‘I Have Celiac Disease, and My Life Is Delicious!’
5.15.2024 | Celia, Seattle Children's Patient
By Celia, a 12-year-old patient of Seattle Children’s Celiac Disease Program and member of Seattle Children’s Celiac Youth Leadership Council
My name is Celia, and I have celiac disease. It has always been a running joke with my family and classmates how my name is frighteningly like the spelling of the disease — my email handle for school even begins with “celiac” — though it was a complete coincidence.
I was diagnosed at age 3 at Seattle Children’s, such a long time ago that my memories are incredibly hazy. I remember only a photo — which my mother still has — of me sitting on a white hospital bed, looking unfazed and casually sucking on an orange-flavored popsicle. That photo is the only proof that I’ve been diagnosed, as I don’t remember the endoscopy.
Living with celiac disease is tricky, and it affects both me and my close family members. On a road trip, we can never stop at McDonald’s or a fast-food place because there aren’t any safe foods for me to eat. When traveling abroad, we can’t spontaneously stop at a cute London café and order scones and clotted cream without researching their kitchen and safety precautions.
Celiac disease limits what I can eat, but also what foods my mom and dad can keep in our house. I cannot remember a reality with gluten, but my parents do. I often wonder what is going on in their heads — if they’re secretly irritated or exasperated that they can’t bring home a packaged croissant from the grocery store because it will expose me to gluten.
Another big way that gluten has affected me — and not positively — is at school. There are often class activities involving flour, sweet treats or Play-Doh. Whenever something with gluten is pulled out, my classmates speak up for me: “Oh, she’s allergic to gluten. She can’t have that!” After that outburst, I am left desperately wanting to raise my hand to contradict them: “I’m not allergic. Celiac disease is not an allergy. And what happened to speaking up for myself?”
It occurs to me that they have my best interest at heart, but I am always rather irked that for some reason they think that they know my condition better than I do. These disappointing experiences prompt me to spread the word about celiac disease so people are properly informed and so all celiacs can feel supported and seen.
To that end, I joined Seattle Children’s Celiac Youth Leadership Council (CYLC) to help build our community and to help newly diagnosed patients and families. I wish it was possible to say to them, “I want all your problems to go away. I will help you live with celiac disease, but without any extra grocery shopping or planning.” Of course, such a thing is impossible; however, I hope to help families adjust to the strange, new world of celiac disease.