By Alice Bast, CEO, Beyond Celiac
When you’re diagnosed with celiac disease, you’re told to eliminate gluten from your diet. Since gluten is the trigger causing all the trouble, the solution seems simple: cut out the gluten and your symptoms will vanish and you’ll be healthy. Easy, right?
As many people learn when they go on a gluten-free diet, gluten is everywhere.
One mistake can undo my hard work in staying 100% gluten-free. When I do a mistake, I wind up with migraines, tingling and burning in my skin and some serious stomach trouble that lasts for days. So, I am incredibly careful when it comes to avoiding gluten. I focus on natural foods, like fruits, veggies and lean meats. When I do eat something from a package, I scrutinize the label for signs of gluten. There is no gluten in my house. My husband has become a detective right alongside me; together, we make sure nothing that can make me sick comes into the home. When we eat in a restaurant, we pepper the server and chef with questions to make sure my food is safe.
The questioning, wondering, and scrutiny never stops. To be honest, I am exhausted.
Life with celiac disease would be so much easier if I never had to leave my home. But, as the leader of an organization, avoiding restaurants is not an option for me. Lunches, dinners and travel are a must (my suitcase is often packed with more emergency snacks than clothes). And, even if I could, I wouldn’t want to be homebound all the time. Cooking every single meal at home and never going out to eat would be lonely and boring.
I’m not alone in these feelings. I run a non-profit organization called Beyond Celiac, and we’re all about our community. We hear often how hard it is for everyday people to manage the gluten-free diet. Even those who are extremely strict with their diets get sick regularly, just as I do. With only a crumb of gluten more than enough to launch the autoimmune response, it’s easy to be exposed. We polled our community and half of those who responded say they have missed out on a life opportunity because of celiac disease – they’re choosing colleges based on food options, forgoing the job promotion that involves travel, skipping parties and vacations for fear of getting sick.
The very thing that is supposed to free us from our symptoms is the very thing that puts us in handcuffs.
There’s no doubt that the gluten-free diet saved my life. When I was finally diagnosed, my hair was falling out, my teeth were cracking, and I weighed only 105 pounds at 5’9”. Though I was able to restore my health by cutting out gluten, 20 years after diagnosis, I have yet to fully reclaim my freedom.
Until we reach a much-needed cure, I’m seeing the gluten-free diet as it is: a Band-Aid – an incomplete, temporary “solution” for celiac disease.
Alice Bast is the CEO of Beyond Celiac, formerly known as the National Foundation for Celiac Awareness. Beyond Celiac is a non-profit that advances widespread understanding of celiac disease as a serious genetic autoimmune disease and works to secure early diagnosis and effective management. Beyond Celiac empowers the community to live life to the fullest and serves as a leading and trusted resource that inspires hope, accelerates innovation, and forges pathways to a cure.