A brief history of the Celiac Disease Foundation
Elaine Monarch was diagnosed with celiac disease in the early 80’s, before blood tests, screening devices, or public awareness about the disease. There was no information readily available for someone who was diagnosed, and only two companies made products that catered specifically to people seeking gluten-free food. This lack of information and infrastructure was what inspired Elaine Monarch to start reaching out. Monarch travelled across the country to meet with the few celiac disease groups in existence. During her visits, she recognized the need for support not only within the community but for herself. She also realized the extent of the need for education and awareness of celiac disease, which at the time was little-known and seldom diagnosed. So, Monarch took action. She put together a flyer, gathered some names, and held a meeting, hoping that people would show up. To her surprise, twenty people made the journey, and for most people in attendance, it was the first time they spoke to another individual with celiac disease.
After several more meetings, it became clear that some bigger changes needed to be made. It was not only the public that lacked education about celiac disease, but medical professionals as well. Monarch decided to expand her support group into an organization to better focus their efforts. In 1990, the group started collecting dues, and Monarch started to run the foundation from her home. She contacted Donald Kasarda, the man who discovered the specific proteins in wheat that were toxic to celiacs, and established the foundation’s first medical, scientific contact. Despite this success, Monarch found it difficult at first to gather funding because of the way the disease manifests itself—the majority of celiac patients do not display outward symptoms, and can for the most part carry on their daily lives. To the rest of the world, many appear healthy.
Things changed dramatically for the foundation when a woman by the name of Jill Gaines contacted Monarch on behalf of her daughter, who was suffering with an undiagnosed illness, and inquired about celiac disease. After that phone call, Jill Gaines wrote a letter, and as a result of that letter, a company granted the Celiac Disease Foundation fifteen thousand dollars. For the first time, the foundation began to grow past the “kitchen table organization” and moved into an office in Studio City. From this point, the foundation’s main focus shifted to awareness. Elaine started asking the question: “why are more people not diagnosed with celiac?”
The process was slow. Fundraising programs were not yet underway, but the phones in that small Studio City office were ringing constantly. The foundation was also functioning to support those few who were newly diagnosed, as well as those who were reaching out on behalf of their children. But Monarch had bigger goals for the foundation, and in 1992, the Celiac Disease Foundation held its first education conference.
At first, the conference did not appear to have generated an increase in awareness of celiac disease, or enthusiasm to work toward diagnosis. It was not until a year later that Elaine discovered that the conference had been the impetus for the discovery of a new blood test to screen for celiac disease.
A major part of the growth of the foundation was the establishment of the Medical Advisory Board, which was driven in part by the desire to raise awareness among the medical community. Doctors were not often considering celiac as a diagnosis, and many individuals were ill with chronic diseases that may have been prevented by the early diagnosis and treatment of celiac disease. Getting the attention of the medical community was difficult without solid statistics to offer up. With the assistance of Dr. Fasano, the foundation helped to collect 10,000 blood samples and was able to compute a number. In 2004, the National Institutes of Health (NIH) held the first ever Celiac Disease Consensus Conference. Monarch served on the Planning Committee and was selected to speak at the Conference. It was this landmark event that put celiac disease “on the map” with the statement that celiac disease affects 1 in 133 people.
The Foundation continued to expand even further with the addition of youth outreach. While celiac disease is not a children’s disease, it is best diagnosed early. The creation of Team Gluten-Free and youth support groups have become a major source of resources, support, and fundraising. Many children with celiac disease can feel left out because of their dietary restrictions. The foundation began running Camp Gluten-Free in 2012 to provide an environment where children with celiac disease can feel normal, have fun, and not have to worry about the food that they eat.
In May 2011, Elaine Monarch retired as Executive Director. In Spring 2012, she accepted a lifetime appointment to the CDF Board of Directors. She continues to be actively involved with CDF, chairing the Celiac Children’s Camp Task Force, and sharing her vision for a better life for those with celiac disease and non-celiac gluten sensitivity.
Today, the CDF network is supported by members and volunteers and continues to raise awareness, advocate for patient concerns, and build a supportive community for patients, families and healthcare professionals. Under the leadership of CEO Marilyn Geller, who accepted the position in 2012, the Celiac Disease Foundation continues to grow and thrive.
- 1990: Elaine Monarch founds/incorporates Celiac Disease Foundation
- 1992: CDF presents first Education Conference
- 1999: CDF presents Serology Workshop – leads to blood test creation
- 2004: CDF participates in NIH Celiac Disease Consensus Conference – determines the definition of Celiac Disease
- 2005: Team Gluten-Free™ founded
- 2006: Blue Diamond Growers – First Sponsor to put CDF logo on pack
- 2006: CDF/ACTF advocacy helps labeling law FALCPA pass
- 2007: Partnered with General Mills to launch the first mainstream gluten free food initiative
- 2009: CDF presents largest national conference ever – 600+ attendees and 75 exhibitors
- 2011: CDF creates PSA for celiac disease awareness
- 2012: April: Marilyn G. Geller becomes Chief Operating Officer; Deborah Ceizler becomes Chief Development Officer; July: 1st Children’s GF Camp in So Cal
- 2013: National Education Conference and GF EXPO