Monday, August 19, 2019

504 Plan for Celiac Disease (sample letter included)

As parents, it's our responsibility to educate our children's teachers and caregivers about celiac disease and the importance of our children avoiding gluten.

At the beginning of each school year, I make sure I communicate with Jack's teacher(s) about celiac disease. I also put a 504 plan in place for the year.

NOTE: This is what I do for Jack, each school year. Every child is different, every teacher and school is different. It's really what YOU, as YOUR child's parent, feel is BEST for your child, to ensure he or she is in good hands at school.

What is a 504 plan?

A 504 plan is designed under law, to ensure that any child with a disability or chronic condition has accommodations put into place in order to achieve academic success and access to the learning environment. (A link is provided at the end of this blog post to explain more on ).

I file a 504 plan for the following reasons:

1) My son isn't avoiding gluten just "because" 
2) He has an autoimmune disease, 
3) He can become tired and ill, if exposed to gluten, 
4) Which can affect his academics if he has to miss school.

Elementary School:

Even though Jack is now in 6th grade, I wanted to share with you what I did in the past for elementary school.

1) 504 Plan - I contacted the school's guidance counselor, to get the ball rolling. You can always start by emailing the principal, if you aren't sure who to contact.

2) Elementary school is FULL of snacks, birthday parties, pizza and so on, so it's important to discuss this with the teacher - asking them to give you a heads up when their will be in school celebrations. (See Sample letter below)

Middle School:

1) Since Jack just started middle school, I wanted to email the principal and ask what would be best to communicate with Jack's teachers about celiac disease.

2) The 504 plan transfers from elementary school - so they have that on file. I also emailed all of Jack's teachers informing them of celiac disease and that he would need to use the restroom on an "as needed basis", which is also in the 504 plan.

>> My main concern for Jack in middle school, is the strict policy on "hall passes". The middle school students are allocated a certain amount of hall passes for the year, so I knew I would need to address this. 

** Let me clarify, it's not that Jack NEEDS to go to the restroom, an excessive amount - if he did, we would need to be looking at what he is eating to ensure that he wasn't getting any cross contamination.

>> Having an autoimmune disease that affects the small intestines, I feel you're bowels are more sensitive than others anyway. I don't want Jack to worry about using the restroom at school.

I am not concerned about lunch, as I pack his gluten-free lunch every day. I am SO HAPPY that we don't have to worry about snack time, holiday parties, birthday parties and so on. They may have a pizza party for a fundraiser celebration, but otherwise, it's not something we don't have to worry about too much.

Gluten-Free Stash 

There will be some things that just POP up! To be prepared, send in a handful of gluten-free goodies that the teacher can keep in the classroom.  Favorite chips, snack bars and candy.

I hope this helps you get your child on his or her way to having a FANTASTIC school year!

Lastly, remember, COMMUNICATION IS KEY. We can't assume that after sending this information, the teacher will know everything about celiac disease and what all has gluten. So, open communication through-out the year is crucial.

Other "Back to School" resources:

Gluten-Free School Lunch Ideas
Snacks for School/After School

More about 504 Plans, click here.

Sample Letter:

**NOTE: This is a letter that I created. The information in the letter is what I felt was important to address pertaining to Jack's school environment.  Every child is different, every school is different and every teacher-parent-child relationship is different. Please do what is best for your child and add more information or less. 

Dear Teacher,

This letter is to inform you that our son Jack has celiac disease. Celiac disease is an autoimmune disorder that when gluten is ingested, it wrecks havoc on his body. For the past 7 years, Jack has been living a gluten-free lifestyle. Gluten-free living for celiacs, is like insulin for diabetics. It’s what keeps Jack healthy.

Gluten is a protein found in wheat, rye and barley. Gluten is found in a wide variety of foods - from cookies, breads, pastas, cereals, candy, snack foods and more. Because celiac disease is not an allergy, Jack WILL NOT be in immediate danger, BUT if he ingests gluten due to cross contamination or accidentally eats something that contains gluten, he will likely experience stomach discomfort/pain, as well as fatigue, diarrhea and headache.

With Jack only being 9 yrs. old, we are still learning the signs and symptoms of accidental gluten exposure. We just need to make sure that Jack avoids gluten at all costs.

With all that said, I want Jack to have a great school year and I have no doubt, you do as well. I want to just share a few things with you that will help you in the classroom and the information that you provide me, will help me prepare for upcoming school events:
  • First, Cross Contamination - From gluten crumbs, to art supplies/crafts, and Playdoh (which contains wheat) - it is important to be aware of Jack's surroundings and work surface. For Playdoh, I would like to provide some Crayola Model Magic which is gluten-free and some of his own tools/cutters to keep separate from the others. With cross contamination, please be aware of wheat products in the classroom and I encourage a lot of hand washing! (Last year, Jack would come home from school with filthy hands). 
  • Not in letter but note for parents: Playdoh is not a concern for me now, as Jack is older. This is more for the younger kiddos (pre-school/Kindergarten). I would allow Jack to play with it as gluten doesn't affect his skin and it cannot go through his skin (it's a myth that it absorbs through the skin). But, I do ask that he washes his hands thoroughly afterwards - he is old enough to understand the importance of washing his hands very well.
  • Restroom Breaks - Jack needs to be excused to use the restroom on a “as needed” basis. Jack may have an urgency to go and when he says he needs to go, he needs to be holding it, when it comes to celiac disease. And sometimes, he may be in the restroom a little longer than most - that’s just how Jack’s system works.
  • Birthdays - Please let me know how you plan to celebrate birthdays - whether once a month or if children will be allowed to bring in cupcakes on their birthdays. This will allow me to prepare accordingly and have something for Jack on the days that special treats are brought in. If children are allowed to bring in treats on their actual birthday, could you please provide a list of birthdays for me?
  • Special celebrations - Halloween, Thanksgiving, Christmas, Easter, pizza parties, etc. - let’s make sure to communicate - I’ll always provide something for Jack. I also like to make gluten- free cookies and cupcakes for the whole class when it comes to celebrations.
  • Field Trips - Please provide information in advance of any field trips: What activities will be taking place (crafts, etc.) and if special treats will be had, so I can provide something gluten-free if needed.
Lastly, if you ever have any questions about Jack’s diet or have a question about eating a certain food, please don’t hesitate to call me. (Provide Phone Number)

Thank you so much for working with me to make Jack’s school year gluten-free friendly! 


Jack’s Mom


  1. A 504 plan is entirely appropriate here. Also, aides and field trips should be noted so there is no confusion. Our teachers allow us to keep a stash of gluten free stuff in the classroom so they can have things for unexpected times when they may give out snacks. Also, in my opinion, I'd modify the immediate danger clause a bit, still stating what you said, except that I would go further (maybe use language from or somewhere) and state that if he is exposed, it can lead to intestinal distress and inflammation which can exacerbate the condition and possibly cause hospitalization. Most schools take this very seriously, but it's good to be clear that there should not be any exposure, period. Good luck with this year! :)

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