Traveling with Celiac Disease
Christina Kantzavelos is a psychotherapist, professional content creator, world traveller and celiac disease sufferer based in San Diego. Before receiving her diagnosis of celiac disease in 2012, she experienced indigestion, bloating, foggy brain, canker sores, acne, anxiety, panic attacks, migraines, ovarian cysts and keratosis pilaris (chicken skin) on her arms. On receiving her diagnosis, she was shocked and upset at the prospect of living a life without gluten as is prescribed by the condition. Today, however, she documents her travels and tells people how to live a gluten free life while traveling the world. LetsGetChecked is joined by Christina to share her experience of traveling with...celiac disease.
For people who don't know, what is Celiac Disease?
Celiac Disease is a serious autoimmune disease, triggered by consuming a specific protein found in wheat, barley and rye. Eating gluten (even a very small amount), causes the immune system to attack the small intestine, making it difficult for the body to absorb proper nutrients.
Leaving celiac disease untreated can lead to some serious health consequences.
Your publication is cleverly titled "BuenQamino" - how did you get started on this?
I completed the Camino de Santiago Pilgrimage, a 500-mile/800 km walking pilgrimage across northern Spain in November 2015. It was during this journey that I realized my true passion for travel writing and blogging, as I wrote daily for family and friends following along at home. 'Buen Camino' means 'good path,' or 'good way,' and is commonly said amongst people (pilgrims, as they care called) passing by throughout the pilgrimage. Hence the name, BuenQamino. Why a Q? The 'C' was already taken. So Qlever!
I initially created BuenQamino to inspire others to travel, but after realizing how much work and research I was putting into my own trips planning around dietary restrictions, I decided to focus on Celiac, Gluten-Free, Allergen Friendly travel.
What were the main symptoms you were experiencing before you found out you had celiac disease?
Oh, gosh... Everything, and then some! I had chronic GI issues, indigestion, bloating, foggy brain, canker sores, acne, anxiety, panic attacks, migraines, ovarian cysts, keratosis pilaris (chicken skin) on my arms, etc. I was sick all of the time.
How did you deal with these symptoms before going to the doctor?
I honestly ignored them, because I didn't know any better. I was in grad school during the worst of it, which provided me a distraction I could prioritize over my health.
What was it like when you found out? What was the first thing that went through your mind?
First of all, I never had acne until grad school, and basically my own vanity (not any of the other awful symptoms listed above) which brought me to see a doctor. Dermatologists kept giving me cream after cream, but nothing helped. Upon a friend's recommendation, I went to see a naturopath who almost right away was able to diagnose Celiac. I went to a gastro soon after for the endoscopy.
I was bummed at first, because I was one of those ignorant people, who thought being gluten free was a fad diet, and essentially, not real.
So, the first thing I thought was, am I being punished by the gods for my ignorance?! On the other hand, I was relieved to have some answers for my many health concerns.
How did you deal with your diagnoses in the weeks that followed?
I started on an elimination diet, which made everything I introduced thereafter taste amazing. I read everything I could about being celiac and gluten free, and had a friend with a gluten sensitivity who supported me during those first few weeks, and moving forward. I think the challenging part was learning which items have gluten hidden inside, and discovering how gluten is commonly used as a filler in so many items. Why does salad dressing need gluten, or soy sauce, or gum, or makeup? Even today, I am still learning, and sometimes the hard way.
Like, envelope glue, that has gluten! Strange, right?
Don't lick it, trust me!
You are a foodie, how did your diagnoses affect your diet?
Changing my diet changed my life for the better. Although I can't go around trying everything, like I used to and still very much want to, I have to remind myself that I thoroughly enjoy feeling good and healthy, rather than crappy. I learned that we as humans (regardless of dietary restrictions) should be eating whole foods, such as veggies, fruits, nuts, seeds, meats, etc. I've also learned how to get really creative with just these basic whole foods, while still keeping gluten, dairy, soy, alcohol, refined sugar and high histamine foods off the table. If there is something my foodie soul wants or yearns for, I will find a way to recreate it at home.
How do you find a way to balance your dietary requirements and travel?
This depends on where I am in the world, and for how long I am there for. I wrote an E-guide on surviving being Celiac or Gluten Free while Traveling, because it's such an important topic for us. I need to do a lot of research ahead of time to determine what I will have access to in restaurants, markets and kitchens, and decide how much of my own food I need to pack.
I'm usually pretty good about it, but not always, on the Camino, I struggled quite a bit because a) Spain isn't particularly gluten friendly, b) you can only eat paella so many days in a row. I definitely wasn't eating enough calories, in relation to how many calories I was burning. If we were fortunate enough to have our own kitchen, then we would usually purchase salad materials, eggs and rice. I also took advantage of any of the larger markets we passed along the way, because they often sold Schar products, which we would stock up on (as much as we could in our small backpacks)! I've now heard there are more options on the Camino Frances, which I am very happy about.
What words do you live by?
Never postpone joy!
How do you manage your condition now?
I continue to eat healthfully, and constantly educate myself on any new research or information. I also remain in online support groups, and follow helpful blogs and people in the community.
Has your blog acted as an outlet for your travels and dietary requirements?
Yes, I literally reference my own e-guide and travel checklist before I travel anywhere. Meanwhile, I continue to write and post about any new information I discover on my travels, or in general. The more information there is out there regarding celiac disease, the easier it will be for all of us.
What advice would you have given yourself on finding out that you had celiac disease?
I would have essentially given the same advice to anyone else who recently found out...
A) Breathe... It may be a shock, but it's ok. You are definitely not alone.
B) No, this is not the gods punishing you for making fun of the 'gluten fad.' However, this is a lesson in ignorance.
C) You are about to feel worlds better. That bloat you have will be gone in no-time. Same with that acne, chicken skin, foggy brain, etc. I have a feeling you won't miss gluten after you begin to feel better.
D) You are going to become an amazing cook. No, I'm not kidding. No, I know your version of cooking is ordering something to-go or delivered and then placing it on a plate. You seriously will learn how to cook, and will be great at it.
E) Research everything you can about what contains gluten, even all of the hidden stuff. Go through your pantry, get rid of anything you put inside or on your body (food, lotions, makeup, etc.) that may contain gluten. Don't lick envelopes, etc.
F) Join an online support group. Oh wait, you're too cool to have Facebook. Swallow your pride, and make a fake account.
G) Sometimes it will be challenging. People may not understand, and/or will be ignorant towards Celiac Disease. Take this time to be compassionate.
H) If you don't know if a restaurant, house, party, etc. is serving something you can eat, then eat before hand. This will guarantee a full belly, and less awkwardness all around. Also, always keep protein snacks on you!
I) Go on and have a pity party. You get a solid week of this and one day, every month thereafter.
J) Someday, a little place called Nectarine Grove will open up and serve Cinnabon worthy paleo cinnamon rolls. Be patient.
K) Your life is about to change for the better. I'm so happy for you.
Read: What is Celiac Disease?
Written by Hannah Kingston | Approved by Medical Director Dominic Rowley