Celiac disease changed the way I travel, but I’ve found new ways to embrace the journey

My grandma kept an extensive record of the places she went, the people she met, and the sights she saw, but no detail entranced me more than her description of the food. She documented every meal: every bowl of cacio e pepe in Northern Italy; spanakopita in Greece; croque monsieur in the French Alps. I sat there as a child dreaming of one day experiencing the culinary delights of as many different places as I could. As a teenager, I devised fantasy trips dictated by my taste buds. My culinary map would enable me to taste treats at Momofuku bakery in New York, fondue in the Swiss Alps, and paella in Barcelona. I planned to begin travelling as soon as I finished my time swimming at university and once the pandemic had settled.

But mere months before that time was set to arrive, I got a phone call which changed my travel plans entirely. There I was at 21 when my physician called to tell me I had celiac disease. My first reaction was denial. Surely my blood tests must have gotten mixed up in the lab, I protested. Sure, I hadn’t been feeling well for a few months: I had headaches, a rash, and unrelenting exhaustion. But an autoimmune disease? It couldn’t be.

Once I accepted my reality, I came to learn that celiac disease is a chronic autoimmune disease with more than 250 symptoms. When I was diagnosed, I’d been sick for a while. Doctors reassured me that I could live a good life, but I’d have to make some adjustments. Namely, I’d have to cut gluten—even in tiny quantities—entirely.

In following their advice, I did eventually get better, although it took the greater part of a year. Celiacs can have varying levels of sensitivity, but it’s largely agreed upon within medical circles that for all celiacs, any exposure to more than 20ppm of gluten (roughly the amount in a single toast crumb) can cause intestinal damage.

For me, health now comes with a set of protocols. In order to stay safe I don’t consume anything with gluten (or anything made in the same facility as gluten-containing products) where cross-contamination can occur. I don’t eat food prepared on shared surfaces or with shared utensils. I’m unable to eat at restaurants except for those with extremely adept cross-contamination protocols. I generally don’t eat at friends' or family members’ houses where cross-contamination protocols aren’t in place. And, I check my medications, cosmetics, toiletries, hair and skincare products for gluten-containing ingredients before using them.

As you might expect, celiac disease can make even day-to-day tasks feel daunting. I knew that this would only intensify abroad. When I was diagnosed, I understood that my dreams of epic culinary adventures like my grandma’s were over. I feared my dreams of travelling in general would come crashing down too.

Luckily, that didn’t happen. Travel has been a lifelong dream, and I’m a resilient person. I realized that travelling with an autoimmune condition would require some adapting but my diagnosis didn’t need to define my dreams. Dining out while abroad takes an additional set of skills. I typically try to choose dedicated gluten-free restaurants, which I look for via the Find Me Gluten Free app or an online search. To my delight, I have found many authentic dishes can be experienced in a gluten-free kitchen!

Since my diagnosis, I’ve travelled to 13 countries including French Polynesia, Spain, and Switzerland. I have plans to visit five more: Scotland, Australia, Croatia, Iceland, and Norway

This endeavour has come with challenges. For most trips, I pack my own pans, cutting boards, and cooking utensils. I research locations more thoroughly before jetting off. I’ve gone hungry in airports more times than I care to count, I’ve learned the term “gluten-free” in about half a dozen languages, and I’ve even hauled a toaster oven around parts of Europe to have a cross-contamination-free cooking vessel. I’ve also had to accept that even with these precautions, there have been times abroad when I’ve accidentally consumed gluten and paid the price.

There’s an age-old adage that when you lose one sense, the others develop stronger in its place. That’s sort of how I feel about travelling with celiac disease. I’ve lost the ability to connect with culture through food the way I always dreamed of. Because of that, I’ve been forced to explore cultures in other ways. During my travels, I’ve had the opportunity to participate in activities and engage in conversations that I would never have expected.

I’ve swum with humpback whales in French Polynesia, snorkelled with sharks in The Bahamas, hiked through the narrows in Utah, climbed the Pico to Pico route in Portugal, longboarded in Waikiki, and cliff jumped in Spain. I’ve kayaked the canals of Amsterdam, traversed a trail through a castle in Luxembourg, visited six countries in 36 hours, and hiked to a suspension bridge 90 metres over a glacier in Switzerland. None of these experiences revolved around food as I envisioned as a child and yet they equalled—if not surpassed—my wildest travel dreams!

Travelling with an autoimmune disease means there have been times when I’ve grieved the experiences I initially dreamed of. Walking past stands of stroopwafel or sitting at a restaurant in Lisbon watching everyone else eating dinner felt sad and demoralizing. It’s difficult, challenging, and at times incredibly frustrating, to navigate a world that’s not built for you. However, I find it empowering to continue to chase my dreams in the face of adversity. Developing the ability to adapt, advocate for myself, find creative solutions, and reframe my mindset has made me a capable and self-reliant globe trotter.

That’s something I wouldn’t trade for all the baguettes in the world.