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There are many ways you can help children and their families get the care they need.
It's not that easy at first to change your diet—let alone that of another person—but the good news is that for the vast majority of children with celiac disease, this is all the treatment they will need.
The only treatment for celiac disease is strict adherence to a gluten-free diet for life. This will allow your child's intestines to heal, and, in almost all cases, eliminate the symptoms she was experiencing related to celiac disease.
At Boston Children's Hospital, we're committed to helping you and your family through this time of transition. Our registered dietician will meet with you and your family, and discuss with you everything you need to know about a gluten-free diet, including:
Remember that it's important that your child be seen by a registered dietician with expertise in caring for children with celiac disease.
A tiny minority of children with CD don't see improvement on a gluten-free diet. This could be
In these cases, medications such as steroids or immunosuppressants can help.
Your child's doctor will probably want to see your child after three months, after six months, and after a year.
There’s no denying that food plays a large role in culture. For a family affected by celiac disease, it may seem like gluten is everywhere you look, including celebrations, dates, casual gatherings and even ballgames. It can be easy to feel frustrated and left out, especially for a child.
The good news is that food doesn’t have to be a prominent part of our lives. Deciding how to retool family traditions to make them less food-centric can be a creative and fun activity that your family can do together.
After all, inventing your own custom-made traditions is something many families never think to do. Remember that even though your child may be limited in what she can eat, you can still save some ‘safe’ foods for celebrations and special occasions.
Here are some other tips to keep in mind as you begin to chart your child’s new nutritional path:
Ask your child’s teachers to let you know about upcoming birthday celebrations. Then, together with your child, decide in advance how to help her feel a part of it.
Keep gluten-free treats for surprise snacks.
Send a letter home with parents asking if they’ll let you know if they will be sending food in with their kid. Most schools are very used to getting requests like this.
Make sure your child has a stash of gluten-free treats in the classroom to ‘match’ the food served at birthday parties and snack times.
Together with your child, come up with a plan for what she can say to other kids if they ask about her special foods.
Make sure your child is prepared with food on field trips and other school events.
Know what ingredients are in the foods at the restaurant where you plan to eat. When possible, look over the menu in advance (many restaurants now post their menus online).
Let your server know from the beginning about your child's celiac disease. Ask about preparation and ingredients before you order. If your server doesn’t know or seems unsure, ask to speak to the manager or chef.
Avoid buffet-style or family-style service, as there may be cross-contamination of foods from using the same utensils for different dishes.
Avoid fried foods, since the same oil may be used to fry several different foods.
Schedule parties and get-togethers with friends for times other than traditional mealtimes, such as mid-afternoon or after dinner.
Encourage your child to pursue non-food related interests and hobbies.
Plan fun, creative birthday parties.
It's important to remember that while having a child with celiac disease can feel isolating, many children and their families have been down this path before. We've helped them, and we can help you, too. There's lots of support available for your family– here at Children's, in the outside community and online. These include:
The Celiac Support Group at Boston Children's Hospital: We offer newly diagnosed families a wealth of knowledge and guidelines for raising children with celiac disease. As a new member, our outreach committee will contact you and give your family support in the form of diet education and a welcome basket filled with gluten-free foods. The Celiac Support Group also offers:
Our social workers have helped many other families in your situation. Your social worker can offer counseling and assistance with issues such as coping with your child's diagnosis, stresses relating to coping, and dealing with financial difficulties.
If you are in need of spiritual support, we'll help connect you with the Children's chaplaincy. Our program includes nearly a dozen clergy representing Episcopal, Jewish, Lutheran, Muslim, Roman Catholic, Unitarian and United Church of Christ traditions who will listen to you and pray with you.
On our For Patients and Families site, you can read all you need to know about:
Access lots of additional information through the Celiac Program and Support Group's Family Health Education.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”