My husband has celiac disease. Before his diagnosis, for over eight years he was sick with exactly 100 mainly neurological, rheumatologic, and digestive symptoms. He and I visited 41 doctors, trying to find the cause. Hubby eventually figured it out himself, but until his GI doctor got the results of his (5th) endoscopy she didn’t believe him. The lab report confirmed that he has celiac. And he’s got it pretty bad, especially for an adult. It can be life threatening in some children.
The only way to handle celiac is to avoid gluten entirely. Gluten is a protein found in wheat and some other grains. Unfortunately, going gluten free is not merely a matter of avoiding breads and desserts. Gluten is hidden in many processed foods.
People without celiac often say this to me or to hubby: “They have gluten free everywhere now.” Although I’m sure they don’t mean to, they sound so cavalier. In the U.S., we love a positive attitude. People with illnesses and “different abilities” are encouraged to show how brave they are. On the news we are deluged with feel good stories about people who have lost all their limbs creating masterpieces and armless people driving cars. In their TV interviews, they sound so upbeat. We speak of being inspired by them.
I don’t have to worry about being the sad sack with a
pessimistic realistic attitude. I don’t have to feel that I should be an inspiration to others. I don’t have celiac. I’m not gluten free. If I eat gluten or not, I can’t tell the difference. So I CAN TELL YOU THE TRUTH ABOUT TRAVELING GLUTEN FREE.
When my husband was first diagnosed, the only way to eat at a restaurant was to take his own salad dressing and go to a restaurant with a chef-run kitchen that offers steak or fish/seafood. Then he had to order a steak unmarinated and a baked potato (hardly any restaurants serve the latter any more, by the way), and a salad without croutons or other contaminants. His only seasoning was salt and pepper and, if he was lucky, a little garlic.
Gluten Free Craze
Then the gluten free craze happened. This happened for two reasons. One is that the amount of people who are celiac (which is an auto-immune disease) and who are gluten intolerant (similar to an allergy, but not an actual allergy) has risen dramatically because our wheat has been created with 100 times the protein it had 100 years ago. NO KIDDING. And also because food manufacturers were adding it to processed food right and left. The other reason is that some people decided a gluten free diet was healthier or a way to lose weight (no, it’s not). Therefore, now it’s much easier to find gluten free food in stores and restaurants.
So How Does That Affect Travel?
Being gluten free while traveling is still a nightmare. You know all those gluten free menus in restaurants you see now? Most of those restaurants cannot provide a gluten free meal to people with severe celiac. People who are gluten intolerant (except the ones with a very severe version) and people who avoid gluten for other reasons don’t know when they have been “glutened,” but somebody like my husband suffers very much when they are glutened. The response from restaurants that do so tends to be that they never promised they were a gluten free environment.
Since hubby got sick 12 years ago, he has mainly only travelled for business, medical, and for our daughter’s college graduation. And he didn’t fly again until this past year when we visited my parents three times.
Now that hubby has been gluten free for a few years and is feeling so much better (with occasional bouts of illness generally related to restaurant food), we decided to see if we could travel. Not a trip where we go to my mother’s house and stock it with gluten free food and cook there. But an actual vacation adventure.
This is How A Celiac Fares During Travel
We had booked a three hour flight to Seattle. That is about as long as we dare to fly because hubby can’t eat food at airports as they are not equipped to offer “allergen free” foods. He has a weak stomach that has been caused by this illness. The man who once ate hot peppers dipped in fire hot sauce in Korea can now not even tolerate raw cashews on days of stress, such as flying day. Once we enter the airport, he can only eat the dry food we pack in his carryon. He brings rice cakes, rice crackers, a Kind bar, and an apple. I try to bring him some cheese as well, but I do worry because there is no way to keep it cold. Keep in mind that hubby is 190 lb of dense muscle. He works out 2 hours 5-6x week.
With a three hour flight, getting to the airport 1.5 hours early, .5 hour to get to the airport, and then time to get our baggage and rental car and get acclimated, I figured that he would be 6-7 hours without a meal. No problem. He had a piece of gluten free toast with cashew butter for breakfast. That was all he could handle before a flight, but he could wait the seven hours.
Well, our flight was three stinken hours late. That meant that he could not get a meal for 11 hours as we arrived at rush hour.
As an aside, is there a reason that Southwest Airlines has to offer as its only food choices gluten-coated peanuts and wheat crackers? Seriously? Since peanuts are such a dangerous allergy, why carry them at all? And why can’t one of the two options be gluten free?
That first night on our trip, after the long day at the airport and on the flight, we couldn’t find a restaurant that had gluten free options except for Morton’s steak house. We didn’t want to spend the money for such a pricey meal when we were tired and I had my own health issues at that point. But we had no choice. Guess what? With all their care, hubby still got glutened. We don’t know what item it was, but something must have been made incorrectly or been cross-contaminated.
To make a long horror story short, we spent our 12 days of vacation scrounging food. On two occasions, we found restaurants that didn’t gluten him and that we liked (one Persian and the other sushi) and returned the second day only for him to be sick within an hour or two. One day, we spent almost the entire afternoon and early evening searching for a meal. Every restaurant we went to either had run out of food or was closed. Some were closed because the owners had arbitrarily decided to close for a few days. Some were closed because they don’t serve dinner (typically, a gluten free restaurant is a gluten free bakery that offers lunch and maybe breakfast).
Making our restaurant research more difficult than usual (when it’s always bad enough), we were in Canada for much of our trip, and we couldn’t use much wifi on the road or while out and about. Because the world now relies on everyone individually accessing the internet, we couldn’t get much help at our hotels—and phone books? What are those?
The one highlight of our gluten free dining was that our 2nd to the last hotel
was a nice resort and offered two delicious (and tiny) gluten free desserts.
Unfortunately, we had eaten dinner elsewhere, so when hubby was sick
that night we didn’t know if it was dinner or dessert so we didn’t dare order again.
We carried gluten free bread, salad dressing (useful for bunless burgers if the restaurant didn’t have gluten free mayo, etc.), and tamari sauce (tamari sauce is only made with soy and not with wheat, and tastes about 50 times better than regular old soy sauce anyway). Note that unless you order gluten free single serve salad dressing online (Kraft Thousand Island is hubby’s fave), you have to keep an opened bottle of dressing refrigerated. Not an easy task while traveling.
We also travel with a toaster because hubby can’t use toasters previously used for gluten bread. 1/500 of a slice of wheat flour bread is enough to gluten him, so imagine what would happen with those toaster crumbs in his GI system. A humidifier and air purifier are necessary too because of damage caused by the disease over time. (I feel like I’m traveling with Niles Crane).
When we went to the gardens, aquarium, walking downtown or at the waterfront (the list goes on), we had to carry this stuff with us just in case. Nothing is more frustrating than finding a place that can offer that plain burger and not have any bread or condiment for it.
After a week and a half of this kind of travel, I came home exhausted. I couldn’t remember the places I experienced, but only felt haunted by the hunt for food (and beverage in some cases—gluten free coffee creamer, gluten free cocktail ingredients, gluten free beer).
Hubby was sick so much of the time. And we were so careful. But it’s not good enough. There is no such thing as gluten free travel.