Love on Celiac Cruise - Greek Isles 2024

Two years ago, my sisters friend was diagnosed with celiac disease. She was 15 years old, same age as me when I got my diagnosis. My mom put me on the spot and said "give her the advice you wish you had when you were her age". Unfortunately, no one liked the honest things I had to say to her.

It's a marathon, not a sprint.

It sucks. And it's okay to know that it sucks.

Let yourself feel the moments when it sucks so you can get through to the next day.

I'm not thankful that I have celiac. Some people are there. I personally don't feel that way. It's a nuisance, it takes up a lot of my brain space and it makes every social interaction that much harder. There is not a single conversation I've had with anyone, where I haven't had to explain this food allergy multiple times. And people never get it. Even my siblings that also have it, we didn't experience it the same way. Cross contamination doesn't impact them the same way it does me. And I'm always dismissed when I panic a bit because someone dipped a spoon from the "normal" food into the gluten free food. My mother kind of got it, but she doesn't understand the emotional impact it has on us and how much it takes over every portion of our life. My father.... he understands the concept of gluten free. Maybe.

Having celiac really shaped how I socialized with people. It was just easier to not go out than to get angry at everyone for either ignoring the fact that I also needed to eat, or being angry when everyone wanted me to plan it all so that I could in fact eat with everyone. I became a very resentful person. So I just stopped going out and that was more comfortable. It was really annoying to have to explain to my Italian family please stop asking me a million times what you can make me at the family party. I don't want you to order anything for me, as kind as that is. The tricky part was, they were being thoughtful. But at the same time it didn't feel thoughtful. I felt like I was a bad person for saying no thank you. I wasn't trying to be rude, but I was always made to feel that I was. There was never any winning for me, and there was never any winning for the people around me.

Then I saw this thing for Celiac Cruise in a newsletter from the Celiac Disease Foundation. I could have one week of not having to worry about my food, there was an Oktoberfest theme, sold. Going on my first cruise changed so much for me. It let me know that there were ups to go along with the downs of having this celiac diagnosis. Celiac Cruise was the beginning of having a silver lining to hold onto in the marathon I was running in this race of an auto-immune disease.

So here's my love letter to Maureen and Connie, the founders of Celiac Cruise:

I have now been on two different types of cruises through your program and it has honestly changed my life. So much of my personality got left behind in my celiac diagnosis that it took these experiences to remember who I am. Someone that loved living life, that laughed. I am getting to see the person I would've been had I never had to worry about what I was putting into my body. I could've been a very chill, go with the flow person! (Probably not, but I can pretend.) But, I definitely might have had a social life.

The first celiac cruise I went on in 2022 inspired me to write and made me feel like traveling the world was possible. It was the first time I experienced no stress - for an entire week! Every since that first cruise, I make sure to scrape and save each and every penny I make from my jobs to make sure I can go on the next one. This past cruise had me feeling like I could accomplish anything. I kept annoying Maureen with all my ideas and "what ifs". If Maureen and Connie have been able to do so much good with their idea, and it changed so many lives for the better, it's been inspiring me to want to pay it forward in whatever way I can.

So now, when the next 15 year old comes to me and says "I just got diagnosed with celiac disease, what do I do?" Now, I have something positive to share. I can tell that 15 year old, yeah this sucks, don't let anyone tell you otherwise. BUT. There's these women that have an opportunity for you where you can feel like a person again. They're going to give you a little taste of normalcy that you think is long gone. They're the best kind of super heroes.

If anyone has any questions about my person experience with Celiac Cruise, please reach out to hieatexplorelove@gmail.com . But also, check out Maureen's story of how this all got started in the first place: https://celiaccruise.com/our-story/. Thank you to Maureen and her family for making this all possible!

P.S. - To my ship parents, Jim and Karen, to our friends Jay, Jan, Maria, Tony, Shannon, David and Kim the times I took from my experience in meeting all of you I will never forget. It's so exciting to see how we will all meet again, because we KNOW that will happen!