Subscribe
Letter from Alice: What do Americans think about celiac disease and the gluten-free diet?
Celiac Awareness Month may be over, but the job of helping people understand celiac disease continues as always at Beyond Celiac. Last year, to gain a better understanding of the knowledge that Americans have about celiac disease, Beyond Celiac commissioned The Harris Poll to conduct a national benchmarking survey. From that survey, we learned that only half of Americans (50%) report knowing anything about celiac disease and/or gluten sensitivity, and nearly two-thirds (61%) of Americans are “not at all sure” about conditions that untreated celiac disease can lead to, such as depression and anxiety; anemia; brain fog and migraines; infertility; some types of cancer; osteoporosis or osteopenia; and delayed growth in children.
This year, we created a new Harris Poll survey (full report coming soon!) and uncovered additional alarming statistics. For instance, only 40% of Americans know that left undiagnosed or unmanaged, celiac disease could lead over time to a range of life-threatening medical conditions, and 28% believe people who eat gluten-free are just trying to get attention! Celiac disease has come a long way in terms of awareness since I founded this organization in 2003, but we still have a ways to go to achieve our vision—a world in which people with celiac disease can live healthy lives, free from social stigma and fear of gluten exposure—a world Beyond Celiac.
The good news is that we truly are making progress: very few people 20 years ago had any awareness of celiac disease, gluten was unheard of, and gluten-free foods were impossible to find. Those lucky enough to get a diagnosis often felt alone in the world. Due to your support, the Beyond Celiac staff have helped change the landscape over the last two decades, and because of their hard work, including these important Harris Poll surveys, they have recently been recognized for their outstanding efforts in spreading knowledge about celiac disease! The Communications team received the Nonprofit/Government Communications Team of the Year award in the prestigious Ragan & PR Daily’s Communicator of the Year Awards. In the realm of healthcare communication, few accomplishments are as commendable as effectively raising awareness about a widely misunderstood disease. The Ragan award recognizes that Beyond Celiac is doing this job at an unmatched level.
So while we may feel shocked that so many Americans still misunderstand celiac disease, let’s take heart that more people are being diagnosed than ever before; gluten-free foods are now found in grocery stores around the world; and there are even dedicated gluten-free restaurants and bakeries across the US. Thanks to your participation in our social media channels, we are 200K strong and growing as more and more people become aware of and diagnosed with celiac disease. The journey to spread awareness and understanding of celiac disease and the gluten-free diet in America has been challenging, but progress is undeniably being made.
As we strive for a world where individuals with celiac disease can lead healthy lives without social stigma or fear, let us remember the progress made and remain committed to creating a future beyond celiac disease. We invite you to continue living every month like Celiac Awareness Month. Together, we can make a difference and ensure a brighter, more inclusive tomorrow for all.
Together for a cure,
—Alice Bast
