Breaking Bread: Celiac Awareness Hike

For this week’s Breaking Bread, we spoke with Vicki Nelson, a K-5 school counselor, and her 8-year-old daughter, Josie, of Charlotte, Vermont. This summer, Josie did a fundraising hike to raise awareness for celiac and for funds to buy her very own Nima.

Hi Vicki and Josie! We’re excited to talk to you about your hike for celiac. First, can you tell us about your food identity?

Vicki: At age two and a half, Josie was diagnosed with celiac. She was sick as soon as she went on solids. She developed the eating disorder pica and was malnourished. It took for her to get really sick to figure out what was going on. She had such significant numbers that she didn’t need an endoscopy.  

How did you first hear about Nima?

Vicki: I did research about Nima after seeing it in a gluten-free forum.

Had you done any fundraisers before?

Josie: One time my friend and me, we did a lemonade stand. We both have celiac and we raised $118. We donated it to some hospitals.

Vicki: Yes, she felt really proud. They set up the stand on the corner near the ferry to New York, and we gave the money to celiac research.

How did you come up with the idea for a fundraising hike?

Vicki: We wanted to make it an event and empowering. Having celiac means that Josie doesn’t always feel empowered and it can feel lonely.

We wanted her to feel supported with allies, which is what we call her supporters and family. It was about getting the Nima so it could help her when we travel because she’d often get sick. But it was also about her seeing that she has a village behind her.

Where was the hike?

Vicki: Mount Philo, which is the oldest state park in Vermont.  It was something that we can hike. It took maybe 45 minutes. It’s very doable and the views are beautiful and it’s right in our town.

Who joined Josie on the hike?

Vicki: Her closest friends and allies who know she has celiac. All three of her living grandparents came. People came into town that she doesn’t see very often. In total, it was about 20 people and eight of them were kids.

What was the most fun part of the hike?

Vicki: It’s cool when kids see their allies come together. She had a good time with her friends. She felt special and important and proud. Celiac doesn’t always make you feel proud. She has moments when it can be tough.

Josie: I liked seeing the view at the top of the mountain. It was exciting to do the hike. Hiking isn’t so easy. I liked the t-shirts. I got to pick out the color [green.]

How did you raise money? Who did you share the idea with?

Vicki: Just amongst our family and friends. All the proceeds went to the Nima, and we shared the news with everyone when it arrived. It was a whole event, like an unveiling of the Nima and the capsules. She couldn’t wait to try it.

What did you test first with your Nima?

Josie: Steak and then ice cream.

Vicki: The steak was marinated. Both came out with a smiley face! French fries are big for her. She’s so happy we can test French fries!

How are you using your Nima?

Vicki: We’re mostly using the Nima for travel as a family. The only times she’s gotten glutened is when we’re not at home and then we can’t figure out what it was. This summer, we drove from Colorado to California with stops in Denver, Aspen, Vegas and Zion. We also did a road trip from Vermont to Ohio. We knew she had to get Nima, and we wanted it to be something meaningful for her because it’s important for her life.

How did you feel traveling now that you have Nima?

Vicki: Before Nima, some places are so sketchy and you can tell it won’t work [food won’t be gluten-free]. Now we can test it. We can really make sure.  She’s had episodes of exposure. It’s exhausting for her.

Josie: It’s cool. I like having it. I can eat other foods. I really like French fries at restaurants. Sometimes I can’t eat them and sometimes I can eat them. I know how to use [Nima].

Vicki: Yes, I keep it in my purse and Josie knows how to use the capsules. She’s proud of it and doesn’t hide it. She’ll be ready to take it over.

Have you been surprised by any results?

Vicki: No negative results yet, but we haven’t tested sauces or obscure things. We’ve tested ice cream, French fries and bread and all were gluten-free. Nothing has coming up with gluten found yet. When that happens, we’ll need to talk about her making a different choice food wise. So far, it’s all been smiley faces.

Do you have a favorite Nima story?

Vicki: Wendy’s French fries. I never would’ve let Josie get them before, but we tested them and now she can have them.

Do you think you’ll do more fundraisers and awareness events in the future?

Vicki: I’m participating in a spin for Celiac on September 17. A child is doing a spin class to raise money for celiac research on CrowdRise. We’re Team Jojo. Josie said she won’t be spinning.

Do you have tips for parents on how to work with their schools regarding food intolerances?

Vicki: Yes, as a school counselor, I believe it’s important to build partnerships with schools and having them be your ally to help your child feel safe and less different than they may already feel.

I know that some moms pack a separate snack for their kids for celebrations. I don’t want kids to have to do that. Being prepared is good but not if it means some kids feel different. Thinking about celebrations is just harder than everything else they have to do. If we can make it equitable for all kids, then no one needs to feel different. Not every family can handle the extra burden. Restaurants are hard. We don’t want the classroom to feel that way as well.

There are other ways to celebrate other than food like reading special books or dancing. It doesn’t always have to be cupcakes because chances are not all 30 kids are able to eat them.

My role as a school counselor plays into my wanting to empower kids with exceptionalities and as a mom to support Josie, too. Kids with celiac matter, too.

If you could only eat one food for the rest of your life, what would it be?

Josie: French fries.

Thank you both for sharing your inspiring and empowering story!