Living With Celiac Disease - Interview With NCFA's Alice Bastby Jessica Mencos
What if foods you love and eat every day were depriving your body of vital nutrients? Headaches, diarrhea, bloating and constipation that prevented you from functioning at work, going out with friends and living your life.
According to a story by ABC News, it was just a few decades ago that seeing a patient with Celiac disease was like seeing a unicorn. But today, Celiac disease and its symptoms (all three hundred plus of them) are very real.
What is Celiac Disease?
After twenty-two doctors and eight years of trying to make sense of her symptoms, it took a family friend's veterinary instinct to get Alice Bast, founder of the National Foundation for Celiac Awareness (NFCA), to take a blood test for Celiac disease.The frustration that had accumulated for eight years and the relief of being diagnosed ignited a passion in Bast to help the estimated three million Americans with Celiac disease receive prompt and accurate diagnosis.
Celiac disease is an autoimmune disease that afflicts about one in every one hundred thirty-three Americans. Yet, an estimated ninety-five percent of people who have the disease are either undiagnosed or misdiagnosed. To get the right diagnosis, a blood test is performed followed by an endoscopy where a biopsy is conducted on the small intestine.
“National groups were already in place that supported the disease, but no one was actively raising awareness of the disease itself," Bast said. "With this awareness, we can lead ourselves to a better quality of life. In order for large food companies to take an interest in changing products to gluten-free, a large group of consumers need to know they have it."
"My motto is that no one should have to suffer needlessly; awareness is the solution to this problem and having a gluten-free diet. I am also driven to raise awareness when I hear stories about women who say they couldn’t have kids, these women may have had a chance to become fertile had they been diagnosed earlier.”
Living with Celiac Disease
We're on a precipice of a new movement - a gluten-free one. Like vegetarianism and veganism before it, the gluten-free lifestyle is full of challenges. Unlike these two movements, however, being gluten-free isn't always a lifestyle by choice. For someone with Celiac disease, being gluten-free can be a matter of survival, as the disease flattens intestines and increases the chances of lymphoma and cancer. And since people with Celiac disease don't live on a deserted tropical island filled without gluten-free items, Bast's work of raising awareness and getting food manufacturers to listen is more crucial than ever.
For Bast, the most difficult times for families to deal with Celiac disease is when children go to their lunch cafeteria and when young adults go off to college - mostly because of the lack of knowledge. Fortunately, some companies are noticing and making gluten-free products. Post’s Pebbles Cereals and Treats are rice-based, gluten-free and a hit with younger children (and adults alike). Mother Nature is also very generous in her abundance of one hundred percent gluten-free fruits, vegetables and meats.
And parents can still indulge children with Celiac disease; for those with a sweet tooth, Peter Bronski, an NFCA Athlete for Awareness, recently launched a new cookbook entitled, “Artisanal Gluten-Free Cupcakes.” There's plenty of recipes and inspiration in Eating Well Magazine and Gluten-Free Living. Being your child's gluten-free buddy or finding one for them can also help the transition. CeliacCentral.org has a ton of resources, from holiday shopping tips to a downloadable “Getting Started” guide on the website to help families
“Keep in mind that your child is not alone and can live a normal life. It’s not necessary to give up your favorite snacks since large food companies now make it affordable and available to purchase gluten-free products. Keeping a snack handy for that child in your purse or glove compartment, something like a Post Pebbles Treat, will create less anxiety for that child if they end up in a situation where they’re on-the-go and hungry.”
Want to Get Involved with NFCA?
There a lot of ways to get involved with the NFCA. Bast offers a few suggestions: "You can host gluten-free “Cupcake” parties at your apartment, and volunteer to submit personal recipes and stories. You can also reach out to us on the website to help us in ensuring that local schools and communities become trained on gluten-free protocol."