Health and wellness touch each of us differently. This is one person’s story.
My husband and I recently went to a Greek restaurant for a celebratory dinner. Because I have celiac disease, I can’t eat gluten, so we asked the server to check whether the flaming saganaki cheese was coated with flour, as it sometimes is.
We watched carefully as the server walked into the kitchen and asked the chef. He returned and, smiling, said it was safe to eat.
It wasn’t. I felt sick about 30 minutes into our meal.
I don’t resent having celiac disease or having to eat gluten-free food. I’ve done it for so long I don’t even remember what food with gluten tastes like. But I do resent having a disease that often prevents me from having carefree, spontaneous meals with my loved ones.
Eating is never carefree for me. Instead, it’s a stressful activity that consumes more mental energy than it should. Quite honestly, it’s exhausting.
Relaxing when I’m trying new restaurants is nearly impossible, as the risk for getting glutened —accidently served gluten — increases with the prevalence of non-celiac people who eat gluten-free as a preference.
I worry that people don’t understand the nuances of having celiac disease, like the risk of cross-contamination when gluten-free food is prepared on the same surface as gluten.
At a party, I met someone who’d never heard of the disease. Her jaw dropped. “So, you constantly have to be thinking about what you’ll eat?”
Her question reminded me of something Dr. Alessio Fasano, a pediatric gastroenterologist at Massachusetts General Hospital and one of the leading celiac experts in the world, recently said on the “Freakonomics” podcast. He explained that for people with celiac disease, “eating becomes a challenging mental exercise instead of a spontaneous activity.”
When I was 15, I traveled to Guanajuato, Mexico, for six weeks. Upon returning, I was terribly sick, with a series of concerning symptoms: severe anemia, constant diarrhea, and never-ending drowsiness.
My doctors initially assumed I ‘d picked up a virus or parasite in Mexico. Six months and a series of tests later, they finally discovered I had celiac disease, an autoimmune disease in which your body rejects gluten, a protein found in wheat, barley, malt, and rye.
The true culprit behind my illness wasn’t a parasite, but rather eating 10 flour tortillas a day.
Celiac disease affects 1 in 141 Americans, or around 3 million people. But many of these people — myself and my twin brother included — go undiagnosed for many years. In fact, it takes around four years for someone with celiac to be diagnosed.
My diagnosis came not only during a formative time in my life (who wants to stick out from the masses when they’re 15?), but also in an era where nobody had ever heard the term gluten-free.
I couldn’t grab burgers with my friends or share a mouthwatering chocolate birthday cake someone brought to school. The more I politely declined food and asked about ingredients, the more I worried I stood out.
This simultaneous fear of nonconformity, constant need to check what I ate, and incessant concern over accidentally being glutened caused a form of anxiety that has stuck with me into adulthood.
As long as you eat strictly gluten-free, celiac is fairly easy to manage. It’s simple: If you maintain your diet, you won’t have any symptoms.
It could be much, much worse, I always tell myself during times of frustration.
Only recently have I begun to trace the constant, low-level anxiety I live with back to celiac.
I have generalized anxiety disorder (GAD), something I’ve grappled with since my late teens.
Until recently, I never made the connection between celiac and anxiety. But once I did, it made perfect sense. Though most of my anxiety comes from other sources, I believe a small yet significant portion comes from celiac.
Researchers have even found that there is a significantly higher prevalence of anxiety in children with food allergies.
Despite the fact that I, luckily, have fairly minimal symptoms when I’m accidentally glutened — diarrhea, bloating, mind fog, and drowsiness — the effects of eating gluten are still damaging.
If someone with celiac disease eats gluten just once, the intestinal wall can take months to heal. And repeated glutening can lead to serious conditions like osteoporosis, infertility, and cancer.
My anxiety stems from the fear of developing these long-term conditions, and it manifests in my day-to-day actions. Asking a million questions when ordering a meal — Is the chicken made on the same grill as bread? Does the steak marinade have soy sauce? — leaves me embarrassed if I’m eating out with people who aren’t close family and friends.
And even after I’ve been told an item is gluten-free, I sometimes still worry it isn’t. I always double check that what the server brought me is gluten-free, and even ask my husband to take a bite before I do.
This anxiety, while sometimes irrational, isn’t entirely unfounded. I’ve been told food was gluten-free when it wasn’t numerous times.
I often feel that this hyper vigilance makes it harder for me to find in joy in food like many people do. I rarely get excited about indulging in special treats because I often think, this is too good to be true. Is this really gluten-free?
Another more pervasive behavior derived from having celiac is the constant need to be thinking about when I can eat. Will there be something I can eat at the airport later? Will the wedding I’m going to have gluten-free options? Should I bring my own food to the work potluck, or just eat some salad?
The best way to circumvent my celiac-related anxiety is simply through preparation. I never show up to an event or party hungry. I keep protein bars in my purse. I cook many of my meals at home. And unless I’m traveling, I only eat out at restaurants I feel confident are serving me gluten-free food.
As long as I’m prepared, I can usually keep my anxiety at bay.
I also embrace the mindset that having celiac isn’t all bad.
On a recent trip to Costa Rica, my husband and I indulged in a heaping plate of rice, black beans, fried eggs, salad, steak, and plantains, all of which was naturally gluten-free.
We smiled at each other and clinked our glasses at the joy of finding such a delicious gluten-free meal. The best part? It was worry-free, too.
Jamie Friedlander is a freelance writer and editor with a particular interest in health-related content. Her work has appeared in New York Magazine’s The Cut, the Chicago Tribune, Racked, Business Insider, and SUCCESS Magazine. She received her bachelor’s degree from NYU and her master’s degree from the Medill School of Journalism at Northwestern University. When she’s not writing, she can usually be found traveling, drinking copious amounts of green tea, or surfing Etsy. You can see more samples of her work at her website and follow her on social media.