My Diagnosis of Celiac Disease

The journey to discovering my Celiac Disease started about three years ago. And trust me, it was a long and complicated one. It all started when I noticed abnormal amounts of hair loss, so I went to the doctor. He ran some blood tests and found that my iron count was low. In other words, I was anemic. The doctor told me to take three iron pills a day until I started feeling better, and he sent me on my way. About a year later, I had backed off the amounts of iron I was taking (mostly because I was lazy and no one was there to make me take them).

However, I started to experience symptoms when I swam. I am a Division I swimmer in college, and I do not like having anything hurt my performance. After a hard set or race, I felt weak. It was not a weak feeling that comes from being tired, because I have experienced that feeling many times before. It was much worse. The symptom that stood out to me the most was when I experienced blurry vision after my races. At the worst times, I could not make out peoples faces who were standing right in front of me. I also could not pay attention to what people where saying to me. The best way to describe this feeling was ‘fuzzy.’ I knew something was not right.

This time, I decided to go to my athletic trainer and tell her about my symptoms. She sent me to the university’s athletic doctor, and he ran some more blood tests. Again, the tests showed I had low iron. The doctor put me on two iron pills a day, and told me to come back in a few months for follow up tests. When I went back, my iron was still low, and I was still experiencing the same symptoms. Again, he told me to take three iron pills a day and sent me to a nutritionist to make sure I was eating the right food to allow proper absorption. I followed all the rules set by the nutritionist and took my iron pills everyday, but months later I was still experiencing the same symptoms.

When I went back to the athletic doctor, my iron had improved, but my ferritin (stored iron) count was still extremely low. He said now that my iron was back to the low range of normal, my swimming performance should be fine. It was not fine. I still felt weird after hard sets and races, and I knew something was wrong. I was frustrated that the doctor was telling me everything would be okay if I continued to take my iron pills daily. Obviously, I was taking my iron pills, and my ferritin levels were not improving. The doctor even suggested sending me to a sports therapist to talk about overcoming the fear of getting weak I was having during sets. He felt the sports therapist would be able reduce the ‘fuzzy’ symptoms I was experiencing. I was livid, because I knew that what I experiencing was not in my head.

After months of frustration, my mom called the athletic doctor to tell him that he needed to do something more, because my symptoms were not going away. He finally agreed to send me to a Hematologists (blood doctor) to see why my ferritin levels were not improving. The first thing the Hematologist decided to test for was Celiac Disease. He ran loads of blood tests, and the results came back positive for Celiac. Then, they sent me to a Gastroenterologist to perform an Endoscopy to confirm the diagnosis. Minutes after the Endoscopy, the doctor confirmed my fears. I had Celiac Disease, and I needed to start a gluten-free diet as soon as possible.

Because I have been an athlete my entire life, I have definitely developed a love for food. My diagnosis with Celiac came as a huge disappointment. I love pasta, bread, cookies, cake, pancakes and everything else gluten-filled. When the doctor said it was time to cut out gluten completely (for the rest of my life), I stood in front of my cabinet staring at all the food that I could no longer eat wondering where to go from there. I used to eat cereal or oatmeal for breakfast, a sandwich and chips for lunch, granola bars for snack, and pasta for dinner. All of these foods contain gluten, so things are definitely going to change for me. The first few days I began eating gluten-free I was starving. I had salad for lunch and chicken with veggies for dinner. The rest of the day I was extremely hungry and lost.

Luckily, my parents went to Trader Joes and brought me lots of gluten-free substitutes. I am excited to start trying these new foods and sharing what I think with my readers! Also, I am only four days into being gluten-free, and I already feel better. I feel more awake and alert. I guess this diagnosis is not all bad!


8 responses

  1. I love you Brynne and I’m so happy that you finally got to the truth about what was making you feel so bad. Even though it sucks.. you’ll get through it. You’re the toughest girl I know.

  2. What an amazing story Brynne. I can only imagine the frustration you must have been feeling the last few years. For you to go thru all that, and still be able to manage your studies and the grueling swim schedule you have to endure is a true testament of your character. Not knowing had to be the hard part. You’ve got that down now so hang in there ! Things will get better.
    David (Ali’s uncle)

  3. Brynne,

    That is crazy the amount of time it took to figure all of that out! I can only imagine how you were feeling after going from doctor to doctor and being told the same things over and over! That is the worst feeling ever! My godmother “Aunt Diana” actually has Celiac Disease it took her close to twice the time it took the doctors to find the disease in you! She is in her 50’s so obviously the medical field has advanced since then! If you’d like me to get some of her recipes from her I’m sure she wouldn’t mind passing them along to a fellow gluten- free eater! She literally makes two separate meals every night for herself and her husband. But you do what you gotta do right? 🙂 Good luck with everything though! Glad things are going better for you!

  4. Hang in there GFHungrygirl!! My diagnosis was almost word for word what you describe. When I started passing out in high school, doctors noticed that I was dangerously anemic. After upping my iron intake over and over again I was diagnosed with Celiac. The first few months were really hard. Now, though, 9 years later, I am healthy and eat gluten free versions of pretty much everything I ate before! My best bit of advice to you would be to get in touch with some other gf people around you and utilize their resources- I ate crappy gf bread for years before I found Schars at Wegmans and Whole Food, and so now I tell everyone. There’s so many blogs and websites out there- you aren’t alone and it will get better! Best of luck!

    • Hey Emily,
      I finally ran across some Schars bread at Walmart! I must say that I was very impressed. Thanks for the tip!

  5. Thank you all for the support. Stay tuned for updates on my progress! And Kelsey and Emily, I would love any advice you can pass along 🙂 Everyday, I learn something new.

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