free

Byron making coffee in a hotel bathroom, somewhere on the west coast.

You might wonder how I manage to travel so much given that I cannot eat in normal human restaurants or houses.

The answer is simple: planning!

I travel with food and the gear to prepare and eat it. My standard kit includes an espresso maker, kettle, cups, colander, plates, utensils, with sufficient basic provisions to eat even if I can’t find a store. And I make it all fit in a standard carry-on.

Along the way I buy vegetables, fruit, and whatever “safe” products exist in each region. Celiac disease is uncommon but distributed evenly across the population, so wherever I go (no matter how urban or rural) there is almost always a store or cafe with certified products.

There can be some anxiety if I don’t speak the language, but packaged foods have standardized labeling in each country. Organizations like Find Me Gluten Free have updated user reviews so it is possible to double check whether a particular venue is being truthful about their offerings. Other people with the disease lead the way, sharing their tips and preferences on blogs and message boards.

The greatest challenge while traveling is the prevalence of products or companies aimed at people who avoid gluten as a lifestyle choice. Why? Because those people do not suffer any ill effect if they are exposed. Gluten is not actually a toxic threat to the larger population, though avoiding it is trendy right now. Every city I visit has beautifully designed, popular establishments with #glutenfree signs in the window. Only a small percentage of these places are safe for me.

People with celiac disease get sick if they are exposed to even tiny crumbs of gluten; some of us get sick at trace levels. The legal standard is expressed as parts per million, which gives some sense of how little it takes to trigger an immune reaction.

I am extremely cautious about establishments that cook without gluten, but do not buy their supplies from certified sources. I am even more suspicious of places that do use safe supplies, but cook in a shared kitchen and serve on the same dishes. Have you ever had to ask for a clean fork, or noticed smears on your water glass? That is above the level of accidental contamination that can put a celiac patient in bed for weeks.

When someone suggests a great new place they know, leads me toward a paleo or vegan or keto cafe because they think it will be perfect, or tells me that a chef can make something special in the back, I shrug. I’ll go along to whatever faddish destination is suggested. I’ll admire the tile on the floor, and ponder how the cement counters were poured, and have a great time hanging out with friends and colleagues. But I won’t eat.

I grew up in a family and community where potluck was the most common type of social gathering, and you certainly never asked what was in the dishes on the table. If you went to see an elderly relative you took a coffee cake; if someone was in need, you delivered a casserole and shared the meal. People were not fussy or inquisitive about ingredients.

In my life in England, the usual place to meet was cheap and cheerful restaurants on Brick Lane, or riverside pubs. Losing the ability to share casual, uncomplicated, random food does feel strange. It also feels discourteous: I was raised to believe that declining food is insulting to the host. There have been many awkward moments when I have to turn down treats baked especially for me by a well-meaning friend, or sit in front of an untouched plate at a wedding dinner. I do it anyway, because the alternative is worse; eating contaminated food is a fast pass to serious illness. But I do miss both my childhood habits, and the convenience of my peripatetic adult life.

There is an unexpected benefit to the disease: it is a great leveler. People with celiac have only one thing in common – a life-threatening immune disorder. Those who persist in traveling after diagnosis have no automatic cultural affiliations. We don’t share political beliefs, sartorial styles, socio-economic backgrounds. We just want to find a sandwich that won’t kill us. I meet the most diverse and interesting people standing in line for gluten free cupcakes.

From Berlin to Bennington, Los Angeles to Lisbon, when celiac people order food we have the same basic question, expressed in many languages but a similar expressive wave of the hand. We ask it everywhere, even in certified gluten free facilities: you’re sure there is no gluten here, right?

Sometimes I find amazing things – a restaurant in Vienna that serves traditional (safe and good) Austrian food. Bakeries in rural Vermont or urban Portland making bread that rivals traditional competitors. Sometimes I find nothing at all, and I sit in my hotel, eating a cucumber and feeling fretful. But I keep traveling.

I’m a pragmatist (and I had cancer as a child) so I skipped a lot of the grief and anger people feel about this disease. Yes, it is annoying, and inconvenient, but it isn’t the end of the road.

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