Celiac Disease in Kids: 504 Plan for Celiac Disease at School
Your Celiac 504 Plan Questions Answered, Plus Over 50 Accommodations for Celiac Disease to Consider Using in Your Child’s 504 Plan
Table of Contents
- Our Story: Miss E’s 504 Plan for Celiac Disease
- What is Celiac Disease?
- What is a 504 Plan?
- Does Celiac Disease Qualify for a 504 Plan?
- Does My Child Need a 504 Plan for Celiac Disease?
- How Does My Child Get a 504 Plan for Celiac Disease?
- 50+ Accommodations to Consider Using in Your Child’s 504 Plan
- Should My Child be Involved in 504 Planning?
- Resources
- Disclosure
Having a 504 Plan is so important that it made #1 on Go Gluten Freely’s 10 Strategies to Keep Your Celiac Child Included and Gluten-Free at School.
In this post, we’ll go over the basics of a 504 plan and why it is essential for children with celiac disease. If you are already convinced your child needs a plan and you simply want help identifying accommodations, we also cover Over 50 Possible Accommodations for Your Child’s 504 Plan.
Our Story: Miss E’s 504 Plan for Celiac Disease
When Miss E was diagnosed with celiac disease, she was attending a private preschool. In the fog of the early weeks of diagnosis, I did not even know what a 504 plan was, let alone whether it applied to her private preschool. It did not apply, by the way.
I recognized that communicating with the preschool was important to keep her safe. I sent an email to her teacher and the director explaining her diagnosis and need for gluten-free and cross-contamination-free food and activities.
That initial email highlighted important areas, including snacks, parties, handwashing, play-doh, crafts, and sensory activities. It was a bumpy start as we all learned to navigate celiac disease for Miss E, but the preschool did a wonderful job working with me to accommodate her needs and include her in all activities and events. You can learn read more about Miss E’s preschool experience in my article Celiac Disease in Kids: Keep Your Celiac Child Safe and Gluten-Free at Preschool
Some of the links on this post are affiliate links. To learn more, visit our Disclosures.
Then, when Miss E started kindergarten at a public school, I learned the process and language surrounding accommodations in public schools and quickly decided she would benefit from a 504 plan that could follow her across all school environments from K-12 and form the framework for accommodations she might need in college.
By the way, just like in preschool, I still start each new school year with a letter/email to the teacher that serves as a celiac disease fact sheet for teachers and highlights the essentials of managing celiac disease at school.
While a back-to-school celiac letter to the teacher is a helpful introduction, a 504 plan is indispensable. Here are the basics you need to know when thinking about a 504 Plan for your Celiac child:
What is Celiac Disease?
Celiac disease is an autoimmune disease. When someone with celiac disease ingests gluten (a protein in wheat, barley, and rye), their body has an immune response to the gluten, and then attacks and damages the villi that line the small intestine and absorb nutrients. The damaged villi are then unable to absorb nutrients properly, leading to malnourishment and other medical problems.
The only current treatment is a 100% gluten-free diet.
What is a 504 Plan?
A 504 Plan is provided for under Section 504 of the Rehabilitation Act of 1973 for qualified individuals with a disability. Section 504 is a civil rights law, protecting individuals with disabilities from discrimination.
A 504 plan is the formal, written plan the school will follow to give a student with a disability equal access to a free and appropriate public education. (FAPE) The 504 plan is all about access. How will your child, with celiac disease, have equal access to learning and the same education their peers can access? This is accomplished through accommodations spelled out in your child’s 504 plan.
Here is a concrete example. Think of a student in a wheelchair. A 504 accommodation would be a ramp. That ramp is needed for the student to physically access their education.
Does Celiac Disease Qualify for a 504 Plan?
Your child’s school will hold a 504 meeting to determine eligibility based on your child’s individual circumstances. Here are the requirements:
Under this law, individuals with disabilities are defined as persons:
- with a physical or mental impairment (or have a record of or regarded as having such an impairment)
- which substantially limits one or more major life activities.
Major life activities include, but are not limited to, caring for one’s self, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, working, eating, sleeping, standing, lifting, bending, reading, concentrating, thinking, and communicating. (US Department of Education, Office of Civil Rights)
For Miss E’s school, this eligibility process was quick and easy, and by my review of the requirements, celiac disease absolutely qualifies.
- physical impairment – check
- substantially limits one or more major life activities – eating, check
Depending on your child’s symptoms, there may be several other impacted life activities, such as concentrating, learning, school attendance, etc.
Bottom line: celiac disease is considered a disability protected under Section 504 of the Rehabilitation Act of 1973.
Does My Child Need a 504 Plan for Celiac Disease?
For us, this question was a slam dunk. Absolutely!
Having a 504 Plan protects Miss E. It makes sure her teachers, principal, lunch aide, recess supervisors, classroom assistants, and substitutes are all aware of celiac disease and Miss E’s needs. It paves the way for her to fully access her educational experience, like her peers, including projects, parties, and field trips. It prevents her from having a gluten exposure at school, which has the additional benefit of preventing celiac-related anxiety. School is a safe place. This is foundational for learning.
Some families struggle with deciding whether to have a 504 Plan or simply a Health Plan. When comparing a Celiac Disease 504 Plan versus Health Plan, a 504 Plan wins. If your child qualifies for a 504 Plan for Celiac Disease, as discussed above, it is the appropriate and more robust plan, offering more protections than a Health Plan for students with celiac disease.
Here are 5 Benefits of a 504 Plan for Celiac Disease:
- 504 Plans are a legally-enforceable, binding agreement between the parents and the school. Outside agencies, such as the Office of Civil Rights, can help enforce the plan.
- A 504 Plan follows the student across all school environments, whether in the cafeteria, on the playground, in the classroom, or on a field trip.
- A 504 Plan informs all appropriate staff, including when there are temporary (substitute teacher) or permanent (the principal retires) staff changes.
- A 504 Plan moves with the student from kindergarten through high school. It is reevaluated periodically and can be updated as needs change.
- Miss E’s school district re-evaluates her plan annually. We have been able to remove and change some of the accommodations as she has developed more autonomy in caring for her own needs with celiac disease. New accommodations for overnight trips will need to be added in upper grades. Many celiac high school students require excused absences and extra time to make up work when recovering from gluten exposure, an accommodation that may be less critical in lower grades.
- A 504 plan in primary and secondary school can streamline the process to get reasonable accommodations in college.
The only time I personally would not recommend a 504 plan for a public school student with celiac disease is if that student otherwise qualifies for an IEP (individualized education plan). The accommodations for celiac disease can simply be added to the IEP with no need for a separate 504 Plan.
How does My Child Get a 504 Plan for Celiac Disease?
Put your request in writing, email is fine. Send an email to your child’s teacher, principal, or school nurse requesting that your child be evaluated for 504 plan eligibility.
Obtain a letter from your child’s physician documenting your child’s celiac disease and requirement for a gluten-free diet.
The 504 Coordinator at your child’s school will set up a meeting with you and a team at the school to determine eligibility and develop the 504 Plan.
You can use Go Gluten Freely’s free email template to send to your child’s teacher. This email template includes a request for a 504 Plan evaluation.
What Accommodations Should Be Included in My Child’s 504 Plan for Celiac Disease?
Following are over 50 possible accommodations for your child’s 504 Plan for celiac disease. For example, Miss E’s plan only has 10 accommodations. Other excellent Celiac 504 Plans have closer to 40 or 50 accommodations. Work with your child and your child’s school to determine which are appropriate accommodations for your child. If you
Accommodations for the Classroom (Everyday Accommodations):
- Student must wash hands before eating and all students must wash or wipe their hands when entering the classroom at the beginning of the day and after snack/lunch.
- No classroom activities involving gluten. In the case of play-doh or pasta, gluten-free must be used.
- The student may have unrestricted bathroom use.
- The student may have unrestricted handwashing.
- “Avoid all foods containing wheat, barley, rye, and commercial oats.” (ROCK, Raising Our Celiac Kids)
- “Contact parents at least seven days ahead of time regarding any foods that are going to be served at events/celebrations or used in the curriculum so they can be evaluated for gluten content.” (ROCK)
- “Ensure student washes hands with soap and water after art activities or when using food in the curriculum.” (ROCK)
- “Use gluten-free alternatives to play dough and papier mache and avoid being in an environment where flour is dispersed into the air such as baking.” (ROCK)
- “Ensure work and eating surfaces are cleaned with water and detergent and kept free of crumbs and debris.” (ROCK)
- “Include information about celiac management procedures in instructions provided to substitute teachers.” (Boston Children’s Hospital)
- “If meals and/or snacks are stored, designate space for gluten-free food storage that is separate from gluten-containing food storage.” (Boston Children’s Hospital)
- “Require children with celiac disease to wash their hands with water and soap after handling materials that contain gluten.” (Boston Children’s Hospital)
- “Encourage parents of children with celiac disease to provide gluten-free snack or treat items to be stored in the classroom or other agreed upon storage space in the event of an unexpected activity involving food.” (Boston Children’s Hospital)
- “If the classroom or learning space is utilized for other functions (e.g., PTAs, community groups), then notify these users of all policies and rules regarding use of food or food-based materials.” (Boston Children’s Hospital)
- “If gluten-containing foods or materials are used during other functions, then ensure the space is properly cleaned prior to use by children with celiac disease.” (Boston Children’s Hospital)
- “If the institution is required to maintain an emergency supply of food based on state and local laws, keep gluten-free foods for children with celiac disease.” (Boston Children’s Hospital)
- “All staff members involved in the care and education of the student must receive training in the management of celiac disease. This includes teachers, classroom (assistants), substitute teachers cafeteria workers, office staff, school nurse…” (Celiac Disease Foundation)
Accommodations for Food Services:
- Nutrition services shall prepare student’s gluten-free meals and side items, with methods to prevent cross-contamination, when a school lunch is ordered. (Federal law and regulations for the National School Lunch Program require this accommodation.)
- Student not to eat food other than her own. Encourage all students not to share food.
- An adult must wipe the eating area before snack/lunch.
- “Ensure student has a seating arrangement during meals that allows adequate space to prevent cross-contact with gluten.” (ROCK)
- “All gluten-free food options served to children with celiac disease must meet the FDA’s definition of gluten-free…food labeling.” (Boston Children’s Hospital)
- “Review labels of food items served to children with celiac disease for gluten-containing ingredients at the time of each new purchase.” (Boston Children’s Hospital)
- “If food is prepared in the institution, designate a gluten-free safe food preparation area with either dedicated or appropriately sanitized kitchen tools. If a dedicated area is unavailable, then clean preparation areas thoroughly before preparing gluten-free foods.” (Boston Children’s Hospital)
- “Provide copies of meal menus, including gluten-free food options, to parents/guardians of children with celiac disease at least one week prior to serving to assist families in meal planning.” (Boston Children’s Hospital)
- “Clean the eating surface where the child with celiac disease might eat so that the child can, like other children, choose where to sit during eating times.” (Celiac Kids Connection) Note the latter part of this accommodation is considering the child’s social-emotional needs. Fully including your child is an important goal!
- “Encourage children and staff to wash their hands with soap and water before and after handling or eating food.” (Boston Children’s Hospital)
- “Share recipes, food labels, and ingredient lists of foods used to prepare gluten-free meals and/or snacks with parents/guardians of children with celiac disease, as requested.” (Boston Children’s Hospital)
- “Maintain copies of all food labels for at least 48 hours after serving a gluten-free food product in case a child with celiac disease has a reaction.” (Boston Children’s Hospital)
- “The food service provider should maintain an up-to-date contact list of vendors and manufacturers for inquiries about ingredients.” (Boston Children’s Hospital)
- “Develop a standard procedure for identifying children with celiac disease who need to be served a gluten-free meal that is consistent with the Family Educational Rights and Privacy Act of 1974 (FERPA).” (Boston Children’s Hospital)
- “If food is prepared on-site at the institution, then designate a staff member to oversee upkeep of gluten-free food preparation, food ordering, and the serving to children with celiac disease. Identify a backup individual or team in case of absence from the primary designee.” (Boston Children’s Hospital)
- “In addition to the food itself being free of gluten, the food cannot come in contact or be contaminated by gluten-containing foods. This means the gluten-free foods need to be prepared in a separate area, cooked in separate pans, and served with clean gloves.” (Celiac Disease Foundation)
- “In order to provide a balanced meal containing the 4 groups necessary for reimbursement, a gluten-free bread or bread alternative must be offered at all school meals. This would include such foods as a (gluten-free) bread, gluten-free roll, gluten-free cereal, and gluten-free pasta. The meat and meat alternative must also be free of gluten-containing grains such as fillers in hot dogs, poultry injected with wheat or barley, and a gluten-containing grain used as an extender in other meat products.” (Celiac Disease Foundation)
- “School food service personnel will develop a system for identifying the student when moving through the cafeteria line so that a member of the staff can ensure the selected food is safe.” (Celiac Disease Foundation)
Accommodations for Special Events & Parties:
- Inform parents 48 hours in advance of class activities involving food (parties, field trips)
- “As appropriate to their age and ability, help children with celiac disease read and understand the labels of foods provided by others, so they can learn to avoid ingesting gluten.” (Boston Children’s Hospital)
- “If food is ordered from a restaurant or outside vendor (e.g., Pizza Friday), then consult with the parents/guardians of children with celiac disease to develop an accommodation plan. This may include ordering from a restaurant or vendor with specific knowledge about celiac disease and gluten-free food handling, or another solution if no such restaurant or vendor is available or acceptable (e.g., bring in a gluten-free pizza from home).” (Boston Children’s Hospital)
- “Notify the parents/guardians of the child with celiac disease of any learning activities that may require an accommodation at least 1 week prior to the activity.” (Boston Children’s Hospital)
- “If food is provided by families for an activity, then provide 48 hours notification to the parents/guardians of children with celiac disease to determine an appropriate accommodation. The notification may include a description of the food item(s) and an ingredients list when available.” (Boston Children’s Hospital)
Accommodations for Field Trips:
- “Avoid off-site activities that would exclude children with celiac disease from safe participation (e.g., at a bakery or other venue that will not allow gluten-free accommodations).” (Boston Children’s Hospital)
- “Engage the parents/guardians of children with celiac disease in planning for accommodations for off-site activities.” (Boston Children’s Hospital)
- “If food will be provided by an outside vendor, then notify the vendor of the gluten-free needs of children with celiac disease and request a written plan detailing the food that will be provided, accompanying labels or ingredient lists, and the method of preparation.” (Boston Children’s Hospital)
- “If the institution will provide the food for an off-site activity, then ensure that meals and snacks are packaged in a way that prevents cross-contact and are clearly labeled as gluten-free foods.” (Boston Children’s Hospital)
- “If the parents/guardians provide food for the activity, then ensure there is a method for safely transporting and serving the food to the child with celiac disease in a way that prevents cross-contact with other food items.” (Boston Children’s Hospital)
- “Ensure those responsible (chaperones/staff) for a child with celiac disease are informed of the accommodation plans for children with celiac disease.” (Boston Children’s Hospital)
- “Inform the parents/guardians of children with celiac disease of the plan for accommodating their children at least 1 week prior to the activity.” (Boston Children’s Hospital)
- “Consider inviting the parents/guardians of children with celiac disease to accompany activities that require an accommodation.” (Boston Children’s Hospital)
Accommodations In Case of Gluten Exposure:
- “Allow student time off to recover from gluten exposure.” (ROCK)
- “Allow student extended time to complete assignments or take tests due to recovery from gluten exposure.” (ROCK)
- “Report all suspected gluten exposures (e.g., cross-contact, ingredient list errors, menu changes), to designated staff member and parents/guardians immediately upon awareness.”(Boston Children’s Hospital)
- “In the case of a suspected gluten exposure, regardless of whether the exposure happened at home or at the institution, provide the child with celiac disease unrestricted access to the bathroom facility and health/counseling staff.” (Boston Children’s Hospital)
Should My Child be Involved in 504 Planning?
YES! As an adult with celiac disease, I need self-advocacy skills, and, I would argue, so does a child with celiac disease. These are skills your child needs for life. From weddings to business meetings to first dates, celiacs are safer and more confident when we can take responsibility for our health and self-advocate.
So, how do you move from advocating for your child to building self-advocacy skills?
There are many ways to involve your child in the process:
In the early years, your child should know how to explain. “I have celiac disease. I cannot eat gluten.” “Does this package say ‘gluten-free’ on it?” Even the littlest ones can learn not to share food with friends.
By later elementary school or middle school, your child can join the 504 meeting for a few minutes and share suggestions about accommodations. Miss E’s school was quick to implement her ideas!
Also, in later elementary and middle school, some responsibilities can shift from parents and staff to the student. Ideas that may or may not be appropriate for your student:
- The student (instead of staff) can wipe down the eating area.
- The teacher can inform the student (instead of or in addition to the parent) about upcoming parties or activities involving food.
As your student moves through secondary school, more self-advocacy and participation should shift to the student. Remember, your child will be 100% responsible for advocating for accommodations in college and beyond!
Resources
Go Gluten Freely’s Printable Guide to 50 Plus Accommodations for a Celiac Disease 504 Plan
Go Gluten Freely’s Back-to-School Teacher Letter (includes request for 504 eligibility meeting)
Boston Children’s Hospital, Celiac Kids Connection: 504 Plan Template
Boston Children’s Hospital, Celiac Kids Connection: Voluntary Recommendations for Managing Celiac Disease in Learning Environments
Celiac Disease Foundation: Back to School and 504 Plan Guide
Department of Education, Office of Civil Rights: Frequently Asked Questions About Section 504 and the Education of Children with Disabilities
Raising Our Celiac Kids: School Packet
Disclosure
This article is not legal or medical advice. The information on Go Gluten Freely is based on my personal experience with my celiac disease and my daughter’s, and on my research using credible sources, like the resources listed above. Always consult with your child’s doctor if you have medical questions regarding celiac disease.
Need more inspiration for helping your child thrive with celiac disease? Check out these 10 Strategies to Keep Your Celiac Child Included and Gluten-Free at School and join the Go Gluten Freely Newsletter below!
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