Like most celiacs, my life since diagnosis has required overcoming many challenges: figuring out what to eat, how to find it and how to cook it. Learning to eat out again, and to advocate for myself without coming across as defensive or difficult. And the physical recovery from my symptoms: the endless stomach problems, headaches, brain fog and mystery ailments that plague the undiagnosed celiac daily.
After 20+ years, I can look back with gratitude at some of the lessons being celiac has taught me.
Mom and I both still cringe at the memory of me sitting in the kitchen long after dinner, staring at a plate of something green. Asparagus, Brussels sprouts or broccoli, I hated them all, and fought off all attempts to make me eat them. It's amazing how patient an 8-year-old can be when faced with a plate of green beans.
Going gluten free forced me to find something besides pizza and pasta to fill my plate. I learned to eat sweet potatoes, carrots, spinach, and even (not too often and only with bacon) Brussels sprouts. Thanks to my gluten free needs, I eat more fibre, more vitamins, less fat and almost no processed foods with their unpronounceable chemicals.
I was a shy child, and I am still basically an introvert. But I love eating out, and going back to restaurants required that I start speaking up for myself. I was 29 years old and a practicing veterinarian when I was diagnosed, but insisting on what I needed in a restaurant was still hard. Add to it that the vast majority of servers and chefs had no idea what gluten was, and eating out was a challenge, to say the least.
It was also essential, especially when I took a corporate job and was on the road, visiting clients most of the time. Dining out was a twice- or thrice-weekly occurrence. So I learned how to order, how to advocate, and how to say thank you. Now I eat safely almost anywhere: I can choose a restaurant, navigate the menu and explain what I need in 3 languages. Without my celiac diagnosis, who knows how many bad meals I would have put up with!
Since my diagnosis, I have moved around the US and around the world - less than some people, but more than many. My jobs have taken me to countries where I don't speak the language, or cities far off the beaten track. Each time, I have turned to the local and international celiac community for help, and they have always come through. I've received restaurant recommendations in Australia, recipes in Arizona, and emergency food supplies in Slovenia.
We have a global community of people who understand. When it comes to helping other celiacs, we're friendly, supportive and generous with time and knowledge. I am truly thankful for everyone who helped me, and I pay it forward whenever I can.
I am in control
That may sound strange, when I have to watch everything that goes into my mouth so closely. But really, I consider celiac disease to be one of the better chronic conditions to have. Once you have your diagnosis, you know how to control it: avoid gluten.
Yes, it's hard. Some days it feels overwhelming. But I am not tied to chemotherapy, or complex medications, or worse yet, the victim of a progressive, debilitating condition for which there is no treatment or cure. "All" I have to do is watch what I eat.
I see friends and family suffering with cancer, or neurologic diseases, or the effects of Long Covid. On those days, I eat one of my gluten-free brownies and thank Fate and Fortune that I all I have is celiac disease.
Life is good
No, it's not all cake and donuts. I don't eat my chocolate swirl cheesecake every day. Airports and airplanes are still tough. Like many of us, I've been caught at business or social events, and had to sprint for the bathroom and stay there for hours before crawling to bed, trembling and sweaty. But as I learned more about our disease and my own reactions, I have learned about myself, and grown as a person.
Would I like to be rid of celiac disease? Do I sometimes lust after a classic New York Black and White Cookie or a real piece of pizza? Of course I do! But I have learned to adapt. I have even grown, thanks to my celiac life. On balance, I'll take it.