Valerie Kraft is a food safety activist studying Medicine, Health, and Society at Vanderbilt University in Nashville, Tennessee. Valerie has been a leader in allergy advocacy work for young adults since being diagnosed with celiac disease in 2015.
Where do you live?
Right now I live in Nashville, Tennessee. I’m a freshman at Vanderbilt University.
What’s your food identity?
I have celiac disease.
How do you maintain your food identity?
The ways I maintain my food identity at college are very different from when I lived at home. When I was in high school it was fairly easy to control what I ate. I brought my own lunch to school and ate most of my meals at home. Our house is 99% gluten-free (except for a small shelf with some of my dad’s snacks), and what I ate was pretty much made at home. On the rare occasion when I would go out to eat, I would do my background research a head of time and only stick to a handful of local restaurants.
College is obviously a lot different: you’re eating out or at dining halls, so you don’t have the same kind of control over food that you might at home. There’s a wonderful allergy program at Vanderbilt. People (like me) with very severe medical needs can register through Disability Services for access to a meal ordering system to have food prepared safely with no cross-contamination. Chefs cook my meals with proper procedures in a separate allergen-safe area in the kitchen. I’m able to email them to request when I want to eat and at which specific dining hall. There are also small convenience stores on campus called Munchie Marts—one offers many gluten-free options, packaged items like mac and cheese and frozen chicken nuggets—foods you don’t get often when you’re gluten-free!
When I eat out I use my Nima, which has been a really great tool. I used to be afraid to eat at unfamiliar restaurants because there’s only so much of a guarantee you can get from calling ahead or talking to the chef—you still never know if something’s gluten-free or gluten-contaminated until you eat it and you either have a reaction or you don’t. My Nima sensor has given me that extra protection. It’s helped me try restaurants that I wouldn’t necessarily have gone to if I didn’t have Nima.
What’s your most memorable Nima experience?
This was actually last week! I don’t go to a lot of restaurants here because it makes me anxious that I don’t know the chefs. There is a Mexican restaurant that I had always heard really good things about but before I had Nima, I was just not willing to try it. This semester I decided to go with one of my friends who also has severe food allergies. We ordered chips and guacamole and I pulled out my Nima sensor and thought “okay, here we go…” It was the first time I had used my Nima off campus (when I use my Nima on campus I do it for safety because I already know what I’m eating is going to be gluten-free). I was staring at the food in front of us and when the sensor came back gluten-free, it was an empowering moment. I never would have come to eat at this restaurant without Nima because I would have been too afraid with no guarantee that my food would be safe.
What are some of your hobbies or interests?
A lot of what I do is advocacy work. I recently accepted an internship with the Seacrest Studios at the Monroe Carell Jr. Children’s Hospital at Vanderbilt, where I’ll be engaging with patients and volunteering in the recording studio at the hospital. When I was in high school I served on two leadership boards at my local hospital.
I’ve also done a lot of advocacy work on my own. I ran a network called The Celiac Saga for teens with celiac disease for about two years and am currently working on developing a student allergy council at Vanderbilt that will enable direct communication between students in the allergy program and campus dining. I hope to raise awareness so that prospective students know there are allergy-safe school options out there.
Tell us more about why and how you started The Celiac Saga.
When I first was diagnosed with celiac disease in September 2015, I didn’t know anyone else with this. I had vaguely heard of celiac disease but I couldn’t tell you what gluten or cross-contamination was, and it was very overwhelming. Those first few weeks after diagnosis were incredibly stressful because gluten is in everything, even things you wouldn’t expect, like deli meats and pickles. I remember trying to find a support group for other gluten-free teenagers who could relate to my experience being in high school and there just wasn’t one. I decided to start my own. I created a blog and online forum and did public speaking at my high school. Some of the most rewarding experiences were when people would personally reach out to me because of the flyers or business cards that I had handed out. I’ve since shifted my focus to forging community and raising allergy awareness at the college level.
Can you speak to some of the challenges and opportunities you’ve encountered in creating the allergy council at Vanderbilt?
This is something I knew I wanted to do coming in to Vanderbilt. Because all the other students signed up for the meal ordering system are registered with Disability Services we’re not allowed to know who each other are—we have to seek people out ourselves. It makes for difficulties in the beginning of college when new students are navigating how to order meals at certain times and they don’t know anyone yet to sit with in the dining hall.
In mid-October I met with the school’s dietician and voiced to her that I really wanted to do something that would connect all of the allergy program kids, begin a dialogue with the dining hall chefs, and create a space where we could share our opinions. I’ve also met with the Director of Dining to discuss my visions for the council. It’s incredible to see how many people are so genuinely interested in wanting to help. Part of my worry when I started this council was whether people were agreeing to help begrudgingly because I was asking them. Honestly, though, they’re going out of their way to make this how I envision it and they’re taking a lot of what I say to heart. I’m very lucky that people have been so supportive understanding because there’s no way I could have done this on my own!
How did you ultimately decide Vanderbilt was a gluten-free safe school option for you?
I’m very lucky that Vanderbilt was my top choice school because I’m able to pursue the exact academic program I want without having to sacrifice my health and safety. A lot of other schools I visited were willing to accommodate my gluten-free needs, but not in realistic ways. Many schools couldn’t provide me specifically gluten-free meals but offered to revoke my meal plan and house me in a dorm with a kitchen so that I could cook my own food. While that’s great in theory, it doesn’t necessarily guarantee the sanitation level of the kitchen nor consider the need to have a car, a budget for groceries, time to cook healthy meals with a busy college lifestyle, etc. For me, what it came down to was which school I could realistically live at and be integrated into the school community.
If you could eat only one food for the rest of your life, what would it be?
My mom’s taquitos. When I was first diagnosed with celiac disease my mom made sure that my food quality wouldn’t be altered. That’s probably what I miss most coming to Vanderbilt—my mom’s food!
– – –
Thank you for sharing your story Valerie!