About a year ago, my daughter Riley was diagnosed with celiac disease. We had already booked Hawaii. I sat with that diagnosis for a while wondering if we should postpone, or change the plans, or resign myself to three months of stressing about every meal on an island thousands of miles from home. In the end the answer was no, we go — because I have celiac too, I’ve spent over a decade figuring out how to live fully with it, and I was not going to let Riley’s first lesson be that celiac means staying home.
The trip I’d already planned — for a different traveler
I had done most of the legwork for Hawaii before Riley’s diagnosis. I knew where we were staying, which restaurants were safe, which spots I trusted, because I do that research for myself on every trip. But a newly diagnosed 10-year-old is a different traveler than a 10-year celiac veteran.
Riley grew up in a gluten-free household, so she already knew more than most kids her age. She understood cross-contact, recognized ingredients, knew which questions mattered — ahead of the curve before she ever had a diagnosis of her own. Knowing all of that in your home kitchen, though, is not the same as using it in a restaurant in Maui at age 10. And she still loves the kids menu. Chicken strips, mac and cheese, all the things that are now essentially off-limits unless you’re at a dedicated gluten-free kitchen. That was a grief we hadn’t fully processed yet when we boarded the flight.
What was actually hard
The hardest part of the trip for Riley wasn’t the food. It was learning to speak up. She’s 10, still figuring out who she is in the world, and now she has to look a server in the eye and explain a medical condition — politely, clearly, without embarrassment — every single time she sits down to eat. That’s a lot to ask of a kid.
So we practiced. We talked through what to say and what questions to ask, and at the first few restaurants I ordered for both of us so she could watch how I did it — the calm, the directness, the follow-up questions. Then I stepped back and let her try. She was nervous, of course. She did it anyway.
The poke moment
Riley loves sushi and salmon and isn’t a picky eater by any stretch, but she’d never had ahi tuna or mahi mahi before this trip. I had been talking up poke for weeks, and she was skeptical the way 10-year-olds get about food a parent has hyped: sure, Mom. Then she tried it, and I will never forget her face. She looked up at me and said, “why haven’t we had this before?”
Honestly, that moment is a big part of why this site exists. Not just for those of us who’ve been managing this disease for years, but for the newly diagnosed kids like Riley, and the parents trying to figure out how to give them a full life — travel, food, first tastes of things — without fear running the show.
A year later
We went out to dinner last week. Riley looked at the server, smiled, and said — completely unprompted — “I have celiac disease and I have a few questions about the menu.” Polite, confident, like she’d been doing it for years. A year ago she was a newly diagnosed kid who had never tried poke. Now she advocates for herself at restaurants and knows exactly what ahi tastes like.
If you’re planning a trip to Maui with a newly diagnosed celiac — or you just want to travel without spending every meal in fear — the free Maui guide is a good place to start. The complete paid guide has every restaurant, every script, and every lesson from our actual trip.
Read the Free Maui Guide →
Get the Complete Guide — $27 →
Educational content only — not individualized medical advice. Restaurant practices, menus, and ingredients change over time; always confirm preparation practices directly with the establishment and consult your own healthcare provider for guidance specific to your situation. See our full medical disclaimer.
