May is Celiac Disease Awareness Month. It’s a time not only to reflect upon the disease itself but also to consider some of the social aspects that are part of living with celiac disease.
What is celiac disease?
Celiac disease is an inherited autoimmune disorder due to immunological intolerance to gluten, and it affects more than 1% of Americans. “That may not seem like a lot,” says Stanford Children’s Health registered dietitian Venus Kalami, MNSP, RD, CSP, “but at that rate, it’s likely that you will eventually cross paths with someone who has celiac disease.”
Gluten is a type of protein found in many grains and grain products, such as wheat, barley, rye, and triticale, as well as in a multitude of other processed food products. Eating gluten can cause intestinal inflammation in people who have celiac disease. The only way to manage the condition is to fully eliminate gluten from the diet.
“Celiac disease does require a huge lifestyle shift,” says Kalami. “Though celiac disease is a part of your child’s life, it is not their whole life. We want to preserve the joy of eating in your child’s social life, no matter the circumstances.”
Though the diagnosis may initially be viewed as a burden, celiac disease can serve as a platform from which children can develop social skills such as self-awareness and self-confidence, which are beneficial in all aspects of life.
Keeping it social
“I reassure families and children that it’s normal to feel overwhelmed when learning of a diagnosis of celiac disease,” Kalami says. “But we want kids to live as full a life as possible, and we’re here to help them figure out a way to do that.”
Children and teenagers who have celiac disease may feel left out of social situations that include food, such as hanging out with friends, going to parties, or celebrating a big-game victory. Teens especially may feel embarrassed about having to ask questions about every food item they are considering eating.
“Why can’t I have the cupcakes everyone else in the class is eating?” a child may ask. “I can’t eat the pizza they’re ordering, so I won’t go to the party,” a teen may feel.
“Socializing is an important part of growing up and learning to get along with people,” says Stanford Children’s Health social worker Garret Forshee, LCSW. “And food is so often a centerpiece of friendships.”
But he notes that there’s no reason why celiac disease should limit one’s ability to participate in all social activities. With some planning, flexibility, and self-advocacy, gluten-free eating can become a habit, not a burden.
“We try to help kids recognize the very valid feeling of isolation or being left out,” says Kalami. “Once they can identify that feeling, we help them build self-advocacy skills so that next time they’re in a similar situation, they know how to handle it by speaking up for themselves.”
Take that pizza party, for example. Teens with celiac disease could suggest that the group order food from a restaurant with gluten-free options. Or they could call the pizza place themselves in advance to find out if they make gluten-free pizza and request it with the group order. If there aren’t any restaurant-based options, then that teen could have the pizza party come to them and host a gluten-free pizza event at home.
Speaking up for oneself, especially as an adolescent, can take a certain amount of courage and strength, but after the first few tries, it becomes a powerful component of building self-confidence, in all arenas of life. This self-advocacy can also build tighter bonds with friends who may want to understand how they can be helpful to their friend with celiac disease.
Parents and caregivers may need to advocate on a younger child’s behalf. Most teachers and school administrators are eager to help, but the parent or caregiver usually needs to take the first step to reach out to the teacher, school nurse, and principal to inform them about the child’s condition and offer suggestions for on-site management.
Many schools offer gluten-free choices in the cafeteria or work with 504 plans that make certain accommodations for children with celiac disease. A social worker can help families navigate this process and help families get set up with the documentation needed at schools.
Holidays and cultural events
“For many families, celebrating a holiday is a way of embracing a person’s identity, whether it’s cultural, religious, or otherwise,” says Kalami. “But for families with someone who has celiac disease, a holiday meal may present another challenge.”
Every culture and religion has its symbolic foods that honor or celebrate holidays or special events: Christmas cookies. Baklava. Matzo. Saffron buns. The list is lengthy but doesn’t have to be limiting for children and teens who have celiac disease.
Nowadays there are numerous gluten-free alternatives on supermarket shelves for tasty and nutritious foods. And there are dozens of cookbooks and blogs that help families adapt or create gluten-free recipes.
“There are resources out there now that have elevated gluten-free baking to a whole new level compared to 10 years ago,” says Kalami. “And baking or any kind of cooking offers a hands-on and engaging opportunity to learn such skills as label reading and measuring.”
When celebrating in someone else’s home, Kalami suggests bringing gluten-free foods. Or the child could invite a host family member over in advance to show them how to modify or create a gluten-free dish, together.
“People want to help, but they may need some educating about how to do so,” says Kalami. “Reach out and show them in the kitchen; this is a way to empower loved ones to show their care for a person with celiac disease—through food.”