When my son was first diagnosed with celiac disease, it never even occurred to me that he could one day order a safe gluten-free lunch from school. But I no longer pack lunch for my son. He purchases a celiac-safe, gluten-free lunch at school and has for the past 5 years. How are we so fortunate? Do I really trust that is it safe? I am asked these questions and more all the time… so in this long overdue blog post, I am finally sharing how we worked with the school district to get safe gluten free lunches provided at the school.
Background
My son was diagnosed with celiac disease in the Spring of 2010 and started kindergarten at a public school a few months later. At the time, celiac disease was not a household word and we knew no other celiac families.
My primary concern (in addition to feeding my son safely) was how we were going to navigate elementary school and all the food related activities — classroom birthday parties, holiday celebrations, after school activities and more.
We spoke with the school nurse and quickly got my son a 504 Plan which helped us educate his teachers and make sure he was safe in the classroom. His teachers and the school nurse were amazingly supportive but when the topic of school lunches came up, we all (myself included) just said there would be nothing for him to eat safely and moved on.
It never even occurred to me that my son could one day order a safe lunch from school.
Fast forward 2 years, and suddenly I knew 8 other moms in town who had children with celiac disease and we started meeting up regularly to share ideas and new finds, but we still weren’t thinking school lunches were a possibility.
Udi’s Gluten-Free Cookies and Muffins suddenly appear in Middle School and High School cafeterias.
Then in Spring of 2014, my older son came home with an Udi’s gluten-free chocolate chip cookie he had purchased for his brother in the middle school cafeteria, and my friend’s middle school daughter came home, beaming “They have GF muffins at the cafeteria!”
These were individually wrapped, Udi’s gluten-free cookies and chocolate muffins in the school cafeteria!
We couldn’t believe it!
The kids were thrilled to see something they could purchase to eat and it was even better that it was a treat!
As parents of celiac children, light bulbs started going off in our heads, phones started ringing, emails were feverishly written — if there is a muffin and a cookie, there could be a sandwich or some other ‘real food’?
I along with 2 other moms (all of us leaders in our local group of celiac moms) were suddenly moms on a mission!
We set out to find out who, among our large district administrative team, decided what food to offer.
We met the food services director and the director of health services for our district to discuss gluten-free options. They, and we, were concerned about safety and cross contamination but agreed they could offer some individually wrapped items, which were vetted by the school and by parents (we literally went to the school and looked at ingredient lists).
And by the end of the school year 2014, the school district offered a ‘food basket’ of gluten-free items to be sold individually at the cafeteria and which were single wrapped and gluten-free. This basket included: cheese sticks, single serve gluten-free pretzels, popcorn bags, cut up vegetables with gluten-free dressing and our now famous Udi’s muffins and chocolate chip cookies.
It is something, we thought. It is a start. We ended the school year happy and hopeful.
Fall 2014 “crisis”! The muffins & cookies are no longer in the cafeteria!
The following Fall when school started up again, word quickly spread among our celiac children that the muffin and cookies were no longer available.
What? How could they no longer be offered when we were just starting to get a few gluten-free items in the cafeteria!?
We were told that because our school participated in the National School Lunch Program, it had to abide by its nutritional guidelines and the muffin and cookies were too caloric and had to go.
WHAT? Not OUR muffin!! Panic set it; we had to do something and had to do it quickly.
Once again, we were three moms on a mission!
Three Moms on a Mission!
We immediately called the USDA and after speaking to representatives of the Child Nutrition Programs (National School Lunch Program is one of them), were told that the general nutrition guidelines do NOT apply to special dietary needs and celiac kids surely had special dietary needs.
Not only could we ask for our muffin back, we also learned that special dietary needs require accommodations under ADA, because USDA considers celiac disease a disability.
We also learned that at the request of the USDA and its “clarification of dietary accommodations for participants with celiac disease in the USDA Child Nutrition Programs”, each State’s Department of Education had sent a memo to all Child and Adult Care Food Program (CACFP) Sponsors (including schools!) clearly stating that they are required to make special dietary accommodations for participants with celiac disease. This memo was dated January 2, 2013!!!
For two years, our district had had it but had not taken action on it or communicated it to each school building. Trust me, nothing rallies 3 moms like this kind of information!
In no time, we obtained Connecticut’s copy of the memo, brought it to our district’s Head of Health Services and Food Services Director and… as they say, the rest is history.
November 2014, Our first Gluten-Free Menu
Within two weeks, we had our first Gluten-Free Menu!
It featured 4 items: two sandwich choices, a salad and a hummus plate with vegetables and chips. We were thrilled!
This is a menu from March 2015, a few months down the road and you can see several sandwich and salad options in the weekly rotation. Plus, additional a la carte items.
To be eligible for gluten-free lunches, each family needed to both provide a medical letter from their doctor and go to school and approve the lunch ingredients. There were 12 families who jumped on this opportunity.
We had to order on the Friday before so that food could be prepared ahead of time at the high school and brought to our respective schools in time for our kids lunches.
The school was very concerned about food safety. The food was prepared at the high school where they had already been trained in gluten-free preparation. They had separate cutting boards and utensils labeled GF.
The food was packaged at the high school then brought over to the appropriate schools. The bread is Udi’s and the meat is Boars Head. (Boars Head was not the usual meat served in our elementary and middle schools but it is used at the high school and is a premium. The gluten-free school lunch cost the same as the regular school lunch even though we have the premium meat).
In the elementary schools, the child went through the lunch line (a first for my child by now a 4th grader!), told the lunch ladies his/her name, received their pre-packaged sandwich from the fridge and then continued through the line and get their milk and fruit/vegetable like every other child.
The middle school and high school had a similar process.
It gets better and better each year.
From this starting point, we met with the food service director twice per year, slowly increasing food choices and frequency of rotation so that our kids didn’t have the same 10-15 choices for the whole year.
Over time, and with a cooperative and mutually supportive relationships, our gluten free menus increased to our current monthly menu which resembles a non-gluten-free school menu with salads, bento boxes, sandwiches and hot entrees plus an assortment of snack items or desserts such as yogurts, chips, popcorn, and…our Udi’s GF Muffins and chocolate chip cookies!
Here is one from the 2015-2016 school year, just one year after we got our first gluten-free menu.
Gluten-Free School Lunch 2019
Now, 6 years later, we continue to meet with the school representatives each year to review progress and food options. At each step we reviewed ingredients used, cross contamination procedures in place and ongoing kitchen staff training.
Parents of newly diagnosed students are invited to tour the cafeteria and look at ingredient lists.
All gluten-free lunch orders need to be placed the week prior so that the kitchen staff can be sure to have all requested items and prepare the meal each day, earlier in the morning when the kitchen is quieter and chances of cross contamination lower.
Food is maintained and handed over to the students in clear plastic ‘shells’ so that it never touches regular food items.
We currently have 31 students partaking in the gluten-free food offerings in a school district of about 5000 and we are incredibly grateful to our amazing school food services team! They truly care about the health and well being of our gluten-free kids and want them to eat healthy, great tasting food.
Lessons learned
Currently, our district of nearly 5,000 students has a solid, established and not-going-anywhere menu for gluten free children. And the district works hard to make sure each menu item is safe for kids with celiac disease.
We are both proud of our accomplishments and proud and grateful for our school district.
Looking back, it was a combination of some luck (Udi’s muffins in the cafeteria one day), some thorough digging for current regulations, some goodwill on the part of our food services director and some passionate ‘celiac’ parents and school administrators really working together that made this happen.
It has truly been a process and a partnership that resulted in accommodations evolving from a “Gluten-free basket of apples and GF chips” to a full menu of school lunches.
So if there is any advice I can give other parents wanting to work with their school to get gluten-free lunches, I would seek out some partners.
I would reach out to other parents in your district both for support and because numbers speak volumes. And I would try to find an ally or two within the school district — a head nurse? someone in food services?
When the school can put faces behind the request and get excited about what they are about to start offering, they feel ownership over the lunches and that was key for us. They wanted to provide safe lunches and they want our kids to have the same lunch experience as others.
One school at a time, one district at a time, don’t give up, get the information and documentation, meet with your food services and health services directors in your own district, and being working together towards your schools’ first gluten-free menu.
I would love to hear your experiences regarding schools and school lunches!
Leave a comment and let me know if you find this helpful and if you have any other tips.
I really enjoyed this blog post! My daughter is in 10th grade now and was diagnosed with celiac in 4th grade. Initially she packed her lunch, but as we adjusted to the big change, we talked to our school culinary director and realized they could safely accommodate her! They had already had one child with celiac come through the school so she understood cross contamination. My kids go to a private school, so it’s small, and lunch is included in tuition and is served family style—different than a regular cafeteria. But there is always a gluten free version of the regular lunch, and it is made separately and wrapped up for her and given to her directly. It’s wonderful! Great job on getting safe options for your son!
That’s awesome that they accommodated her so well! Private school is different so love hearing that some of them offer a safe gluten-free lunch! Thanks for sharing!
This made me tear up a bit! How awesome for the kids in your district. I’m the celiac instead of my son, but school lunch is such a part of the school experience (that my son loves) it’s wonderful that celiac kids can experience that “normal” experience.
Thank you so much Heather! I am grateful for a wonderful local group of celiac moms and for our school district which really worked with. It is so nice for our celiac kids to have the option to purchase lunch like all the other students. It’s those little everyday things that make such a big difference.
This post is very inspiring. I packed my daughter’s lunch every day.
After two years of my daughter being Celiac, we are finally meeting the 504 coordinator to see what can be done. Thanks a lot for all the information you share!
Thank you and you’re very welcome! A 504 is a great start and can be incredibly helpful! Keep me posted 🙂
Hello, my daughter was diagnosed with celiac in july 2020. No school lunches were provided for anyone this past year. I am now on a mission to get done in our high school what you have done for lunches in the fall.
My daughter did not eat at her junior prom, June 2021, despite numerous calls to the venue and to her class advisors prior to that event. I will not let that happen again next year for any senior activities!
We are in NJ so if you have any information for my state that you can provide, I would love to hear it!
Also, since she is a rising senior, I’m not sure a 504 would be of much use??
Thank u!
Hi! I feel for you both! It’s a tough age to start navigating a gluten-free diet, especially in the middle of a pandemic! Hopefully you will have better success this year! I am unfamiliar with specifics for NJ so I am not sure if you need an actual 504 or if a medical note is sufficient to gain access to gluten-free food. I would start by contacting your school nurse and dining services contact… they usually have someone in the office over the summer, if school is already out for you. Good luck! And let me know if you have any other questions!
Hi! My daughter has now since graduated high school and is now navigating gluten-free in college 🙂
I am assisting another family with a 4th grade daughter with Celiac. We are meeting with Aramark, the food provider for our school district. Is there information that can be provided to Aramark so that a more robust GF lunch menu and options can be provided moving forward? Thank you!
Thank you Karen and Martin to your replies from last year!
Lisa Vick, the USDA and the American Disabilities act requires all institutions to make “Reasonable Accomedations” for all disabilities. The USDA considers celiac to be a disability. If your school is participating in the USDA Child Nutrition Program, they will have to provide compliant meals, after you take the school nurse a letter from a doctor that explains the dietary restrictions, and the school will have to include it in a an IAP (Individual Action Plan). This would be shared with the teachers, and kitchen staff.
Also there is something schools call FIRPA, which is very similar to medical privacy laws, which school take very seriously. This means, they cannot discuss your daughters condition outside of the people who have a need to know.
If your local school lunch program is not cooperative, then you should contact the state agency that is in charge of Child Nutrition in your state, in this case it is within the New Jersey Department of Agriculture. If that fails you, look up child nutrition in the USDA and determine who you need to talk to at that agency.
I will point out that these meals still have to meet grain (non wheat) fruit and vegetable requirements for a reimbursable meal
I run a Child nutrition program at a small rural school. And we have our first Gluten intolerant student. I was aware of most of the regulations the USDA has concerning food allergies, but this article is giving me a leg up while we find a path to feed this child. We are a Food management company with the motto “Make Their Day” , which is what we are going to be pursuing for this child! I will be ‘Stealing the menu ideas.
Also if your schools use the NutriSlice online menu, it has a filter to show what items are gluten free in the school menu each day.
This post brought tears to my eyes, and has inspired me to be on a mission. My daughter was diagnosed with celiac disease last August. In September as part of the process of developing her 504, lunch options were discussed with the current director of food services for our district by the school nurse. I was in contact with him, and started to make some progress, and then I heard nothing. I emailed him again, and no response. I went to his office, which is in my school, and I couldn’t never seem to find him. I emailed a couple more times, and then got annoyed with the lack of response. I emailed the school nurse, and she told me that he was no longer with the district. I had no idea. She is going to try to make some headway with getting me in touch with the new director. This information will help me to prove that options need to be made available, by law! Why the tears, just shear joy that I have a resource to help me push forward. Thank you, thank you, thank you!