More Gluten Free Travel by The Celiac’s Wife

Now that I’m back, I have so many things I want to blog about: places and people we visited and books I’ve read, as well as other randoms thoughts I’ve had lately. Today I only have time to mention once again how difficult it is to travel with someone with severe celiac disease.

We flew into Chicago and drove to Kalamazoo. Because of the length of time that can be involved–especially if a plane is delayed–in going without food and what I learned last time, I packed some cheese and salami and hard-cooked eggs with a frozen ice pack in my carryon. These items, along with gluten free crackers and breads, would sustain hubby as long as necessary. As a precaution, I’d emailed my mother an easy recipe for gluten free chicken and dumplings so she could have a hot meal for us when we got in for a late dinner. She also made homemade applesauce to go with it. The gluten free dessert I packed provided the nightly dessert hubby always craves.

Next day breakfast and lunch were negotiated by reading labels at mom’s house.

My brother was making dinner for us on the grill. He had been planning it for weeks and had asked me several questions by text about what hubby could and could not have. Brother made both trout and salmon and everything was delicious.  Plus, I got to play with my brother’s granddaughter (18 months) and two dogs.

The day after we were off to Toronto and figured it would be easy to find gluten free in a big sophisticated city. Wrong. It was very difficult, but that first night we were able to rely on a standby: PERSIAN FOOD. Or you can call it Iranian food. No matter what you call it, it’s the only truly reliable food. If you’re gluten free you have to avoid the delicious bread and watch for appetizers and other odd dishes that might have gluten slipped into them. And no baklava ever ever ever. But the basic kebabs, koobidehs, and other meats, as well as the rice dishes, are all gluten free. We usually bring our own gluten free salad dressing, just to make sure, but even the salads are usually gluten free.

For the second night, we had problems. We didn’t want to subject our cousin and her friend to the same meal, and we were meeting a second cousin as well. The only restaurant we could find that we felt we could trust was a burger place that made a huge deal of having a zillion gluten free options, etc.  It sounded like the good place we ate at in Victoria. Nope. We discovered that the fries were not made in a dedicated fryer, meaning that they are fried in the same fryer and oil as the BREADED ONION RINGS. We were disappointed because the only side he could have with his burger was a very very spicy cole slaw. Between the spice and the cabbage, that is a disastrous combo for someone with a GI illness.

As an aside, although many people with celiac recover when they switch to a gluten free diet, a minority keep their symptoms because the system is already so damaged. My husband is in the latter group.

So the burger place was disappointing as the only way hubby could get enough food would be if he ordered a 2nd burger, which he was unwilling to do (too much meat, too much food, too much of the same, too much money). And we worried about cross-contamination in a place that didn’t even care to get a 2nd fryer when they advertised so much about their wonderful gluten free menu items. hahaha

After Toronto we drove to New York. We stocked up on cheese and gluten free bread items and managed to get our ice pack frozen, but the drive didn’t offer much else to eat. You can’t really get gluten free food on the road. All along the way, even at Niagara Falls, Tim Hortons was the major food option–buns, doughnuts, and coffee creamer by a company I couldn’t research! Hubby didn’t dare get anything but black coffee there.

Notice the double rainbow: no gluten free yummies at the end

New York City is both the best place and the worst place for a celiac. It’s the best because they actually had some wonderful restaurants for celiacs and the worst because there is such a wealth of wonderful foods (especially ethnic, our favorites) that hubby can’t eat. We found an entirely gluten free Italian restaurant that was very good and quite charming. We also ate in a Persian restaurant the night we saw Something Rotten, a delightful Broadway musical. The food was excellent, and so was Christian Borle in the show! In my daughter’s apartment building, a well-stocked bodega kept me satisfied and offered just enough gluten free salami and cheese for hubby.  But we couldn’t buy food off the carts around the city or eat at museums or stop wherever we liked for a snack.

We drove for 2.5 days after our NYC visit–through Pennsylvania, Ohio, and into Indiana. Breakfast the 2nd day was a bust. We had a free one at Homewood Suites, but literally everything had gluten or could have had gluten. They didn’t have any packages so that we could read labels. Waffles, pre-made omelets, sausages, cereal, you name it: all gluten or potential gluten. Hubby lived off the salami and cheese once again. And potato chips.  I had to grab whatever I could. At one rest stop I grabbed something ahead of an Amish family of 8 slow-deciders. It turned out to be 10 tiny potato wedges and breaded chicken tenders. GREASY. And then I had to carefully wash my hands so I wouldn’t contaminate hubby’s bread and cheese. Very tedious, but we didn’t starve. It just wasn’t fun and was annoying.

So when we drove toward Indianapolis late on the 2nd day of that trip, I tried to find a restaurant with gluten free offerings along a major highway. I used an app on my iPhone. The only one I found was Outback, one we can often rely on, although sometimes you get an employee that puts croutons on the salad and thinks that if he takes them off the salad will be gluten free. NOT. 1/500 of a slice of bread is enough to make a celiac sick.

Outback was literally mobbed, with a half hour wait. I started to get a sinking feeling because I worried about cross-contamination, but what else could we do? I asked hubby if he wanted to find a grocery store instead so we could read labels. But he was sick of cold food out of baggies. Then I used the restroom. What a disaster. I came out and said, “We’re going. You will get so sick here.” If they were that busy, there is no way he was safe.

Once again, I resorted to my iPhone. There was one–and only one–real option less than 2 miles away. As we drove up to it in the dark, we saw how sketchy it was. It was on the “bad side of town,” and the restaurant didn’t look so great inside. Then there was that biker decor–graffiti walls and a big skull. But by then we were starving, or at least thought we were. We decided to go in. As we stood at the counter to order our food, hubby said, “I’ll pay. Will you go look for my pita bread?” We have Middle Eastern Deli & Bakery in Phoenix, and they make gluten free pita bread. Hubby likes to take it everywhere. Out in the dark, I was searching through suitcases with the door open, thinking how dangerous this was. After a little while I heard some scuffling past me, but I had the bread in hand and turned to go in.

The heavily metalled and tattooed young lady who worked the counter was locking the door and yelled at me to come in fast so she could lock up. I scuttled in, wondering what in the world was going on. Hubby sat by the front glass window and I told him something was up and to move back from the window.

A minute later the young lady came out from the back and said to us and the other customers, “We’ve just been robbed. If you don’t want to stay we understand and you can go. If you want to finish eating, that’s fine. We are going to keep the doors locked and are closing up for the night.” She was very rattled and bounced about somewhat manically. We heard other employees in the backroom talking about the gun.

Hubby told me that it was the guy in the hoodie who had come in as I went out to the car. He and hubby had had a small conversation. At the time, hubby didn’t realize he had a gun or was planning to rob the restaurant, of course. In retrospect, the guy could have robbed hubby at that time and he could have robbed me when he came back out.

Everyone else left, but we waited for hubby’s po boy beef over rice and cole slaw (no bread) and my fried oyster po boy (YUUUUUUMMMMM) and ate it all down. I had a big glass of sweet tea, to boot. The police came, but they didn’t even interview us. What would have been the point?





Filed under #AmWriting, gluten free, gluten free travel, Research and prep for writing, Sightseeing & Travel, Writing

44 responses to “More Gluten Free Travel by The Celiac’s Wife

  1. What an experience. I only have one friend who truly has celiac disease and it isn’t fun. A lot of others either eat gluten free because they are wheat sensitive (totally different) or because it’s become so popular. I can’t imagine a “vacation” without periodically gorging on wonderful foods in a new city. Sure hope you have some good times that didn’t involve eating.

    • People who aren’t celiac can’t tell when they’ve been “gluttened” and so don’t know how often their food is cross-contaminated! Yeah, it really is putting a damper on our fun.

  2. That’s pretty scary, being so close to a robbery. Glad you weren’t hurt.

  3. Oh my, so relieved to hear you and hubby were okay…and you still got to eat your meal too. But that sounds really, really scary….

    • I wasn’t all that scared. I probably should have been. Once we thought someone had broken into the house and we were upstairs. It was me, not hubby, who went downstairs to look. I seem to have a good denial talent going on . . . . But I was relieved we weren’t shot and was so happy to get my meal ;)!

  4. Good Lord! I am so sorry, Luanne. A lifetime of GI problems sucks for afflicted and thise who live with him (me).

  5. I don’t have celiac disease, but I do have Crohn’s Disease and you’re right, it does make for difficult travel.
    Oh my word! I’m happy to hear no one was hurt.

  6. How complicated and difficult! Travel is just about not worth it with all that going on. I’m sorry things weren’t easier for you and M.

    • WJ, yeah, it’s made travel quite unpleasant, for the most part. Too much thinking about food and yet not having it be a good experience when one does eat it!

  7. Leslie

    I thought you might relate to this post. She is a poet and I follow her as a writer. But often writes about her husbands condition and also their cats.



  8. A robbery. Yikes. So glad you weren’t hurt.

    You do a great job of demonstrating how difficult it can be to travel with someone who has food restrictions, something most of us don’t even think about. Hopefully your words will make us all more aware of the issue and do whatever we can to make it easier for visitors who come to see us.

    • I never thought about these things either. I know there are people with much worse problems traveling. Wheelchairs, for one. I did that one year, and that is not pleasant, but I was able bodied other than the one limb that had to be protected like an expensive but fragile egg. But if I had to rely on a wheelchair all the time that would limit a lot in travel. Or a wheelchair AND eating problems. So many conditions and illnesses . . . . But this is our travel situation right now, and it is just kind of blech.

  9. Wonderfully original travel story, even if it was a challenge for your husband to find gluten free food. The ending was the best part – finding delicious acceptable food and too busy enjoying it to pay attention to a robbery! 🙂

    • Hah, thanks, Viv! I’m glad you appreciate how much we wanted the food!!! I keep hoping they will make a pill that hubby can take to make gluten digestible. It wouldn’t have to be for a slice of bread, but just to take away the worry of cross-contamination and hidden gluten in sauces and marinades. That would be enough!

  10. Good grief. Who would have thought hubby’s celiac disease could lead you to a place where there was a gun robbery. Truth is stranger than fiction as they say!
    I find it quite hard to travel with my wheat intolerance, but mine isn’t nearly as bad as your hubby’s. It really makes us realise how we should take note of what we serve when we have guests. I have found the most awesome gluten free bread to make. It’s made by Laucke and I just add water, mix and bake. My hubby loves it (and he has no food intolerance) and refuses to now eat any other bread (and that’s saying something!).

    • Truth is so strange, Dianne! Yes, I should have blamed hubby 😉 but it turned out to make for a good story to tell people. Laucke? I don’t think I’ve ever seen that brand. Maybe they don’t have it in the U.S. 😦

  11. Gosh, Luanne, what a nightmarish experience for you and your husband…how did you have time to enjoy any of the sights and visits with family when you have to focus so much on everyday eating?? I’m so sorry. I never realized so much how pervasive the problems were this disease. Welcome home!!

    • Sheila, that’s the rub. We’re always focused on the food and can never be spontaneous. That’s half the fun of vacationing is the spontaneity. Oh well, things could certainly be worse. And the robbery could have gone much worse for us, too! It’s been easy at home though. We’ve had a great miso-glazed salmon dinner, burgers and sausages on the grill, all stuff that is easily gluten-free as long as it’s being made at home.

      • Oh gosh, that sounds so very “un-vacationey.” You need to go to The Hideout in Wyoming – it’s a working dude ranch – but they have the best cooks and they ask dietary requirements before you go!! Of course, you might have to ride a horse!!

        • That sounds like a lot of fun. I used to ask hubby to go to one of those with me, but he’s so afraid of horses (and gets mad when I tell people, but he doesn’t read the blog haha). Years ago I made him take riding lessons with me and I had I to talk him out of the car for a half hour. Then they gave him a huge horse.

  12. This story had a happy ending, Luanne. You are both safe, food was delicious and both ran into a robber with no bad results. 5he story could make a fascinating chapter in your memoir, called “Action in a biker diner,” or something catchy like this. 🙂 The grilled food brother made, the special Iranian meal and the lovely double rainbow were the positive parts to focus on. 🙂

    • LOL, so funny, Robin! Yes, we did have some lovely times. And it was so great to see our daughter and squeeze her a lot. And she lives within view of the statue of liberty!

      • I am relieved, of course, you and your husband are safe. I think like comedians bring up things to get people to laugh, I was deflecting all the numerous and absolutely real nightmares that you and he go through in your travels. Makes me more aware of things to pass on to others I know. My oldest daughter has a close friend with Crohn’s. My youngest is trying to follow a “gluten free” diet to promote better health and prevent rheumatoid arthritis flare- ups. I will mention to her this about “clean” fryers and cross contamination, Luanne. You are doing many a valuable and educated service when you post about these life challenges for Celiac Disease sufferers.

        • Definitely tell her about the fryers. So many people who are on gluten free diets don’t realize they are still consuming gluten. You can only tell if you are celiac and actually get sick right after eating.
          Talk about comedians with their real stories, something happened to my husband that would be funny if it weren’t so stupid. I told it at the hair salon and the entire salon was hanging on every word (more for the drama than the humor). I’ve never had that happen before. But I am not sure about writing it here because I think a lot of it was in the verbal telling of it, rather than it being written. Thinking about it though, but it won’t be as dramatic written ;).

  13. OMG, the robbery! And how ironic that you still got a good meal 😉 My husband has been listening to a course on human evolution. Sounds like our “evolution” to the agricultural era might be somewhat to blame for illnesses such as celiac disease. The lack of variety in the agricultural diet may have predisposed us to certain gene mutations. Add to that how long it took for your husband to be diagnosed (leading to his having such a severe case of it). To be honest, I don’t see why it should be SO difficult to find restaurants/foods that your husband could eat, that you both could enjoy. The home-cooked meals you had sounded wonderful, and you’d think restaurants would be able to offer the same simply by preparing food in a more healthy way. I hope I’m making sense. I guess I’m thinking that your husband’s diet would be healthy for anyone, so why don’t restaurants just go entirely gluten-free. Yes, I know why they don’t ($$$) but if someone gets sick from eating the same meal I had, then I have to wonder what the hell I’m doing to my own body 😉

    • This is a brilliant comment, Marie. You are so astute. It is really really simple to make delicious food that is gluten free, as long as you can get the ingredients (and they haven’t been contaminated by food processing). I do think that the gene mutations have caused a lot of the problem with gluten. Maybe peanuts, too? Not sure about that one. So well put at the end there: yes, what the hell are we all putting into our bodies?!!!

  14. I thought I had commented on this post, but I guess I didn’t, and now I don’t remember what I wanted to say. Haha.
    I’m glad you got a good meal–after the robbery. Yikes! Thank goodness you weren’t robbed and no one was harmed.

  15. Luanne that robbery would have rattled me. I would not have been able to eat no matter how hungry. Glad you are okay.

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