of Chapters and Support Groups and full-time staff in Woodland Hills, California. From sponsoring the first serology workshop, which led to today’s celiac disease blood test, serving on the planning committee for the landmark 2004 NIH Consensus Development Conference on Celiac Disease, to supporting clinical research, advocating on Capitol Hill for gluten-free labeling laws, partnering with mainstream manufacturers in creating today’s gluten-free marketplace, and offering the number one website for celiac disease, CDF has played a crucial role in improving the lives of those with celiac disease and other gluten-related disorders and their loved ones. As we reflect on this past year, we want to thank you for your generous support, which has enabled us to achieve important advances in each of our key mission areas.
Celiac Disease Foundation’s commitment to both national and local advocacy continued to move forward. Despite the recent cutbacks at the federal level, CDF joined with other autoimmune-related disease groups to advocate for expanded investment in research and education on Capitol Hill, and in state capitols across the country. Congress responded by appropriating increased funding for NIH biomedical research, CDC chronic disease programs, and FDA initiatives. 2014 also saw the implementation of the FDA’s gluten-free labeling rule, and the TTB’s decision to align the labeling of alcohol products with the FDA rule. As the leading voice for people with celiac disease, CDF was instrumental in this effort, rallying its nationwide network of advocates to petition the FDA to make its gluten-free labeling rule a priority.
In order to encourage the public to bring celiac disease to the forefront of the nation’s healthcare agenda, CDF launched an online Advocacy Program. The Advocacy Program provides information, guidance, tools, and resources to push for improvements in celiac disease promotion, early detection, treatment, and research by raising awareness among government leaders, opinion makers, health policymakers, and the general public. Integrated with the American Celiac Disease Alliance (ACDA) platform, it includes a Legislative Action Center for individuals to easily learn about federal and state legislative bills, follow their status, and search for and contact their elected officials.
In 2015, CDF will continue to work with congressional leaders for the labeling of gluten in medication, and through its membership in the National Coalition of Autoimmune Patient Groups, to establish a Congressional Autoimmune Caucus and a National Autoimmune Patient Registry. At the local level, efforts will also continue to assure access to gluten-free lunches for all school-aged children, as well as gluten-free meals for college students. CDF will also serve as a liaison to the FDA’s Watchdog Program to assure that products labeled gluten-free meet the federal standards.
CDF remains dedicated to providing the public with innovative tools and technologies in the promotion of celiac disease education. This year, through our redesigned website, we unveiled a series of online tools to aid in the diagnosis and treatment of celiac disease and other gluten-related disorders. CDF’s Online Education Toolkit includes a Symptoms & Conditions Checklist designed to facilitate communication between patients and their healthcare practitioners; a nationwide Healthcare Practitioner Directory of those specializing in celiac disease and other gluten-related disorders, who can review checklist results to determine a patient care plan; and a 7 Day Gluten-Free Meal Plan to help the newly diagnosed and their families ease the transition to a gluten-free diet. Since inception, more than 300,000 people have used these tools, and this number continues to grow exponentially. CDF also introduced the Ask-the-Dietitian program, which includes resources, tools, and webinar and blog advice on how to live and thrive gluten-free.
National Education Conference & Gluten-Free Expo
This past June, 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. Keynote speakers included world renowned experts, Dr. Alessio Fasano, author of Gluten Freedom, and the founder of Boston’s Center for Celiac Research, and Dr. John Zone, Chairman and Professor of Dermatology at the University of Utah, members of CDF’s Medical Advisory Board. In conjunction with the Conference, Dr. Fasano and Dr. Zone conducted Grand Rounds at Cedars-Sinai and UCLA Medical Centers, educating 300 medical staff and residents on the diagnosis and treatment of celiac disease.
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. At the National office in Los Angeles, CA, CDF staff responded to more than 40,000 email, web, and telephone inquiries from people looking for information and support. CDF also provided direct education and support to tens of thousands of people through its monthly INBRIEF eNewsletter and quarterly INSIGHT print magazine.
CDF continued its 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:
- 4,000,000 visitors (and counting) educated at celiac.org – a 4-fold increase from 2013
- Continued #1 Google Ranking as the leading source for information about celiac disease
- Tripled email subscribers
- Doubled Facebook and Twitter followers
2015 will bring the debut of the CDF Gluten-Free Allergy-Free Marketplace which merges products and services into one source for the convenience of those with restricted diets. The Marketplace will be a one-stop-shop for gluten and allergen-free needs; it will allow consumers to add products to their shopping cart and either print out a shopping list or purchase the items on Amazon with one click. Consumers will also be able to learn about services offered by companies who directly support Celiac Disease Foundation’s mission of timely diagnosis and treatment. The Marketplace is set to debut in early 2015 as an innovative and valuable resource to the gluten-free community.
For CDF’s 25th Anniversary and in conjunction with May Celiac Awareness Month, the National Education Conference & Gluten-Free Expo will again be held in Pasadena, CA. This year’s National Conference will include a special Anniversary Banquet to recognize those who have played a key role in CDF’s growth these past two decades.
Celiac Disease Foundation continues to expand our efforts to improve the quality of life for all people affected by celiac disease and other gluten-related disorders. CDF is the trusted source for evidence-based medical information, with a commitment to providing summaries of scientific and clinical publications in easily comprehensible language. CDF actively supports vital initiatives to aid in the diagnosis and treatment of celiac disease. In 2014, CDF continued its support of research at Olive View-UCLA Medical Center surrounding the incidence of celiac disease in low-income populations, and partnered with Alvine Pharmaceuticals to promote patient recruitment for its CeliAction study, a clinical trial for an oral treatment for celiac disease.
CDF also partnered with Quest Diagnostics in its CeliacAnswers campaign to encourage patients to request and doctors to order celiac disease testing for symptomatic patients and first-degree relatives of those with celiac disease. For May Celiac Awareness Month, CDF joined forces with LabCorp to promote genetic testing and screening for celiac disease through an international campaign. Furthermore, CDF provided a comprehensive didactic seminar at the National Education Conference this past June when Medical Directors from Alvine Pharmaceuticals, Quest Diagnostics, and LabCorp joined together for a biopharma panel to provide a unique and inspiring presentation of information about advances in the screening and treatment of celiac disease.
Celiac Disease Foundation has also been actively involved in the legislative process surrounding screening for celiac disease. This year, the U.S Preventive Services Task Force (USPSTF) was charged with drafting a research plan for the screening of celiac disease. The CDF Medical Advisory Board, together with the National Board of Directors, submitted a letter to USPSTF supporting and upholding the comments made by the North American Society for the Study of Celiac Disease (NASSCD) regarding the Task Force’s draft research plan. Among other commentary, the NASSCD encouraged the USPSTF to focus on high risk individuals (those who are symptomatic, have associated diseases, or a family history) in their research.
Through a special gift from the Simon Family Foundation, CDF has been able to expand CDF Team Gluten-Free, our community-based fundraising program. CDF Team Gluten-Free members help fund CDF’s life-changing programs by racing, walking, hosting events, and supporting others in their community service endeavors. As funds raised doubled those of 2013, it is our pleasure to recognize our top Team members: Christopher Holland, Adrienne Bender, Alex Morris, Kaila Ryan, and Laini Golden.
We thank you for your continued support of and involvement with Celiac Disease Foundation, and with your help and commitment, we look forward to closing the diagnosis gap and assuring that all people with celiac disease and other gluten-related disorders receive the timely treatment that they deserve.