Living with Celiac Disease

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Could you please tell us a little bit about yourself?

 

I'm Lexi Carswell. I was born and raised in Banff, Alberta, Canada and this is my first year at SMUS. I'm excited to come back next year, and I have celiac disease. 

 

Would you mind sharing a bit about your condition and your experience especially as a teen?

 

Celiac disease is an autoimmune disease that affects the lining of the small intestine and basically, you can't eat any gluten. It's really strict about cross contamination and everything, which makes it hard to go out for dinner with friends or if someone's just sharing snacks or anything like that, it makes it really hard because you always have to be careful. So it's really tough with homemade goods people make and Sun Centre* as well. So, I mostly just get a lot of chicken and rice… 

 

Has living in boarding school been hard for you with celiac? 

 

A little bit, and just because a lot of gluten free food is more expensive. So if I want to go out and buy snacks, it does cost more which makes it a bit trickier. And with the dining hall, it's just a lot of repetition. But so far, I haven't gotten sick yet from the Sun Centre*, which is good. 

 

When did you first find out you had your autoimmune condition? How did you feel?

 

I found out only last March, so pretty recent. My sister was diagnosed before me, because she had rashes on her feet and our doctor was like, "Oh, I think you have a hand, foot and mouth disease." Turns out it wasn't, it was celiac. I was dreading not eating goldfish for the rest of my life and I was like, “Oh my god, I really hope that this isn't me as well.” Right after both my parents came back negative, they were like, “We think we should test you as well,” because I had a bunch of stomach problems before I stopped eating gluten. It came back positive and it was… pretty shocking. It was unexpected.

 

What are some challenges you have faced with celiac and how have you overcome them?

 

It's kind of hard not being able to take people's offerings of food. It also makes some social situations awkward. For example, when a bunch of my friends want to go for dinner, it’s hard to make everybody accommodate to the one need that I have. I either choose between eating before or after we go out for dinner and just not getting anything at the restaurant or making everybody change their plan to accommodate what I've got going on.

 

Are there other challenges people with celiac face that are not regarding food? 

 

Over time, it can affect a lot more than just your gut health. It can make you more susceptible to cancers and things like that and basically can cause a shorter lifespan if you do come in contact with gluten. But it’s not just eating it. For some people, it's so severe that if there's gluten anywhere in the air, they can get sick too, and it will keep eating away at their small intestines. So there’s a scale of the variations of celiac.

 

How has your mindset now toward your condition shifted from your mindset before?

 

At the beginning, I was really upset at the fact that I would never get to eat good food ever again. I was really distraught about that, but I got lucky because my dad's a professional chef, so he was really able to make those accommodations. But I've kind of just realized that I feel a lot better since I stopped eating gluten. So it's like, I'm giving up eating good tasting food, but it comes with the positive of not feeling terrible every day. 

 

Are there any important insights or lessons you learned through your journey since last March? 

 

I think realizing that you're giving up something quite small for a big outcome, to not feel sick every day. It doesn't only affect people's guts. There's hundreds of different symptoms that people can have, like brain fog and everything. When my sister was diagnosed, she had really severe ADHD and that's gotten way better since she stopped eating gluten. So it doesn't just affect your diet, but also kind of socially, how you interact with people, because it can affect your mental as well. 

 

Do you have any messages for kids who are going through something similar?

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Just to keep fighting and realizing that whatever you're doing to help yourself is going to be worth it in the end. I think it's important to have a positive mindset about it, and just to know that, it's not detrimental in the end. 

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Awesome, thank you so much.

 

Thank you guys, that was great!