TjuanikaThe Voices of Celiac Disease

You’re always in your mind, even when you’re out with family, saying to yourself, ‘Well, I can’t eat what they’re eating.’

Portrait of Tjuanika

“This journey has been challenging, but I’m looking forward to being part of a team that’s seeking a cure. I want to support the cause and make people aware of celiac disease, as well as let people know that we’re finding a cure. Why wouldn’t you want to be a part of something that’s trying to put this baby to bed?”

Meet Tjuanika Griffin (North Carolina)

Unlike many with celiac disease, Tjuanika Griffin’s journey didn’t start with an onslaught of symptoms or a familial connection. Rather, Tjuanika’s diagnosis came through a chance encounter with a new doctor and a simple routine blood test. “I kind of stumbled upon it. I had just relocated from Florida, and I was trying to establish a primary care physician. So, I went to a new doctor, and I was explaining my medical history, and she took it upon herself to take some blood work,” Tjuanika recalls. “I got a call back from one of the staff members at the doctor’s office, and it was scary at first because they were a little somber. They were kind of hesitant, and they told me, ‘Well, I’m sorry to tell you, but you have celiac disease.’ I didn’t know what that was, and of course, she didn’t have a lot of time to explain what it was either.”

With no gastroenterologist and little help from her diagnosing physician, Tjuanika was left to learn the ropes of the gluten-free diet alone. Countless hours of research and online resources were the only tools Tjuanika had to help herself adjust to her new life. “I took the initiative to Google celiac disease, and I saw all these things about it that were kind of scary. It was life changing because I needed to change the foods I ate, the way I shopped for foods. Even now, I’m still learning,” Tjuanika says, “It’s ongoing every day because having celiac disease makes it hard to find somewhere quick to grab something. And then you’re always in your mind, even when you’re out with family, saying to yourself, ‘Well, I can’t eat what they’re eating.’”

Through reading and experience, Tjuanika learned the best ways to keep herself safe: by advocating for herself, finding gluten-free options, learning about ingredients, and, of course, planning ahead. “I do a lot of pre-planning. If I know that I’m going to be traveling—which I still try to do a lot of, but on the road so it’s easier—I make sure I have a lunch bag. It’s a lot of prep work: from the time that you rise, you’re thinking, ‘I have to have food ready.’ It’s a challenging situation, trying to maneuver through work, traveling, school, and preparing meals all the time.”

Throughout the challenges, Tjuanika takes the time to find bits of joy, even if it’s something as simple as discovering a product has recently been made gluten-free, like Tjuanika’s favorite: double-stuffed Oreos. “To walk in a store and to see that these companies thought about us—that they thought about our community and said ‘Hey, we’re going to make snacks for them, too’—I’m just floored by the inclusiveness.”

Now a few years since Tjuanika’s diagnosis, she turns to give back to the celiac disease community, working to ensure no one else feels as alone and frightened as she did in the beginning of her journey. “I was lost after my diagnosis, and I didn’t have a place to go. No direction, no guidance, no anything. All I was told was, ‘You have celiac. Try to stay away from gluten foods,’ which is easier said than done. And then I didn’t know much about the severity of it, so having nowhere to go after being diagnosed is what brought me to Beyond Celiac originally. There was so much information on the website that I didn’t know anything about,” Tjuanika explains, “And then when I saw the ambassador program, I thought, ‘I’d love to be a part of this because Beyond Celiac has been beneficial to me, even though they didn’t know it.’ I had always been waiting for the newsletters to come and on the website researching, so I thought it would be a great thing to be a part of, and I knew it would pull me out of my comfort zone.”

As a part of the Reach Beyond Celiac Ambassador Program, Tjuanika is ecstatic about working toward a cure for celiac disease. In thinking about a life beyond the gluten-free diet, Tjuanika hopes for a time where food and meals aren’t a constant source of anxiety and longing. “Only having a diet to fall back on is limiting. You always have the fact that you have celiac disease in the front of your mind, from the time that you get up and go out the door to the time you come back. A cure would mean I would get my life back as I knew it. I can eat what I see my family eating. I can redirect my attention to something else, other than making sure that I don’t eat the wrong thing all day because having celiac is an unrelenting stressor.”

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