Traveling with Celiac Disease

By Jennifer Pocock

In September, my mom will be doing something we used to find unthinkable: she’ll be traveling to Italy.

What makes this trip such a monumental achievement?

She has celiac disease, which means she can’t eat gluten, a protein found in wheat, barley, and rye.

That’s a tall order for a traveler to the Land of Pasta!

Six years ago, my mom was rushed to the emergency room when her resting heart rate skyrocketed above 220. The situation was so dire the medics were afraid she’d have a stroke on the way. All of this (not to mention 20 years of digestive problems) just from eating wheat.

Even sushi can be tricky for people with celiac disease. (Photograph by Gwendolyn Moore, My Shot)

How bad is celiac? One teaspoon of cake could damage her stomach lining for years to come.

After she left the hospital, she faced an alien food landscape. What was life without pasta, pastry, cereal, and beer? Even sushi — itself gluten free — was complicated: the main ingredient in soy sauce is wheat!

Eating out can be a nightmare — from chefs who don’t believe you (“Oh, who cares — it’s a fad diet!”) to cross-contamination (“Just use that batter spoon to stir the soup.”), those “evil little wheaty germs” (as my mom calls them) can creep in just about anywhere.

And communicating all of this in a foreign language?

Seems almost hopeless!

Fortunately, that’s not really the case.

Dr. Alessio Fasano, leader of the University of Maryland’s Center for Celiac Research, says nearly 1 percent of the world population actually has celiac, but some places are more attuned to it than others.

Countries with an increased sensitivity to the disease provide hope for wheat-averse travelers who want to indulge their wanderlust and eat like royalty.

According to Fasano, all of the Scandinavian countries are all well aware of the disease, as are many Mediterranean nations.

Is there life beyond pasta in Italy? Sì! (Photograph by Taylor Gianangelo, My Shot)

In Italy, for example, the government screens for celiac in children by the time they reach school age. Those who test positive receive subsidies to help pay for expensive gluten-free groceries.

That’s right—Italy. Turns out that Pasta Paradise, that Pastry Peninsula, is actually a Celiac Sanctuary!

Fasano also pointed to France, Germany, Spain, and England as places where “awareness is high.”

If you’re still worried, there are travel operators out there that will cater to gluten-free customers. Bob and Ruth Levy established Bob & Ruth’s Gluten-Free Dining and Travel Club in 1995, not long after Bob was diagnosed with the autoimmune disease. They have since traveled all over the world with thousands of hungry celiacs.

The trick, Bob Levy says, is to negotiate with restaurants ahead of time and find out which ones are willing to go the extra mile.

“We won’t just settle for any food,” says Levy. “They always try to give us ‘conference food’ — dry chicken and rice and a salad. It’s safe and easy, but not worth the money we’re paying for these trips. We don’t want to just eat, we want to dine.”

And if you’re on your own, rest assured: the kind folks at www.celiactravel.com also offer downloadable restaurant cards in 51 languages that travelers can take with them when they’re heading abroad (the cards are free, but they accept donations).

Expert Tips for Gluten-Free Travel from Dr. Alessio Fasano and Bob Levy (though these work for any food allergy):

  • “Do your homework,” Dr. Fasano warns. “Don’t be naïve and think, ‘I’ll figure it out when I get there.’ And always pack snacks with you, no matter what.”
  • “Be patient, and be careful. And, when in doubt, don’t eat it.” says Levy. “I’ll get up and walk out of a restaurant if I don’t feel comfortable.”
  • “See if there is a support group in the country that will provide assistance,” Dr. Fasano says. “In Italy, there is the AIC, which provides a list of every restaurant, trattoria, and gelateria in every region that knows about celiac.”
  • “At a restaurant, always talk to the chef directly; never the waiter,” says Levy. “Stay in a quality hotel with a chef who knows all the ingredients and methods of preparation.”
  • “Finally,” says Dr. Fasano, “be adventurous.” “We are in the global village of travel and culture. I would strongly recommend to not decide where to go based on gluten-free diet needs — the environment needs to adapt to the people. Make the destination accommodate your needs.”

Jennifer Pocock is a research fellow at National Geographic Traveler. Follow her story on Twitter @Jenn_Pocock.

Comments

  1. […] want to go. Holidays and family gatherings consist of bringing a can of soup so you can eat. Traveling means reserving half of your suitcase for food. No, they don’t talk about these things when […]

  2. Reg de Livera
    Australia
    August 3, 2013, 4:56 pm

    I normally promote travel to Sri Lanka and have sent customers with the same problem to Sri Lanka with a note to hotel Managers that my customers are on a gluten free diet, and the response was pretty good. Had no complaints whatsoever.
    You can depend on Leisure World Tours to make your holiday Gluten free and inexpensive. Check this link:
    http://www.leisuretravelsrilanka.com

  3. Trudy Scott Food Mood Expert and Nutritionist
    California
    July 20, 2013, 2:58 pm

    Great resources for travelers who are going to Italy and have gluten issues! I’ll be sharing with my peeps!

    I love what Dr Fasano says!: “I would strongly recommend to not decide where to go based on gluten-free diet needs — the environment needs to adapt to the people. Make the destination accommodate your needs”

    I wish it was easy here in the USA, I have been “zapped” by gluten so many times that I am very very selective when eating out.
    Thanks!
    Trudy
    Author “The Antianxiety Food Solution”

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    India
    June 23, 2013, 3:35 am

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  5. [...] apropos,  a National Geographic article on traveling with Celiac [...]

  6. [...] the original here: Food Fridays: Traveling with Celiac Disease – Intelligent Travel This entry was posted in Uncategorized and tagged a-tall-order, and-rye-, celiac-disease, [...]

  7. Marian Goldberg
    New York
    July 24, 2012, 2:42 am

    Lotus Tours on Mott Street in New York’s China town for over 50 years, organizes trips for people with various dietary restrictions, including Kosher tours and Gluten-free trips and cruises especially to Asia. They actually bring their own soy sauce with them and inspect restaurants in advance. All Fairmont Hotels anywhere in the world have Gluten-free menu options.

  8. Jennifer Pocock
    Washington, DC
    July 23, 2012, 12:48 pm

    You’re absolutely right, Jodi–street food is so often the heart and soul of a place. I think, though, that those tips can still apply to to these places. It can actually be better since you can talk to the chef face-to-face and see their food prep first-hand. If you don’t feel good about a kiosk, you can move on to the next one!

    You’re also right about doing basic research into ingredients, which is something I should have emphasized. If you know that something will almost always have wheat in it (like soy sauce), you can try to bring your own and ask for them to prepare it with yours (as courteously as possible, obviously!)

    Thank you so much for your comment and insights!

  9. Kaylene Armstrong
    MS
    July 23, 2012, 12:31 pm

    A columnist in my local paper who happens to be a chef and owns a bunch of local restaurants, took a tour of Europe last year (something like six months) and wrote about it along the way. He pointed out in one of his columns that Italy was surprisingly celiac aware (apparently one of his traveling companions had the problem). Good luck on the trip.

  10. Jodi (Legal Nomads)
    NYC
    July 21, 2012, 11:22 am

    I’ve also got celiac disease and recently wrote a long post about how Italy was the most celiac-friendly country I’ve ever been to, and with 4 years of round-the-world travel, I’ve been to a lot of places. :) It amazed me that there were GF options at every turn, and even in the tiniest of villages, people knew that it wasn’t just wheat, but also barley and rye that caused issues.

    That said, I don’t know that talking to the chef makes a difference in most places unless you’re at a fancier hotel – I tend to eat primarily street food, and oftentimes the street stall is not aware of the allergy, nor do they realize what has wheat flour in it (e.g. in Thailand, I have to ask if there is soy sauce as it’s got wheat flour, and realized the vegetarian “mushroom and tofu” meatballs were actually made from seitan – aka wheat gluten).

    Therefore, I’d urge not just basic research, but also some background into what basic ingredients are used and how, so that you can eat on the street and not just the fancy hotels. That is, of course, where the best food remains, and the food that allows you to learn the most about the country as you eat it.

  11. Jennifer Iscol
    California
    July 21, 2012, 2:10 am

    Nice work, Jennifer! I hope your mother has an excellent trip to Italy.
    Next, we will be looking for a full length article in NGM about the history of wheat cultivation, the rise of celiac disease and its increasing prevalence in the last 50 years, its global geographical distribution, and intersections with medicine, culture and food manufacturing…