I’ve connected with many parents of celiac children since I started this newsletter almost a year ago. Most of the people I’ve spoken with were not familiar with this condition when their child got diagnosed, so it’s often a big learning process for the whole family.
I’ve also spoken with quite a few teens and young adults who were diagnosed with celiac disease as children. From both parents and adolescents, I’ve heard that navigating school is one of the biggest challenges for kids with celiac disease.
With the new school year now underway, I wanted to share advice to help parents (and their celiac children) have an easier and more enjoyable time. I chatted with my friend , founder of Next Level Gluten-Free and parent to a celiac son, about how to help your child have a safe and stress-free school year.
Back-to-school tips for parents of celiac kids
Here are six tips from the parent of a celiac child to help you—and your kiddo—navigate the school year.
1. Write out a plan
Rachel suggests writing out a plan for the school that includes a description of what celiac disease is, how it affects your child, and any modifications they may need. When putting together this plan, some of the questions you’ll want to think through include:
Does your child need unlimited bathroom access?
Do they need access to a microwave or special accommodation in the lunchroom?
How are you going to handle lessons at school that utilize gluten, like paper mache, flour in science experiments, or building pasta towers? (Fun fact: Play-Doh contains gluten.)
Does your child need more absences than the norm?
Many parents like to use a 504 plan for this, notes Rachel. According to Beyond Celiac, “A 504 plan is a legally-binding agreement that is part of the Americans with Disabilities Act (ADA).” As Beyond Celiac explains, celiac disease qualifies for a 504 plan, which can be carried with your child even through their college years.
“If you choose to create one, this document will be on file with the school and follow your child as they grow,” says Rachel. “You can modify the document as your child grows and needs change.”
Want more information on how to go about this? Rachel shares a few examples of celiac 504 plans from the Celiac Disease Foundation, Mass General, and the Gluten Intolerance Group.
2. Meet with your child’s teachers
Something else you’ll want to do is meet with your child’s teachers and any other school staff involved in your kid’s day-to-day education, suggests Rachel. She likes to meet with the classroom teachers, special teachers (such as physical education, library, art, music, etc.), lunchroom staff, and the school nurse.
“You and your child live with celiac disease every day, but others probably don’t,” she points out. “It’s wonderful to meet in person and open the door to questions and qualifications.”
During this discussion, you can talk through nuances of your child’s classes, especially when it comes to food. For example, you’ll want to address whether teachers hand out treats, what class parties entail, and how you’re going to handle all of that for your child. All of this information can be added to the written document so everyone is on the same page, says Rachel.
3. Get substitute teachers up to speed
Don’t forget about substitute teachers! Whether a sub is covering for a teacher for just one day or they’re stepping in for a longer time, it’s important that they’re up to speed on your child’s needs.
“Ask that written instructions about your child and their needs are left for substitute teachers,” suggests Rachel. “Everyone gets sick sometimes—give your child's future substitute teachers the info they need to keep your kid safe!”
4. Stash safe food in your child’s classroom
Consider keeping a stash of safe gluten-free food in your child’s classroom, says Rachel. Thnk about it: What if your kid forgets or drops their lunch—or what if there’s a surprise celebration in class?
“Having a box of shelf-stable food at the school that you know is safe can be so great,” says Rachel. Some of her favorite options are tuna packs, meeat sticks, protein bars, and of course, gluten-free treats for any celebrations. “The school may even let you keep some things stashed in a freezer,” adds Rachel.
5. Check in with your kid regularly
It’s not just the school staff you’ll want to check in with—you should be talking to your kid too to address their concerns.
“Let them know they have a whole team to help them and ask them to let you know what’s working and what’s not,” suggests Rachel. “Make sure they feel empowered to ask questions—everyone makes mistakes, and they can always double-check to see if something is truly gluten-free.”
Keep checking in with your child as the school year goes on to see how they’re doing and make adjustments to your plan as needed, says Rachel.
6. Prepare fun gluten-free lunches
This one’s optional—but if you have the resources, then think about getting some special items for lunch, suggests Rachel.
One way to make lunch more fun is to pack it in a bento box, says Rachel. You can find good options on Amazon here and here.
Does your kid love pizza for lunch—or are there often class pizza parties? While pizza can be tough to pack, Rachel says a pizza slice-shaped container plus some hot packs will do the trick.
Finally, a lunch wrap (like this one) can double as a placemat to keep your child’s food from touching any surfaces that’ve recently come into contact with gluten, such as a cafeteria lunch table that may be littered with crumbs, says Rachel.
She also mentions Flatbox, a patented lunch bag that opens up into a placemat and is specifically designed for kids with food allergies.
Bonus tips to help you through the school year
Here are some previous newsletter issues I’ve published that you may find useful, whether you’re the parent of a celiac child or you’re a kid or teen navigating a celiac diagnosis.
What It's Like to Parent a Child With Celiac Disease: Gaby McPherson, RD, a practicing dietitian, health and nutrition writer, and mom to an elementary school-aged celiac daughter, shares how she handles a shared kitchen at home, how she navigates social situations (like birthday parties), and what she does to keep her daughter safe at school.
How to Navigate College With Celiac Disease: Gluten-free blogger and recent college grad Paige Merz shares her experiences (the good and the bad) of navigating college with celiac disease. From sharing a kitchen with roommates to handling a college dining plan, we talk about it all here.
How You Can Help Kids and Teens Recently Diagnosed With Celiac Disease: Recent high school grad Avery Leppo, founder of Celiac Chat, a free mentorship program for celiac kids, opens up about her childhood celiac diagnosis and shares the social challenges that came along with it. You can also learn how to sign up as a mentor or mentee here.
Growing Up Celiac: Beyond Celiac ambassador Daniel Yadgaroff talks about being diagnosed with celiac disease at three years old and how his family managed his diagnosis. He shares how he navigated his school years with celiac and how his family adapted to his gluten-free needs.
also has an excellent gluten-free manual for family, friends, hosts, teachers, and more if you’d like more intel from another parent of a celiac child:
Are you a parent of a celiac child? How do you handle your kid’s celiac disease at school? Drop a comment with your tips to help other families!
Disclaimer: If you click on a link, I may get a small commission. This helps support this newsletter so I can keep writing it.
Thank you so much for including me Christina!! Navigating school can be such an undertaking and the schools vary so much in their methods and response!
Great ideas here. It all comes down to preparation as usual. Fail to plan and plan to fail. Especially with the information to give to teachers and the school, this can help every kid who comes through after them. Raise the awareness for your kid and everyone else benefits.