In October of 2008, I was juggling a new day job at a law firm with evening theatre jobs as a stage manager. The previous year, I fully supported myself financially through stage management, costuming, and design work in numerous Chicago and Evanston theatres. My life had a pretty predictable schedule: day job, theatre, sleep, repeat. I was lucky to have two free hours on the weekends to do laundry and cook some pasta and frozen meat to supplement fast food and grab-and-go things from the grocery store. In the middle of October that year, I quickly started getting pain in my right abdomen. After a stressful visit to a city emergency room and a suburban hospital, I had an appendectomy Waking up after surgery, I felt great - the pain completely went away. The doctor gave me a short list of don'ts for how much I could carry (such as no more than 5 pounds for two weeks), told me not to exert myself, and sent me on my way. Around 48 hours after surgery, I was back in my stage blacks in the tech booth running a show. I marked on my calendar the six week "Completely Healed" date - on that day I could go back to my normal heavy-object lifting self and let the pesky appendix surgery be completely behind me. But as the weeks progressed, instead of healing, I plateaued. My abdomen hurt in a ne
w spot. I saw a gastroenterologist, fearful that I pulled a muscle by moving a heavy kitchen table that was part of the stage set (because I'm an idiot and innocently defied some of those weight restrictions). The doctor basically said that he couldn't tell anything was wrong and sent me on my way. I convinced myself that the abdominal and stomach pain was all in my head. Over the next year, my health started declining. Every few weeks, a new symptom would appear. Thankfully, some of these new symptoms had outward manifestations so I new I wasn't going crazy. Another gastro told me I had IBS and couldn't help me. I started to see another doctor. He ran a few tests, including blood work, stool samples, MRI, abdominal x-ray and probably a few more. He found something else wrong and treated that with antibiotics. Meanwhile, I started having difficulty breathing and found myself gasping for breath at night along with chest pains. I saw my family doctor, only told him of the chest problems, and he ran a test and discovered I had mitralvalve prolapse, a genetic problem that is extremely minor and forgettable. After seeing so many doctors without any solutions or answers to my growing laundry list of complaints (four gastros in around 15 months), I returned to one I saw years ago. All the other tests were run, my file that I carried with me with the results was getting thicker, and all that was left was a colonoscopy and upperendscopy. When I woke up from the procedure, I heard:
I took some biopsies to test for Celiac Disease.
Over twenty months of pain and doctor's visits, no one ever mentioned Celiac Disease or even asked about my diet. If they had, I would have told them that my diet was dairy, bread/pasta and meat. A week and a half later, I received a phone call:
You are negative for Celiac Disease.
I was actually praying for a Celiac diagnosis. It meant that my problem could be solved and I wouldn't have to search any more for answers. Searching was emotionally, mentally, physically and financially draining me. During my wait for the Celiac diagnosis, I started doing some simple Google searching. I learned that the diet was challenging, foods didn't taste good, and that a few people don't have Celiac disease but respond well to a gluten free diet. With nothing else to lose and a follow up visit in a few weeks, I decided to try this gluten free thing. I would go a week off gluten, a week on gluten, then tell the doctor my results. I was wavering on when to start, but after a large family party filled with sausages and burgers on thick rolls, pasta salads, and cake, I decided I was sick and tired of being sick and tired. I would start this experiment the next day.
I started with lunch on Monday, eating soup from Trader Joe's that was incidentally gluten free and vegan. I scrounged together meals, not knowing what I was doing and only buying one bag of gluten free pasta. By Friday, it was like a light switched on (and that light was bright!). I was back! My symptoms were 98% gone. I did a 180 and finally felt alive again.
Continuing with the experiment was scary. I knew how good I felt off gluten, I wasn't sure I wanted to go back on gluten. I splurged and bought my favorite dairy free ravioli and made myself a "back on gluten" meal with a soy ice cream sandwich for dessert. Within twenty minutes of starting this feast, my chest was growing tight, I found myself gasping for air, I wanted to take a nap, my stomach ached, and my laundry list of symptoms was back. I never even made it to the ice cream sandwich. I threw it away, permitted myself to cry for a few minutes, and started going gluten free full time.
My gastro was impressed when I returned for my follow up visit. At my last appointment, I was practically a zombie, barely able to exist in the moment with my body aching and my skin turning pale from weight loss and lack of nutrition. This time, I was full of life. The light returned in my eyes, I was gaining weight and I was bursting with well researched questions about what was next. My doctor wrote "gluten intolerance" in my chart, circled it, and I went on my way in June 2010.
People always apologize when they hear I am gluten free. Why? I have enough memories of being sick on gluten to know I have no interest in returning to that time in my life - even for a few days. Being gluten free has been a blessing for me. I have started cooking and find that pouring over new recipes is an exiciting new passtime for me. I have not let being gluten free slow me down in any way. Since my original diagnosis, I have attended weddings, dinner parties, cruises and more; I have eaten at some of Chicago's best restaurants from holes in the wall to those tied with a celebrity chef; I have explored farmer's markets and got to know the people behind my food; I have connected with this amazing gluten free online community; I have learned to make the most beautiful cakes; I have learned to listen to my body and am treating it with greater respect. And people want to feel sorry for me? I don't think so. I am loving this diet and the positive influences it has had on my life.
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