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December 6, 2013

Celiac & POTS Story From Another Gfree Blogger

Greetings from another gluten free blogger! My name is Kristen Taylor and I was diagnosed with Celiac Disease in 2007. Sometimes it is hard to believe it has only been 6 years on a gluten free diet because I can’t imagine my life any other way. On the other hand, I remember the day I was diagnosed like it was yesterday. I was a sophomore in college at the University of North Carolina where I was playing lacrosse for both UNC and the USA team. I was ecstatic to be back at school for the fall semester and it seemed like everything was falling into place perfectly. That was until just getting out of bed became hard. I was exhausted, losing weight, nauseous, had painful headaches all day long, and began blacking out up to 15 times/day. What on earth was going on???



After a couple months of progressively feeling worse, my doctors ran a gamete of blood tests, one of which tested for Celiac Disease. The diagnosis was confirmed with a stomach endoscopy just a few days later. Alas, the answer to my declining health…and all I needed to do was change my diet?! Sweet. That was until I brought home my first load of gluten free groceries {that nearly doubled my weekly grocery budget} from the local natural food store and tried to make a peanut butter sandwich. It tasted like a 5lb weight of dry cardboard. I started to cry. More like sob. In the eyes of an 18-year old who was living in my little college bubble where my life revolved around going out, eating out, going to class, and playing lacrosse…. my life truly was over.

Adjusting to a gluten free lifestyle was a challenge. And in the southern state of North Carolina, make that a BIG challenge. The waitresses warned me of their gluten-ous baked potatoes all the while suggesting their deep fried hushpuppies as a wonderful option. Pre-game team meals were usually held at Italian restaurants on road trips, and let’s just say rice cakes and peanut butter get a little old when you have them meal after meal. None of my coaches or teammates knew was Celiac or Gluten was, but who could blame them – neither did I before I was diagnosed! They didn’t understand that they couldn’t use the same jar of peanut butter as me because their knives were cross contaminated once they slathered their PB onto a piece of whole wheat toast. Oh and tailgates…. those were just the worst. They went from my favorite part of game days to the hardest. It felt like torture to stand there eyeing down a table filled with foods you missed so dearly but knew you couldn’t eat.

I was gluten free but I still felt like crap, I was starting to believe it was all a hoax. Little did I know that in changing my diet so drastically, I was now missing out on so many different essential nutrients.  I had so much to learn, but no one to learn it from. 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 remember being so confused at the beginning and not knowing of any athletes out there with Celiac Disease. Doubt began to creep in and I wondered if maybe you couldn’t excel athletically on a gluten free diet. Not true.




Why I created Winning Without Gluten:
I created WWG as a place where I am able to share my gluten free findings, document my personal health journey, share recipes, feature athletes, and celebrate how far we as a gluten free community have come in a world surrounded by gluten! I would love for you all to come visit my blog at Winning Without Gluten, share your thoughts and reach out to me with any questions or comments you may have. Share with me your own personal story of how you are winning without gluten or one of a friend/family member/colleague. WWG is a work in progress and my number one goal is to make it a place where people like my 18-year old self can find support and inspiration. I truly believe that everything happens for a reason and being gluten free {whether a choice or a demand} could have been the best thing that could have ever happened to all of us!


***For all of you out there who did not feel instantaneously better on a gluten free diet, you are not alone. In fact, I continued things for me continued to get worse.  Within the year, I had lost all of my reactions, had immense swelling inside my head and nerve damage causing tingling and numbness in my hands and feet. My blackouts did not get any better and my fatigue continued to worsen. So now I was doing this whole gluten free thing and still feeling like crap? Is this a joke??! To avoid rambling for another 2 pages, I was diagnosed with POTS  {Postural Orthostatic Tachycardia Syndrome} in the spring of my junior year. }. I remember that day like it was yesterday, strapped to a tilting table for 3 hours. For so long 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. I thought that I was naive about Celiac up until this point but now what was this crazy POTS thing all about?! Well the answer to that is a blog entry completely in it’s own but I am happy to say that I am feeling great these days. I treat different symptoms as they come and have experimented with different medicines for my POTS but I finally have my health back and I will never, ever take that for granted.  

1 comments:

Anonymous said...

My 11 year old daughter was told she has Celiac disease, and she has been GF for about a year, with no stomach issues for the most part, but has dizziness, vertigo symptoms, headaches and out of life feelings with anxiety now. They mentioned POTS as she has orthostatic intolerance. She is having a really rough year right now, and we are doing the best we can to leave no stone unturned. Her diet is very limited and right now she is low in Vitamin D more than any other. She seems to also be sensitive to perfumes and soaps more than ever before. She still has two more tests, and could not "finish" the position change test due to feeling very dizzy upon sitting and standing. they also evaluated her balance and hearing. The only balance test she failed was the vertebral artery screen, (looking up to the left and right with neck extended). Her neck and head MRI was non conclusive. Any info you can share might help us/her. Thanks!

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