Growing Up with Celiac Disease

Children who have been diagnosed with celiac disease quickly learn how to eliminate gluten from their diets to control their symptoms. With family support and guidance, they can adapt to their new normal and get on with their lives, but it takes diligence and careful planning.

But as children grow up, mature, and become adolescents, they seek independence and want to solve problems independently. For those with celiac disease, the teen years are a time to learn to “own” the disease and to make decisions about what to eat without the oversight of a family member.

Teens also develop new relationships with friends. They start dating. They go to parties, go off to college, or start to work outside the home. How do they take on this expanded world while keeping up with their gluten-free diet skills and lifestyle?

Support groups offer help

The Stanford Medicine Children’s Health Celiac Disease Center is planning to offer a new support group specifically for high schoolers who are established patients at the center. Starting in May 2021, it will be held virtually and will explore how celiac impacts different domains of their lives, from the point of view of the group members themselves. Questions will be discussed to enable teens to get hints and tips from each other, such as:

What was it like when you first found out you had celiac disease?

How did you deal with it, practically and emotionally speaking?

What do you eat when you’re at a party or out with friends?

How do you manage peer pressure when it comes to eating gluten-free?

How do you know what’s safe to eat at your school cafeteria?

This pilot program will offer four sessions. Interested high school students who have celiac disease should ask their health provider to send a referral to be in the group.

Also, in development is an online transition-to-college class, designed to help families get to know what to look for on a college campus for students with celiac disease. Students should always make college choices based on what attracts them and where they feel comfortable, regardless of their celiac disease. But it is helpful to know in advance how they’ll navigate the campus to continue their gluten-free lifestyle. Be on the lookout for this new class for interested current and future college students.

The Celiac Disease Center will also offer its weekly Celiac 101 Nutrition classes online beginning in June 2021. These sessions will connect patients and their families and help answer their questions about living gluten-free. They are open not only to any Stanford Medicine Children’s Health patient who is diagnosed with celiac disease, but also to patients’ close family and friends to help build the village of support that’s needed to thrive on the gluten-free diet and lifestyle.

How to navigate college with celiac disease

Selecting the right college is a challenge that many families face. But how do families decide on a college for their student who has celiac disease? Here are some tips from the Stanford Medicine Children’s Celiac Disease Center.

1. Cast a wide net. Some patients feel they must attend a college that overtly states that it can accommodate their condition, and then patients engineer their college search within that framework. But Stanford Medicine Children’s Health clinical pediatric dietitian Venus Kalami, MNSP, RD, advises students to “cast a wide net. Don’t let celiac disease limit your options. Choose your college based on where you want to be and what you want to study, and figure out the gluten-free component after.”

2. Take a tour. As families narrow their choices, Kalami recommends that they tour campuses if possible, to get a sense of what various schools offer to support students who have celiac disease. “Check out the cafeteria to see what kind of foods are available,” she says. “See if you can have access to a private kitchen—a reasonable accommodation for many of our patients with celiac—especially if the range of options in the cafeteria doesn’t suit your needs. Visit nearby grocery stores. Brainstorm about what your lifestyle at this school would be like, and how easy or difficult that would make being gluten-free.”

3. Speak to the experts on campus. Almost every college campus has a dedicated food services staff, including dietitians who know about food allergies and other dietary needs. It can be helpful to meet with someone from that department to get answers to detailed questions about celiac disease management, such as how they avoid cross contamination, how food is prepared in the kitchen, what training staff members have in celiac disease, and so on.

4. Speak with other students. The student is most likely not going to be the first one on campus to have had celiac disease, as celiac disease affects 1% to 2% of the population. Students can find out more about support groups on campus, in the local community, and even online so that they can get advice from peers who’ve been through this process already. The insider point of view is helpful and can also establish camaraderie with a group of students who have similar backgrounds.

Kalami emphasizes that while celiac disease is a big component of our patients’ lives, it should not dictate their life, goals, and dreams. That applies to choosing a college, too.