I Travel With Celiac Disease, Not Despite It

May is Celiac Awareness Month. 
As someone with celiac disease, I wanted to bring awareness of this autoimmune disease through my personal story.

Celiac disease, estimated to affect 1 in 100 people worldwide, is serious autoimmune disease in which the ingestion of gluten leads to damage in the small intestines.   

Gluten is a protein in wheat, barley, rye and other related grains.  It is found not only in food but also may be in things like medication, both prescription and non-prescription, vitamins, supplements, cosmetics, hair and skin products, even toothpaste.

There is no cure for celiac disease. The only treatment is to not ingest gluten. Not even a minuscule amount. Period.

Pre-diagnosis
Travel has always been a passion of mine.  My husband, Kosh, and I were always avid travelers and we made it a priority in our lives. It was a given that we would be spending every vacation day somewhere. The only question was where we were headed – did we want to dabble in exploring Chile, cruise through the Mediterranean, drive through New Mexico or relax on an island in the Caribbean? 

I was sick for about 7-8 years before being diagnosed with celiac disease. 

It was a long and complicated road.  I went through ups and downs with symptoms that never really added up.  I saw multiple doctors, went back and forth to see specialists, underwent test after test, only to continue to be misdiagnosed. I didn’t feel physically well most of the time; sometimes I was downright miserable. Of course, going through all of this took an emotional toll on me as well. 

Looking back now, I realize how low my quality of life was. But, because I trusted that my misdiagnosis was correct, I accepted being in this low place all the time as “my normal.”

It was many difficult years for us.  More than ever before, during this time, Kosh and I were so grateful for the positive things in our life. Travel was definitely one of those positives. We appreciated being able to see the world around us.  We savored every minute of it.  Though some of our travel days were tougher than others, it was still a welcome escape from the day to day and we were determined to experience everything we could.

A chance conversation
A chance conversation led to an introduction to a new gastroenterologist. Although I was hesitant about seeing yet another doctor, for some reason, this time it felt different. During my first appointment with her, she acknowledged something wasn’t right with me and that things didn’t add up for her either. For some reason, from the beginning, I truly believed she was committed to finding the root cause of what was going on with me vs. just putting band-aids on my symptoms. 

During the next several months, I underwent additional testing and diagnostic procedures, just trusting in the process.  I remember vividly the day 5 years ago when she shared the diagnosis with us.  I had celiac disease.  She thoroughly explained the test results, explained why I was feeling the way I was feeling and walked us through the next steps.

After we went through the details, I recall her saying something along the lines of “I don’t think you realize how bad you feel.  Once you make the changes, you will realize how good your quality of life can be.  It will take some time for you to heal.  You have accepted this state you have been in for all these years as normal but it’s not.  You don’t have to feel this way.”

It was a sigh of relief to finally know what was causing me to feel the way I was.  Ok, I thought to myself.  For the first time, this finally makes sense.

Then came part two
“I know you two love to travel so I want to prepare you.  You won’t be able to grab a slice of pizza anymore at the airport before you fly off somewhere.  It’s going to be difficult. You will have to think about food with every facet of your life in a way that you aren’t used to. And gluten free does not mean that it’s safe. You must make sure you are not contaminated with any gluten.”

I felt numb. I thought to myself, I don’t think we can travel anymore.  I did not allow the possible reality of that to set in at that moment. It was too much to process. 

After the diagnosis
First and foremost, I had to focus on getting physically better. By that time, I was very anemic. I was physically fatigued. I had an ulcer. The gluten had done quite a bit of damage to my gastrointestinal system and to my overall state of health.

Getting better didn’t happen overnight. During the healing process, as with other people who are newly diagnosed with celiac disease, there were plenty of ups and downs as my body adjusted and as we transitioned to our new normal way of life.

We learned how to read labels. Just because a package says “gluten free” on the front of it, we learned we still needed to read the fine print to review the ingredients and understand if it may still have traces of gluten due to the processing.

And, if a kitchen is not 100% gluten free, unless strict measures to avoid cross-contamination are taken, there is a risk of a trace amount finding its way into food.    

While it may seem like a trace amount wouldn’t matter, it can cause an adverse response to a person with celiac disease.  

Our life changed drastically.  In so many ways.  At home, we overhauled our kitchen. We changed what we ate. We changed what we cooked. Food become a central focus of what we did and didn’t do, where we went and where we didn’t.

We ate at home majority of the time. Or, if we needed to go somewhere, we took my food with me. We stopped going to restaurants. Often, we would skip social events. Every social gathering was awkward. Every meeting and conference at work where food was served was awkward. I never even told my colleagues. I never wanted to draw attention to myself about why I wasn’t eating like everyone else. Or, if I brought my own food, getting questions about why I did. There was also the nervousness about things like a crumb from someone else finding it’s way onto my plate when they were breaking apart their bread.

Food is so central to interactions and relationships with people. For those of us with celiac disease, we often can’t share the experience of enjoying and sharing food with others in social gatherings. I won’t lie, it can feel quite isolating.

Whether I was in a social situation or in a professional setting, I had fears of being perceived as overly cautious or of people feeling sorry for me.  I worried that people would think I didn’t trust them to make a gluten free meal for me, knowing their kitchens may not be safe and that I would have to turn down their well-meaning offer.  I also was concerned about people not taking it seriously, of people not really understanding and of people who thought they knew better. 

Gluten free does not translate to celiac safe.  It’s more complex than that, which is not something that is not universally understood.

And, unfortunately, like many other people with celiac disease, I have had very painful moments and interactions with people who just don’t understand the difference between gluten free and celiac safe.  And, at times, think they know better. Or, they compare it to how they don’t like gluten in their diet either.

Turning the corner
At some point, I started to experience brief moments of feeling better. 

Although I was still going through my adjustment phase, I realized that when I felt good, I felt so good.  In a way that I barely remembered ever feeling. 

Perhaps, this was what my doctor meant about not knowing how bad I felt.  One thing that I did know for certain – I never wanted to go back to feeling the way I did all those years. I was so determined to get to a point when I could always feel that good feeling that I felt in these brief moments. And, those moments lasted longer and longer as I went.

By that time, I also knew what it felt like to be contaminated with gluten, even in situations that were seemingly safe.  The response was simply awful.  I never longed for bread, pasta, cake or anything else with gluten in it.  I never wanted to feel that terrible.  Once we get the gluten out of our system, we become even less tolerant of it.  Our bodies reject even that smallest amount. I did not miss gluten at all.

To this day, I have never resented the fact I have celiac disease.  I never looked back.  I never wished for something different.  As I got better, I knew that I didn’t have to feel the way I did.

Not having gluten is a necessity for me to thrive, to be healthy, to feel good.  And, having celiac disease is part of who I am, wherever I go.

We still had to get back to the other part of who we were.  That big way our life had changed. 
The adjustment and healing period was tough, really tough.  It was physically hard for me and it was stressful for both of us. The natural inclination for us before my diagnosis was to get away from it all and travel.

However, we still had to process and make sense of whether we could or not. Should we even consider it? It’s challenging enough for us at home. Is this the right time? When is the right time? How do we do it?

There were some glimmers of hope which helped us sort through this.

By this point, we realized we couldn’t eat out at most restaurants, but we did find a couple of safe local options. At first, it wasn’t perfect. There was some trial and error and I did get sick from contamination on more than one occasion when I was told that my meal was gluten free.  After having these experiences, we made our list of a “million or so” questions to ask before we made the decision to eat at a restaurant, even if they had “gluten free” options on the menu.  If they didn’t like all of our questions, we opted out.  When something didn’t sound or feel right, we opted out, even if it was just based on our gut feeling. And, sometimes, when we asked the right questions, they would be honest with us and tell us, yes we offer gluten free options but we don’t change the pans between orders, we use the same grill tops or fryers for everything, etc.  

When we found a place that we enjoyed and that could accommodate me safely, it became one of our go to places.  It was almost easier with strangers than with friends and family to have those conversations.  We learned how to be advocates for me.

Plus, we were accustomed to always having gluten free snacks with us all the time. We always wanted to be prepared in a pinch. By then, we found our way to be around close family and friends comfortably, while educating them and setting the boundaries we needed to.

When we started to think about travel again, we did our research. At the time, I wasn’t yet in the travel industry, but I had always loved to do research when planning our travels. We knew the levels of awareness about celiac disease varied around the world. But our reality was that levels of awareness varied even right here in the United States. Even in New York City, let alone other parts of the country.

We had to come to terms with a few things
We couldn’t travel like we did before.  Some destinations may not be an option any longer.  We couldn’t just pick up and go as freely as we did before. We had to do thorough research.  We had to plan.  We had to be prepared.  What if I got sick? What would we do?  “Winging it” was not an option. I was nervous.

But, even if we couldn’t travel like we did before, we truly believed the joy of travel was still worth it. Of seeing new places, of meeting new people, of learning about other cultures, of appreciating the natural beauty of the world around us.

Something inside me said that I needed to overcome the hurdle to fully be myself again. Travel was so much a part of me. So, I committed to giving it a try.

Initially, I did it in baby steps. I intentionally chose situations that felt more manageable and strongly advocated for myself. I said “no” to situations that didn’t feel right. I tuned out the noise that came from a lack of awareness and understanding about the complexities of the disease. But, I continued to make decisions which were best for me. As a result, I became more comfortable as I went.⁠  And, as I went on, I was able to creatively find ways to make the most of each and every travel experience.

I can travel with celiac disease
Although I have had to change how I travel, I can and do still travel.  In fact, it’s made me a better traveler. Having been through all that I had and learning how to navigate my needs made me appreciate travel more than ever. 

In fact, it was during this time that I realized this passion for travel needed to be my work and I founded Wandermust Journeys. I knew if I could make the most of my own personal travel experiences, I could also help clients do the same.

In so many ways, I feel even more rewarded now because the human connection is that much more central to every travel experience I have.  Managing my needs requires conversation, requires communication and requires trust with people.  Those interactions have sometimes been amongst the most rewarding travel experiences I have had in my life and have made me realize that I can travel with celiac disease.

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