Starting School Gluten-Free, Worry-Free

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As of last week, I am officially the parent of a kindergartener. Like most parents sending a child to public school for the first time, I’ve been anxious (and even a little nervous) about how my daughter will transition to public school. Unlike the other parents of children in my daughter’s class, however, I have an additional dimension to our school preparations: keeping my daughter safe from gluten.

To be honest, the thought of sending my daughter to school was absolutely terrifying at first. She was used to spending her days in our home, where all foods, all craft materials, all lotions, all EVERYTHING is gluten-free. How could she possibly stay healthy in kindergarten, with gluten lurking everywhere?

Obviously, something affected my attitude over the past few weeks, as yesterday my daughter boarded the school bus with a big smile and a confident wave goodbye from Mom and Dad. What happened? A lot of research, many conversations with other parents, and friendly meetings with the wonderful people at my daughter’s school.

I’m happy to share what I learned with you. I’ve consolidated my research and experiences into five tips for a more worry-free start to school. Although they are developed for the child with gluten-intolerance or gluten-sensitivity, these tips could easily apply to other food sensitivities/allergies, so feel free to adapt them to your needs.

Tip #1 – Have a plan for meals and snacks before school starts.

Don’t wait until the first week of school to think about your child’s meals away from home, especially if you expect that your child will purchase meals at school. Although an increasing number of schools are beginning to offer gluten free menus (like these), your school cafeteria may not be anticipating the needs of a gluten-intolerant child. Most school cafeterias will still provide a gluten free meal when given advance notice, however. By law, schools participating in the National School Lunch Program (most all do) must accommodate students adhering to a medically-prescribed diet. Check with your state’s office of education to find out what documentation you need from your physician (for example, Kentucky’s “Medical Statement for Children Requiring Special Meals” can be found here). For more information, this Access to School Lunch FAQ from the American Celiac Disease Alliance is a great start.

Even though you may qualify for gluten free school meals, you may choose to pack your own (we do). You’ll still want to take measures to prevent gluten cross-contamination, but don’t worry – most of these additional steps are just plain good hygiene. Ask your child’s teacher or cafeteria staff to wipe down your child’s table, so that crumbs or sticky residues don’t contact your child’s hands or food. Make sure that your child is given the opportunity to wash his/her hands with soap and water before eating (as hand sanitizer does not remove gluten that may have been picked up during classroom activities). Talk to your child about food sharing – we want children to share, but teach your child how to politely decline food offers from other children.

What about meals beyond the cafeteria walls? At my daughter’s school, like many others, parents provide morning snacks for the class on a rotating schedule. Well before school began, I asked my daughter’s teacher if I could request that class snacks be gluten free, and I provided a letter to parents from me explaining my daughter’s need. I also provided a list of mainstream items that I had identified as meeting our gluten free standards (my daughter is very sensitive to trace levels of gluten). Not only did our teacher copy this list and include it in opening day materials as the ONLY approved snacks for her classroom, but she also revised our letter, making it a request from HER to meet the medical needs of unidentified students in the classroom (Wow, right?).  You are more than welcome to use my list of mainstream gluten free snacks and my letter to parents as a start.

Tip #2 – Always have a backup plan for meals and snacks.

Many of us have experienced moments when our best-laid plans have gone astray. If you pack a gluten free lunch for your child, what will your child eat if an accident happens? What about those unannounced birthday parties when everyone else will be eating cake? Ask your teacher or the school nurse if you can leave spare gluten free snacks in a container designated for your child. Inquire if you can store a frozen back-up gluten free meal in the faculty refrigerator or cafeteria freezer. Make gluten free cupcakes at the start of the academic year and freeze them… you’ll never be caught off guard by an impromptu party.

Tip #3 – Help your school understand your child’s needs.

Let’s face it… until you had to adopt a gluten free lifestyle, you probably didn’t understand the myriad places in which gluten can hide. Our schools are no different. Before school starts, send a letter to your school and district officials requesting a meeting so that you can make sure they understand your child’s condition and needs (you can view my sample letter here). Many teachers and administrators are surprised to learn that gluten can be found in some craft materials, supplies for science experiments or class projects, or in the school nurse’s medicine cabinet, and will be happy that you have provided them with the information they need to avoid an incident.

Before you meet with school officials, consider whether or not you would like to have a 504 Plan developed for your child. This plan is named for Section 504 of the Rehabilitation Act of 1973, which insures that students with disabilities receive an equivalent educational program and student services as those without disability. Although you may not consider a food allergy/intolerance a disability, they are indeed special conditions that warrant protection under Section 504. Many parents choose to make personal arrangements each year with a child’s teacher, but in doing so, they aren’t taking advantage of the special protections afforded to their child through a 504 plan. A 504 plan is a legally-binding document that ensures the school will accommodate your child’s gluten free needs in the cafeteria and the classroom. It further protects you from undue financial hardship as a result of your child’s food allergy/intolerance – the school must provide gluten free foods and acceptable classroom materials, rather than parents. The National Foundation for Celiac Awareness provides a great roadmap for parents and teachers wishing to develop a 504 plan for a gluten-intolerant child.

Tip #4 – Find support from other parents

It can sometimes feel like your child is the only one with a food allergy/sensitivity going to school. Find support from other parents who have travelled this road before you by checking with your area’s celiac disease support group. Make sure that you take advantage of the orientation program or open house that most schools offer before school begins; I was surprised to meet several other parents of children with food allergies, and it was comforting to share our stories and know that I wasn’t alone in my worries.

You don’t always have to talk about your child’s gluten free journey, but you can use your involvement in school to spread awareness about celiac disease and gluten sensitivity. Join the Parent-Teacher Organization and attend school functions when you can; the more parents get to know you and your child, the more they can help their own children develop empathy for food allergies and sensitivities.

Tip #5 – Talk to your child about bullying.

We all have fears that our child may be bullied in school, regardless of food allergies or sensitivities. Earlier this year, a study published in Pediatrics revealed that roughly a third of children with food allergies were the targets of harassment specifically due to their allergy. You can’t always be there to protect your child from a bully, but you can still prepare them to respond appropriately and get help.

First, talk to your child about how their dietary needs might make them a target for bullying. Make it clear to your child that neither retaliation nor silence is an acceptable response to bullying, and that it should be reported to school personnel immediately. Consider role-playing to help your child plan an appropriate response to a bully’s taunts or action. Most importantly, early discussion about bullying might help your child talk to you about it if it unfortunately occurs. The one bright lining to that Pediatrics study about food allergy bullying? When parents were aware of the bullying, their child’s anxiety was less pronounced and their quality of life scores were better than children of unaware parents.

Discuss your concerns about bullying with your child’s teachers and administration. Encourage your school to offer awareness programs about food allergy bullying as part of their broader anti-bullying educational programs. If your child is being bullied and school officials are not responding appropriately to your concerns, make sure they know that harassment about food allergies is against the law. For more information about food allergy bullying and how to prevent it, check out the great resources provided by FARE (Food Allergy Research and Education).

 

Do you have any additional tips to share on how you helped your child and your school transition to a gluten-free, worry-free classroom? If so, please share in the comments. Have a great school year!

 

 

8 Comments

  1. Teresa Lynne

    August 16, 2013 at 3:02 pm

    Hello. One thing I think missing from your very informative post is to remind parents to read labels to identify foods with genetically engineered crops (GE or GMOs). More and more research is proving health consequences from eating these. Especially our children, as their smaller bodies are affected even more. These diseases include: allergies, tumors, digestive and intestinal problems, auto immune disorders, kidney and liver damage, irritable bowel syndrome, birth defects, sterility and more. If you see any derivative of corn, soy, canola or sugar (except cane sugar) or organic of any of these listed in the ingredients, the product contains GMOs. PLEASE READ LABELS CAREFULLY AND DO NOT EAT THESE OR FEED THEM TO YOUR FAMILIES. We are all unwitting participants in a msassive scient experiment. These organisms have had no long term testing!

  2. Dale

    August 16, 2013 at 4:14 pm

    Thanks for this! My 2nd grade son was diagnosed with celiac after the end of the school year. His teacher sent a quick on-line survey to parents last week and asked if there was anything allergy-related she should know. Of course I noted the celiac diagnosis and the need to avoid gluten. At back to school night last night, she had a ziploc bag of goldfish on each child’s desk. Duly noted: I’m going to have to stay on top of this, I cannot rely on others.

    Personally, I wish they would just implement a “no shared food in the classroom” policy. I’ve been ranting on this for a couple of years now: Why can’t people be responsible for providing food for their own children? What set me off was snacks after flag football games. Every parent was expected to provide the team with a snack and a drink after one game for the 10 week season. AND, some of the parents wanted snack bearers to bring enough for siblings to be included. I have 3 sons, and each of them played on a team, so they’d get a snack from their own team as well as both of their brothers’ teams. They loaded up on unhealthy snacks and sugary drinks every Saturday for two months. I wouldn’t have minded the snacks so much if it had been used as a coaching and team bonding opportunity. But it never was. All the kids simply grabbed their snack and drink and took off. It got me realizing the barage of times unhealthy foods were foisted on our kids. Banks, dry cleaners, liquor stores, restaurants – every place has lollipops, a bowl of Hershey’s kisses, Jolly Ranchers, mints, etc., which as a distracted parent trying to get something done, is very hard to monitor for a 12, 10 and 7 year old. Combine that with team snacks, sleepovers, and in-school parties, and it started feeling like my kids were getting more unhealthy calories than healthy.

    Our eating at home was clean, but we had to lay down the law with some self-control in other environments as well. But now that we are new on this celiac awareness journey, it has me scrutinzing the school setting even more. I now realize how much “food” (i.e. junk food) is consumed by our kids while at school. I feel pretty confident stating if every parent in the classroom had to prepare something for their child only every single time there was to be a shared food activity, the other parents would jump on board to the “no shared food in the classroom” policy post haste.

    I GET that food is social – especially being at family reunions this summer and preparing our family meals (we are all 5 going gluten-free in support of the youngest) separate from everyone else. But there are other, more constructive ways children can be social with their classmates. If food is desired, orange slices and grapes were the go-to back in the day. Let’s go old school.

    • molly

      October 12, 2015 at 5:48 pm

      I have a gluten allergy and doctor thinks my daughter also has it. School will not acomodate her with out a doctors note. I don’t want to put her through all that testing or a Colin oscapy like i did. She is terrified of doctors help

      • Cathy

        October 29, 2015 at 9:08 am

        That’s unfortunate. If your doctor thinks she has it, why doesn’t he/she write a note?

  3. JM Breiner

    November 25, 2013 at 9:48 am

    After 20 years of misery, I was diagnosed with Celiac Disease by a natural healing specialist. My older son was also diagnosed by the same person and my younger son has been gluten-free from birth. Neither of my sons have a gastrointestinal response to gluten, but they break out in rashes. Since they have not been diagnosed by a traditional medical specialist, I have run against road blocks to the school meeting their needs. I have discussed the issue with each teacher each year, but they still don’t understand. On a recent outing to the local pumpkin patch, each child in my son’s kindergarten class was given a “pumpkin” cookie. Having always been gluten-free and having a fully cooperative extended family, my son assumed it was ok to eat. It was my older son who notified me of the cookie, not the school. When I talked with his teacher, I was told that he needed to be better at knowing what he can and cannot eat. My children rarely get sweets of any kind, so imagine the temptation a large cookie in the hand poses for a 5 year old.

    I have taught my children to put a napkin down on the table before eating and to not anything that has touched the table. This includes eating at restaurants.

    My children have the added difficulty in being sensitive to night-shade plants (potatoes, tomatoes, peppers, eggplant, etc.) And with nut and peanut restrictions in the school, there are very few snack items they can have.

    I concur with Dale, but children these days are used to “junk food”. When my older son was in kindergarten, I volunteered to “bring a snack” for the Halloween party. I selected nice organic Fuji apples, carefully washed and cut them and packaged them in brightly colored bags. I also volunteered to help with the party. I witnessed all the sweet “snacks” were eaten, but the majority of the apples ended up in the trash.

    So wherever we go, whatever we do, school related or not, we bring our own food. It is just easier.

    • Dale

      November 30, 2013 at 10:16 pm

      I have had mixed results with my no snack proposal at the team level, so I took it up with the league this fall. They decided to go with a “no snacks and drinks” recommendation for the winter basketball season. Coaches of ~2nd grade and up were in full support. Coaches of the younger teams thought kids would be disappointed with the season. It won’t take long for this to become the norm.

      • Ma Hubbard

        November 30, 2013 at 10:33 pm

        That is fantastic, Dale! Kudos to you for taking the initiative to make this happen. Sorry that I missed your earlier comment in August (JM helped bring it to my attention just now) — it is “spot on.” The amount of candy given to our children on a DAILY basis at school and other extracurricular events is incredible (and appalling). At times, I’m almost thankful that our daughter is gluten-intolerant, just because it makes turning down candy from these “well-meaning” individuals so much easier. I hope we can all draw courage from your example, and effect this kind of change in our own immediate communities — way to go!!

    • Ma Hubbard

      November 30, 2013 at 10:21 pm

      I’m sorry for the delay in responding, JM, but I’ve been enjoying my family during the Thanksgiving holiday. You’ve touched on so many issues here. First, it is troubling to hear that a school would be so dismissive about a skin reaction to gluten (which sounds like the non-gastrointestinal manifestation of gluten intolerance, dermatitis herpetiformis). Second, it is frustrating that you obviously know what your sons need to stay healthy, but that a “real” diagnosis would require giving them gluten and tissue sampling (whether a blood draw or a skin biopsy). Might you have a celiac support group in your area that you could reach out to in order to find a “mainstream” physician that is knowledgeable about the many facets of celiac disease and gluten sensitivity? They may be willing to provide the documentation that you need to get a 504 plan for your children, without invasive tests. Best wishes!