Hi!

My name is Cassie! That name might sound familiar because my parents started Cassie + Friends after I was diagnosed with juvenile idiopathic arthritis at 20 months. I am now 17 years old, in grade 12, and taking a break from filling out university applications as I write this. Time sure flies. But for now, I want to share more about my diagnosis.

One morning (back when I was 20 months old) I woke up and couldn’t walk – my knee was so inflamed. Immediately my parents took me to the hospital. After a frightening series of tests, we ultimately received a diagnosis of JIA. But that’s not all.

When a child gets diagnosed with JA, a diagnosis of celiac disease can sometimes go hand-in-hand. After dealing with arthritis for some time, and getting sick from almost everything I ate, I was tested for celiac. The results took a long time to come back but when they did, it was confirmed: celiac disease.

Since I have been celiac for so long and always had this way of life, it feels pretty normal to me. For as long as I can remember I haven’t been able to eat gluten and that was just that. But when I reflect on some of the experiences that were impacted by being celiac, I realize just how much it can interfere with day-to-day life.

For example, when I was really little, going out for dinner was difficult. At that time, no one really knew what gluten-free was let alone celiac so it was hard to explain how strict it was and what could be done. Every time we went out, the chef would have to come and talk to us while my parents explained the issue. This – along with being a typical 5-year-old picky eater, would usually result in my parents having to order me something wildly expensive from the menu. If there was even the slightest bit of cross-contamination, it would result in a stomach ache and diarrhea, and with straight gluten, I would definitely throw up.

As you can tell, it was extremely important that I followed this diet.

A few times, my family and I traveled to places where English was not the first language which made it quite difficult to explain the severity of my allergy. Often I would receive food and be skeptical if it was truly gluten-free. Thankfully, my brother has a sixth sense of being able to try something and decipher if it is gluten-free or not. That was found to be quite useful on trips, although he hates anything gluten-free.

Now ‘gluten-free’ and ‘celiac’ are much more well-known terms and most restaurants have better food options. The main point that I have to continue to clarify is that this is an allergy and not just a preference, but I have a memorized script for that! And although I am a bit less picky, I still ask for many adjustments to the order.

There are definitely times when I feel like I am missing out and there are certain foods I really want to try. Or I will be out with friends at a restaurant and feel frustrated with the difficulty of ordering. Although, eventually it is all forgotten about and thankfully there are so many substitutes and understanding of celiac today.

My friends are quite supportive and some of them really go out of their way to accommodate me. In fact, one of my closest friends has even made sure to have a separate pot for me to make gluten-free mac and cheese! And, at birthday parties, since I could never have the cake, my mom would send me a cupcake so I didn’t feel left out.

I think I am quite lucky to have always been celiac; I don’t know any different and I can’t even remember what bread tastes like. Although it may seem like a horrible addition on top of juvenile arthritis, celiac is a manageable disease that has many solutions. It can definitely be a hassle sometimes and takes some getting used to but eventually, it becomes second nature.

Thank you for reading! I hope my story has been helpful to you and your family. I am really excited to be speaking at our upcoming webinar “What’s Your Gut Telling You: JIA and the Gut Microbiome Connection” on Tuesday, November 29 at 4:30pm PST / 7:30pm EST. You can register and learn more about the session here.

I hope to see you there!

Cassie