Back To School

~Tips for going back to school~

Heading back to school comes with a lot of different feelings, including nervousness about being able to safely maintain a strict gluten free diet. There are opportunities for gluten exposure at school and school related activities, but there are also ways to be able to participate and stay safe. The following are a few ideas that can help to minimize exposure, increase feeling confident and be successful.

~Fill out a 504 plan!~

The US Dept. of Education states: “Section 504 of the Rehabilitation Act of 1973 covers qualified students with disabilities who attend schools receiving Federal financial assistance. To be protected under Section 504, a student must be determined to: (1) have a physical or mental impairment that substantially limits one or more major life activities; or (2) have a record of such an impairment; or (3) be regarded as having such an impairment. Section 504 requires that school districts provide a free appropriate public education (FAPE) to qualified students in their jurisdictions who have a physical or mental impairment that substantially limits one or more major life activities.” With the proper documentation, celiac disease is covered by the Rehabilitation Act.

You may feel ok with creating an informal plan with your child’s school and teachers and not bother with a formal 504, but hear me out. Using the 504 plan creates legal protection and support for your child, especially for off-campus events and emergencies situations as well as day to day school experiences. A properly structured and implemented 504 will make sure that any and all people who are involved with your child, at school, will have an understanding about celiac disease, the gluten free diet and what do if gluten is ingested.

The goal of the plan is to increase a feeling of normalcy, inclusion and to decrease chances of gluten exposure. Some school districts and schools will be easier to work with than others, but it is your child’s right to have any and all accommodations and is worth the going through the process.

An additional bonus of the 504 plan is that it is an educational and awareness tool, especially in situations when celiac disease and the process of managing a gluten free diet is new to a school.

The first step is to make sure that you have all of your child’s official celiac disease medical records and signed Dr.s documentation.

The second step is to contact your school and find the person who you should communicate with. Public schools have 504 coordinators and independent schools will have a learning coordinator that can help navigate the process. Ultimately, the teachers, the school’s healthcare staff and food service team will be involved.

Find out if your child’s Dr. and/or dietitian can provide a celiac specific 504 template. If not, look at the following resources:

Celiac Disease Foundation Template

Celiac Disease Foundation Back to School Plan

Beyond Celiac’s School Toolkit

Seattle Children’s Hospital EatLiveCeliac.org 504 resources

Key information that will be included:

• Name of child and month/year of diagnosis.

• Child specific reactions when gluten is consumed, including reactions from both minimal cross-contact and more significant ingestion of gluten.

• If the child is self-reliant in managing their needs or needs assistance.

• A description about celiac disease, the need for strict adherence to the gluten free diet, the negative impacts on learning, and the possible feelings that can come from needing to follow the gluten free diet (feeling isolated and excluded for class activities for example).

• Establish alternate plans for birthday parties, field trips, overnight retreats, art class, class projects, school lunches, when other families bring food to share, and stored food for an emergency.

• Clear plan for when gluten is ingested.

It will need to be submitted annually, but once it has been created it can simply be re-submitted. Considering symptoms and ability to self-manage the disease changes as the child grow and develops, it is helpful to make adjusts to the 504 that reflect any changes or new information.

Depending on the age of the child, having them be part of the process is another way to help teach self-advocacy and increase agency over their own health and body. The sooner they can begin to feel confident in communicating with others about having celiac disease and their gluten free needs, the better. It would be great to have high school aged students own the process with caregivers providing support as needed.

~Field Trips & Retreats~

Even if a 504 is set-up, extra attention and work will need to happen, on the caregivers part, to help create a safe gluten free experience for off-campus field trips and overnight retreats.

The sooner details of the event are known the better. It will be expressed, in the 504, that the school needs to inform caregivers about upcoming events, but that doesn’t mean you need to wait for them to come to you. If there are any questions, don’t hesitate to reach out to the teacher.

Shorter field trips may not even need any extra support, beyond a few questions, as the food situation may mimic what happens on campus. For example, the school may provide to-go meals from the cafeteria. If the student is already eating safe gluten free food from the cafeteria, the same protocol should happen with that person’s to-go meal. If the student usually brings their own food, they will also bring their own food to the field trip.

One consideration is if the field trip is a food focused field trip. In that situation more in-depth support will need to happen. For example, my daughter's Kindergarten class went on a tour and tasting of a local chocolate company. I could have gone on the field trip to help her navigate the experience, but I couldn’t attend. Instead, I figured out which chocolates were safe for her to taste and let the teacher know beforehand. The teacher felt confident about keeping my daughter safe and my daughter had a great time and enjoyed tasting chocolate.

In the case of overnight retreats, to ease possible stress and anxiety for everyone, it may help to communicate directly with the food and health staff where the retreat will be happening. The school or teacher should be able to provide the contact information to the necessary people. This will give you the chance to ask all the questions about food preparation and serving protocols as well as to decide if additional gluten free food should be sent, how it will be stored and served.

~Back-up Treats~

You can set up all the best plans in the world, but mistakes can happen. Someone may forget to let you know that a birthday will be celebrated in class or a teacher might surprise the class with brownies (both true stories) and your child will have to say “no, thank you.” Having a stash of shelf-stable or frozen treats on hand will come in very handy.

We’ve stored, very clearly labeled options in the classroom, if there is space, and also in the Teacher Lounge’s freezer.

~Find others~

While schools can’t tell you who else has celiac disease and who needs to follow a strict gluten free diet, most likely you are not alone. Ask around and let others know that your child is gluten free. It’s like having a gluten free team on your side.

I found a mom who's son had celiac disease and knew that she took his gluten free needs very seriously. He wasn’t in my daughter's class, but that mom and I looked out for and took care of each other and our kids. We both kept shelf stable gluten free food and treats at school for the kids, just in case, and if one of us happened to run out, the teachers and kids knew that they could take from the other’s stash.

There were also times when the whole school had fun events that called for families to volunteer to bring in food and treats, like celebrating Halloween and an annual Carnival. She and I would provide a variety of gluten free food options so that our kids didn’t feel so different and isolated from only being able to have the things from their own home. We also brought in enough to share with classmates, school staff or to be sold if there was a bake sale.

Also, if your school is challenging to work with, in terms of accommodations and events, it is helpful to be able to work with other caregivers of children with gluten free needs when dealing with the school.

The best part about finding others is that it helps to not feel alone. It feels great to have people around you who understand what the journey is like.

Here’s to a great year in school!

If you would like additional support navigating living gluten free…

Disclaimer:

While we have more than eleven years’ experience of navigating the world as the parents of a child with Celiacs, we are not physicians, nutritionists, or other licensed medical professionals. The material and content contained in the Services is for informational purposes only and are not intended to serve as a substitute for consultation, diagnosis or medical treatment by a licensed medical professional. Please consult your doctor for any medical or health-related questions. The information contained in the Services should NOT be used to disregard medical or health-related advice from a physician or licensed medical professional.