People with celiac disease wait far too long to receive an accurate diagnosis. With 83% of people remaining undiagnosed or misdiagnosed, Beyond Celiac deploys specific strategies to get more people their life-saving diagnosis.
Family Talk: Educating and Testing At-Risk Biological Relatives
Targeting people who are genetically at-risk for celiac disease is one of the best ways to effectively drive diagnosis according to celiac disease experts. That’s why, in 2012, Beyond Celiac collaborated with the Celiac Center at Beth Israel Deaconess Medical Center and Emerson College to figure out why at-risk relatives tend to be resistant to getting tested for celiac disease. What we found was that it was just a matter of asking - relatives do want their diagnosed family members to talk to them about their risk and how to get tested.
As a result of this knowledge, Beyond Celiac developed Family Talk, a series of tools for people diagnosed with celiac disease to talk with their family members about testing. These tools included webpages, downloadable tools and a print brochure, reaching nearly 451,000 people in its first year.
In 2014, Beyond Celiac learned that Family Talk resources helped more than 1,600 at-risk relatives get tested and of those, 130 people were diagnosed. Despite this initial success, Beyond Celiac continued to learn that our diagnosed community was still having trouble encouraging their family to get tested.
To truly stimulate the short-term and long-term results needed to drive diagnosis, Beyond Celiac conducted another research project with the goal to develop new tools for our community.
In 2015, Beyond Celiac expanded this program and launched the nation’s first family testing campaign aimed at educating people diagnosed with celiac disease on the best way to talk to their biological relatives about their risk. This campaign, Seriously, Celiac Disease: Talk. Tell. Test., provides resources that are based on Beyond Celiac research which identified barriers and solutions to family testing. In its first seven months, the video has been viewed more than 23,000 times and social media posts promoting family testing have reached over 530,000 people. 95% of those untested family members surveyed after using Beyond Celiac resources say they are likely to get tested.
Click here for a timeline of our work in family test/about/programs/family-testing/ing.