What It’s Like to Travel as a Celiac

how to travel with celiac disease

So the Dude family headed down to Potomac, MD last Friday for my nephew’s Bar Mitzvah. We would be leaving Friday am and coming back late Sunday afternoon. When I go to big occasions like this, I NEVER put a request in at the hotel to make sure there would be food available to me. These types of celebrations are not about me and the last thing I want (or anybody wants) is for people to worry about what I can and can’t eat. It’s a time to honor the man or woman of the hour and that’s where the focus should be.

So that means planning…and preparation…and cooking…and packing…and…well, let’s just see how the weekend went.

Dude Note: This is not a “woe is me; celiac makes traveling so difficult” post. I’m simply laying out the facts of all that goes into hitting the road for a long weekend when your living with celiac disease. Oh…and I think I’ll make it a pictorial for your viewing pleasure. Enjoy.

Thursday Night

Major props to Mrs. Dude. She spent hours cooking all of the food I would need for the weekend…and then some. Yes, I had tons of leftovers. Yes…I ate a lot. Yes…I just started the Whole30 again to detox a bit. Yes, I’m feeling better already. Yes…I’m talking too much.

gluten free pasta salad
What packs well? Pasta and rice dishes. This is Mrs. Dude’s famous pasta salad.
All packed up and ready to go. (Not shown...lemon, limes and a bottle of Tito's.)
All packed up and ready to go. (Not shown…lemon, limes and a bottle of Tito’s.)
travel with your gluten free food
A cooler is your BFF. Note to self…next time, put ice in it. Helps to keep things cool. Yes…I’m an idiot.

Friday

Like a Boy Scout, the key is being prepared. ALWAYS make sure there is a fridge and a microwave in your room. Makes things so much easier.

gluten free traveling
My weekend pals. I miss them so.
celiac-in-a-hotel
While everyone else gets their dinner, I sneak upstairs and nuke me an awesome meal and bring it down.

Saturday Day

I scarfed down a banana, a hard-boiled egg and 37 cups of coffee for breakfast. All good. As for the rest of the day…

heating up gluten free food
It’s not exactly glamorous being a celiac. Here’s my food on the floor as I try to prepare it for lunch.

Saturday Night

Just a phenomenal evening. But I will be honest with you. For the first time in a LONG time, I had a hard time. The cocktail hour was filled with a bevy of delicious looking food and though of course I was not tempted to cheat, I felt cheated. So I texted two of my best celiac buddies and told them I was struggling a bit. They both got back to me within a minute with wonderful words of support. And just like that, I was absolutely fine.

prepping for a gluten free weekend
You can’t see me, but I’m in the corner sitting in a puddle of tears. Just kidding. Sort of.
celiac traveling
We won’t talk about the balloon centerpieces. But boy…did they give me an immature chuckle.
bring your own gluten free food
How do you keep tab of your drinks at a big party? Put a spoon in them.
weekend away as a celiac
My three favorite people in the whole wide world!!! Four if I include myself 😉

Sunday Morning

Even though there was a breakfast buffet, I finished the weekend as I started it. A banana, a hard boiled egg and 37 cups of coffee.

gluten free coffee
Yes…I put a straw in my coffee so no one at the table would mistakenly sip it.

My thanks to our gracious hosts for an amazing weekend. Congrats Sam on a job well done. And another big shout out to Mrs. Dude for all of your efforts.

Got any great celiac traveling tips? I’m all ears.

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46 thoughts on “What It’s Like to Travel as a Celiac”

  1. Perfect! Planning and preparation are the name of the game when eating “strictly” gluten free. Over the years with practice it does indeed get easier. There is a big learning curve in the beginning, lots of mistakes get made, occasionally you miss meals/food you thought was safe and sometimes you do indeed go hungry. But, if you plan and pack you’re good to go and you’ll never miss a meal and always have a good time. Also, I’m finding more and more that restaurants are getting on board and offering gluten free options. I always keep a gf granola bar or power bar in my car and purse for emergencies. I made up my mind a long time ago that I’ll never let food or the lack of it get in my way of participating in life, having a good time and meeting new friends. Life is too short to let food be an obstacle. Here’s to you and Mrs. Dude for doing gluten free so beautifully! Cheers!

    1. “I made up my mind a long time ago that I’ll never let food or the lack of it get in my way of participating in life, having a good time and meeting new friends.”

      ^^THIS!!!

  2. Thanks for the play by play Dude, which helped me visualize my first hotel stay trip later this year. I haven’t been healthy enough to fly since Sept 2010 when I last flew to San Fran and which was also my last hotel stay. Sweet Wife is flying to Palm Springs in March but we decided I wasn’t ready yet for a cross country trip for several reasons but mostly trying to navigate the food issue. After eating only at home for last 30 days and starting to feel better than I’ve felt in last 5 yrs, we proved to ourselves that food is now the remaining main key for me.

    I foresee some major trip food planning in 2016 for me but, thankfully after celiac related 3 types of cancer & 5 retina surgeries, I’m finally ready to attempt embarking again! Thanks again for helping me visualize the process!

  3. I’m travelling next week (by airplane) for the first time since diagnosis. I’m a little nervous – we’re staying with family and I don’t want to insult my sister-in-law if she tries to cook (since I know cross contamination would be an issue). Like you said, preparation is key!

    Thanks for the spoon (or straw) in the drink tip. Genius!

    1. I understand the nerves about staying with family, but I just told them, “I can’t eat anything I don’t prepare myself.” Don’t be afraid to advocate for yourself. After the initial awkwardness of explaining everything, it is no longer a big deal. I figure my family would much rather spend time with a healthy me than have me eat their food.

    2. If your sister want to be insulted by your need to eat gluten-free, there isn’t a thing you can do about it. It is Her choice. Stick to what you know is safe and don’t buckle under to any pressure, we’ll-meant or not. Be hyper aware of cross contamination. Yes, you CAN get glutened by kissing the cheek of that adorable toddler who had a PBJ for lunch! BTDT Keep yourself safe. It is doable and it takes effort and vigilance.

  4. Nice job to you and Mrs. Gluten Dude for the preparation and planning! I usually haul a lot of food with me on trips, as well. My trick also is to take the pre-wrapped plastic utensil & napkin sets that I see at take-out places. I collect them when I see them and save them for traveling. That way I don’t have to risk using hotel silverware or even plastic utensils that have been sitting out. Some may compare me to Jack Nicholson’s character in “As Good as it Gets,” but I don’t care!

  5. I have always been a planner when it comes to traveling, now I start even earlier. I don’t even pick a hotel until I have researched food within walking distance. I survived in New Orleans because there was a crab place across the street that I found on FindMe Gluten Free. I also research airport food, no layover if I can’t get something to eat in an emergency. Denver has become my favorite layover spot when going east. I second making sure there’s a fridge and microwave and I take a carryon full of food with me. At a minimum I take a load of bread, peanut butter and honey since they don’t have to be refrigerated and then things like g-free ramen noodles and such in case I genuinely can’t find food. I have found though that the advent of DoorDash and other delivery services makes travel to most major US cities a bit easier since I can just have stuff delivered right to my hotel room door.

  6. We travel most of the time in an RV, which is awesome (all of my own food, yay), but when we can’t….We have a large cooler that plugs in to the cigarette lighter, no ice so more room for food. Also plugs in to a regular outlet, not sure how I would travel without it.

  7. Hi, thanks– looks so similar to my cooler, when I travel! One question– how do you manage the social side of it? Did you eat your dinner with everyone else at the bar mitzvah or sneak away for a bit to eat? I sometimes find that eating my own food at the table, at an event, brings on too much unwanted attention, especially when the person hosting has gone to the trouble of getting me a gf meal (without my asking), but it doesn’t seem quite safe enough to eat…

    1. I let the host know I don’t need a meal. When dinner times rolls around, I heat up my meal, bring it down and eat with everyone else. I simply don’t say anything to anybody, unless they ask.

  8. Thanks for posting this….I recognize it all so well. I actually had tears at the end as it comforted me in a strange way that I am not alone. I don’t let Celiac disease and multiple food allergies keep me from socializing and traveling but it is a challenge when one is surrounded with multiple good/fun/interesting things to eat and drink…especially when traveling. I try and enjoy the sites and smells of the wonderful food but sometimes it can be overwhelming and it does help if in those situations one has a few friends who really “get it” whom I can text/call.

    FYI I just stayed at hotel and the fridge I asked for froze all my food…ok for the meals i bought but totally ruined the hard boiled eggs….:-/

  9. I did a two-day road trip with my parents and boyfriend from CA to North Dakota. As you leave CA, there are less people aware of your Celiac problem. Thus, we prepared a cooler just for me. I included Hard-boiled eggs, salami, cheese sticks, GF Breton Crackers, a box of Chex cereal, cherry tomatoes, carrots, hummus, and yogurt. I splurged on the different foods picking my favorites and I ate when they ate, but was able to stay full and not feel deprived. When we got to our destination, I stayed with my cousin and her family and told her she is not responsible for cooking for me. My BF and I would go to my Celiac aunt’s house and she would either feed us or give me leftovers to take with me. She also provided restaurant suggestions, where I would get big helpings of protein to bring back for leftovers. It was interesting because food wasn’t the center of the trip, so it worked out.

    Currently, I am doing my first Whole30, at your suggestion…so thank you! And I have a trip to NV scheduled for mid-March, I will have to rethink some of my options for that trip. Protein salad all day. 🙂

  10. GF travel for an event like this tips:
    1. If you have a smartphone, use findmeglutenfree app or other local apps to find something special to have fun with food while you are there, whether its a gluten free bakery, a 100% gf restaurant, or just a cool market that has the best produce around. It can help alleviate those feelings of “cheating” by giving you something special to look forward to.
    2. In addition to the refrigerator/freezer, bring an ice pack with you. Ice packs can be handy to help make drinks cold, it can cool you off when its too hot, and sometimes you need it if you drink too much Tito’s the night before ::grins::
    3. Let the buffet waiters or restaurant waiters know you have celiac, and not to bring you any of the fried appetizers. They usually love knowing this information and making sure people are happy at their event – and in return, give them a good comment card or let the manager know the next day that their staff did a great job (bonus props for names!).
    4. If its someone cool who can get you something from the gluten free bakery in advance when they do a celebration, call them and plan ahead. When I do events for work I go and get special gf/df cupcakes from the local amazing 100% gf/df certified bakery for the folks who let me know, and often, their dessert is better than the gluten one. I may or may not do that on purpose ::grins::

    There’s a lot you can do to have fun with food without it getting in the way of a good time 🙂

    1. Findmeglutenfree is THE BEST! And even without a smartphone you can use their website to pick out destinations before you travel – we have even been known to plan to visit a particular town on a roadtrip purely because of a recommendation on there. Whilst on the road I’ve eaten safely in so many good places thanks to their app, and my non-gf OH loves it too as it takes us to interesting cafes/bars/restaurants we’d probably never have discovered otherwise (plus I can eat without stressing out or getting sick!).

  11. As a food allergy mom (peanut, treenut, sesame) we have to do the same thing for our kids. We just pack everything we need — the right breads, cereals, snacks, etc. for where ever we are headed. You are not alone in your travel adventures. Glad you were not glutened.

  12. I think one of the biggest things that being Celiac has taught me, is that food doesn’t always have to be a major event, sometimes we just need fuel for our bodies! Some fruits, nuts, crackers that can double as packing material, and we’re set! My kids just know that anywhere we go, mom brings “the snack bag”. I NEVER leave home (we live in the country) unarmed in the event hunger strikes. PLUS, I’m so paranoid about eating food in a restaurant anyhow (you NEVER know what you’re getting if you don’t prepare it yourself, and they won’t let me in the kitchen. I’ve asked.) It’s just one less thing to worry about when traveling, when you take the kitchen with you. Gluten Dude – you’re so dang funny…those balloons…someone did that on purpose JUST to see if you’d giggle like a 7th grader…

  13. You had me at Tito’s! That is my favorite Vodka. We used to drink Pinnacle, but I swear I always had a reaction to it, and hubby always thought I was crazy being distilled so many times, but I have never had that issue since switching.

    But seriously, thanks for all the great information. I never really thought about preparing food beforehand to take to an event, I’ve always tried to be selective, and of course have then paid the price by eating something that must have had some form of an ingredient, or was cross contaminated. It makes me not want to go out to eat anymore. I now bring my own food to work because even though we get a certain allotment of food in the cafeteria every day, there is a sign on the wall stating specifically that they are not allergy certified.

    Anywhoo, I love your posts! Keep them coming!

  14. Dude if you are ever in Potomac again I’d be happy to pass along some recommendations for places to eat. There aren’t many, but we have few good ones.

  15. I liked your comments about where the focus should be. I can take care of myself and don’t need unnecessary attention drawn to my food and what I’m eating especially at very special events. I really liked your spoon in the drink glass tip. Mrs. Dude can pack food for me any time!

  16. I am fine with taking my own food on trips. But I disagree on a catered event at a hotel if I don’t have to. People asking for gluten free over the years has made it more available. When I receive a wedding invitation I call the venue and ask if a there is a gluten free option before I RSVP. In the past five years I have only been told no once and I brought my food. . I don’t know why you think it is a bother to the family, they don’t even know. I have even received invitations lately that had vegetarian and gluten free boxes to check on the response card. The last wedding I went to listed beef, chicken or vegetarian. I called the hotel and asked if any of them were gluten free and they said “which one do you want?” I asked for chicken and they just asked my name. At the reception the names were on cards and some of them had little jewels on them in different colors so the person giving out the plates knew who got the special meals.

    I also disagree with drinking a bunch of coffee and alcohol on the whole 30. Cut out all the food but not that? It specifically tells people NO ALCOHOL.

    1. I’m not sure why you think I’m drinking alcohol on the whole30. I never said that anywhere. But I am indeed drinking coffee and it is allowed.

  17. I always pack food when I travel, but when we’re doing road trips, my boyfriend and I find places I can eat, and pack a lot of meals to eat together that are gluten and other allergen-free. We’ve found some incredible picnic spots (and also eaten in the car at some dismal rest areas), but I haven’t been glutened since our very first trip together.

    I really need to look into one of the plug-in car coolers, though. That would be amazing.

  18. I’m just about to have my second gastroscope to confirm a coeliac diagnosis.. And within a week or so of that I’ll be travelling interstate with family. I’m a bit worried. A fresh diagnosis is challenging enough, but travelling too? Scary. My scope was brought forward on the basis of my bloods, I was expecting to do it til after I travelled.
    Oh, and I’m Australian. The upside is that I’ll be travelling to a big city, which will hopefully have more choices!

  19. I’m so happy to have found your page. I was diagnosed a week ago and I’m leaving for vacation next week. Perfect timing ….thanks for all the time you devote to helping others.

  20. My husband is celiac and I have not let that stop us from traveling to Europe, New Zealand, Canada and many places in the US. We always stay in apartments, hotels with microwaves or B&Bs that I have personally vetted. The trips are not about the food but the food issues take up time and money. I recognize all the time it took to plan, buy, prep, cook and package up the food for your trip. Before every trip we always talk through the types of food choices, problems, situations, and issues we will face. Just another piece of the celiac life. Wonderful blog!!

  21. I really try to rely on the gluten free community when traveling to a new place. From blogs to Yelp reviews, someone’s usually been there before you and has put good intel out into the world for you to use!

    Also, thanks to your commenters for the tip on FindMeGlutenFree – I didn’t know about this but wow, what a handy website! Sadly, they don’t seem to be in the UK yet but at least when I travel home, I can put this to good use.

  22. Traveled to FL for a 2-week stay in Nov and had the grandkids join us. For my Celiac (and just for the plain expense of feeding 8 people 3x per day) I pre-cooked and froze the majority of our meals, including breakfasts. I bought a 100 QT cooler, had the hubby make thin ice packs to keep everything frozen and drove the 20 hours. A stop at the grocery store provided all of the fresh stuff. It was a bit of work cooking and freezing that much food – but we saved so much $$ AND I didn’t have to worry about being glutened and having it ruin the trip. I also flew for a business meeting a couple weeks ago and baked up some banana muffins. Those, along with bananas, nuts, a couple packets of Justin’s Almond butter (yes, you can take those on a plane) and those yummy snap pea munchies (addicting!!) kept me happy and full for the 3 day trip.

  23. Great planning, so glad it went well for you! Not sure if you drove or not, we are just 2 miles off Rt 95 right after the BWI Airport Exit. If you drive thru next time, stop in and let me treat you to safe meal!
    Maureen Burke, Owner, One Dish Cuisine Cafe, Deli and Bakery

  24. I finding gluten free food options roadtripping in the USA can be tougher than going overseas.
    Going across the pond to France all you have to do is say you need to eat “sans gluten”. Did not get sick once the entire week. A couple spots we went to from blogs and posts were closed (due to vacation or permanent adios) but I was able to pop in to the restaurants across the street and find tasty food. Gate (with an accent on the e) is a dedicated GF patisserie with amazing desserts and a small lunch menu in Paris.

  25. I m currently on a road trip and have so appreciated everyone’s advice and tips. I m blogging my trip and all I did to prepare in case it can also be helpful but not sure if it’s ok to put the blog link here?

    Thanks everyone and Gluten Dude!! You are awesome and reading your site helped me through a very tearful night in a 5*hotel. Thank you!!!

  26. What about when flying?

    I have to travel for work sometimes and I don’t always have a say in where I go or where I stay. This week I flew out to a small town in Maryland and stayed in a dorm-like room similar to military barracks… and with a shuttle, no rental car, so no driving anywhere. To stay on campus, I was required to purchase a meal ticket to the cafeteria. They claim to be able to accommodate special dietary needs, but they really are not trained or equipped for someone with celiac disease. On top of that, the staff there treated me like I was an annoying inconvenience. It was SO frustrating!

    I think I may just have to tell my employer that I refuse to travel here again unless I can stay offsite in a hotel and bring my own food somehow, but I hate feeling like I have to be a difficult person who is costing the company more money. ADVICE WELCOME!

  27. I so hear you and feel for you!! Is it possible for you to take a couple of frozen meals that they could heat up for you? I am on a 3 week road trip in South Africa which is my home and I have just frozen a whole lot of meals and it is working really well in the hotels. I just wrap it up in foil and they heat it up for me in their oven each night. Then I also have oats that I make some Bircher museli with the night before for breakfast. I have my nuts, seeds, coconut milk, and apple to add in the morning with some honey. It’s filling too. And then I fill in with nuts, fruit and when craving chocolate I just have a couple of chocolate seed bars that I have made. I am blogging my trip with all the things that are working and happy to send you the link.

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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