May is the launch of Seriously, Celiac Disease, a campaign that encourages the importance of getting tested for celiac disease and having conversations with family members about this hereditary condition. We chatted with Alice Bast, president and CEO of the NFCA, about how to spread the word.
"I really started this foundation (National Foundation for Celiac Awareness) to ensure that our community had earlier diagnosis and that our voices could be heard. We seek a future where tomorrow’s patients don’t have to face the challenges of today," says Alice Bast, president and CEO of the NFCA.
Celiac disease is a serious genetic autoimmune disease that presents its symptoms in hundreds of different ways. The disease damages the villi of the small intestine and interferes with absorption of nutrients from food. Essentially, the body is attacking itself every time a person with celiac consumes gluten, the NFCA notes. About 1% of the population is affected, across gender and race. While 83% of Americans are undiagnosed or misdiagnosed, celiac disease can lead to other disorders, including infertility, reduced bone density, neurological disorders, some cancers, and other autoimmune diseases.
When Bast was first diagnosed, there were support groups around the country, but there was a lack of a coordinated campaign for raising awareness and advancing research. With a background in marketing and business development in the healthcare industry, she applied for and received a grant from the National Institute of Health to kick off the foundation. That was 12 years ago.
The NFCA went to apply for a second grant from the Department of Health and Human Services but were told they couldn’t receive the funding for awareness. They first needed to make sure that the community had access and availability of celiac-friendly food.
"If you can envision 12 years ago, gluten-free food … were there packaged products on the shelf? Was it available? Affordable?" she asks. It was about supply and demand at the time.
So the NFCA put on these events around the country where doctors and chefs partnered together for “Gluten-Free Cooking Sprees.” They provided tactile experiences for chefs and doctors, ultimately showing communities that it's all about the cooking. "Food is our treatment," Bast notes. "But the secret sauce was bringing in grocery stores."
Starting with Whole Foods at the NFCA's home base in Austin, they then went to Wegman’s and even Wal-Mart. In 2010, Bast received the Philadelphia Award for making the biggest change in the city of Philadelphia, because they successfully got Wal-Mart to take on gluten-free items. "Once Wal-Mart got into it, Target joined. It’s food distribution across the country," she says.
About ten years ago, they realized that the overuse of the term "gluten-free" started to undermine the disease concept.
In order to give the campaign a more focused approach, the NFCA decided on "Seriously, Celiac Disease" with the motto of Talk, Tell, Test. "Talk with your family to make them aware that celiac is genetic, along with an emphasis on getting screened. Tell them it's an autoimmune disease, and it is different from a food allergy. Explain that the immune system is attacking healthy cells. Then, urge them to get a simple blood Test."
*It's important to note that you must have gluten in your diet for the test to be accurate.
When Bast started the foundation, 97% of the community was still undiagnosed. Now, it's at 83%.
"Speak up, and advocate for yourself," she says. "Please have the conversation; don't just spread it through social media. It requires caring and concern."
Find out more here, and join the discussion.
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