As we near the end of May, I would like to propose a toast to those celebrating Celiac Awareness Month. Of course, the toast will be tiny, prepared in a separate toaster and cost $9 a loaf. That is the reality for an estimated 1 of 133 Americans with celiac disease. For sufferers, gluten, a protein found in wheat, rye and barley, triggers the small intestine to react hostilely. For bodies like mine, a bagel, or even a bagel crumb, can inspire a full-out war.
Celiac disease is classified as both a digestive and an autoimmune disorder. As far as autoimmune diseases go, its treatment is more straightforward than most. The only treatment is a gluten-free diet. No cheat days. After diagnosis by blood or endoscopy, there’s no grabbing a beer after work, no “Mom’s famous chicken noodle soup” when you’re sick, no free chocolate cake when someone tells the waiter it’s your birthday. It’s often coupled with other autoimmune diseases like Hashimoto’s thyroiditis and type 1 diabetes, but celiac disease is unique in its ability to upend your social life.
So many of our holidays and traditions have been designed with grain on the brain: s’mores around the campfire. Hot dogs at the ball game. Building and devouring gingerbread houses. Rather than waste money and risk disappointment on replacements for those glutenous goodies, you can support the celiac in your life by reducing the focus on food when you’re together. Flex your creative muscles. There’s a wide world beyond those fields of grain! If you’re not the creative type, let the celiac or their online support group lead the way. I’ll bet they have a few more exciting ideas than watching everyone else eat Christmas cookies.
Since my 2017 diagnosis, my family has worked to cultivate a celebratory atmosphere without food. We have added board games, movie marathons and a rowdy game involving Saran Wrap and dice to our repertoire. We’ve eaten tater tot casserole on Thanksgiving—it’s something delicious to eat in the place of traditional holiday sides. I feel more comfortable, and in building these new traditions, my family has gotten much closer and is having much more fun than we would be just sitting around the table.
Also, please be aware: celiac sufferers are often unfairly labeled as difficult. When a celiac rejects an offer to eat out or share a dip that’s been contaminated with regular pretzels, we’re not being rude or high maintenance, we’re just trying to hoard our sick days. On the rare occasions that I eat food prepared outside my home, it’s with the guidance of the Find Me Gluten Free app, an understanding waitstaff and a level of menu study akin to SAT prep.
If you’re hosting a celiac or otherwise gluten-intolerant individual in your home, don’t be surprised if we decline your gluten-free baked good. We appreciate the thought, but the kindest thing you can do is offer us packaged goods and not roll your eyes when we ask to read the label. I’m not naming names here but know if you’re the partner of a celiac suffer, you need to order that birthday cake in advance. (Right, Andrew?)
It is easy to frame celiac disease as being “without,” but my restrictions have led me to be more resourceful, more confident in my friendships, and to take better care of myself than ever. As annoying as it may be to stuff my purse with emergency snacks and microwave leftovers while my coworkers dine out, my diagnosis has saved me nights of pain, vitamin deficiencies and cut my cancer risk. That’s something worth celebrating!
Since my diagnosis, “treat yourself” has evolved from cookies and cake to bubble baths and casino trips and long phone calls with my sister. Fritos and White Claws are gluten-free, so I wouldn’t go so far as to call myself healthy, but I have found more satisfying ways to feed myself. There are times where I miss the ease of eating on the road or at a party, but am so grateful for this diagnosis and the path to healing.
A gluten-free lifestyle isn’t always easy, but it has been a blessing to discover the people in my life who are willing to be creative, flexible, and, occasionally, join me on a three-hour road trip to some far-flung bakery I read about when I have a cheesecake craving.