BTS of celiac diagnosis as a D1 athlete

Alright, here's a little glimpse into something I've kept quiet about – BTS of being diagnosed with celiac disease while playing D1 volleyball. Now, I'm not here to bash anyone; I'm just laying out my raw experience of what I went through volleyball wise while being diagnosed with celiac disease. It's something I've never really talked about publicly because some things are not worth my energy, but it's time I share my experience because I know there are others out there dealing with similar struggles.

Let's get to the truth about being a college athlete with celiac disease. Sometimes there's not much help that can be given and I have never been the person to want to ask for help. When you have celiac disease you already feel like a burden when it comes to activities with food. I don't want to make people go out of their way for me. My journey with celiac disease started at my former school. I was sick, like really sick, for about 3 weeks before the trainer would let me see a real doctor. College sports are a business and they wanted to keep me on the court. If you have celiac you know that the nausea can be unbearable..but I had no choice but to go on a white-water rafting trip for 4 hours the week before diagnosis. Best part was, I took wheat thins on the trip to "help" my nausea:) The athlete doctors that would come to our facilities said that I just had a stomach virus. I believed them until I lost 10 pounds in preseason and rice was the only thing that I could get down. I knew something was seriously wrong and begged to see a GI doctor. It can be very frustrating as a 19 year old female to not be listened to when it comes to your health. I remember thinking if I was a football player then I would've been treated differently. During the GI appointment I asked them to test me for celiac (diagnosed myself with google) but she didn't think that I had it. Two weeks later my blood results came back through the roof. A month later I had an endoscopy to confirm the diagnosis. I felt relieved that I finally knew what was wrong with me. That is, until I had to clean out my kitchen and realized gluten was in everything I had. There was no help from any coaching staff member, trainer, or nutritionist when I was diagnosed.

After receiving my diagnosis, the nutritionist handed me a list of ten gluten-free foods, and I couldn't help but burst into laughter. It wasn't because I didn't appreciate the effort – it was just a bit ironic. I mean, come on, I already knew what to eat, but here I was, still so sick. Celiac Disease is not just eating gluten free once diagnosed and you are magically fine. It can take a year for your small intestine to heal. About two weeks after diagnosis we left for a three week travel trip. On this trip our trainer was in charge of getting us snacks for the road and for games. She had a special snack pack for me that she said was gluten-free so I trusted her with my health and did not read the ingredients on the things she got me. For the entire time we were in Hawaii I was so sick because she was giving me beef jerky with WHEAT. I thought that I was sick from trying to eat out at restaurants which, also, could have been a factor. I slightly remember playing UCLA (I swear being glutened ruins your memory) and I could not even focus on the ball because my brain fog was so bad from eating WHEAT during timeouts. I was scared to eat because I was so sick so I started to just eat peanut butter out of a jar to try to get calories in for the rest of the trip. I found out after the trip that she had been feeding me gluten the entire time when I went grocery shopping and read the label. This is when I learned my lesson to never trust other people with my food and I still don't. I know this is half my fault for not checking myself but I was a celiac rookie. I never went to the trainer again even if something was hurting, I didn't trust them to care enough about me. I started to make my own doctor appointments without my trainers approval because I needed to get better as fast as possible.

My coach's quote was, "your skill level has to match your high maintenance level". AKA we were losing, coach was blaming it on me getting sick, and I did not deserve to be helped with food. That's how I took it. I was made to feel like everything was my fault even though you can't control an autoimmune disorder taking over your life. I never missed a practice or a game and always showed up for my teammates, even if I had to run to the bathroom every five minutes of practice to be sick. I struggled mentally a lot, especially as the main position on the court. I remember one day just breaking down in the weight room because I couldn't lift the same weight I could before I got sick. I remember crying in the coaches office trying to explain why I could not just magically get better because my intestines were damaged and the coach would still call my autoimmune disorder my "issues". Some days I would be asleep on the locker room floor 10 minutes before our game would start. I was told by coach at least once a week that I needed to eat more and gain weight. That made me so frustrated because I was doing everything I could but it was physically impossible for my body to absorb nutrients. I forced shakes down and eating turned into a chore on my checklist. (Should clarify here that although I was scared to get glutened I didn't develop an eating disorder but that is common in people with celiac). I was a young girl going through health issues and your coaching staff should be someone you look up to, someone you would want in your corner. I'm lucky to have that now at my new school. Like I said, I'm not trying to bash my former school and that's why I won't write too much detail, just sharing some of my experiences when I was diagnosed to show that athletes can be going through something that the fans never see or know about. Losing 20 pounds in a month changes an athlete's game in many ways, and yes I still was on the line every dang time it was time to run suicides. The only people that truly knew how sick I was was my mom, dad, and Ciro because they saw me off of the court every day. I never complained and kept a smile on my face so not even my team knew how sick I was. Huge shoutout to my amazing mom for helping me get my health back on track and putting her life on pause. She is my hero. I was sleeping 15 hours + because I had no energy. I woke up, went to volleyball, then went back to sleep. Nobody saw me outside of volleyball for 6 months.

I was not offered extra compensation for not being able to eat at the facilities or for packing all of my food on away trips. And gluten-free food is EXPENSIVE. There's not many college athletes with celiac disease so I'm not surprised that there is not much help from the NCAA or rules put in place for extra compensation. I am working to advocate for myself and others in the future. I hope that I can help educate others to help future celiac athletes. My goal growing up was to play pro volleyball but after my celiac diagnosis I don't think you could ever pay me enough to pack my food and travel every week for the next 5-10 years of my life. Don't get me wrong, it's possible but not something I would enjoy doing.

To other athletes going through something similar: I think having an experience like this where your sport/environment is hurting your overall mental and physical health can cause burnout. Other than the weight loss, no one could of guessed what I was going through off of the court. Some days I questioned if I wanted to put my health first and take a break from volleyball. When you're doing everything you can to be healthy and not getting anything in return, it can take your love away from the game. It made me so sad to think and I NEVER could have imagined myself dreading going to practice. After working my butt off to get my health back on track I realized that I was not in an environment where I felt supported. That's when I opened my eyes and saw that I had to transfer.

My advice for you if you are going through something similar: It is YOUR body and only you know how you are feeling. Not many people understand an autoimmune disorder so forget about their opinions. Take a break if you need it and remember that nothing is more important than your health! Keep advocating for yourself and remember that your body is capable of so many things you might think it won't make it through<3

That sounded like a lot of negatives and I'm not complaining I am just sharing what behind the scenes was like for me. I KNOW that something way worse could of happened and I am thankful I am still healthy to play a sport that I worked so hard for my entire life. :) I am so thankful to be able to spread information about celiac disease and I hope that more praise and light is given to athletes going through similar adversities. Oftentimes, no one sees how hard you have to work off of the court to be able to stay healthy on the court. Because of this, I have found many passions in life besides volleyball and I am excited to continue those after my college journey.