How to Help Kids and Teens Recently Diagnosed With Celiac Disease

Sign up to be a celiac mentor.

When I was first diagnosed with celiac disease in 2020, I was overwhelmed by all the changes I’d have to make in my life. I had vaguely heard of celiac disease and knew a couple of acquaintances living with the condition, but they weren’t people I felt comfortable reaching out to for advice since we weren’t that close.

I joined a bunch of celiac support groups on Facebook early on in my diagnosis, but I didn’t like the vibes. People could be very mean and judgemental in those groups—and they often posted about how horrible living with celiac disease was, which wasn’t exactly the message I wanted to hear (and is definitely not true!).

In 2021, I saw that Beyond Celiac was looking for ambassadors to volunteer with the organization and work on special projects to raise awareness, so I applied and was accepted to the program.

I was paired up with a mentor in my area who was already part of the program, and it was a great experience. I finally had someone I could comfortably ask questions about celiac disease—and I made a bunch of other celiac friends through this program.

I can only imagine how much more challenging it would’ve been to be diagnosed as a child or a teen—and how helpful it would’ve been to have a mentor living with the same condition that I could’ve reached out to for advice.

Enter Celiac Chat, a cost-free mentorship program for kids and teens newly diagnosed with celiac disease. Celiac Chat was founded by Avery Leppo, a New York City-based high school senior living with celiac disease.

Avery Leppo is the founder of Celiac Chat, a mentorship program for kids and teens recently diagnosed with celiac disease.

Avery’s path to celiac diagnosis

In second grade, Avery started experiencing terrible stomach aches, headaches, and forceful vomiting. She kept getting sick and nobody knew why. She went to see a ton of doctors and was told she had anxiety.

Her parents knew something else was going on—and after about six months, they found a doctor who did a lot of bloodwork, including for celiac disease. The bloodwork came back positive for celiac, and then she had an endoscopy, which also came back positive.

“After that, I physically had a really seamless transition to eating gluten-free,” says Avery. “I know that many people take a little while for their bodies to heal, but I felt really good really fast. For me, the social and mental transition was terrible.”

Avery says she didn’t want to leave the house—she was stuck to her parents’ side. School and sleepovers were scary to her, so she stayed home. “I saw a psychologist, which was helpful in the end,” she says. “Over time, I think just with maturity, I did grow out of that isolation period—but middle school was definitely really hard.”

Avery shares that she went gluten-free officially in third grade—but middle school was challenging because that’s the time when kids often start socializing (a lot) on their own. “The social aspect of it just grew exponentially around that time,” she says.

Launching Celiac Chat

Since the beginning, Avery felt that the social aspect of celiac was not touched upon. “It wasn’t really spoken about a lot in my family or at school,” she says. So, during her freshman year of high school in 2020, she had the idea to create a program to help young people in the celiac community.

She officially launched Celiac Chat this past August. “It’s a mentorship program for kids and teens newly diagnosed with celiac, and it’s completely virtual,” explains Avery. “We serve mentees nationwide, which is incredible.”

Under the guidance of the celiac disease pediatric gastroenterologists at Columbia University, Celiac Chat offers a virtual safe space for young people with celiac disease as they navigate everyday life.

The goal of Celiac Chat is to help mentees with any aspect of living with celiac disease that they’d like. “It could be anything from help reading an ingredient label to help ordering at a restaurant to how to handle going to a friend’s birthday party and not feel awkward carrying a cupcake in my bag,” says Avery.

For the mentees who are older, mentors might even be able to help them navigate the college search process. “That’s something I’m dealing with right now,” says Avery.

Apply to be a mentee or mentor

Interested in getting involved? If you’re a parent, you can apply for your child to be a mentee. Avery says mentees range from around 4 years old to 15 years old.

You can also apply to be a mentor if you’re a teen or adult who’s been living with celiac disease for a while. There’s no age restriction on mentors—currently, mentors range in age from around 16 to 50. Once you apply, there will be a short interview and Avery will share some guidelines to make sure everyone’s on the same page.

Oftentimes, high school mentees like to be paired with someone else in high school, while younger kids sometimes like to see someone older who’s thriving with celiac disease, says Avery. She’ll also match up parents of celiac kids with other parents because they’re able to relate to each other.

The bottom line: “It’s meant to be a program to help kids and teens not feel isolated—because when I was younger, I didn’t know anyone who had celiac,” says Avery. “Now, you’re meeting people with celiac, you’re talking, you’re seeing someone older than you who is living life and managing school and hanging out with friends. It’s beneficial to be able to witness that firsthand.”