Celiac Support Association

Dear Parent,

To say the least, you have had to make some adjustments in your lifestyle since discovering that your child has celiac disease. You have learned diligence in finding all the places that wheat, barley, rye and common oats (WBRO) can hide in food, medications, personal-care products, art supplies, and sizing and materials in clothing. You have become your child's greatest health advocate and now it is time for you to help your child to be safe at school. The Celiac Support Association (CSA) has produced a set of materials designed to help the various school professionals that will work with your child. The following are a few suggestions on how to get the most out of these materials and encourage a positive learning experience for your child at school.

  1. First, it is helpful to realize that, just as you may have struggled to learn all the parameters of this new way of living, the school staff may struggle as well, and will occasionally miss the mark. Your patience and helpful attitude will go a long way toward making the transition a successful one for all involved. Open, honest, non-confrontational communication is the key to creating a positive environment for your child and the adults who will work with him or her.

  2. Review each piece of material before giving it to the respective school staff member. It may be helpful to highlight or note those things that are especially true for your child, as well as those things that do not pertain to your child. This will assist the learning process for each of them.

  3. Take time to sit down and visit with your child's teacher, principal, school nurse, counselor, and cafeteria workers. It might be advantageous to have the principal arrange this meeting so everyone can meet at the same time, forming a team that will work together to ensure your child's safety. Most people in education are there because of their love for children, so in general, this team will want to do what they can to provide a positive educational experience for your child. As you are aware, knowledge is power and you hold the keys to the knowledge needed in this situation - please share them with those who will be serving your child. When awkward situations arise, humor can often be used to ease the tension.

    During the team meeting you will want to discuss the following:

    Basics about celiac disease and/or dermatitis herpetiformis.
    Other health concerns your child may have.
    Your child's specific symptoms.
    Bathroom requirements.
    Snacks - provide a gluten free snack list.
    Classroom activities that might pose special problems.
    Any playground concerns.
    Cafeteria concerns.
    Contact information to include phone numbers for you, your pediatrician and your dietitian.
    Arrange to provide a "just in case" box with snacks for those times when treats are brought in that are not safe for your child.

    Be sure to point out that the school is responsible to:
    Review your child's health record.
    Include your child in school activities with appropriate modifications.
    Identify a core team to work with you and your child to establish a safety plan.
    Ensure that all staff who will interact with your child are aware of his or her special needs.
    Coordinate with the school nurse to ensure that he/she is prepared for any emergencies. (If Latex is a concern, make sure that the nurse is aware of this.)
    Prepare to handle a reaction. Share with the staff what past reactions have been like and how they were handled.
    Work with the district, if needed, to ensure that the cafeteria will be able to provide food options that are safe for your child.
    Prepare to handle challenges that could present themselves on class field trips.
    Follow all laws and regulations regarding the sharing of your child's medical information.
    Take seriously any harassment and/or threats that may occur against your child because of his/her condition.
    Inform them that your child knows that he or she is responsible to: Not trade food with others.
    Not eat anything with unknown ingredients or which contain WBRO.
    Notify an adult immediately if he or she eats or touches something that may contain WBRO.
    Be proactive in the care and management of symptoms based on his or her developmental ability.

  4. Remember, your approach to this disease and to the meeting will set the tone for the school year. Be positive and upbeat and you'll find that the school will follow suit. Your child will take cues from you as to how to interact with others regarding this disease. Your example of positive, cooperative communication will help him or her become a strong advocate for self while being polite, courteous and understanding with others.

  5. Additional information and support is available through the Celiac Support Association. As the largest non-profit organization dedicated to helping people with celiac disease and dermatitis herpetiformis, CSA offers individualized support and a variety of educational materials.

Your attitude of understanding and care will go a long way toward helping those who deal with your child at school learn how best to meet his or her needs. Remember, this is new for them, as well. Be patient and soon the necessary changes will become a normal part of the school routine.

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