Celiac Disease Program
A Safe School Environment
How to prepare your child with celiac disease for school and ensure that it's a safe environment for him or her.
Before the school year begins, meet with the school nurse and teacher to discuss celiac disease and your child's needs while in school. Bring useful pamphlets or books with you to the meeting.
Work as a team to create a safe academic, social, and emotional environment for your child. Make sure the school staff does not define your child by his/her diet.
Although it may be easier to explain celiac disease in terms of an allergy, remind staff it is not truly an allergy and eating gluten will not cause a life-threatening reaction.
Focus on areas where food is a part of your child's day: snacks, lunch, and special events such as parties. Food may also be part of the curriculum. For example, art projects may use macaroni as a material, and studying other cultures may include tasting of ethnic foods.
Ask how information about your child's needs will be communicated to classroom aides and substitute teachers.
Offer to educate classmates and their families about celiac disease.
Provide a container of gluten-free treats for your child to be kept in the classroom and store a few gluten-free cupcakes in a school freezer for the unexpected birthday celebration.
Ask if you may send a letter to parents of classmates requesting notification if they are sending a treat into school so that you can provide a safe, gluten-free equivalent treat for your child.
|Meet with the director of food services and cafeteria manager to determine what, if any, menu items might be safe for your child to eat. Research all ingredients and preparation of meals with the staff. Ask for a copy of the monthly menu and identify any gluten-free options for your child. This effort is worthwhile, even if your child may partake of the cafeteria food on a limited basis, for example, a drink, a piece of fruit, or a bag of safe chips.|
Support a gluten-free school environment
Food is everywhere in the school system from preschool and day-care through middle school, high school and college.
Regardless of your child's age and level of school, it's important that you maintain a positive relationship with the school as you discuss options for keeping your child safe from gluten exposure. Remember, you are your child's best advocate and a successful advocate has a positive working relationship that will foster change.
The following ideas have been compiled to assist parents as they begin to prepare a school or day-care center for the entrance of their child with celiac disease. This list is not all-inclusive. Every school and child is unique. Please use only ideas that help you in setting up a plan for your child's school.
- Get a letter from your pediatrician or gastroenterologist (GI) confirming your child's medical condition, and if necessary, outlining her specific needs. (Be sure the letter states that celiac disease is a life long disease, so you will not need a new letter each year.)
- Prepare to set aside time for multiple meetings before and after school starts. Learn whom you need to talk to at the school about providing a safe environment for your child. If there are community events at the school, attend them with your child so that you can both become familiar with the school.
- Always make appointments with school personnel (school nurse, principal, food service director, teachers, specials -- art, speech, etc.) to discuss your child's needs. It may help to bring a photo of your child if they've never met her or him. Show gratitude, appreciation and offer to pitch in and help.
- Create a written plan for your child together with essential school personnel. Include procedures for all situations in which food is involved.
- Review and adjust the plan as needed, but at least twice a year.
- Keep meetings regarding food issues separate from meetings regarding academic performance as much as possible.
- Avoid discussing your child's health issues at school with teachers and parents in front of him as much as possible.
- Write thank you notes.
- Follow up and stay on top of those who aren't cooperating and document.
Preschool, Day-care and Elementary School
Important things to know:
- Classroom size and teacher/child ratio.
- Has this school or teacher supervised children with food issues before?
- If yes, what kinds of plans were put into place?
- Is the teacher comfortable with your child's medical condition and with making the changes necessary for your child to feel safe and included?
- Is there a full-time nurse?
- Are there other children with food issues in the class?
- Are snacks served? If so, who provides them?
- Is there a list of snack foods and drinks traditionally provided by the school?
- Are containers used to store snacks thoroughly cleaned and gluten free?
- Are there safe hand and face washing policies in place?
- Are tables cleaned after snacks are eaten?
- Are children allowed to share food?
Lunch and cafeteria
- How and when are tables and chairs cleaned after food is served?
- Where is lunch served?
- If your child's lunch needs to be heated, what adult will safely do so?
- Are there any gluten-free foods offered by the school?
- Is food a regular part of birthday celebrations?
- Can a frozen cupcake be kept in the teacher's freezer?
- Can a bag of candy or special snack be kept in the teacher's desk?
- Can parents be encouraged to send in non-food items (e.g. stickers or pencils) to celebrate birthdays?
Special Activities and Other Celebrations
- Which holidays are observed in school and which ones involve food?
- Are parents allowed to bring in food treats unannounced?
- If food is a must, encourage fruit and cheese instead of donuts and cake.
- Ask that the teacher contact you ahead of time so that you know what will be served.
- Is there a sensory table? Instead of barley, flour, and pasta, suggest substituting rice and beans.
- Do they cook in school? If so, when and what? Suggest using a flour free recipe and/or using a gluten-free flour mixture (you can provide).
- Does counting or estimating numbers involve food (e.g., candy or cereal)?
- Is food used in science projects?
- Are there non-food substitutions that can be made?
- Are there food materials used in art or crafts? (e.g., pasta necklaces, cereal collages). Suggest using gluten-free versions or avoiding the use of food altogether.
Is play dough used? Commercially made play dough has wheat flour as a main ingredient. You can make your own "play dough" by using rice flour and corn starch:
- 1 cup cornstarch
- 1 cup salt
- 2 teaspoons cream of tartar
- 1 cup water
- 1 teaspoon cooking oil
- Food coloring, if desired
- Directions: Mix ingredients. Cook and stir on low heat for 3 minutes or until it forms a ball. Cool completely before storing in a sealable plastic bag.
- Are stickers or envelopes used? The adhesive in many stickers and envelopes contains gluten. Suggest using self-sticking crafts to avoid any risk.
- Is pudding used to paint with?
- Is papier mache used? Most papier mache recipes contain wheat flour. Rice flour or any gluten-free flour mix can be substituted.
- How many field trips are taken?
- How are the students transported and supervised?
- Is there food of any kind involved?
- Ask school personnel if and how they will educate children in the class about food issues.
- Ask school personnel if and how they will educate parents of children in the class about food issues.
- Research recipes that work ahead of time for school celebrations. Most common needs will be candy, cookies, cakes, general celebration and holiday foods.
- Prepare to volunteer to help facilitate any gluten-free food needs that the teacher or school may have.
- Consider giving the teachers a list of gluten-free snacks that your child can eat.
- Ask the school if it will distribute a letter explaining individual student food issues and describing the school plan for snacks, birthdays and school celebrations. The letter shouldn't name children specifically, rather state that there are children with food issues, so as not to single anyone out.
Middle and High School
Middle school and high School is often the time when students become most concerned with fitting in. Eating the 'same' foods at lunch as their peers often is especially important to the student with celiac disease. Identifying those foods and finding gluten-free options can be very important at this age.
Some students may bring their own lunch from home, however, many middle and high school cafeterias will have an increased selection of foods and snack items and, hopefully, some of these options may be gluten-free.
While the use of food within the classroom may decrease because of fewer parties, it can still be present in the curriculum. The use of food as "rewards" may also continue. Bake sales or other foods for purchase for fund-raising events can exist. Unlike in elementary school, your child may now be hesitant to have a parent approach the teacher or the school. The middle or high school student may decide to handle this issue on their own, or deal with the situation by avoiding foods all together.
Tips for parents of older children with celiac disease:
- Contact the cafeteria, preferably the head of food service, during the spring prior to your child's entry into the school and explain the dietary restrictions. Request the opportunity to read the ingredients on food labels and the ingredients used in the cafeteria. Contact the companies yourself to determine the gluten-free status of questionable ingredients. Learn about the preparation techniques of potentially safe items, (i.e. are the French fries baked or fried? If fried, is the oil contaminated? Are the French fries coated with any unsafe seasonings or flavorings?) Read the labels of anything you think your child might consume (a note of caution, some hamburger patties contain oats or other fillers).
- Check to see if your child can obtain permission to purchase 'snack' items as part of the price of their regular lunch and make sure that staff are aware of this arrangement. For example, yogurt, chips and fruit offered as a "snack" may be good additions to their meal. Likewise, if your child can only safely purchase a portion of the lunch offered, make sure that staff are aware of this and that the child does not have to explain this in front of their friends.
- Research school trips. Provide portable foods to supplement your child's diet if necessary. If you are lucky, you may be able to encourage the selection of restaurant choices that are able to provide a gluten-free menu selection (however, if they go for pizza, the options will be slim at best). Contact the restaurants yourself and supply the student with the gluten-free options in advance, if possible.
- Establish open lines of communication. Although your student may want their independence and feel that you no longer have a role, establish open lines of communication with the teachers and the administration. Gently remind them to avoid singling out your child so that the student will be less embarrassed. Work as a team and don't forget common courtesy when arrangements are made to accommodate your child's diet.
College and celiac disease
It is best not to address celiac disease issues until your child has been accepted to college. Your child's dietary needs shouldn't be the deciding factor in your child's school choice, (but there are some things to bear in mind when doing the college search.)
Things to consider when looking at schools:
- Access to a kitchen will be very helpful. Do the dormitories, especially freshman dorms, have suites with kitchenettes; or do the regular dormitories have kitchenettes on each floor perhaps at the end of the hall or near the lounge area?
- Are microwaves and refrigerators allowed in dorm rooms?
- Does the campus have little food markets and do they stock gluten free items?
- Do the cafeterias on campus offer a variety of food options?
- What is the quality of the salad bars? There will be times when your child can only find his/her meal at the salad bar.
- Can your child walk to a large grocery store or health food store safely from the campus?
Once your child has decided on his school it's time to call the school and ask to be connected to the head of the dining services department. Be prepared to explain the disease completely.
Topics to address with college dining services department:
- Is there a registered dietician affiliated with the dining services department or school that might help address your child's needs?
- Do they feed other students with celiac disease? If so, how many are there and how do they meet their needs?
- Do they provide education to their staff about celiac disease, including the servers, so they understand if the student asks for something such as a clean pan for a stir-fried option?
- Will they provide a vendor list of everything the dining service offers? For example, many cafeterias offer chicken coated with a modified food starch that isn't gluten-free, or Asian style foods mixed with a soy sauce that contains gluten.
- Will they provide each cafeteria's menus in advance to your child? Menus are always planned in advance and repeated in cycles, so this shouldn't be a problem.
- Will they provide freezer and refrigerator storage space for extra food in a cafeteria close to their dormitory room?
- Set up an appointment for you and your child with the head of food services for the day of arrival on campus. (Better yet, at a freshman orientation program.) This allows your child to meet the person with whom he/she will be in contact for their dietary needs over the next few years. Once they are on campus, they will have to be their own advocate and learn to work with the people involved.
Topics to address with residential services:
Find out the living options for freshmen at the school. Offer to provide a physician's letter describing celiac disease and the dietary limitations so that your child can be placed in a living situation that provides a kitchen/kitchenette near their dorm room. This will allow your child to have first preference when room assignments are made in the early summer. Inquire if hot plates, personal electric grills and appliances of that nature that can be used in dorm rooms. Most schools say no, but because of the medical condition your child may be eligible for an exception. Dorm room refrigerators and microwaves are very important for college students with celiac disease. Other things to keep in mind:
- Offices of Disability Services and schools have to meet 504 criteria. This can be good information to know if you run into roadblock while trying to provide a safe living situation for your child.
- Your child will need a place to store gluten free food in their rooms, and space is always tight. Also they will need paper and plastic cups, plates and utensils since they will probably eat in their room to supplement the dining hall food. (Disposable items helps keep dishwashing to a minimum, but make sure they are microwavable!) Also a pot, colander and some cooking utensils will be helpful.
- Alcohol exposure at college is common. People with celiac disease who choose to drink need to know which alcohols are gluten-free and which are not. You may want to address this at a time when you feel it's appropriate.
Chances are your child will get sick at school. They will have to educate the infirmary/health center staff about their celiac disease if they get sick enough to need care. Medical privacy regulations can make it hard for parents to talk to the infirmary staff, and if the child is over 18 years-old medical information can only be shared at the patient's request. Remind your child to contact the school's health center and inquire about the availability of gluten-free medications.
Non-discrimination in schools: 504 plan
Protecting children with disabilities
Section 504 is a law stating that public schools must provide a free appropriate public education and not discriminate against disabled students. It acknowledges that the disability may not require special education services but a plan is needed to ensure the student receives an appropriate education accommodating the disability within the classroom. This law must accommodate a special diet.
Requesting a 504 Plan
To request a 504 Plan, parents need to speak with the 504 Coordinator in their school and submit a note from their child's doctor. The note should clearly state the disease, symptoms and necessary precautions and accommodations. Without a doctor's note, the school can deny your request. A meeting will then be arranged for the plan to be developed.
Is the 504 Plan for my child?
The 504 plan is not designed specifically for celiac students and therefore isn't a perfect fit. Each family will need to evaluate the pros and cons for their situation to determine if they want to pursue a 504 plan.
Examples of what some celiac students have listed in their 504 Plan
- Faculty and staff training regarding the plan
- Presentation to class on hand washing procedures
- Health assessment should any sign or symptoms occur indicating possible accidental or known exposure to gluten.
- Insuring communication systems are in place for persons who need to know (i.e. substitute) teachers
- Parent and teacher will work together to monitor classroom events that may include the use of food.
- An alternative to using food treats for students birthdays will be selected.
- Class activities using envelopes will be minimized and child reminded not to lick any envelope/stickers.
- Custodian will complete daily cleaning of the classroom.
- Student should be allowed bathroom privileges when necessary
- Student can not use any of the following materials for classroom projects: play dough, paper mache, fruit loops and cheerios and other gluten containing food, pasta, flour, paste, envelope and stamp adhesives. Parents will provide a list of alternative materials if the class plans to use any of these materials.
- The teacher will communicate with parents about upcoming projects that may require alternative foods or materials.
- Food will not be distributed in the art classroom.
- Products commonly used in the art room will be reviewed to determine that they are gluten-free. Any changes in art products will be communicated prior to instituting the change. (e.g. paper mache and play dough)
- Student will be encouraged to keep her lunch in her lunch box while eating.
- Student will be encouraged to wipe the section of the table she is eating on prior to eating.
- Necessary cleaning procedures for the cafeteria tables and microwave will be followed.
- Parent and Food Services will work together to arrange procedures when student is ordering school lunch or brining food from home that will require heating in the cafeteria. (e.g. warming in the oven on a separate foil-lined cookie sheet).
- Tables and hands will be washed before and after eating.
- Teachers will communicate to parent if food will be provided as part of field trip. Parent will determine whether food is gluten-free and/or provide student with a safe alternative.