GLUTEN AND SCHOOL
GRADES K - 12
Holidays
GLUTEN AND SCHOOL: GRADES K - 12
School: Grades K – 12
When your child is in school, you no longer have any control over what is eaten. On the other hand, the good news is that the law requires educational institutions such as schools to make what are referred to as “reasonable accommodations” for children with celiac disease or gluten intolerance and your child cannot be discriminated against because of a health condition. To learn about the law, click here.
Gluten related health conditions may be new to the school or to the people involved with your child. Staff members need to understand that even a crumb from another child’s lunch or the dual use of a serving utensil can be a problem for your child.
As soon as there is a diagnosis, or before the start of a school year at a new school, notify the school and the head of any activities in which your child will participate (such as sports or theater) about your child’s food sensitivity and other allergies. It is best to do this in writing addressed to the head of the school, the school nurse and the person in charge of the activities and then to meet in person with each of these people.
In the letter include:
Your child’s name and diagnosis.
That what you are writing about is a matter of your child’s health – not a lifestyle choice.
Request an in-person meeting. In-person helps remind of the importance of your request.
How to contact you.
It would help if your child’s teacher(s) also receive a copy of the letter.
At the meeting:
Educate about your child’s health condition, what gluten is, common places it can be found, a few uncommon places and the effect being glutened has on your child. It may be helpful to refer the person to our guides about these subjects.
Let the person know you are trusting the school to do right by your child.
For young children, check that toys and play materials are gluten free. With knowledge, alternative solutions may be supplied in advance.
Bring up the subject of bullying. Unfortunately, a lot of children are bullied because of their food restrictions. The school needs to anticipate bullying, inform students it is not permitted for any reason, and advise about consequences. (It helps to also give your child the tools to stand up for on their own. Parenting books and websites can provide help if needed.)
Let the person know that if the school has a cafeteria, your child cannot eat from the line because of the possibility of cross contamination (both in the kitchen and by people using serving utensils that have touched gluten.) Your child can eat gluten-free foods that are prepared with separate pots, pans and utensils without the possibility of cross-contamination.
Feel free to share our lists of food with gluten and food without gluten
Remind about processed foods and ingredients that may contain gluten.
It is worthwhile to let the person know that even a miniscule amount of gluten can hurt your child.
Ask about the school’s policy about special treats and birthday celebrations. Consider leaving a sealed bag of gluten-free snacks (treats) for the teacher to use on those occasions so your child is not left out.
NOTE: If there are particular books or articles you find helpful, please share with us: info@CharliesTableOasis.org. If you can teach your child to be an educational advocate, so much the better.
While you are at the school:
Speak with your child’s homeroom teacher if one has been assigned to explain your child’s condition and needs.
Request that the supervisor in the cafeteria walk you through the lunch line. Ask:
Does the person in charge of the menu and obtaining supplies have experience with gluten-free food?
For an explanation of how your child will be identified to servers
How your child will make his or her meal selection.
Will there be a prepared plate?
Will there be gluten-free foods next to other foods?
One last step which is advised by a parent, Andrea Levario, J.D.: Take notes during your meetings, including the comments and suggestions you receive. After all the meetings, incorporate all your notes into a School Action Plan. Give a copy of the plan to all the people you met along with appropriate staff. If you are not happy with the results, consider a 504 plan. For information, click here.
As time progresses, do not assume the Plan is being adhered to. Check periodically with school personnel (as well as ongoing checks with your child.)
If your child will carry a lunchbox to school, work with your child about foods to include. It helps to put an identifier on the lunch box to keep it from getting mixed up with another child’s “just in case”.
Learn the school’s policy about special treats and birthday celebrations.
Consider leaving a sealed bag of gluten-free snacks (treats) for the teacher to use on those occasions so your child is not left out.
Watch for your child being bullied or put down because of the need to eat gluten-free.
TIPS
Try to find other children in your child’s class who have food allergies. Talk with those parents about coming up with a plan together.
Consider asking if there is a freezer at school in which you can store some gluten-free party cupcakes. That way your child can be included even in surprise parties.
Through the elementary school grades, check on the art supplies used in school to be sure they do not contain gluten.
Jules E. Dowler Shepard suggests that if you can’t reach a satisfactory resolution at the school about what is necessary to keep your child safe, and you’ve gone up the ladder, contact local news media to alert them to the problem in the school. Go online. The odds are that your child will not be the only one to face the same problem due to food allergies and intolerances.
School: Every Day
Ask your child what the other children are eating.
Let your child pick out a gluten-free snack so there is no feeling of not fitting in or feeling alienated.
School Parties
Learn about the school’s policy about birthday parties and other events where parents can bring in food. If you do not like the answer, speak with the school principal. Explain your child’s situation and the necessity of eating gluten free. Also explain about cross-contamination and cross contact..
Some schools do not permit homemade foods. They require foods from commercial establishments. If there is no establishment where you feel secure that their party foods are truly gluten-free, then speak with the principal.
TIPS
If one doesn’t exist, create a contact list for the parents of your child’s class so you can speak directly with other parents if needed.
Ask that you be notified if there is going to be a birthday party. Preferably there should be a few days notice. If not, at least the day before.
When notified of an upcoming party, speak with one of the parents directly to find out what food or snacks you can bring or send with your child that will be comparable to what the other children will be eating. Some parents have cupcakes in the freezer for this situation in case the notification is only the day before the party and there is no time to buy or make something comparable.
Holidays
Holidays can be particularly tricky whether you are cooking at home or going to someone else’s home. To quote Erica Dermer: “Gluten does not have to be the star of your holiday if you don’t want it to be.”
Most of the foods served at the holidays can readily be altered to be gluten-free.
Hosting a holiday meal at home is the easiest way to remain gluten-free. You have contorl over the menu and food preparation.
If the holidays will be at someone else’s home: Review our guide about eating in someone else’s home. Keep in mind that if a turkey will be served, if there is gluten in the stuffing, it travels throughout the turkey. Likewise, you cannot eat the inside of a pie or cheesecake while avoiding the crust.
If the holidays will be at your home: Consider the following tips:
With today’s products, there is no reason for people to know that you are not serving gluten. (see Ingredient Substitutes)
At the grocery store: there are gluten-free gravies, jellied cranberry sauce; stuffing and holiday-themed mixes such as Simply Organic gluten-free pumpkin cake mix.
Decide whether you will have a completely gluten-free meal or make some dishes that contain gluten. Also decide whether you will ask other people to bring dishess containing gluten.
If you serve both gluten-containing and gluten-free foods, separate them to minimize risk of mix-ups. Use separate serving utensils to avoid contamination from cross contact.
TIPS
A turkey cooked in a bag with gluten-free stuffing could be glutened if flour is used in the bag.
A turkey baster is difficult to clean and may not be gluten-free, for example if first used on a turkey with stuffing. Bring your own.
Self-basting turkey is likely to have gluten in it. You can offer to make a turkey.
Be careful before eating casserole dishes where you do not know the ingredients. Many holiday casseroles contain gluten.
It is safer to avoid oats because of the possibility of contamination in growing or processing.
Parties For Children Outside of School
When you RSVP to a party for children outside of school, let the other parent know about your child’s health condition and the seriousness of it. Explain how even a crumb of gluten can cause a problem – and about cross-contamination from cross contact.
For even the host or hostess with the best intentions, it is very difficult to make something special for your child that will be gluten-free. Rather than impose, offer to make food for your child to bring.
Consider making enough treats for your child to share with other children.
For your child’s own birthday party: make child friendly gluten-free food for everyone. It should taste like the best gluten containing versions. With all the alternatives available today, this should not be a problem. There is no need to discuss the fact that the food is gluten-free.
Overview Of A 504 Plan
A 504 plan refers to section 504 of the Rehabilitation Act of 1973. The law relates to all public schools and many private schools through high school.
Under the law:
The health conditions celiac disease and gluten sensitivity are considered to be disabilities under the law.
Prohibits discrimination upon disability for all schools which receive federal funds.
Requires the needs of students with disabilities to have equal access to programs and services as those who are not disabled.
A 504 plan addresses more than just an accommodation for eating gluten-free. It outlines a plan of services for students in the general education setting. A 504 plan also identifies reasonable accommodations to help the child succeed in the classroom.
NOTES:
A 504 plan is different than an IEP Plan (Individualized Educational Plan.) IEP is a plan or program developed to ensure that a child who has a disability identified under the law and is attending an elementary or secondary educational institution receives specialized instruction and related services. Children with celiac sensitivity do not generally need specialized instruction.
504 plans are not transferable between schools.
504 plans do not apply to colleges.
A Sample 504 Plan
The Mass General Hospital for Children, Center for Celiac Research publishes a Sample Section 504 Plan which is intended as a guide for children with celiac disease. The sample must be adapted to individual needs. To see the plan, click here.
A 504 Training Program
The Celiac Disease Foundation has developed a video series and companion guide that instructs schools about how to implement accommodations required by the Americans With Disabilities Act for children with celiac disease. It helps structure a 504 plan based upon what is medically and psychologically necessary for children to succeed at school. To register, click here.
Choosing A College: Before You Start
Set aside the time needed to research what the school does to accommodate students with gluten issues. Time now will save stress on the back end.
Keep in mind that a person with a gluten related issue can attend any college or university. Thanks to federal law, schools of higher learning must make reasonable accommodations for students who have to eat gluten-free because of a health condition.
While a “reasonable accommodation” means the school has to offer students gluten-free food, it does not mean that a school has to provide gluten-free food accommodations in a particular manner. A “reasonable accommodation” has to be reasonable to both parties. What is reasonable for a large school may not be reasonable for a small school. Examples of a reasonable accommodation for a college student may include:
Allowing the student to opt out of the school meal plan
Permitting a student to have a refrigerator in a dorm room
Allowing a freshman to live in an apartment with a kitchen which is normally not allowed for freshmen.
There are some schools which are better than others with respect to accommodating students with dietary needs. For instance, a few schools have dedicated gluten-free cafeterias.
Choosing A College: Where To Start
Thinking about which college to choose can be overwhelming. Places to start that can be helpful include the following:
Your high school guidance office.
BestColleges.com has a list of colleges and universities that have accommodations for students with allergies and intolerances.
Search online for colleges that fit your criteria. When looking at a college’s website, keep in mind that all colleges are businesses. What is on their web site is marketing. Plus a web site may not be up to date.
The Colleges 101 course noted in Tips below.
Once you have one or several choices in mind, with respect to each school:
Search on the internet for what you can learn about a “gluten-free climate” or “gluten-free” on campus. If there are several equal choices, consider choosing the one that is better for students with gluten issues.
Consider where the school is located. The surround can make a huge difference in the college experience. For example, are there grocery stores with gluten-free food and gluten-free bakeries nearby or at least easily accessible?
Are there gluten-free restaurants and food sources available? A lot of socializing happens while consumig food.
Is there appropriate medical care available?
Look online for trusted bloggers who talk about the school and their experience there.
Once you have one or several choices in mind, set up a campus visit.
A Campus Visit: Before Going
Get a letter from your child’s physician documenting his or her medical condition and the need to ingest only gluten-free food and drink. To assure the letter is as strong as possible, and includes specific situations as needed, it is helpful to write the first draft yourself or at least write notes about your child and give it to your doctor. Make multiple copies of the doctor’s letter to take to campus with you.
As you go, create a paper trail of your interaction with personnel at each school. Include a description of your child’s medical condition and needs, as well as the accommodations which are discussed and agreed to. For instance, if possible, make appointments by email or text instead of over the phone. Confirm all discussions and agreements by email.
Prepare a list of questions and print it out or put it on your phone or other mobile device.
All colleges have an office, or at least a person, in charge of disability services. The name of the office differs from school to school.
Set up either in-person or virtual meetings with the office of disability services as soon as possible. (Under the federal Americans With Disabilities Act, a health condition can be a disability – even though it is not disabling in the traditional sense.) The office of disability services is the best source for learning what gluten-free alternatives are available and what accommodations the school offers.
The office will also be your student child’s partner for the whole time in school. This is also the place to go to if future accommodations are needed.
The office will hopefully assign your student a staff person to help all the years your child is in school.
Also set up meetings with student services, the housing office, and dining service.
While On Campus
Start with a meeting with the disabilities office. The office is likely to be able to provide an overview of accommodations that are available, including food service in dining halls and cafeterias, and which of the dining rooms serve gluten-free food.
Explain to people at the school about your child’s dietary needs- including the need to eat gluten-free 100% of the time. Be a strong advocate, particularly if the staff is not trained about gluten-free.
As a general matter, when asking questions, get granular – the more specific the better the information you’ll receive. For example: instead of “do you have gluten-free options available?” ask: “Specifically, what gluten-free options are available (for dining)(for living accommodations) (academically)?
Is there a place on campus to get a hot gluten-free meal?
Tell me about variety: for example, how often is the menu changed?
Is food available in the evening? On weekends?
Does the person understand celiac disease/gluten sensitivity and the needs beyond eating?
What kind of accommodations have been offered to students in the past? Accommodations are in three general areas: Housing (such as a single room or a room near the safest dining hall), Dining (access to gluten-free food) and Academics (for instance if a class or exam is missed due to an accidental glutening). NOTE: students with accommodations usually receive a document to show teachers that provides information about the possible need and an accommodation
Ask to meet a student who eats gluten-free. There is no HIPAA or privacy issue if the student agrees to meet.
Is the person you meet with easy to speak with?
Are they up to date on what is happening on campus? For example, about a student who asked for an accommodation on a certain floor?
What is the office like? It can be an indication of how seriously the school takes these issues. For instance, it is tiny and hidden away?
If gluten-free food is served in a dining hall: check out the dining hall.
How far is a dining hall with gluten-free food from dorm rooms?
Try to eat in the dining hall. Check out the reality of the gluten-free – and the variety, quality and taste of the food offerings.
o Ask for a menu of gluten-free foods for the next few weeks.
o How is the dining hall staffed? Do students serve themselves?
o Is there a dedicated gluten-free area? A freezer with frozen gluten-free foods?
Speak with the manager of the dining hall. Ask for a tour of the dining hall kitchen so you can see whether gluten-free food is made in dedicated areas, with dedicated utensils with protocols that avoid cross contamination. Ask staff about what training there has been to keep food gluten-free. It may help to review our video for people who work back and front of house in a restaurant for your own information about what is needed to make gluten-free food safely, and to have a copy of our guide for restaurant owners with you to help educate about what gluten-free in a commercial kitchen means.
Ask staff about what training there has been to keep food gluten-free.
It also would be helpful to have ongoing contact with individual members of the food service staff. They would be more likely to watch out for your child.
Take notes in meetings or record them on your phone if permitted.
Send follow-up emails confirming your discussions.
Of course, always be polite and thank people for their time and consideration. A bit of honey goes a good distance.
Last, but not least: check restaurants and grocery stores within walking distance for gluten-free items. If the store(s) do not carry what you would like, speak with the manager and ask the store to carry the products. It wouldn’t hurt to let the manager know that you and your child will spread the word about the presence of the product and how user friendly the store is.
NOTE: If the school does not offer gluten-free food, ask to speak with the head of student affairs, and ultimately the President. Thanks to federal law, colleges must accommodate gluten-free needs of people with celiac or gluten intolerance.
If living will be on campus:
Find out what accommodations the school offers with respect to living quarters. For instance:
Does the school help find a roommate who eats gluten-free?
Does the schol permit a refrigerator or cooking appliances in the room? If so, what size? Most schools prohibit toaster ovens because of the fire risk.
If these appliances are not permitted in a freshman dorm, are there upper class dorms in which they are permitted? If so, ask for an accommodation allowing your child to live in an upper class dorm.
When requesting a specific dormitory, ask for “needs-based housing.” It generally has priority over standard housing.
Is there a required meal plan -- prepayment for a minimum number of meals per week?
If yes, are gluten-free foods offered? Are they safe? Any good?
If the plan doesn’t work for your child, ask for an exception – or at least a reduction in the amount of the payment.
If necessary to get what you want, cite the federal laws requiring a reasonable accommodation. One accommodation to consider is a modified or waived meal plan, or permitting your child to live off campus in an apartment with a kitchen.
Do not be surprised if at least some of the people with whom you speak are not aware of celiac disease or gluten intolerance or what needs to be done to accommodate the health conditions. Be patient with your explanations.
Surviving The Transition To College
Leaving home for college is a big transition. In addition to leaving the safe environment of family and friends, there is peer pressure to fit in. Your child may want to hide his or her health condition.
Help your child take charge with a few reminders:
Always plan and anticipate – and carry gluten-free snacks.
If necessary, gluten-free food can be ordered from websites and online stores. You can help with ongoing support and good information.
A gluten-free diet as such is not necessarily healthy and to pay attention to eating a balanced diet. It is not always easy to eat nutritiously when running around campus and surrounding areas, but it can be done.
If a problem is encountered, speak up and speak out. The school disabilities office (no matter what it is called) should be thought of as a partner for good health and getting what is needed.
Tips
Ask your teen to practice speaking up for his or her needs now – before going to college. Practice should include an elevator pitch - a sentence or two that doesn’t have to be thought about to describe why he or she must eat gluten-free and what that means. For example, “I have an auto immune disease. If I eat even a crumb of gluten, I can get sick. By the way, gluten is a protein in wheat, barley and rye.”
Keep in mind that eating is a social activity. Ideally, your child will not only be gluten-free safe but also be able to socialize at meals.
Quality varies by school. Ask yourself: does the school take gluten sensitivity seriously?
If you want to send your child a care package at school, think about the perishable nature of the product and how packages are sorted where your child lives. For instance, it may take several days between the time a package arrives on campus and is actually delivered to a dorm room.
If your child will live off campus, look for a kitchen that can be safely shared if your child will have roommates. Ideally, everyone will agree to eat gluten-free in the apartment. (To learn how to make a shared kitchen gluten-free safe, click here.)
For additional information
Consider working with an education consultant and/or taking Andrea Tucker’s “Gluten Free College 101” course for parents of children with celiac disease or gluten sensitivity. The course includes:
Information about a variety of colleges and their accommodations for people with gluten issues
A college list builder worksheet
Physician’s letter template
Common gluten-free accommodations
A list of disabilities offices
Dorm room essentials checklist
Easy dorm room food/meals
Care package shipping tips and tricks
A college medical kit
Access to current and past groups of college students to speak with
For information about Gluten Free College 101: www.glutenfreecollege.com
COLLEGE – A STUDENT’S POINT OF VIEW
Always keep in mind:
A health condition does not define you. It is a part of who you are.
Everyone has something.
You are protected by the federal law known as the American With Disabilities Act. While you are not truly disabled, you are still protected under the law. Primarily this means you are entitled to reasonable accommodations to fit your health needs. The result is you should have the same access to opportunities that every other student at the school has.
Avoid Being Glutened
Use your best efforts to avoid being glutened – and definitely, no matter what, do not ingest gluten voluntarily – even if it is a rite of passage in a fraternity or sorority. A gluten health condition can affect your ability to attend class, participate in sports or other activities and even your academic performance. Just in case, keep in mind what to do if you do get glutened.
Tell People About Your Dietary Needs
If you didn’t tell school personnel about your dietary needs, tell the office of disability services (or the office that covers disability services), your resident and academic advisors, the school nurse and the dean of students. Most particularly, if you eat in the school dining room, seek out the head of food service. If the person isn’t familiar with gluten-free, consider giving a copy of our Restaurant Owners Guide.
If you can, make friends with the food service staff – particularly people who make the food.
Friendship And Support
While most people do not want to shine a light on being gluten-free, keep in mind that it usually only takes one conversation up front. Consider directing people to our guide about family and friends to educate them in the practical aspects of living gluten-free.
Consider turning your health condition into an advantage. Use it as a way to meet people you would like to share time with, help other people – and maybe even make a change on campus.
You can help support each other and exchange information and advice. Once place to do that is through the college’s Facebook group.
There may be a Meetup group member who attends your school – or even one nearby. Put an ad on the student section of the school website or in the school paper (you don’t have to mention your name if you’d rather not.) Consider starting a support group. If there aren’t enough students in your school who know that they need to eat gluten-free, perhaps there are nearby schools to include – or start a group online.
Dining Halls
As a general matter, it is preferable to avoid lines of open food. Utensils used in a food with gluten can inadvertently be left in a food that is supposed to be gluten-free. Bits of food from one food may inadvertently fall into a gluten-free food while being dished up.
If you have to choose food from a buffet or other open food area:
Speak with the manager about your need to eat gluten-free because of a health condition. Given the risks of cross contamination from cross contact, ask what arrangements would be most convenient for the staff while keeping you safe. For example, can a plate of food be made for you in the kitchen? How will that work logistically to be the least bother to staff? NOTE: If the manager is not accommodating to your needs, speak with the school’s head of disabilities.
Ask the manager if there can be a separate area or room with refrigerator and toaster for gluten-free food. Such an area or room could also contain food geared for people with other food allergies. (This would also be a great place for you to meet people in a similar situation.)
Food In Your Room
Keep a supply of healthy snacks in your room - including for those occasional late night studies.
Keep food in your refrigerator if you are allowed to have one. If you share a refrigerator:
Keep your food on a top shelf.
Always be sure containers are closed so there is no chance of cross-contamination.
It helps to have a variety of zip-lock bags and plastic containers so your food doesn’t become cross-contaminated.
Mark all food which is yours – possibly in red which is generally regarded as a stop sign.
Roommates
If you have a roommate:
It helps if the person also needs to eat gluten-free. If living off campus, that person does not have to also be a student in your school.
Let your roommate know that you not only have to eat gluten-free but that you have to do it 100% of the time.
Teach about cross contamination – and how tiny an amount of gluten can be dangerous for you. It’s one thing to say l/8th of a teaspoon of gluten is a problem. It may be more helpful to show Jessica Hanson’s video to drive the point home.
If there is a kitchen, review with your roommate our information about keeping safe in the kitchen.
Athletics
If you join a college sport, be sure to let the coaching team know that you can only ingest gluten-free food, medicines, vitamins, and supplements. Watch for gluten in ointments used to soothe sore muscles. While gluten cannot be ingested through the skin, it is easy to touch a trouble spot and put your hand in your mouth.
Many people who eat a gluten-free diet do not get sufficient vitamins and nutrients. Ask for suggestions from the coaching staff.
TIPS
It helps to have a short “elevator speech” describing your health condition that you can easily recount if someone surprises you and asks about your condition. For instance: “I have celiac disease. It is an autoimmune disease. If I ingest gluten, which is a protein in wheat, I hurt myself. It can also lead to other diseases.”
Always ask if you are not sure if an item is gluten-free.
An easy way to make friends is to join whatever organization on campus relates to an interest of yours. If one doesn’t exist, as noted above, consider starting one. A student advisor should be able to point you in the right direction for getting started.
For a Webinar Archive of questions and answers from gluten-free students and grads, see BeyondCeliac.org
Keep healthy snacks with you at all times “just in case.”