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Watch: Raising a child with celiac disease

Boston Children's Hospital will teach you and your family about a healthful celiac lifestyle. Education is key in making parents feel more at ease and allow children with celiac disease to live happy and productive lives.

Each of our video segments provides practical information about celiac disease from real-life families, as well as health professionals.

 

Experiencing celiac disease

Education is key in making parents, guardians, family members, and peers feel more at ease and allow children with celiac disease to live happy and productive lives. Each of our celiac disease video segments provides practical information about the disease and provides tips on how to live a healthy active lifestyle. These videos were produced with Boston Children’s Hospital health professionals and with families and children living with celiac disease.

 

We hope you take some time to view all of the videos to find useful information for your lifestyle. Please call us with any questions you may have or to make an appointment with our celiac disease experts at 617-355-6058. Thank you.

What is celiac disease?

Learn about what causes celiac disease and its diagnosis and treatment from Alan M. Leichtner, MD, director of the Celiac Disease Program.

 

Diet information

Learn more about safe or unsafe foods and ingredients for people with celiac disease.

Watch: Part I

 

Watch: Part II

 

A gluten-free home

Tips making your home a gluten-free environment:

Watch: Part I

 

Watch: Part II

 

Shopping

Information about shopping for gluten-free groceries:

 

Cooking for celiacs

Discover new ways to cook great foods that are gluten-free:

Watch: Part I

 

Watch: Part II

 

School

How to prepare your child with celiac disease for school and ensure that it's a safe environment for him or her.

 

Dining out

How to eat out safely at restaurants and other places away from home:

 

Away from home

How to plan and prepare your child with celiac disease to be at camp or live away from home:

 
Summary points
  • If your child will be going to camp, meet with camp director and chef to review your child's dietary needs. Remember that an individual camp director may or may not decide to contribute to the purchase of gluten-free food for your child. As a parent, you should be prepared to supply most of the food for your camper.
  • Work with chef to determine which items on the menu will be safe and which will need a gluten-free substitute. Not all chefs will prepare special gluten-free food. Use the menu as a reference and be willing to provide the chef with gluten-free versions of unsafe foods.
  • Consider preparing and freezing portions of meals so that the kitchen staff will only need to remove them from the freezer and bake or thaw them.
  • Investigate potential cross-contamination in the kitchen, either with shared preparation areas and utensils, or with ingredients.
  • Beware that food service versions of food products may not have the same ingredients as versions sold in stores. Have the UPC code available for calls to manufacturers.
  • Advise the head counselor about your child's special dietary needs and consider providing a box of gluten-free treats for your camper. Send your child to camp with a snack bag of items that won't spoil, such as gluten-free power bars and gluten-free pretzels or crackers.
  • Determine what sources of food will be available to campers outside of the cafeteria. Examples are cooking s'mores over the fire, eating a bag lunch on a field trip, and visiting an ice cream stand for a special treat. Plan how to provide gluten-free versions for your child.

Emotional adjustments

All family members may struggle in adjusting emotionally to the diagnosis of celiac disease. Hear information from a licensed social worker on how to cope:

 
Summary points
  • It's okay to feel overwhelmed or resentful about your child's diagnosis. Many parents grieve over the loss of their child's normal lifestyle. Setting short-term goals is a helpful step in adjustment.
  • Give your child permission to express his/her own feelings of anger or frustration when they learn about the disease.
  • Avoid a potential crisis by anticipating the need for emotional support and seeking help from a mental health professional.
  • Remember that a childhood medical condition is a family medical condition. Involve the entire family in household discussions and major decisions regarding diet management and lifestyle changes. Set limits regarding what aspects are negotiable and what aspects are necessary to insure your child's health.
  • Understand that parents may have different coping styles. Good communication is the key to working as a family.
  • Children may cope and adjust to the demands of the celiac diet and lifestyle differently at different developmental stages, regardless of how long they have had the illness. Younger children find that re-establishing routines is comforting. Create a gluten-free version of your child's routine.
  • Siblings may be confused or be jealous of the attention the newly diagnosed celiac is receiving. Educate siblings about celiac disease, give them an opportunity to discuss their own concerns. Provide siblings with some special time with parents.
  • Understand that for teenagers, other people's opinions are of paramount importance. Therefore, fitting in with peers may seem more important to a teen than dietary compliance. Also, teens may have difficulty understanding the long-term consequences of not following the gluten-free diet.
  • Let children make choices where they exist. Teens will want to decide whom they tell about their celiac disease.
  • Always answer all of your child's questions honestly, and provide age-appropriate responses.
  • Children with Down syndrome who have celiac disease often have difficulty understanding and adjusting to a gluten-free diet. Many already have behavioral issues related to eating. Consultation with an expert on child development may be helpful.

Kids speak

Personal experiences and advice from kids diagnosed with celiac disease: