Regardless of your child's age and level of school, it is 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 celiac child. This list is not all inclusive. Every school and celiac 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 the specifics needed in school to maintain your child's well being. (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 who you need to talk to at the school one year before your child will enter. If there are community events at the school, attend them with your child so that you can both become familiar with the school. Start your gluten-free food planning meetings the spring before or at least the summer before your child will begin attending the school. Some schools are closed in the summer, so make sure they are open if you are going to wait until then.

• Always make appointments with school personnel (e.g., school nurse, principal, food service director, teachers, specials -- art, speech, etc.). Be prepared. Bring a photo of your child if they've never met her or him. Show gratitude, show 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 that is specific and detailed. (See section in the folder for a description and examples of a 504 plan.)

• Review the plan as needed, but at least twice a year for adjustments.

• 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. Remember it is your child's health that you are protecting.

• 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(s) comfortable with your childs medical condition and with making the changes necessary for your child to be safe, welcomed and included?
• Is there a full-time nurse?
• Are there other children with food issues in the class?

• Are snacks served and 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 are they 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?

• How and when are tables and chairs cleaned after food is served?
• Where is lunch served?
• If your childs lunch needs to be heated, what adult will safely do so?
• Are there any gluten-free foods offered (see middle and high school student cafeteria section)?

• How are birthdays traditionally handled?
• Can a frozen cupcake be kept in the teachers freezer?
• Can a bag of candy or special snack be kept in the teachers desk?
• Can parents be encouraged to send in non-food items (e.g. stickers or pencils) to celebrate birthdays?

• 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., m & ms, cereal)?
• Is food used in science projects?
• Are there non-food substitutions that can be made?
• Review all curriculum plans in detail for any areas where changes need to be made.

• Are there food materials used in art?
• Is food used in 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 (give them the recipe).
• 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, ethnic celebration foods, and traditional holiday foods.
• Prepare to volunteer for gluten-free food needs that the teacher or school may have.
• Consider giving the teachers a list of gluten-free snacks which 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 should not name children specifically, rather state that there are children with food issues, so as not to single out your child and draw attention that may make your child feel uncomfortable now or when they older.

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 simply bear with it and eat nothing.

Some things a parent can do at this stage:

• Contact the cafeteria - Contact 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 - School trips are often a part of the middle/high school curriculum. Start early to research the places the school may take the students to eat on these events. Provide portable foods to supplement the celiac students 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.

Parents should keep an eye out for certain things when looking at potential schools on those campus tours. Notes on each school will be helpful when your child prepares their short list after determining all their other criteria. Keep in mind the larger the student body, the more dining service options, the greater the chances for variety in dormitory living, health services, etc.

The following are a few things to consider when looking at schools.

• Access to a kitchen will be very helpful. Do the dormitories, especially freshman dormitory options, 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? This is essential!

• 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?

• Is apartment living plentiful for upper classmen? Is it a popular option? Is it on or off campus? Is it safe if you have an off campus apartment?

The following are some areas to address when talking to the dining services.

• Is there a registered dietician affiliated with the dining services department or school that might help address your child's needs?

• Do they service (feed) other celiac students? 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? The summer will provide time to research which items are safe. It also allows time to educate the school and show how the current practices limit options for your child.

  For example, it is difficult if all of the chicken offered is coated with a modified food starch that isnt gluten free or if all the Asian foods are mixed with a soy sauce that contains gluten. It is amazing the changes that can result when you show them how little is offered that is gluten free from dining services.

  When one school in the Midwest discovered that what they provided was so limited, they offered to purchase Amy's frozen dinners, gluten free snacks, cereals and other gluten free items weekly and deduct it from the child's meal plan. They also delivered it to the child.

• Will they provide each cafeteria's menus in advance to your child? This enables your child to know where to go on campus for food. 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 system and the system with them.

Research the school's meal plans. A declining balance option plan (a fixed amount put aside for the meal plan, much like a debit card) is usually the best plan due to the limited gluten free food options provided in the dining services. You can add money to these plans as necessary. Other options usually are 'use it or lose it'!

Remember all schools have Offices of Disability Services and schools have to meet 504 criteria since this is a medical condition so make this call early, especially if the previous calls have hit roadblocks.

Remember, when shopping for the dorm room, that your child will need a place to store gluten free food in their rooms, and space is always tight in dorm rooms!! Bed risers, or concrete blocks that lift the bed to provide extra storage underneath, will help. 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 dish washing 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 generally expected, and most children turn 21 in college. They will need to know which alcohols are gluten free and which are not at a time when you feel it is appropriate to discuss this issue.

In closing, your child will need to advocate their needs to dietary services. Making sure meals are gluten free is their job now. It makes the college adjustment a little more difficult. They will have to plan more than their roommate about their meals. Care packages from home and from gluten free vendors are a must! But remember, youve taught them well. They will manage. You will probably get a few frustrated telephone calls, but it gets easier and college will be the experience you and your child wanted with a lot of fun thrown in!!!!!

Congratulate yourself on taking great care of your very special celiac young adult.