By Alicia Carango, Beyond Celiac Web and Social Media Manager

Note: I wrote this blog post the day after our restaurant experiences. While we carefully read the quick start guide that comes with the Nima, we fully reviewed the Nima online supplemental materials a few days later. From that deep dive, we learned that the Nima is sometimes detecting “gluten found” in samples with trace amounts of gluten under 20 parts per million (ppm), the legal threshold for the amount of gluten that can be found in a food labeled gluten-free. This can complicate things; it’s possible that the samples we took were over 20 ppm, or they could have been under 20 ppm. This adds to the importance of understanding when and how the Nima device should be used. Beyond Celiac put together an FAQ so you can make sure that you’re making an educated decision about whether or not you’d like to use the Nima.

I was in the kitchen at the Beyond Celiac office getting a drink when our Vice President, Jennifer North, yelled to me from her office. “Get the camera! I have something you’ll be excited about!”

It was the long-awaited Nima device, a portable tester that can detect gluten in some foods.

I yelled across the office to my boss, Claire Baker. “Claire! The Nima!”

She rushed over, we grabbed the camera, ran to the conference room and started filming our first-ever unboxing video. Antsy to try it out, we decided to skip our salads and order lunch from the local vegetarian place that we love (their butternut squash soup is to die for).

See video #1. We stirred up the butternut squash soup, dropped it into the Nima, and were so happy to see the smiley face on the device, showing us that the soup was gluten-free.

We grabbed Jenn’s Pad Thai, knowing that it probably wouldn’t come up clean. It didn’t (it wasn’t advertised as gluten-free and Jenn doesn’t have celiac disease, but her daughter does). See video #2.

Lastly, we tried Claire’s Massaman Curry. Claire has been diagnosed with celiac disease for six years. We didn’t film this one, and I’m glad we didn’t. Claire and I eat from this restaurant often enough. She sometimes stops and picks it up on her way home for dinner. When the wheat stalk and “gluten found” message popped up on the screen, the excitement of the Nima was gone.* She has eaten this dish so many times. She lovesthis restaurant. She doesn’t go out to eat often, but she thought she had found a safe haven. She hadn’t.

I could see every emotion on her face. How many times had she been glutened from the restaurant? How didn’t she know it was happening? Has she not been as careful as she thought? I could see her blaming herself, even though she had no reason to. Without symptoms, how can you know if you’re being glutened?

I don’t travel very often for work, but a few of my coworkers do. They come back and tell me about their experiences and how they got glutened at XYZ restaurant. I’ve seen the aftermath, but I’ve never seen it happen in the moment. When you work in an office of only 10 employees, you get to know people pretty well. I’ve been with Beyond Celiac for almost five years, and most of my coworkers have been there even longer. We care about each other. You can’t help but get close in that kind of environment. And it always sucks to see them sick. It’s even worse when you see it happen.

Later that night, I went to a restaurant with Kristin Voorhees, MA, Beyond Celiac Director of Healthcare Initiatives and our mutual friend, Kim. Kristin has celiac disease. This is another place we frequent for appetizers and a glass of wine after a busy week. Curious to see what it would be like to use the Nima in a public setting, I brought it along. We tested Kristin’s Brussels sprouts, a dish she often gets because it’s “safe.” Turns out, it’s not. We had no idea what to do when the Nima came back with “gluten found.” Our waiter came back before we could decide how to handle it.

We were pretty honest with him. We know this is weird, we told him. I mean, I pulled a gluten testing device and capsule out of my purse, tested food and now not only did we have to re-explain celiac disease, but we had to explain what the heck this device was flashing on our table. It was awkward. It felt like a “gotcha!” moment, but that’s not what we intended. The chef came out and was a little rude. He told us that unless they started growing Brussels sprouts with a new grain, that dish was gluten-free. As it turns out, they toss pizza in the back of the restaurant with flour, and they roast the Brussels sprouts in the pizza oven. Clearly, not gluten-free.

Kristin handled it like a champ, but I was really bothered. Twice in one day, I watched my coworkers and friends find out that they’ve been accidentally being poisoned and had absolutely noidea. Eventually, the manager of the restaurant came over to talk to us. I could tell that Kristin just wanted this problem to disappear, so I took the reins and explained everything to him. He was interested in the Nima; he wanted one at the restaurant to test his food. I explained to him that while his intentions were in the right place, that wasn’t the right route to go. The Nima has its limitations – something I’ll cover in another post. We told him about our GREAT Kitchens program and gave him information on how to get trained in safe gluten-free food preparation. I hope he calls us. How many other people with celiac disease are eating there and thinking they’re safe?

To be clear, I don’t have celiac disease. I do live with a different invisible illness and it can be life-interrupting, but I won’t pretend that it’s serious like celiac disease. Painful and inconvenient at times? Yes. But my health isn’t in the hands of every person that handles my food. I know the experience of bouncing from doctor to doctor, in pain, scared, and frustrated, just to have them tell you there is nothing wrong with you. Like my coworkers, I eventually found my answer. Unlike my coworkers, I can take a pill and make other lifestyle changes to manage my symptoms. I don’t have to ask lots of questions and put my condition on the table at a restaurant. I understand their struggle, I really do, but to watch it unfold feels strange to me. These women work at a national celiac disease advocacy organization. They have access to the best minds in the field. Their lives are about celiac disease – professionally and personally. If they still get glutened, what does that mean for everyone else?

If you follow our Research News Feed, you’ll know that the research is showing that the gluten-free diet alone isn’t enough. Up to 70% of people with celiac disease are being exposed to gluten, despite their best efforts to stay gluten-free. Claire and Kristin fall in that percentage. Now, they’re even more squeamish about eating away from home. Claire is giving it up completely, at least for a while. She put it to me this way: Imagine if there’s a celebrity that you idolize. You love their music, their style. Then, you watch them in an interview and realize they’re a terrible person. There’s something about their attitude that turns you off. It taints the way you see them; it’s kind of ruined for you. That’s how she feels about this restaurant – a small thing that made her happy is forever tainted.

Yes, Kristin and Claire could give up eating out, and they’ll probably be mostly fine, except that Claire has a shared kitchen at home and Kristin still wants to socialize. Having a drink and dinner with your friends after work is the most basic, most normal thing. Why should she, should you, have to do without something that’s important in her life for fear of food? Frankly, it sucks.

My point in telling you all of this is really to say that we’re with you. I might not have celiac disease myself, but I really, truly know that just a crumb of gluten may incapacitate you for days, maybe weeks. You’re worried about the long-term effects. I know that you’re going to feel angry and sad and sick. You might miss work. You might go to a wedding and eat snack bars from your purse. You might not even go to the wedding at all. All because of food and the (completely justified) fear of getting sick.

Beyond Celiac hears you, and we read the experiences that you share with us on social media. So many of our staff are living it with you. We’re pushing for solutions so that you can have options outside of just the gluten-free diet if you want them. We want to see a cure, and we’re working to make that happen. You play a role too. If this is your reality, and if you hate this reality, sign up for our Research Opt-In. Stay informed on the latest in research. Keep an eye out for opportunities to get involved (this doesn’t mean just drug trials. It means surveys, focus groups, and so many other things, too).

In the meantime, we’ll be eating in for a while. I can’t wait for the day when Kristin and Claire can walk into a restaurant, order their food and simply enjoy it. I know they can’t wait either.