Faced with the social challenges of celiac disease


May is Celiac Awareness Month. It’s time to think not only about the disease itself, but also consider some of the social aspects that are part of living with celiac disease.

What is celiac disease?

Celiac disease is an inherited autoimmune disease caused by an immunological intolerance to gluten and affects more than 1% of Americans. “That doesn’t seem like much,” says Venus Kalami, MNSP, RD, CSP, a registered dietitian with Stanford Children’s Health, “but at this rate, there’s a good chance you’re crossing paths with someone with celiac disease at some point.”

Gluten is a type of protein found in many grains and grain products, such as wheat, barley, rye, and triticale, as well as a variety of other processed food products. Eating gluten can lead to intestinal inflammation in people with celiac disease. The only way to manage the condition is to eliminate gluten from the diet entirely.

“Celiac disease requires a huge lifestyle change,” says Kalami. “Although celiac disease is part of your child’s life, it is not their whole life. We want to keep the joy of eating in your child’s social life, no matter what the circumstances.”

Although the diagnosis is initially felt to be a burden, celiac disease can serve as a platform for children to develop social skills such as self-esteem and self-confidence that are beneficial in all walks of life.

That’s how it stays social

“I assure families and children that it’s normal to feel overwhelmed when you hear about a diagnosis of celiac disease,” says Kalami. “But we want children to live as full lives as possible, and we’re here to help them find a way to do that.”

Children and teens with celiac disease may feel excluded from social situations that involve eating, such as B. hanging out with friends, going to parties or celebrating a win at a big game. Teenagers in particular can feel embarrassed having to ask questions about every food they want to eat.

“Why can’t I have the cupcakes that everyone else in class is eating?” a child may ask. “I can’t eat the pizza they order, so I’m not going to the party,” a teenager may think.

“Socializing is an important part of growing up and learning to get along with people,” says Garret Forshee, social worker at Stanford Children’s Health, LCSW. “And food is so often at the heart of friendships.”

However, he notes that there is no reason why celiac disease should limit one’s ability to participate in all social activities. With a little planning, flexibility, and personal responsibility, eating gluten-free can become a habit, not a burden.

“We’re trying to help kids identify very valid feelings of isolation or exclusion,” says Kalami. “Once they can recognize that feeling, we help them build self-defense skills so the next time they’re in a similar situation, they know how to deal with it by speaking up for themselves.”

Take this pizza party for example. Teens with celiac disease might suggest that the group order food from a restaurant that has gluten-free options. Or they could call the pizzeria themselves in advance to find out if they do gluten-free pizza and request it when the group order. When restaurant-based options aren’t available, this teen could let the pizza party come to her and host a gluten-free pizza event at home.

Standing up for yourself can take a lot of courage and strength, especially as a young person, but after the first attempts it becomes a strong building block for building self-confidence in all situations. This self-advocacy can also create closer bonds with friends who may want to understand how to help their friend with celiac disease.

Parents and caregivers may need to advocate for a younger child. Most teachers and school administrators are happy to help, but the parent or carer usually has to take the first step by reaching out to the teacher, school nurse and principal to update them on the child’s condition and make suggestions for on-site management .

Many schools offer gluten-free options in the cafeteria or work with 504 plans that make specific provisions for children with celiac disease. A social worker can help families navigate this process and help families get set up with the paperwork needed in schools.

Holidays and cultural events

“For many families, celebrating a holiday is a way of embracing a person’s identity, be it cultural, religious or otherwise,” says Kalami. “But for families with someone who has celiac disease, a holiday meal can present another challenge.”

Every culture and religion has its symbolic foods that honor or celebrate holidays or special events: Christmas cookies. Baklava. matzah saffron bun. The list is long, but it doesn’t have to be limiting for children and young people with celiac disease.

There are numerous gluten-free alternatives for tasty and nutritious foods on supermarket shelves today. And there are dozens of cookbooks and blogs out there that help families adapt or create gluten-free recipes.

“There are resources now that have taken gluten-free baking to a whole new level compared to 10 years ago,” says Kalami. “And baking, or any type of cooking, provides a practical and engaging opportunity to learn skills like label reading and measuring.”

If you’re partying at someone else’s house, Kalami suggests bringing gluten-free foods with you. Or the child could invite a member of the host family in advance to show them how to modify or create a gluten-free dish together.

“People want to help, but they might need some education on how to do that,” says Kalami. “Hand you out and show them in the kitchen; This is a way to empower loved ones to show their care for someone with celiac disease — through food.”

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