Awareness of celiac disease is on the rise, but many places have never heard of it, so patience is required both in explaining the issue and handling mistakes
hile eating dessert in Finikas, a tiny town on Syros in Greece, I realized that I might have made a terrible mistake. I didnt speak Greek but I had presented the restaurants owner with a celiac translation card in his native tongue. Through limited English, he assured me that his dessert was safe for my stomach. As I got to the bottom of the rich custard treat, I realized that it sat on a base of what seemed to be honey-soaked bread. W
That evening, I communed at length with my apartments toilet. The next morning, I couldnt bend the fingers on my inflamed hands. Though the owner had assured me his dessert contained no wheat or flour, my stomach disagreed.
I stopped by his restaurant the following evening to ask about the custards base. Made from pastry dough! he exclaimed with a smile. I asked if that meant wheat flour, and his face fell. Ah, yes. But you didnt say pastry dough? You said wheat flour
Thus ended another cultural experience of glutening in a far-flung place.
I was diagnosed with celiac disease in the early 2000s, before the current explosion of gluten-free eating. The disease, which affects close to 1% of the population, is often misunderstood. Its an autoimmune condition, not an allergy. Those of us who have it suffer greatly even if we eat a small amount of food that contains gluten. This includes cross-contamination: frying potatoes in the same oil as croquettes will do the trick.
The author photographing her bowl of Pho-To. Photograph: Jodi Ettenberg
It isnt just about stomach distress, either. Eating gluten causes our bodies to attack the cells lining the gut, which can result in malnutrition, lower vitamin absorption, inflammation and a
higher risk of other autoimmune diseases.
I dont mention these stats for pity. I cite them because for celiacs, it is critically important to avoid gluten the diet is not a choice. The trendiness of gluten-free eating has made it frustrating at times. By picking and choosing when to be gluten-free, dieters are trivializing the disease. However, there are far more gluten-free options available now then when I was first diagnosed. Then, I was young and loved pizza. I ignored my doctors advice and reintroduced gluten when the initial symptoms subsided. I paid the price with skin issues, anemia and a beaten-down immune system.
These days, I am careful. My work involves travel, writing and a lot of street food. Avoiding gluten has added a layer of challenges, and there are countries that are tough to visit as a celiac, where gluten reigns. In others, naturally occurring base ingredients such as teff, mung beans, rice and tapioca are used, all gluten-free.
Here is my system to minimize ambiguity as I eat, honed by trial and error during eight years of travel around the world.
Research, research, research
When traveling with an eating restriction, a good chunk of the unease stems from the unknown. What ingredients are used in different countries? What is safe? I start out by researching the cuisine in a place using Wikipedia. Then, I break down the ingredients in the main dishes for that city or country in a spreadsheet. Do recipes call for flour in the soup? Is the fish dredged in flour first?
I try to have these answers before I embark on a trip to a new destination. While this approach sacrifices some spontaneity in dining, I can still build in flexibility when armed with knowledge about the dishes instead of specific restaurants.
Condiments might be your enemy
Most celiacs know that soy sauce has wheat flour in it, which makes travel to countries that use it heavily more difficult. But other table condiments are problematic also. I found out the hard way that in New Zealand, several brands of mayonnaise contained wheat flour. In Portugal, yellow mustard includes wheat. Pre-made salad dressings, BBQ sauces and gravies are often off limits. When I get to a new country, I head to the grocery store to check out the labels for the most common table condiments.
I can still build in flexibility when armed with knowledge about the dishes. Photograph: Jodi Ettenberg
Learn to ask the right questions
I am grateful for companies that sell strict celiac translation cards in a variety of languages, such as
Select Wisely and Allergy Translation. The problem? The cards explain what to avoid, but most food vendors do not know whether their ingredients contain gluten. And why should they? Its not something theyve had to worry about traditionally. In many destinations, asking a simple does this have wheat is insufficient. In Oaxaca, Mexico, several mole sauces include bread as an ingredient. I asked vendors if their moles contained wheat or wheat flour, and they said no. Only when I asked if the sauces had bread did they say yes.
The right questions matter.
To try and fix racking your brain for all questions available, Ive begun building highly detailed translation cards for countries around the world, available for free. These include the dish names in the local language, as well as commonly used ingredients there. I have completed
Japan, Greece and Italy, with more on the way.
Take snacks on your daily wanders
Finding safe food on the ground is not a guarantee. I bring snacks on flights, but also as I wander around a new place. In many countries, snacks are bread-based sandwiches, waffles, pizza and more. I buy raw almonds or snack-sized cups of peanut butter, and cut up some cucumber or raw peppers to go with it. Throwing these into my bag keeps me afloat when hunger strikes.
Street food is your friend
I find myself most in control of what
I can eat when Im eating on the street. Street stalls are transparent kitchens where I can see what ingredients go into each meal, and specifically request to have certain ones removed. When in Thailand, Ive requested dishes to be made without soy sauce, and in Mexico Ive been able to watch and make sure corn tortillas arent replaced with wheat. Cross-contamination risks are often lower also, because street food joints tend to focus on a smaller selection of dishes. I can choose the ones with the safest dishes and heaviest turnover. A bonus: the experience of exploring a new place through a bustling street food experience.
Awareness of celiac disease is on the rise, but many places have never heard of it, and might feel less moved by food allergies generally. As with my experience in Greece, patience is required both in explaining the issue and handling the occasional mistakes.
Overall, this disease has forced me to rethink my relationship with food in a more positive way. When I hear from newly diagnosed celiacs, I implore them to treat the disease as a springboard to learn more about food, and to please keep traveling.