Winning as an Athlete with Celiac & Postural Orthostatic Tachycardia Syndrome (POTS)

by Kristen Taylor, guest author

My name is Kristen Taylor, founder of the blog ‘Winning Without Gluten.’ I was diagnosed with Celiac in 2007 and POTS in 2009. I currently live in Portland, OR where I work in Global Brand Marketing for Nike. I feel very fortunate to live & work in a sport environment where I get to interact with some of the best athletes in the world on a daily basis. Portland is one of the highest ranked gluten free-friendly cities in the world, providing access to some of the latest and greatest gluten free products, restaurants, and resources on the market! I have continued to feel better over the past 6 years since my diagnoses and have been able to return to running in the capacity that I once loved but doubted I would ever get back to. I conquered my first marathon in the summer or 2012 and recently finished the 2013 Boston Marathon in a time of 3:08. I created WWG as a way to connect athletes of all levels who live a gluten free lifestyle, share our stories, and blog about my favorite GF products, recipes, resources, restaurants, and most recently offer give-a-ways!

Hi there! I’m Kristen, and just this week I celebrated my 6^th year anniversary with Celiac Disease! Sometimes it is hard to imagine that I haven’t always been gluten free. But on the other hand, I remember the afternoon I was diagnosed like it was yesterday. I was a sophomore at the University of North Carolina where I was playing lacrosse for both the school and the USA team. I was thrilled to be back at for the fall semester to build on a successful rookie year. That was until even the slightest task of getting out of bed suddenly became exhausting. I started losing weight, was nauseous all the time, and suffered headaches that woke me up in the middle of the night. Even worse, I began blacking out with dizziness up to 15 times/day. What on earth was going on with me?!!

After a couple weeks of progressively feeling worse, I went through the whole gamete of blood tests, one of which tested for Celiac Disease. The diagnosis was confirmed with an endoscopy just a few days later. Alas, I had found my answer and all I needed to do was stop eating this thing called “gluten?!” Cool!

Cool until I brought home my first load of GF groceries from the local natural food store and attempted to make a PB sandwich. I’ll be honest, I cried. Ok, I sobbed. How on earth was I going to live this way!? I was a college kid; I didn’t have $7 to spend on gluten free cereal that tasted like cardboard. No way was I going to bring a bottle of wine to a football tailgate. I didn’t want 4 portions of the side-salad at the Italian restaurant to be my “dinner” while my friends enjoyed warm plates of lasagna. In my naive 17-year old eyes, my life was ruined.

Adjusting to a GF lifestyle in college was a challenge. And in the southern state of North Carolina where even sweet potatoes are fried, make that a BIG challenge. And add to that the importance of getting the right fuel for athletic performance. I had so much to learn but nowhere to begin. Hence, ‘Winning Without Gluten’ was born out of my desire to create a place where athletes of all levels {recreational runner to professional triathletes} could share their stories and connect with one another. I had never heard of any athlete with Celiac, was it even possible? Doubt began to creep in and I wondered if maybe it wasn’t. Good news for you all … IT IS!

Below are my top 5 things that I recommend you keep in mind as a Celiac {in college, as an athlete, or just in general}…

1. Educate yourself. Accept that things are going to be different but rather than get frustrated, see it as an opportunity to stretch yourself and learn as much as possible about the disease & the GF diet. There are so many great resources out there, take advantage of them!
2. Make mistakes. You won’t be perfect and that’s ok. You can try your very best and there will still be things out of your control. I ordered GF pasta at a restaurant the night before a game and even after confirming more than 3 times that it was 100% GF, the waitress arrived at our table mid-way through dinner to inform me that she had accidently brought me the whole wheat pasta…long story short, the next day didn’t provide any personal career bests.
3. Be Prepared. I try to always have gluten free snacks on hand so I never get in the situation to take a chance on something being safe or not. This means requires preparation & discovering your favorite GF snacks. Road trips for away games were always a bit of a challenge but the following 4 items will help ease the pain: 1) Personal cooler for perishable items on longer trips/hotel rooms without refrigerator 2) Tupperware containers to pack meals to go / leftovers 3) Plastic or re-usable bags to package snacks on the go 4) Plastic utensils or a set of clean silverware to avoid instances of cross contamination.
4. Share your knowledge. Your friends, family, and teammates don’t know what they don’t know. You probably didn’t know the ins and outs of celiac disease when you were diagnosed. So don’t expect them to. Be patient but share your knowledge so that they can learn and support your dietary needs. The more you share, the larger your support network grows. Some of my friends are even quicker at reading nutrition labels than I am these days!
5. Don’t be shy. Ask for what you need. This was one of the hardest things for me since I never wanted to even ask for the daily specials at a restaurant. I have become much more comfortable asking all sorts of questions, talking to the chef, and expressing the importance for my meal to be 100% GF. Remember, that waiter or waitress isn’t the one that will have to go home sick. You have ever right to be cautious!

And now it’s time for the curveball. I will share that I actually didn’t start to feel better with all of these changes {temporarily, at least}. I had eliminated every trace of gluten and I still felt terrible with the same autoimmune symptoms I was experiencing all along. We continued trying to discover the root cause to my declining health amidst various diagnoses of everything from Multiple Sclerosis to Lyme Disease. My athletic abilities were obviously suffering and I was beyond frustrated. To avoid rambling for another hour, I was diagnosed with POTS {Postural Orthostatic Tachycardia Syndrome} in the spring of my junior year. I remember that day like it was yesterday. I lay there, strapped to a tilting table for 3 hours. For nearly 2 years, I had waited for a diagnosis, an answer; anything. But I expected it to be something I had heard of or at least could pronounce. What was this crazy POTS all about?! Well that is a long answer but I will attempt to summarize it briefly…

POTS is classified as a type of dysautonomia, meaning it affects the autonomic nervous system (ANS). Symptoms present themselves in a variety of ways, however the main defining feature of the illness is orthostatic intolerance (difficultly maintaining a steady heart rate when upright) … for example, my heart rate normally jumps from around 55 to 125 within 30 seconds of standing. The ANS regulates adjustments in vascular tone, heart rate and blood pressure upon standing … directing blood vessels to relax or tighten. In people with POTS, this system is out of balance and blood is not going to the right place at the right time. The common results: heart palpitations, chest pain, fatigue, dizziness, lightheadedness, pre syncope (blackouts), constant headaches, digestive issues, and nausea…just to name a few! While some of these symptoms seemed unrelated, I later learned that the ANS is also responsible for regulating a multitude of other organs and functions in the body. To learn more about POTS, check out my blog here {http://www.winningwithoutgluten.com/p/pots.html}

So maybe I didn’t tear an ACL but I certainly had some unique obstacles in my athletic career.  Fast forward to 2013; I am a healthy 25-year old with my dream job at Nike Headquarters, on a journey where I have discovered a passion for food and nutrition through the monitoring of my POTS and GF lifestyle. There is no doubt that I used to take my health for granted. I think it’s safe to say most people do until they fear they might never get it back. Yes there have been ups and downs over the course of the past 6 years but there have been more ups than downs. I am happy to say that I am feeling great these days. I treat different symptoms as they come and have experimented with different medications for my POTS but I finally have my health and I have always had my happiness. I have returned to running, a hobby that at one time came easy and that I loved. I ran the Boston Marathon this past spring and can’t wait to get back out there to run again in 2014, dedicating every step to the victims and families of last years tragedy.

I would love for you all to come visit my blog at www.winningwithoutgluten.com. Share your thoughts and personal story, ask questions, and provide insights. I would love to know how you and/or a friend, teammates or co-worker are ‘winning without gluten.’ I know I am not alone when I saw that every story I come across is a daily inspiration to continue ‘winning.’ WWG is a work in progress and my number one goal is to make it a place where people like my 17-year old self can find support and inspiration. I truly believe that everything happens for a reason and being gluten free could be the best decision that we could have all made!

A big thanks to CeliacCorner for providing a place to share my story, and all of you for reading 🙂

Xo

Kristen

Thank you Kristen for sharing your story

of living (& winning!) with both Celiac & POTS!

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