When a child is diagnosed with Celiac Disease, the focus is often on food, but the emotional, social, and mental challenges run just as deep. Today, I'm sharing a heartfelt interview with my daughter, Cassidy, about her experience growing up with Celiac disease, from elementary school to college. The questions came from you, the readers, after taking the time to respond to my Instagram story.
Cassidy's answers are from her point of view as a young adult after being diagnosed with Celiac Disease at seven years old. It's honest, encouraging, and full of insight for parents, kids, and anyone supporting someone living gluten free.
What it was like Growing Up With Celiac Disease
Q: How did you handle Holidays, Birthdays and School?
Cassidy: I didn't have to do it by myself. I was 7, so my mom would get me a cupcake to bring, or the people at the birthday party would order gluten free pizza after my mom talked to the parents.
Then, not long after getting diagnosed, our school stopped allowing treats and foods to be shared in the classroom. No one with food restrictions felt left out. At the same time, the school started a new tradtion called "party in a bag" for holidays and celebrations. Each student was given a brown paper bag to take home, fill with your favorite safe treats, then bring it back to school filled up on the day of celebration!
For holidays, I grew up trading Halloween candy with my brother after we went trick-or-treating. At Christmas, my mom made gluten free cookies ahead of time and we brought them to our family parties. My mom hosted many of our holiday dinners so she could cook everything gluten free.
Q: Did you ever feel Peer Pressure to try unsafe food?
Cassidy: No, it wasn't a big deal. I explained it to my friends like I had an allergy and they didn't question it. If you told someone you had a nut allergy, your friends wouldn't say, "here eat this nut". I also told them that I would explode if I ate gluten, I like to try to keep it light and not make it a big deal.
Q: What is the hardest part in general about living with Celiac Disease?
Cassidy: The hardest part has always been feeling different, especially when going out to eat for sure! When my friends want to go out to eat, they ask me where I can go, but there are such limited places that I feel bad having them go to the same place over and over. I don't like trying new places by myself just in case.
Food is such a social thing, and when you can't eat what everyone else is eating, it can make you feel left out, even if no one is trying to make you feel that way. I felt awkward if I had to ask for something, but my mom never let that happen.
Q: Any tricks for sleepovers or school events?
Cassidy: Always bring your own food, and always have a snack just in case- even if people say they'll have something safe. Having snacks I trusted helped me relax and actually enjoy being with my friends instead of worrying.
For sleepovers, my mom packs most of my food. At a few of my closest friends homes, they have cooked me eggs for breakfast, and my best friend's family even bought a separate pan to have to cook for me when I am at their house! My mom has always talked to the parents ahead of time to see what food was being planned, so she could have me bring something similar.
Q: Did you ever feel left out in school?
Cassidy: Sometimes. Be sure to talk to both the teachers, and school nurse so they are aware that your child has Celiac Disease. If food is still allowed in your classrooms, they can send out a list of class allergies so that the parents can accommodate all children.
Another helpful thing was to send in non-perishable gluten free treats and snacks that the teacher can keep on hand for special occasions.
Q: How can someone support a friend with Celiac Disease?
Cassidy: Make sure to always have a snack handy in your house that they can eat when they come over. Take time to understand cross contamination. Little things like that can go a long way to make a child feel included.
Q: What's your favorite gluten free snack?
Cassidy: Good Crisp! I love their gluten free pringles!
My go-to snack in my dorm at college is cheese slices with gluten free crackers, or gluten free pretzels with Nutella. I am able to go to a local store in town, or there is also a Target a couple blocks away from my dorm that carries lots of great gluten free options. Snacks that feel "normal" make a big difference.
Cassidy's aunt brought her a bag full of gluten free cookies and cupcakes to enjoy at a family birthday party. Support is huge!
College with Celiac Disease: The Hardest Chapter
Q: Did having Celiac Disease Affect Your College Choice?
Cassidy: No, I learned about the food after I had accepted, but didn't take it into account when sending in applications. Penn State was my first choice and being a big school, I am really lucky that they have lots of gluten free options both on campus and in town.
Q: What's been the hardest part of college with Celiac Disease?
Cassidy: Colleges advertise that they have options, but it lacks variation. I stopped going to the dining halls completely at lunchtime because the only option was salad or grilled chicken. It wasn't all the time, but often enough to be annoying. I cooked food in my dorm room at that time insread. You have to advocate for yourself constantly, and that can be exhausting.
Q: Did you register with the disability office?
Cassidy: Yes! We haven't needed to use it so far for any health issues. Before leaving for college we also requested the reasonable accomodations form from the college and had the doctor fill it out just in case I ever needed it.
The doctor did request availability of a separate microfridge for my dorm room. Since dorms and the space available is pretty tight to share, I took advantage of that accomodation to keep my food separate from my roommate.
Top tip: Talk to the Dietician and Cafeteria Staff!
Cassidy: Do it! They're nice. We met with a dietician and head chef during the accepted students day visit to learn about all of the gluten free options at different dining halls and their safety protocols. The chef offered to meet with me and create a 3 week meal plan based on my food preferences and needs.
Q: Does it get easier living gluten free?
Cassidy: Yes! You get used to reading labels, what ingredients to look out for, and familiar products you eat often. As time goes on, you also will get used to ordering out in restaurants, what to say and what to look out for. Eventually, you forget what gluten-filled food even tastes like!
By the end of high school, they had gluten free options on a piece of paper to check off when ordering meals(from Chic-fil-a, or pizza, etc) at my after-school band activities. It is much more common now, with so many more people getting diagnosed with Celiac Disease and food allergies in general.
Also, if you keep the same friends throughout the years, they and their families get used to it. It becomes normal for everyone.
Over time, you'll get more confident, and better at speaking up for yourself!
Questions for Mom: Parenting a Child With Celiac Disease
Q: How did you handle diet changes and telling Cassidy she couldn't eat certain foods?
Mom: It was heartbreaking at first. We focused on what she could have, not what she couldn't. Education, preparation, and making home a safe place were so important.
My first goal was to find substitutes for all of the foods she loved. That's why I created my Gluten Free Food Swaps Guide as a helpful resource for families just starting their gluten free journey.
Substituting our daily foods like pasta, bread and desserts was a priority. Learning what ingredients she could and couldn't have, and making a list of all of the naturally gluten free foods that she enjoyed eating.
A little later on, I swapped out everything in our house to make it a completely gluten free environment. At that time, her siblings were all much younger and were a complete mess with crumbs everywhere! I wanted our home to be a safe place for her.
She doesn't even remember a time that I had to tell her no to food she couldn't have!
Final Thoughts for Families New to Celiac Disease
Cassidy's journey shows that Celiac disease affects far more than food. It shapes confidence, independence, and resilience. If you're parenting a child with Celiac Disease or supporting someone gluten free, know this:
- It will be hard
- But it will get better
- And no one is alone in this journey!
If you have additional questions, please leave a comment below and we'll be sure to answer!
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