Editor’s Note: This is part two in a three part series.
I spent five years (after diagnosis) in a constant state of panic. I would lose weight and gain energy, only to find myself gaining weight and losing energy months later as my body fought against the medication. I was terrified to go back to that girl that was weak and dying. I was attempting to survive on just a small piece of the puzzle. The doctors had only touched the surface. We just didn’t know it.
Quite by accident, the Fall of 2013 became life changing. This was not due to doctors and tests, but instead, because of a little girl’s tummy ache and a mother’s desperation to live a real life instead of one filled with sickness and fear. I was through surviving my life, it was time to fight to live it. During this time, my 10 year old had been complaining of stomach pains. Tests were revealing nothing. I had a friend that was a celiac tell me that gluten could be the problem. She suggested we cut it out to see what would happen. What did I have to lose? Two things were the catalyst to finding my diagnosis. I began running, and my family went gluten free and organic in an attempt to fix Keely’s tummy.
Going gluten free and organic is neither easy nor cheap. Organic milk was the first change. I had to repeatedly tell the girls that it was healthier because the cows were not given hormone injections to create more milk. I explained how hormones came to us in the milk we drank. One night, while watching TV, a father was telling a friend he did not want his teenage daughter going on a group date. The friend told him to let her have some control over her life. He replied that he knew what was in control at that age – hormones. My youngest immediately spoke up saying, “not if you don’t drink them!” It was hilarious. And though she misunderstood, I knew she was listening as I explained why each change was taking place in our home.
As we all slowly adjusted to eating gluten free and organic, I began learning how to run. A friend had told me about the couch to 5k program and I decided to try it. I’ll never forget my first day out, I could barely run a block. It was so demoralizing. I wanted to give up, but something inside refused to stop. Two weeks later I was run/walking, and by mile 1-1/2, my heels were bleeding. I took off my shoes and limped back to my house. It was a long, painful walk. I remember hoping one of my friends would drive by so I could catch a ride home. I drove to the running store that day and got fitted for my first real pair of running shoes. Then I immediately went back out to finish my run.
At 6 weeks I was outrunning the couch to 5k program and running 6 days a week. I was eating clean, dropping weight, and feeling great. I had just visited my endocrinologist for the quarterly visit. He called me in a panic wanting to know how I felt. What color is your skin? Do you feel energetic? Any sickness? Pain? I was confused, I felt amazing. He had me go to the bathroom to check the whites of my eyes. They were fine. He told me that my blood work had come back showing severe liver damage. I had to come in immediately for a redraw. The results were the same the second time around, but I looked and felt great. He decided to recheck in a week. For months, I went in biweekly for blood work. My numbers progressively got better, leaving my doctor guessing that my body was shocked by all of the changes that had been made.
I lost 36 pounds and ran my first half marathon 3 months after I started running and changed my diet. It was a hilly half, and I finished in 2:33:01. I was thrilled! I was also incredibly sore and swore I would never run a marathon at that point. How little I knew myself then. I ran my first full 7 months later, the Hatfield and McCoy, one of the 15 toughest fulls in the United States. I went on to run my first ultra within the first year of running. It was the First Day of Winter 50k. By then, I was keeping the weight off, and had energy, but I was struggling to keep the weight under control. I was still under the wrong diagnosis.
During this time of change, I was researching everything about celiacs. I joined several groups on Facebook. Thanks to Facebook making suggestions, I discovered a Hashimotos Thyroiditis group. The more I read, the more I realized this could be me! I started getting excited. For the first time in eight years, I may have a real answer.
I took the family off of gluten to see what would happen. Keely did not get sick. Later, we would discover that stress was the cause of Keely’s tummy aches. Surprisingly, I did get sick. Very sick. I decided at that point I had enough leads to go in for more tests. I made an appointment with an endocrinologist at the Cleveland Clinic. I felt it was worth the 5 hour drive to see doctors at one of the top hospitals. I had wasted enough of my life being sick, I was willing to pay any price and drive any distance for my health.
The Cleveland Clinic confirmed my suspicions. After 8 years, I finally had a diagnosis. Though there was a lot going on, I was relieved. I was a celiac, lactose intolerant, and had Hashimotos Thyroiditis. I had already learned some things about my conditions, but there was so much more to learn. I was ready to get started. I could finally begin to heal. It was time to stop surviving and start living.