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What happens when a Division I athlete loses 40 pounds, can barely form sentences during practice, and keeps hearing from doctors that it might just be anxiety? Kamiah Gibson, a D1 women’s volleyball player at Ohio State and psychology graduate student, shares how she had to diagnose herself after finding celiac disease information on TikTok, only to be told over the phone to “just eat gluten-free” days before a three-week road trip. Based on her KevinMD article, “Managing celiac disease: Overcoming the hidden social burden,” this conversation reveals the gap between a celiac diagnosis and actually knowing how to live with one. Gibson describes training eight hours a day on a body that could not absorb nutrients, the isolation of being afraid to eat anywhere, and how a consumer gluten detection sensor gave her the confidence to travel and share meals with friends again. You’ll hear why cross-contamination is the hidden danger that most newly diagnosed patients are never warned about, how the emotional toll of chronic illness redirected her career from pre-med to mental health therapy, and what advice she offers young adults navigating a diagnosis that reshapes every social interaction around food. If you or someone you know lives with celiac disease, this is the episode to share.

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Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast. Today we welcome Kamiah Gibson. She’s a D1 volleyball athlete and a graduate student. Today’s KevinMD article is “Managing Celiac Disease: Overcoming the Hidden Social Burden.”

Kamiah, welcome to the show.

Kamiah Gibson: Thank you so much for having me. I’m really excited to be here and share my story.

Kevin Pho: All right, so let’s start by doing that. Just tell us a little bit about yourself and the story that you shared on KevinMD.

Kamiah Gibson: So yeah, I’m Kamiah, like Kevin mentioned. I have celiac disease. I’m currently a graduate student in social work and I just finished volleyball actually in December. So I finished my fifth year at Ohio State. I was diagnosed with celiac disease as a sophomore in college. Previous to that, I was completely healthy, living a normal life. And then out of the blue, I just got sick all of a sudden. Doctors couldn’t figure out what was wrong with me. I was sick for months, lost 40 pounds. I was having to advocate for myself because I knew that something was seriously wrong. And the doctors always just think it’s anxiety or a stomach flu, something like that. But I knew something was seriously wrong.

So I was diagnosed my sophomore year and it’s been a journey. Four years later, I’m definitely a different person and I know how to advocate for myself. And I also love to post about it on social media to share awareness and help other people out that have just been diagnosed.

Kevin Pho: All right, so you were a sophomore in college. Obviously an athlete, previously healthy. You said that you had these symptoms where you lost 40 pounds. What other symptoms did you have to make you think that something was seriously wrong?

Kamiah Gibson: So it started with migraines. I had always had migraines my entire life, so I didn’t think anything too crazy of it, but they were just getting a lot worse and more frequent. So I actually took an emergency migraine medicine from a doctor. Since I was an athlete at the time, I was seeing the doctors that would just come into the athletic facilities. And my trainer told me, let’s just test out the medicine today in case you need to take it before a game, to see how it would make you feel. I had a really bad reaction to the medicine, ended up in the ER. And ever since that night, my stomach was just a mess.

So we gave it like two weeks where we were just like, maybe the medicine just ruined the lining of my stomach, and that wasn’t the case. It went on for about two months. When you’re an athlete, you’re not supposed to go to doctors outside of the athletic facilities at the school that I was at at the time. But I decided to kind of go and do my own thing. And I had actually seen something on TikTok about celiac disease and I’m like, this could be it. Because my stomach was such a mess. I was having brain fog. Some days I couldn’t even form sentences. I was losing so much weight because everything I ate was just making me sick. Obviously wasn’t absorbing any nutrients because of the undiagnosed celiac disease.

And so I actually asked a doctor to test me for celiac disease and she was like, I really don’t think that’s what’s going on. I think you would have somewhat of different symptoms because I wasn’t throwing up. I’ve never thrown up. They thought that because I wasn’t throwing up, I couldn’t have celiac disease, which wasn’t the case because my blood test numbers came back through the roof. And then I got an endoscopy and a biopsy to confirm it.

Kevin Pho: And like you said, previously healthy. Any family history of celiac disease?

Kamiah Gibson: I did not know of anyone in my family that had celiac disease, but now I know that I do have a cousin that has it. And then after I was diagnosed, to do a third confirmation, my mom and my dad got tested for the gene, and my mom has the gene, but it hasn’t been triggered yet.

Kevin Pho: And for our listeners who may not be familiar with celiac disease, give us a 30-second primer on what that is.

Kamiah Gibson: OK, so celiac disease is an autoimmune disorder. It’s where if you eat gluten or anything that comes in contact with gluten, your stomach basically attacks itself in the small intestine, breaking down the villi that absorb the nutrients, like little legs in your stomach that pull in the nutrients. So you’re causing damage to your body internally. And then you feel the physical symptoms and also the mental symptoms that come along with it.

Kevin Pho: So once you got that diagnosis, obviously you are playing volleyball, very busy college student. Tell us how that affected you and what happened next.

Kamiah Gibson: Yeah, I think anyone that’s a college athlete knows how hard it is. The training, I’m in the gym four hours a day. But when I was diagnosed, we were actually in preseason, which is two practices a day. For two weeks, you’re just in the gym all day, every day. So that’s around eight hours of practicing where I wasn’t feeling my body because everything was making me sick. I again, wasn’t absorbing nutrients, so I was just going through so much high level of physical activity and not feeding my body the way that it needed to be fed. So that’s why I ended up losing so much weight.

And then, I mean, you lose that amount of weight and I’m feeling so bad during practices. I did not miss a practice though. I was very resilient. I did not miss a practice, never sat out of a game. Even when I have brain fog and I can’t even see the ball. But it affects your game a lot. I can’t lift the same weight that I was lifting in the weight room. All of my teammates are concerned about me, going to the trainer. Should she be playing? I had teammates seriously concerned about my health. Looking back at it, I wish that I would have taken a medical redshirt year just to help my body heal. I think it would have helped me heal faster in the long run. But everything works out the way it’s supposed to, I guess.

Kevin Pho: Now, did you get referred to a gastroenterologist once that diagnosis of celiac was made?

Kamiah Gibson: I was living in West Virginia at the time in Morgantown, so I didn’t actually. The doctor that diagnosed me was a GI doctor and she had actually, just like after the blood test, she had called me and told me, hey, you have celiac disease. I really didn’t know anything about it. And she told me, you need to eat gluten-free, over the phone. And I was like, OK, cool. Like that’s it. Then once I moved back to Ohio, I got a GI doctor in the Cleveland Clinic that specializes in celiac disease patients. So that was very helpful. He helped me a lot, put me on a steroid and that helped me a lot.

Kevin Pho: So over the phone, this GI doctor told you simply to eat gluten-free. So as a competing D1 athlete, tell us what that meant to you and how that affected your training and eating. What does it mean to eat gluten-free?

Kamiah Gibson: Yeah, so at the time when she called me, I was two days away from leaving for a three-week travel trip because we were going to Pennsylvania, Hawaii, and South Dakota for a three-week travel trip to play a bunch of games. And so I just saw, oh, I’ll just eat gluten-free. I’ll just order gluten-free at restaurants. And I think that a lot of times when people get diagnosed, that’s what the doctors tell them, just do a strict gluten-free diet. You don’t think or know about the cross-contamination that can happen in the kitchens.

So I was just traveling, playing volleyball, and just ordering gluten-free. I was sick the entire trip. I don’t even remember some parts of the trip because I was so sick. I was miserable. I always say I need to go back to Hawaii because it was one of the worst experiences just because I was sick the entire time. But yeah, it was rough. I definitely found out the hard way that you can’t just order gluten-free at restaurants for sure.

Kevin Pho: One of the things that you wrote in your article was there is a hidden emotional burden. You talked about some of the social implications of being diagnosed with celiac disease. So tell us more about that and the dynamics that you had with your teammates.

Kamiah Gibson: Yeah, that was one of the hardest transitions for me because I’m a very social person. I loved going out to eat with my friends. Traveling was a big part of my life. One of my main goals in life was to travel the world. And then I was diagnosed with celiac disease and it’s really hard to eat anywhere. Definitely in foreign countries. So it was a really hard transition for me. Until I found the Nima gluten sensor, I couldn’t go out to eat. I was so sick to the point where I was just scared to try anything new. I don’t know if I mentioned this in the article, but I just ate plain rice and chicken for six months after that trip because I was so done with being sick. I just wanted to feel better. But yeah, I had like a strict eye. I wouldn’t even eat at gluten-free restaurants because I was so scared until I found the Nima gluten sensor, which helped my social life a lot.

Kevin Pho: So that gluten sensor is a consumer gluten detection technology. Tell us more about that and how that fits into your daily life now.

Kamiah Gibson: Yeah, so I actually found it because I was searching for a gluten detection service dog, which they’re very expensive and harder to travel with. So when I was Googling that, that’s when I found the Nima gluten sensor. My parents were like, let’s just try it out. It might help you have a peace of mind when you’re eating new foods, even in my kitchen.

So when I got the Nima gluten sensor, I just started testing everything in my kitchen. And some things that I was eating at the time was making me sick that I just didn’t know. I couldn’t track down. I thought I was just sick because I had been recently diagnosed. But yeah, so I tested all the things in my kitchen, and then as time grew on, I started to test restaurants. And like I said, now four years later, I’m a completely different person and I give all props to the gluten sensor. Dave, the old CEO that I partnered with in the first place. As an athlete, I think I was their first athlete to partner with the gluten detection device. And then now Mike is a new CEO. They’ve been completely amazing to me and I give them all props for me to be able to continue my athletic career.

Kevin Pho: Yeah, so how does it work? I’m actually not familiar with that device.

Kamiah Gibson: OK, so you can put a pea-size, so there’s the little triangle sensor and then the capsules. You put a pea-size amount of food into the capsule. And then I also like to dab the teeth around the top of the capsule around my food to pick up extra juices or seasonings. You close the capsule, put it in the sensor, in three minutes you know if there’s gluten, down to 10 parts per million of gluten, which that includes cross-contamination within the kitchen.

So it saves me a lot. And I have learned that even if you advocate for yourself, you explain, I call a restaurant beforehand. I research them. I use apps to see what restaurants are safe. I’m asking to speak to the manager, to the chef. I’m doing everything to make sure that it’s safe. And then I’m using my Nima as that last step of security. And you would be surprised, after all the work that I do, the amount of times that gluten shows up in the food. Because the waitress is trying to relay the information to the chef, or the pans aren’t cleaned the right way. It has saved me a lot.

Kevin Pho: So some critics might say that devices like that creates a lot of anxiety and just really over-testing around food. But it sounds like from your story is actually the opposite. It’s given you that feeling of security and being able to go out and eat with confidence. So tell us your experience. Do you ever just get over-anxious testing, or is it more the second thing, it gives you that sense of security?

Kamiah Gibson: It definitely gives me the sense of security. I haven’t had the experience where it causes my anxiety. It helps it a lot. Like I mentioned, I wouldn’t eat out anywhere before the Nima gluten sensor. I tested everything in my kitchen. It saved me from eating things probably for years that I wouldn’t have known that were not safe. It’s helped me travel. I’ve traveled to Italy, Greece, Argentina, Australia. I’m going to France in May, where I don’t feel like I have to take everything with me. I would pack a huge cooler, but now I’m able to just go to a restaurant, test it, or find a safe restaurant if that restaurant doesn’t show up gluten-free. So it has helped me with my anxiety a lot. I don’t have to guess. My health, and I’m sick for a month, so my health for the next month isn’t just in the hands of a stranger that’s a chef that might not understand how serious celiac disease is.

Kevin Pho: And ever since increasing the strictness of your diet, have you felt normal being able to train, work out, play games, participate in social events? How normal did you feel after this additional strictness to your diet with a sensor?

Kamiah Gibson: I’m completely healthy right now. I think the last time I got gluten was two years ago now, knock on wood. But I’m strict about my diet. I use my gluten sensor to keep me safe, so I’m not sick a lot because I am pretty cautious about everything and I take really good care of it.

Kevin Pho: So you mentioned earlier that you are on social media sharing your story. What kind of messages do you hope to bring across from people reading your social media feeds?

Kamiah Gibson: I like to touch on the mental aspect of it. I wish that there was more research done on the neurological side effects of getting gluten. I actually was studying to become a doctor and then I was diagnosed, and I kind of didn’t like doctors at the time because I couldn’t figure out what was wrong with me. And it affected me emotionally a lot, like the social aspects. So I decided to switch my major to psychology. And I decided I wanted to be a mental health therapist for people diagnosed with chronic illnesses. So it actually helped transfer my entire life path.

So on social media, I like to raise awareness about celiac disease. I like to raise awareness about the Nima gluten detection device because of how much it has helped me with my anxiety. And then also honing in on the mental aspects and how to help yourself when you’re first diagnosed.

Kevin Pho: So celiac disease is often diagnosed in young adults like yourself. Tell us the type of messages or advice that you could share with others who may be going through similar symptoms to what you first gone through.

Kamiah Gibson: Yeah, my first piece of advice is always that it’s going to take time. I dealt with depression, anxiety in the beginning because I didn’t think that my stomach was going to be able to heal. The doctors actually thought I had refractory celiac disease for the first couple of months, which is where your stomach just doesn’t heal and you’re kind of basically sick forever. So hearing that news definitely brought on a lot of emotional sides of things. So my thing is just, it’s going to take time to heal. You have to be strict with your diet. You have to be careful with what you eat. Doing a low FODMAP diet helped me a lot in the beginning. And then I always recommend the Nima because of how much it helped me and how much it’s helped keep me safe and it’s helped me continue to live my life the way that I wanted to.

Kevin Pho: We’re talking to Kamiah Gibson, D1 volleyball athlete and graduate student. Today’s KevinMD article is “Managing Celiac Disease: Overcoming the Hidden Social Burden.” Kamiah, let’s end with some take-home messages that you want to leave with the KevinMD audience.

Kamiah Gibson: I just want to leave that if you have celiac disease, you’re always free to reach out to me. Search into the community of people with celiac disease. It really is an inviting place. It’s helped me so much on social media to share my story and see other people share their stories. And just continue advocating for yourself. I know it gets tiring, but we’re getting somewhere. There’s a lot of laws being changed surrounding gluten-free food. And just definitely look into the devices that can help you out.

Kevin Pho: Kamiah, thank you so much for sharing your story, time, and insight, and thanks again for coming on the show.

Kamiah Gibson: Thank you so much for having me.