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Letter from Alice: Finding Strength in Community
Getting a life-changing diagnosis can make a person feel isolated and scared. One thing that helps is hearing from others who have been there before; hearing about their symptoms and their journey to diagnosis; getting their tips and tricks for navigating life post-diagnosis; and, of course, just being around people who get it.
I was diagnosed with celiac disease in the ‘90s, after seeing 23 doctors and fearing the worst. Like many others, my doctor only told me to go gluten-free before sending me on my way. Thank goodness I was able to connect with others who had celiac disease through a support group; I truly believe that group was one of the only reasons I was able to recover and become healthy again. They listened to my concerns, educated me on the basics of the gluten-free diet, shared binders of research about food brands that were safe for those with celiac disease, shared recipes and cooking and baking tips and submitted group orders for gluten-free food from companies in Canada—it wasn’t available in the United States back then.
Once I, too, became an expert, I was able to do the same for others. Soon I went from support group attendee to support group leader, and eventually I established Beyond Celiac (then called National Foundation for Celiac Awareness) to drive diagnosis and raise awareness, but also to support others like me, who needed guidance post-diagnosis. Together, we educated doctors, trained foodservice professionals, and successfully made gluten-free food (and beer!) mainstream. It was unreal to walk into my local grocery store and finally find gluten-free food.
Since then, Beyond Celiac has taken on an even bigger challenge: accelerating research for treatments and a cure. Unfortunately, the gluten-free diet just isn’t enough for many with celiac disease. But the one thing that hasn’t changed? People still need community.
Today, although we have improved understanding in the medical community, more options for dining out and gluten-free food on grocery store shelves, I still hear from people that what they find most comforting is talking to other people with celiac disease. Being around people to whom they don’t have to explain why they have to be so careful about every bite of food that goes into their mouths, about the challenges around navigating the holidays, socializing, dining out and traveling.
If you’re craving community, I encourage you to attend our Community Summit, an in-person event happening this September 30th in Greenwich, Connecticut. We’ll gather to hear from experts, play games, enjoy gluten-free food, and, of course, meet others with celiac disease. This fall we will also have two in-person Step Beyond Celiac 5Ks, one in Philadelphia and one in Boston. Barring all that, you can always chat with us and others virtually on our social channels. We are undoubtedly stronger together; together we can help each other live life to the fullest.
Together for a cure,
—Alice Bast
