Personal Update: Celiac Disease Diagnosis

Hi all! This post is going to be a personal update, which isn’t something I do on here too much. But I wanted to share with you all that I was diagnosed with celiac disease last month.

What is Celiac Disease?

For those who don’t know, celiac is an autoimmune disease, in which reactions are triggered by gluten — a protein found in wheat, barley, and rye. It turns out that every time I was eating bread or drinking beer, I was damaging my small intestine. And this means that not only was I not able to absorb nutrients from food, but it also was putting me at a heightened risk of cancers and osteoporosis, as well as other autoimmune diseases like Type 1 diabetes or multiple sclerosis.

I personally didn’t know much about celiac disease before this. Though I’ve been trying my best to learn over the last few weeks! One thing that a lot of people aren’t aware of is that gluten in your food isn’t the only concern for celiacs. Even cross-contact (often called “cross contamination”) can be an issue.

So, what is cross-contact? Cross-contact is when a gluten-free food is exposed to a gluten-containing food — or even something that touched gluten. For example, if someone cut a piece of bread and then used the same knife to cut a gluten-free food. This is something I’m finding the most difficult so far — communicating about cross-contact while also not trying to come off like the most annoying person in the world.

While a lot of restaurants in Spain seem to be good about labeling gluten and other allergens on their menus, the cross-contact thing is trickier to handle. Like, yes — you brought me a sandwich on gluten-free bread, but did you use a separate toaster from the regular bread? Use a different knife for the butter? Were there gluten crumbs in the butter? Did you change your gloves before touching my food?

It honestly sounds so over-the-top, and it’s kind of hard to believe that tiny little amounts of gluten can cause that much of an issue. But unfortunately, even a few crumbs can trigger the autoimmune response, causing intestinal damage that can take weeks to months to repair.

How I Got My Celiac Disease Diagnosis

Now that I’ve been reading about celiac disease, I’ve seen lots of stories from people who have taken years to get a diagnosis. I suspect that I’ve had it for several years at least, but from the first time I went to the digestólogo (“digestologist”) doctor here in Spain, the whole process took about six weeks from start to finish.

First, I had some specific digestive labs done on a Friday. By the following Wednesday morning, lab results were in my patient portal, and I saw a result in the “Celiac Study” section that was flagged: my tTG-IgA number was 257.04, and the normal/reference range value for the lab was supposed to be less than 5.0. 😬

The next week, I had a follow-up with my doctor, who told me that it was likely that I had celiac based on those numbers, and the next step was to schedule an endoscopy and biopsy to verify. At that point, she told me: Do not stop eating gluten. That’s because if I stopped eating gluten too early, the “damage” they were looking for may not be as easy to find in the endoscopy/biopsy.

So about three weeks after that, after a Guinness-filled trip to Ireland and Northern Ireland, I had my endoscopy. I’d never had anything like this done before, and it was my first time having a procedure done in Spain. It went pretty smoothly and they told me I could check the patient portal for my biopsy results; in the meantime, I left the appointment with a print-out of my endoscopy images. The doctor told me that my small intestine showed classic signs of celiac disease and he recommended going gluten-free at that point.

That night, I had The Last Gluten Supper at our favorite Italian pizza place down the street.

And the next week, I got my biopsy results. The pathology came back positive for celiac as well, so now it’s really official.

How This Is Going To Impact My Life and Travels

Luckily, we cook a lot so it hasn’t been hard to go gluten-free at home. But it’s tough to think about what travel is going to look like moving forward. Though it’s definitely going to depend on the country.

For example, in Italy, apparently celiac is super well understood — and if a menu item says “gluten-free,” then it’s legally required to be free from cross-contact as well. In fact, celiacs in Italy get a tax credit to help offset the fact that gluten-free food is more expensive. (This hasn’t come to Spain yet, but the Spanish Celiac Federation is working on lobbying for it!)

But what’s really making me nervous is thinking about our upcoming honeymoon to Japan, Taiwan, and South Korea. I’ve been saying all year: “I’m so excited for all the food in Asia!” And now I feel like I’m not going to be able to experience everything that I want to. 🥲 From what I’ve read, gluten-free isn’t really a concept in Japan. Only 0.17% of people there are celiac, just based on different genes in their population, and so it’s not well understood. It’s going to be really tough to navigate, especially since I’m still new to this.

Considering that trip was going to be my first time traveling with celiac, I decided to book a quick girls trip to London with my friends, which is where I am right now. 🙂 I thought it might be easier to handle for the first time in a country where I speak the language natively, and where celiac is much more common.

What This Means for The Girl Who Goes

There are plenty of celiac-specific travel blogs out there, and I’m not planning to pivot The Girl Who Goes into a celiac blog. Since it’s going to be a huge part of my life from now on, it’s not something I’m going to ignore, but it’s not going to be my sole focus, either.

You can expect the same type of content from me that I’ve always had, but maybe with a few more references to good gluten-free options. And I’m not going to be depriving Matt from amazing glutinous food, so I’ll still be recommending things like that, too! I also will likely write a post here and there related to celiac and travel — but if that doesn’t apply to you, please stick around for whatever posts come after that. 🙂

Also: Apparently only about 30% of people in the U.S. with celiac disease are actually diagnosed. Which means that if you have any of these symptoms, it could be worth talking to your doctor.

Learn more about celiac disease from the Celiac Disease Foundation.

 

Thank you so much for being part of my community! I’m looking forward to continuing to travel and sharing more tips with you all. 🙂

🤍 Cathy