“One of my biggest philosophies is the notion of ‘see them, be them.’ Sometimes you need to see people like you—whether it be age, race, or gender—doing big things, and I think celiac disease fits into that. Because when you get the diagnosis, you think about all the things that you aren’t going to get to do. So, if I share my story—and I don’t think it’s anything super special—but I can share my story and say, ‘You know what, I’ve done these things, and there’s no reason that anyone else with celiac disease or a non-celiac gluten sensitivity can’t do these things, too.’ The power of a personal story is so strong, and I think people forget that.”
Meet Clayton Steward (Leavenworth, Kansas)
When athlete Clayton Steward started feeling sick the summer before his senior year of high school, he chalked it up to a combination of rigorous exercise and a simple upset stomach. “I had gone to a basketball camp that was really intensive—getting up at seven in the morning and going until eight or nine at night—and on one of the last days I just started feeling pretty sick,” Clayton recalls. “I felt super nauseous in warm-ups and I was dry heaving, and I thought, ‘Hmm, breakfast must have upset me, not a big deal. It is what it is.’ I just pushed through, but the next day was the same exact thing.”
As the summer continued and Clayton failed to shake his “stomach bug,” he soon found himself worried there was something far more serious at play. “It’s the summer before my senior year, and I have all these big plans, big goals. And it got to the point where I’d go to practice, and I couldn’t do anything. I would be sitting on the sidelines, or I would be trying to run and be dry heaving the entire time. It wasn’t until it started getting really bad—some of my hair started falling out and I lost 15 pounds in a week—that we were like, ‘Okay, it’s time to go to the doctor. Something is seriously wrong.’”
Unlike many with celiac disease, Clayton was one of the lucky few who didn’t have to wait 6–10 years for a diagnosis; instead, a celiac disease blood test was included in his very first round of diagnostic testing. Though his doctor gave him a diagnosis quickly, they provided no additional help or information about the gluten-free diet, leaving Clayton and his family to make the transition on their own. Through research, Clayton slowly started to get comfortable in his new lifestyle.
Yet, as a senior in high school, Clayton couldn’t help but look toward the future—how would he manage celiac disease in college? “Right before Christmas, I signed to play college basketball. So that opened up a whole new world of, ‘What is this going to look like for me?’ Because I was managing pretty well, but it became really real after I moved to college,” Clayton explains. “We had talked to the people in the dining hall on a tour and they said, ‘Oh, yeah, we have a girl on the volleyball team, she has celiac disease, she eats in the cafeteria, it’s all good.’ Then I get on campus and I talk to the ADA coordinator—and that’s something that I really try to advocate for, connecting with the ADA coordinators—but I sat down with her and she said, ‘That volleyball player they told you about? She got sick three or four times last semester.’ I thought, ‘Great. I’m on campus. I’m already enrolled in classes. I’m already doing pre-workout stuff, now I have to change plans. I have to figure out how to cook for myself, prep meals for myself, and maintain a diet that’s going to sustain me.’”
As Clayton adjusted to college life, he became adept at planning his meals, speaking up for his needs, and ensuring that he had safe food to eat wherever he might go. “I think it all boils down to planning, looking ahead, scheduling, and then self-advocating,” says Clayton. “That’s the other thing that I always tell people. It’s hard, especially when you’re trying to fit in with the community and make new friends, but I really would attest everything that I have done to those two things, just proper planning and self-advocating.”
Despite Clayton’s success at managing the gluten-free diet on his own, living with celiac disease as a young adult brings unique obstacles. Though socializing, finding safe gluten-free alcohol products, and breaking down the stigma of eating gluten-free as a man aren’t easy, Clayton faces the challenges with optimism. “I do think it’s taboo for men. It’s toxic masculinity. Yeah, we can’t eat bread or drink beer, whatever. And I’m at the point in my diagnosis, and just my walk of life, where I do have the confidence to be like, ‘Beer is nasty regardless, so more power to you.’ But again, I’m trying to be a voice for the people that haven’t found their voice yet. I think that it’s super important to say, ‘Here’s how I handle it. Try it yourself.’”
Clayton extends this same optimism and positivity to his celiac disease diagnosis by finding the silver linings it has brought into his life, one of which is connecting with community. Initially a volunteer at the Kansas City Step Beyond Celiac 5K, Clayton recalls feeling empowered to join the community with an open heart. “That was just such a fun day,” Clayton recalls. “It really had this festival feel. I got to be the volunteer photographer for the event, and just some of the photos that I have, when I go back and look at them, they still give me chills. That kickstarted my experience in the community, and ever since then, I’ve felt like, ‘Wow, this is intense, but in a good way.’ Lots of blessings in disguise have definitely come out of having celiac disease.’”
Now a Reach Beyond Celiac Ambassador, Clayton is excited to share his story and empower those with celiac disease to look beyond their diagnosis and focus on what they can accomplish, gluten-free and all. “I’ve met so many people—cool people that have been CEOs, that have run tons of marathons, that have been business owners, teachers—I mean, I haven’t gathered anything that actually shows me that celiac disease stops you from getting everything that you are supposed to get in life. Celiac disease hasn’t slowed me down.”
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