Psychosocial Support for Children With Celiac Disease

May is Celiac Disease Awareness Month. This is a time to honor friends and family members who are living their lives while following a gluten-free diet and lifestyle.

A diagnosis of celiac disease can be life-changing, but it can also result in a new way of looking at food that brings family members and friends closer together as they support the psychosocial development of someone diagnosed with celiac disease.

What is celiac disease?

Celiac disease is an autoimmune disorder that affects more than 1% of Americans. The culprit in celiac disease is gluten, a type of protein found in many grains and grain products. Eating gluten can cause severe intestinal inflammation in people who have the disease.

“Celiac disease needs aggressive management to eliminate gluten from the diet,” says Garret Forshee, LCSW, a social worker with Stanford Medicine Children’s Health. “I try to get kids to think about their diet as a treasure hunt. Whenever they find something new that’s safe to eat, we treat it as having unearthed a little gem.”

Psychosocial support helps child adapt to celiac disease

Forshee notes that “food plays an important role in socializing and in developing friendships, so it’s important that children learn how to pursue those activities while maintaining a safe and healthy lifestyle.”

As children learn how to modify their diets to adapt to the disease, they may begin to feel different from everyone else, which can result in a sense of isolation or loneliness. “A child’s mental health may falter for a while, especially when they are newly diagnosed,” says Forshee.

Stanford Medicine Children’s Health’s Center for Pediatric Inflammatory Bowel Disease (IBD) and Celiac Disease addresses the complexities of celiac disease by offering an in-depth interdisciplinary clinic, where patients meet individually with a medical provider, a psychologist, a social worker, a dietitian, and a nurse.

Working together, this team assesses the child’s needs, including supportive counseling. If psychotherapy seems appropriate, the team can connect families with their celiac psychologist, who has experience managing a chronic condition such as celiac disease.

Additionally, to address the psychosocial side of celiac disease, families are encouraged to connect with local community members and groups who may provide support for a child or teenager who has celiac disease. Sharing experiences can be a source of strength for families and kids.

“We try to foster those connections by offering outreach activities and programs that enable patients, teachers, parents, and friends to create a network of support and empathy for the child with this chronic condition,” says Forshee.

The following are some of the community programs that families can access at Stanford Medicine Children’s Health:

Celiac Clinic Parent Community.

The support of others outside of the family who live with celiac disease has been found to be beneficial. “A group of passionate parents have banded together to connect the celiac disease community and provide support for each other,” says Forshee.

The group partners with the Stanford Medicine Children’s Health clinical staff and offers regular virtual meetings on relevant topics to help meet the challenges of living gluten free, and to provide new perspectives. Planned events may include cooking demonstrations, hikes, and cookouts.

Peer-to-Peer Program.

Stanford Medicine Children’s Health offers a celiac disease peer-to-peer program in which newly diagnosed patients and families can meet those who’ve been living gluten free for a while. Clinic staff will help facilitate connections between parents, patients, or the whole family!

“Participants find this program helpful for added perspective, emotional support, and friendship,” Forshee says.

Celiac disease support groups.

Additional support can be found in many local communities with online and in-person support groups and resources for families learning to live with celiac disease.

Stanford Medicine Children’s Health can help patients seek out and connect with support groups, such as Bay Area ROCK (Raising Our Celiac Kids), Central Coast Celiacs, Gluten-Free Group at the Davis Food Co-op, and learn more about other support in the area.

Managing the cost of living gluten free

Many gluten-free foods cost more than their gluten-containing counterparts. One study showed that eating gluten free can cost twice as much as a gluten-containing diet, according to Forshee.

Families may want to tap into community-based organizations that can help them cope with costs. Stanford Medicine Children’s Health has created two handouts that may help:

Gluten-Free on a Dime provides hints and tips for managing the cost of a gluten-free diet.

Diet and Taxes explains how to keep track of expenses and how to file a claim on your year-end tax return.

Additionally, Stanford Medicine Children’s Health has created a resource guide for a gluten-free diet.