Traveling with chronic illness/ auto immune disorders: Celiac Disease

If I am going to die, I am going to see as much of this goddamn big beautiful world as I possibly can before I do!

Don’t freak out, I am not actually dying… this isn’t a “Fault in our Stars” situation. I guess I am technically dying, at roughly the same rate as everyone else. What I am trying to say is, I live with chronic illness. You see, I have Celiac Disease, Asthma and Chronic Bronchitis, commonly known as C.O.P.D.

A common objection I hear from people regarding travel is “Oh, I have this health condition…” or, my chronic pain makes it hard for me. To which I say, “hah!” …. not really, that would be extremely rude. But seriously, chronic illness and pain, emotional or physical doesn’t have to keep you from traveling. You should never feel trapped by your disease/ condition. You just have to learn to work with/ around it. So I thought I’d do a series on traveling with Chronic illness. Starting with one I get asked about most frequently, my Celiac Disease.

Celiac disease is an auto immune disorder. A lot of people think it’s just a mild gluten allergy or intolerance but its much more complex than that, unfortunately. Celiac disease is an auto immune disorder which is activated by ingestion/ exposure to gluten. Gluten is a protein found most commonly in wheat, rye, oats, barley, hops… you know all the stuff tasty food is made of. Celiac is genetic, my sister has it too, and it can manifest at any point in your life. For example my sister’s celiac manifested when she was 10, but mine didn’t activate (that’s right, activate, like an X-man mutant power) until I was 19. Symptoms vary from person to person, but they’re what make Celiac a real butt kicker. My symptoms include, head ache, nausea, difficulty breathing (because it causes my bronchial tubes to inflame, and causes my asthma to activate), hives on my hands and wrist (I know its weird), heart burn, lethargy, like extreme lethargy, like I fall asleep sitting up at random intervals, vomiting, hair loss, lesions on my skull, dry skin, dizziness, migraine, constipation, diarrhea (yes both) and bursitis, in my lower extremities. For those who don’t know what bursitis is, it’s inflammation, and collection of fluid around the joints which causes extreme pain when moving or walking. So yah… basically if I eat a cookie it makes me feel like I got hit by a truck. If unmanaged/ treated Celiac can cause serious conditions like anemia or intestinal/ stomach cancer. The good news is it’s managed by strict adherence a gluten free diet, the bad news is also that it’s managed by a strict adherence to a gluten free diet.

Remaining gluten free in day to day life is SO hard. I am certainly far from perfect at it. Gluten is in 75% of the worlds food, some things you wouldn’t expect are products like, American Corn Pops cereal, candies like whoppers, or KitKat bars, and in cheeses like blue cheese. It’s also a binding ingredient in many processed foods, or used as a preservative in common foods/ ingredients like suet.

Even a small amount of gluten can cause a reaction, so if someone butters their regular toast and then I use the same butter on my gluten free toast I can have a reaction. And it takes up to 7 days for the gluten to work its way out of my system, during which time I may or may not experience symptoms depending on whether or not my body wants to screw with me or not!

All this to say, living with Celiac is a challenge. You get used to it in every day life, you develop a routine, you learn what brands at your local grocery store won’t make you sick while still tasting like actual food. What restaurants have good GF options and where to find good gluten free booze…. that’s right people, I can’t drink regular beer… be sad for me, send me your rum. I can can drink that! You also learn how to cook! Which I have found great joy in.

This system tends to get blown to smithereens when you travel. ESPECIALLY abroad. But I go on at least one international trip a year and 3- four intercontinental trips, not mentioning local day and weekender adventures for the blog. SO, I have developed a system to manage my Celiac while traveling. It’s not fool proof, but hopefully it will help someone else, and save you some hassle on your next adventure.

The first key to managing Celiac on trips is Drugs, drugs, drugs!

I am basically a walking pharmacy, while I avoid taking the medications unless absolutely necessary its good to have them on you. You don’t want to be in the middle of a fantastic show in London only being able to think about your heart burn.

I pack the following:

  • Prescription nausea medication- you can get it from your doctor
  • Over the counter nausea/ heartburn meds like Pepto or tumms
  • Prescription anti inflammatory medications like Naproxen
  • Non prescription anti inflammatory medication like Advil
  • Prescription muscle relaxers
  • Icy hot or external application muscle relaxers
  • Essential oils that aide muscle relaxation, nausea and sleep
  • Sleep aides like Nyquil

… and that’s not counting what I bring for my COPD.

I know it seems like a lot but having these is a lot better than not. I bring enough that I can put a little in each of my bags and keep some on my person. I also research ahead of time local pharmacies and medication options in the countries I am going to. For example in England you can get higher strength anti inflammation medication over the counter for pretty cheap. So if I forget to bring my Naproxen on a walking tour of the London Underground and my bursitis acts up I can pop into a Boots and get something to push me through the day.

The point to all of this is, if I can travel, most of you reading this can travel. With enough preparation and research you can overcome most obstacles. BUT over all of that comes the decision to enjoy the good, focus on that, and not let the bad stuff, and symptoms squelch your joy. My Celiac disease is never going away. I can’t get rid of it but I can choose to rise above it.

(Image of me shooting targets in Northern Ireland on a working farm!)

Tune in next week when I post about how I find places to eat while on holiday, and drop a line/ comment to let me know of any specific questions you have about traveling with Celiac or chronic illness that you’d be interested in learning about!

For more information on Celiac Disease here is a link to

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