School, Daycare, and 504 Plans: Helping Gluten-Free Kids Stay Safe

Sending your child to school after a celiac diagnosis can feel absolutely terrifying. 

Suddenly, you're worried about everything: who's watching what they eat, whether the teacher understands cross-contamination, what happens during classroom snacks, birthday parties, art projects, and field trips. If your child is older, you may also wonder if they'll actually speak up and advocate for themselves. 

If you've ever laid awake running through these scenarios, this episode is for you. 

We're diving into school, daycare, and 504 plans for gluten-free kids, discussing which protections really make a difference, how our approach evolved as our children grew older, and practical ways to make school feel safer without becoming completely overwhelmed. Plus, I'll share one simple accommodation that made a huge difference for our family—something many parents don't realize they can request. 

Save money, and no more guessing for dinner!  Use code GFE to get 20% off annual membership at thedinnerdaily.com. Plan meals for less than $4/month and save money at the grocery store!

Transcript

Personal Disclaimer And Big Fears

Carrie Saunders 0:00

Quick reminder before we get started on this episode. This podcast is based on my personal experiences and isn't medical advice. Sending your child to school when they are gluten-free and especially after a celiac diagnosis can feel absolutely terrifying. Suddenly you're thinking, who's watching what they will eat? Will the teacher understand cross-contamination? What about classroom snacks? Birthday treats? Art supplies? Field trips? And if your child is older, will they actually speak up? If you've ever laid awake thinking through all of that, this episode is for you. Today we're talking about school, daycare, and 504 plans for gluten-free kids, what protections actually help, how our approach changed as our kids got older, and how to make school feel safer without becoming completely overwhelmed. And stick around because I'll share the one thing that made a huge difference for our family that many parents don't realize they can ask for. Let's dive in. Welcome to the Gluten Free Engineer Podcast. I'm your host, Kiri Saunders. In 2011, I was diagnosed with celiac disease, a moment that changed everything. But I was determined not to let it hold me back. With my two engineering degrees, I set out to reverse engineer the gluten-free lifestyle, breaking down recipes, safety tips, travel hacks, and everything in between to rebuild a life I love. Whether you have celiac disease, gluten intolerance, or simply choose to live gluten-free, this podcast is for you. Join me each week as we simplify the gluten-free lifestyle, make it fun, and prove that you don't have to miss out on anything. Welcome back

Why School Feels So Risky

Carrie Saunders 1:33

to the show. Today we're talking about our children at school, daycare, high school, field trips, etc., when they are needing to be gluten-free. It can be something pretty scary that we deal with, especially if they're celiac. And I know those of you out there who are listening who also have children who have food allergies, I can relate to how scary that can be from my own experience as well as from a friend and family. So the return back to school, especially after a celiac diagnosis, is one of the harder transitions after diagnosis because at home you can control the food, you can control the services, you can re-control the routines. But at school, what is it over there? It's chaos, it's snacks, it's shared tables, especially if it's little kids, it's little kids with, you know, the goopy fingers or whatever the heck they were just eating, touching everything else. Um, it's classroom treats, it's substitute teachers who may not, you know, know enough about your child, it's field trips. School is where gluten-free gets very real very fast. So

What A 504 Plan Does

Carrie Saunders 2:36

I hinted to this a little bit and earlier, but so first, what is a 504 plan? That's something you can get here in the United States, and I'm sure that there are some other things, other things equivalent in other countries. It is a formal accommodation in the United States schools for medical conditions and disabilities. This helps ensure consistent protections, communication to the teachers and to the staff, as well as accountability. This isn't being difficult. This is documentation that helps your child succeed safely, and it's something that's very commonly used for those with food allergies, but a lot of the gluten-free community does not realize that this can actually also apply to them, especially if they have celiac disease. So, why did we choose a 504 plan? Well, it first started with our oldest because he has he had such an extreme reaction to gluten, he would literally want to fall asleep and would fall asleep for hours on end. The longest time was 36 hours, or he was completely asleep. His body shut down. Talk about a bit scary as a parent, but his body shut down. We could wake him up briefly, but then he would fall right back to sleep. He would and not remember, not remember that we woke him up and he, you know, said a few words to us. So we needed that because if he got glutened, he would be medically out of school for longer than what you might think he would need. Plus, he would have such lingering brain fog, he had a really hard time, you know, getting his brain to work back in that school mode, being able to get homework caught up on. So we needed a fib of floor plan that not only excused him from school whenever he did get glutened and was extremely sick, but also gave him extra makeup time to get his homework done. And because of, you know, once they get older, the teachers become generally less flexible on how much, you know, how many days it takes you to get your homework turned back in. So the traditional school policy, especially in middle school and high school, wasn't enough time for him to get his brain to recoup because they were giving a day per day that you were out. Well, he needed another couple extra days, just because even though he might have been at school because he wasn't contagious, he still wasn't brain functioning at 100% yet. Another thing it helps with is for those children who need bathroom access whenever they need it. This can help the teacher not question letting your child go to the bathroom more frequently than the rest of the children. This was very handy for some of our other children because some of them had a bit more digestive issues than others. They all have different symptoms around it. And that can really help the teacher be aware that if my child is complaining of a stomachache and they need to go to the bathroom, please let them go. It's very important for them to go. That just really helps that communication there. Also, when they're little kids, having that 504 plan can really inform all the teachers, the art teacher, the music teacher, the gym teacher, and the regular teachers, and the substitute teachers that this child needs to make sure that they don't get access to gluten and that they don't get gluten on them. You know, in in art class, many times they do paper mache. That's got uh gluten in it. A play-doh, if they have play with play-doh in an art class, that has weed in it, which has gluten in it. So doing this can help those other teachers understand what your child needs. So this really wasn't about special treatment, it was about more making sure the adults responsible for our kids actually understood what mattered and what was important so that they stayed safe, healthy, and could be active participants in school and in the classroom. So

Accommodations That Actually Help

Carrie Saunders 6:28

I talked about some of the accommodations we used with the 504 plan, but I want to reiterate some of those as well as go into some other options too that can hopefully make a more complete awareness of what you can ask for on the 504 accommodation. So for health and safety areas, some of those can be unrestricted bathroom access, nurse awareness. This is one thing I didn't talk about yet, teacher awareness, substitute teacher notes, and then on the academic area, it can help with extended time for missed work, makeup work flexibility, absence accommodations. This is especially important if reactions knock them out for days. So we had 504 plans for each of our children, but we didn't ask for the same accommodations for each one of them because they ended up reacting differently. So we didn't always do the extended time for missed worked for the other two children because they didn't react like that. And then some examples in the classroom, safe snack procedures to help your child be safe, especially when they're little. Um, no unsafe classroom food handling, making sure all the kids understand and are aware. Like it was kind of fun as our kids got older. I mean, fun in a way, just to see how the how their peers started understanding their needs and would react to it and really help try to help support them. So it was always fun to see that growth in the children around them, too. Also in the classroom, hand washing policies and how to make this safer for your child, and desk cleaning to make sure that all the desks are clean, especially if the children move around to different types of rooms, that can really help as well. We touched on this a little bit, but art supplies, play-doh or wheat containing crafts, paper mache, sensory materials can sometimes have gluten in them. Field trips, safe meal planning for this. We always had an adult that was responsible and understood what our child's needs were when they went on a field trip. That way they had a safe person to go ask and to get help from whenever they needed some food advice. We packed food too on field trips to help this as well, and just general teacher awareness on the field trips as well as that one-point person.

Elementary Versus Older Kids

Carrie Saunders 8:50

So then let's talk about how do we deal this with elementary children versus older kids. For elementary, this was much more parent-led from us. We had teacher meetings, we explained celiac to them, um, we packaged food. We always had um a safe treat for them. When it was a birthday treat time, we would get a pre-packaged, like muffin, gluten-free muffin, and then they had a place in the school where they would store it in like a mini fridge or the teacher's lounge fridge and marked with our child's name on it. So if there was an unexpected birthday treat that came up, our children weren't left out. Now, if there were birthday parties that were planned, we would just, you know, bring something special on that day. But this was like an emergency backup unplanned treat day was very helpful. But we also started teaching self-advocacy earlier. We would teach our kids things to say, like, can I check that first? I can't eat gluten. Can I ask my mom or dad? So that can really help them start getting that self-advocacy early. You'll be surprised how young children can start advocating for themselves. They can actually, you know, do this a lot better when you've empowered them and given them those tools and have that confidence in them. And then when we shifted to middle school or high school, we shifted even more towards independence. And especially even in the later grades in elementary school, we really tried to do this. We they became more self-advocacy. They advocated for themselves more, they knew how to learn, they knew how to read labels, and we let them handle their social situations a majority on their own, but we were always there to help if they needed advice because some kids are shy. You may have one, if you have multiple children with celac disease, you may have one child that may confidently advocate for themselves, and another may freeze socially and feel really awkward about it. So age doesn't automatically equal confidence. We want to make sure we are understanding our children and how they are from a social standpoint so that we can help them either self-advocate or we can advocate for them for a little bit longer than you might maybe typically expect or a different child would have expected, because we had different ranges of this with all three of our children. And we tried to follow who they are and how they operated to make sure that they were safe. So

Field Trips And Band Camp Reality

Carrie Saunders 11:13

let's talk about some real life challenges that we hit. The children had, you know, typical field trips in elementary and middle school. You know, I we had, like I said, that one point person whenever they went on the field trip to make sure that they helped be safe. We also packed um a decent amount of protein and snacks so that if they, you know, got in a situation where they couldn't eat a meal wherever everybody else was eating, they had a fallback food. One thing that was really kind of crazy was band camp. As the kids got older, they went away to band camp for a whole week. And that was a cake, you know, that was they had like a cafeteria in this band camp that was absolutely not okay for eating gluten-free or really, I think most food allergies. And that was different because it was a longer event. There was more peer pressure potentially, there was much less parent oversight. These were children who were typically eighth grade and up, um, had a handful of seventh graders in there. So what we did was we packed their food, and then there was a parent night on the middle of the week on the Wednesday. So then we came over, you know, got to see their show that they were working up so far, and then replenished their food for the rest of the week. Now, one thing that happened is like some of the band kids, especially the newer ones, you know, each year you get, you know, newer kids in there. And one of them didn't realize how sensitive our oldest was to gluten. And he actually ate, I believe it was goldfish in our child's bed. And there were crumbs in the bed, and somehow he got the crumbs in his system, and he was literally out for a whole day recouping from getting glutened. And that kind of really set it home for those band kids. And I remember on one trip um that we went to New York City with the band on the on the bus as we were driving there, you know, one of the kids was like, uh, gluten kills Caden, you know, talking about our oldest child. So they were started to get it that, you know, gluten is kind of detrimental to our children. And so it really helped empower the other students to help protect their friend as well as helped my child learn how to navigate situations and try to protect himself. And then

Daycare Risks And Questions

Carrie Saunders 13:26

what about daycare? Now, we didn't personally experience this because our children weren't diagnosed until they're a bit older, you know, fourth grade and on. But this can be a higher risk because of mouthing behaviors. You know, kids are putting everything in their mouth, you know, sensory play here, shared snacks. So make sure when you have a child in daycare, if you have one that has celiac or gluten intolerance, ask their food handling policies, ask about their hand washing, ask about their sensory materials to make sure that they are gluten-free and allergy friendly. Make sure that the staff are trained on this and you know, talk to them about your children's reaction and how to deal with it. You know, it's it's similar to when they're older, but you have a bit more, even more of a risk just because of the nature of toddlers and infants and how they love to just stick everything in their mouth.

Confidence Without Passing On Fear

Carrie Saunders 14:15

And then I want to talk a little bit about the emotional side for parents as well as teaching self-advocacy. The thing that we can do as parents sometimes is we can, and this is a hard balance. I'm not saying I'm absolutely perfect at this, but it's something to be aware of is protecting your child without inducing that fear in them. Sometimes we can be so fearful for our child and fearful that they're going to get sick and then they're going to get gluten, but we have to somehow make that balance that that doesn't get put upon the child so that they don't become fearful. We want to make sure that they can advocate for themselves without being fearful. We want to give them instead confidence. So whenever you are trying to help, teach them advocacy, give them confidence-building tools more so than the fear-building tools. It just can really help the long term of their themselves, their confidence in general, and it can really help create that balance so that they aren't living in fear, they're living in confidence. So you can give them some exact questions to ask, something like, I need to check first, I brought my own food, I can't have that. Really, really simple phrases. It's really easy to teach them how to say no politely with just some phrases that they are used to using.

Recap And A Hidden Gluten Surprise

Carrie Saunders 15:33

So a quick recap: 504 plans can be incredibly helpful. And if you're listening and you're in a different country, see what plan is available in your country. Elementary, typically, we do more parent-led. As the kids get older, we try to give them confidence and guidance so they can advocate for themselves. And also, school planning matters. This is not something to just skip over. School planning definitely matters, and advocacy gets easier. One little short story I completely forgot to mention was that one of our band directors actually found out that during COVID, some of the hand sanitizers got switched out to hand sanitizers that included wheat in it, included gluten in it. One of the children, not one of ours, another child in an elementary school got sick from it. He was in the elementary school and found out he got sick from the gluten in the hand sanitizers and immediately told me and immediately told my kids. So whenever you do things like this, when you have these 504 plans, you actually help empower the teachers to also advocate for your child. It's not a burden to them. They want your child to succeed, they want them to be happy and healthy. So you're empowering others to help your children as well. And it's just a great ripple effect. At the end of the day, sending your gluten-free child to school can feel scary, but you don't have to solve everything perfectly on day one. These systems can help, communication can help, teaching your child advocacy helps, and little by little it gets easier and everybody becomes more confident.

Closing And Next Steps

Carrie Saunders 17:10

Thank you for listening to this episode of the Gluten Free Engineer. If you found value in this story, please share it with someone who might need encouragement on their own gluten-free journey. For more tips, recipes, resources, and even links to my YouTube channel, head on over to theglutenfreengineer.com. It's your one-stop hub to make gluten-free living simple, fun, and full of flavor. And don't forget to subscribe so you never miss out on an episode. And we will see you next week. The Gluten Free Engineer Podcast is for informational and entertainment purposes only. I share my personal experiences and stories about living with celiac disease and navigating a gluten free lifestyle. This podcast does not provide medical advice. Always consult with a qualified healthcare professional for medical questions, concerns, or advice specific to your health.