My Celiac Disease Story: Diagnosis to Thriving
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.
Drumroll please.
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:
- Australia
- New Zealand
- Chile
- 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.
Matt,
Thank you for taking the time to share these adventures. I just moved near Sacramento and found your page here. I’m excited to try Pushkin’s on my date night with my wife in a few days. As for your diagnosis story it is incredible the similarities and differences between them all. I found out at 26 years old that i have Celiac Disease after having symptoms of uncontrollable and inconsistent flatulence since at least 5th grade. Nearly 7 years later i found out i have Sjogrens Syndrome as my accompanying autoimmune disease. I would always get some smaller food or pills stuck behind my throat (in it’s own chamber) and i couldn’t describe it other than ‘overactive mucus’ which finally translated to ‘lack of saliva production’ (as well as eye lubrication). I’m excited to find some good eats finally as it has been 10 years since diagnosis and i have not had very many dedicated restaurants (including in Las Vegas).
I’m so sorry I missed this! I can’t wait to go back to Pushkins – they have a new donut/ice cream shop in Sacramento called Babes that looks amazing! All of the diagnosis stories generally start with “doctors couldn’t figure it out” and then there’s 5-10 years of trying different things, then a diagnosis, then 2-3 years of trying to figure out how to live with Celiac Disease. Most of them follow that pattern, and we should collectively figure out how to do better!
Hi Matt – I stumbled upon your page when I was trying to find gluten free restaurants in Victoria, BC. I have to say, having a easy to find list of gluten free restaurants available takes the anxiety out of traveling for me. I was diagnosed last October and it’s been a struggle eating out (especially when I love tasting new cuisines and dishes). Just want to say a big thank you for putting a list together! 🙂 I’m sure this will help many!
I’m glad you found it helpful – that’s the idea! Eating out can be tough, especially outside of major cities where there aren’t that many options. We love cooking, so one of our favorite things to do when we travel is explore the local markets / stores and pick up some local ingredients to cook a meal for ourselves. Which means we can basically travel anywhere in the world, because you’ll always find things like rice and potatoes, meat and eggs, and fruit and vegetables.
Hi Matt,
I found your page when I was looking for safe places to eat on the Pacific Northwest, for a – hopefully- vacation this fall. Your website/blog has already been incredibly helpful to me, I feel like I’ll be reading every single page lol. I was diagnosed with celiac disease last November after dodging the bullet of a diagnosis since I was 5 years old (time of my first negative biopty but positive antibodies), a shy 25 years long. I usually travel a lot for work, and while this pandemic is keeping me on the ground, I know it will be happening soonish again, and with your help I’m feeling so much more prepared. I’ve been saving all the restaurant recommendations in both US as Europe (my usual places of work travel) that are dedicated GF or celiac-safe and been learning a lot from your tips and tricks about what to bring on a trip. It’s been quite challenging to finally get my celiac diagnosis, as I got it on top of a selective-IGA deficiency diagnosis meaning I’m really vulnerable to more auto-immune disease (I already have Hashimoto’s too), and I just desperately want to close that window as much as I can. You’re making a great difference!
Thanks for the kind words, Melissa! My diagnosis was a bit of a journey too, and I too have multiple autoimmune diseases (I don’t know if I have the same selective-IGA deficiency). I’m continually flabbergasted at how much easier it’s becoming to find GOOD gluten free food around the world, and I’m glad I could help you feel at least a little bit more prepared so you do some traveling. Cheers!
Thank you so much for your story! Along with a newer Celiac diagnosis I also have eczema. I feel I finally have an answer to food getting stuck in my throat as well and it’s something that I can take back to my GI. You are so right in how you described it, I found that slowly sipping food grade peppermint essential oil in warm water helps but like you I want to sit down to eat not have that thought or hope of please don’t let anything get stuck. To new adventures in eating!
Yep, I know that feeling. Luckily, I haven’t had an issue with food and my throat in years at this point, but it’s still always lingering in the back of my mind as a possibility, which isn’t great. To eating all the delicious (gluten free) foods!