Celiac disease

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 Children’s Hospital Boston, 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:

• which foods are safe
• which foods should be avoided
• how to read a food label
• the “real meaning” behind some ingredients
• what to do when you’re unsure whether a food is safe
• how to make sure your child’s gluten-free diet is nutritionally balanced

Remember that it’s important that your child be seen by a registered dietician with expertise in caring for children with celiac disease.

What if the gluten-free diet doesn’t work for my child?

A tiny minority of children with CD don’t see improvement on a gluten-free diet. This could be

• because she hasn’t been adhering to the gluten-free diet
• because there is another condition that is affecting her intestine  
• because she has been inadvertently consuming gluten in some form
• because (in extremely rare cases)  the disease doesn’t respond to diet alone

In these cases, medications such as steroids or immunosuppressants can help.

How often will my child be seen after diagnosis?

Your child’s doctor will probably want to see your child after three months, after six months, and after a year.

Coping and support

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 Children’s Hospital Boston: 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:

• networking with other parents
• a quarterly newsletter covering medical updates, news of the celiac community, gluten-free recipes, educational articles and gluten-free commercial product lists
• membership meetings offering disease education, lifestyle management techniques, gluten-free foods and vendors
• parties and other social events where children and their families can socialize in a safe, gluten-free environment

Social work: 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.

Faith-based support: 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:

• getting to Children’s
• accommodations
• navigating the hospital experience
• resources that are available for your family

Helpful links

• Celiac Disease Foundation
• National Foundation for Celiac Awareness
• American Celiac Disease Alliance
• Celiac Disease and Gluten-Free Diet Information at www.celiac.com

Access lots of additional information through the Celiac Program and Support Group’s Family Health Education.