What is the first question people ask when they learn that you have celiac disease? For me, it’s usually “when did you find out? What’s the story there?” The answer is, as it is with most things related to Celiac Disease, “it’s complicated.” This is my Celiac story. I’d love to hear yours.
Growing Up: My Celiac Disease Story Begins
My celiac disease story begins when I was a kid.
Oddly, digestive issues aren’t something I really remember dealing with growing up. I lived a pretty normal life, with one notable exception.
I would get food stuck in my throat. A lot.
Not my windpipe – I could still breath totally fine. My esophagus. I could not swallow anything. Not even my own saliva. To this day, it is one of the weirdest feelings I have ever experienced.
I went to doctor after doctor. Specialist after specialist. Not a single person knew what was going on.
Every time that food got stuck in my throat, I would wait it out. Attempting to dislodge it by trying to make myself throw up. It always worked, even if it took an hour.
I’d come back to the table, and my mom would say “you need to slow down and chew your food better!” Cool, Mom, blame the victim (she regrets this to this day).
Imagine sitting down to a meal and worrying whether or not this one was going to be an issue. Not exactly ideal.
Going Away to College
I went off to college with no diagnosis. This is where my celiac disease story starts to get interesting.
Then one day, it happened. Business as usual – food stuck in my throat, trying to dislodge it, etc etc.
Except it didn’t work.
I did everything I usually did. Nothing changed. I had a chunk of my dinner stuck in my throat and I couldn’t swallow.
So I did what every self-respecting 18 year old does – I called my mom. I am lucky that I chose to go to college less than 30 minutes away from my parents’ house. I honestly don’t know how I would have handled all of the health issues had I been further away from home.
She picked me up and we went to the hospital. Eventually, they told me they would have to put me under to do an endoscopy and, I kid you not, this is what they said, “poke it out.”
2008: The Diagnosis
After years of no conclusive answers, I went to a new GI specialist, and they found two things.
I was #blessed with two separate autoimmune disorders, which is not that surprising knowing what I know now. At the time, it was pretty devastating.
One of them is celiac disease, the other is eosinophilic esophagitis, which explains the difficulty swallowing. They’re semi-related.
The cure, of course, was to go 100% gluten free. As a freshman in college, that was a big challenge. It took years for me to truly understand how to live life with celiac disease. It’s not just “don’t eat gluten.” It’s also don’t share pots and pans. Don’t eat food fried in the same fryer. Don’t eat oats because they’re a gluten-filled minefield.
Over the course of the next year, I ended up in the hospital with food stuck in my throat twice.
Fast-forward ten years – I haven’t had an issue with my throat in 5+ years, and I am completely off of all the oral steroids and proton-pump inhibitors they put me on to control the symptoms.
It turns out, if you go 100% gluten free, some of those issues start to disappear.
My Celiac Story
Today, a decade after I was first diagnosed, living with celiac disease is infinitely easier than it was at the beginning.
Looking back, I’m pretty stunned at how the doctor handled my diagnosis. He basically said “Yeah, so don’t eat gluten anymore. Got it?”
No wonder it took me years to figure out exactly what that means.
In the last five years, since about 2014 when I moved to San Francisco, I have really figured it out. I have my own dishes. That’s not quite accurate. It’s more that Alysha, my fiancee, has exactly one dish and one spoon dedicated to gluten. The rest of our shared dishes are gluten free.
Over time, as I got better at actually living gluten free at home, I started to think about traveling gluten free.
It started with a college graduation trip to London, Paris, and Rome, which opened my eyes to the fact that, with a little research, you can find gluten free food anywhere.
It might be doing the research to find a great dedicated gluten free restaurant in Paris, or it might mean getting comfortable cooking for yourself on vacation, like I did on my recent trip to New Zealand. Both options, and the many that live in-between, are a great way for celiacs to get out and see the world.
Since that trip, I have literally been around the world, and I have continued to add chapters to my celiac disease story.
Here are a few of the places I’ve been:
- New Zealand
- Europe (Amsterdam, Paris, Berlin, and Budapest)
- Africa (a safari in Tanzania)
- A bunch of cities in the US
- Mexico City
- The Canadian Rockies, Victoria, and Vancouver
Looking to book a trip to one of those places? Get in touch – I’d be happy to help you plan your trip, and I’ll do it for free.
You deserve the trip of a lifetime – I want to help you plan it. Let’s make it happen.