Tuesday, July 20, 2010

I am so stupid.

My mom and I spent hours in the kitchen this afternoon. My best friend was coming over for dinner and I wanted to make her something special that we could all enjoy.  So I flipped through “The Flying Apron’s Gluten Free and Vegan Baking Book” to find the winning recipe: Italian Mushroom Apron Pockets. Delicious. We made our own gluten free, vegan dough; we sautéed onions, peppers, garlic, mushrooms, sundried tomatoes, beans and spices in olive oil; we formed the dough into rounds filling each with marinara sauce and the vegetable mixture; we turned each round into a beautiful pockets and brushed the tops with oil and oregano; then my eyes caught a little green label on the back of the marinara sauce jar. Allergens: Contains Milk.

My heart sunk. How could I have missed this?
At first I denied that there was anything wrong. I can try and eat it right? It’s only a tiny bit of Parmesan. How bad could it be? But deep down I knew I shouldn’t test it. I have finally started feeling better. I would just make myself a leftover chicken taco.

I guess I should start at the beginning.
I have been sick all year. Since I started my sophomore year of college I have lost twenty pounds, dropping from 102 to 82 pounds in seven months. I was constantly nauseous, achy and short of breath and I developed an itchy red rash all over my body. I was depressed all the time and felt so sluggish, like I was walking into a windstorm. Everything seemed like a chore. The only thing I enjoyed was writing music and even that felt harder than usual. I just couldn’t concentrate on anything.

My parents said it was stress, probably related to my scoliosis (I got a back brace at the start of this year) but I knew my back couldn’t cause this. Something was wrong. I thought I was losing my mind.

Through trail and error I began to realize that my symptoms were food related. At first I thought I was lactose intolerant so I cut out all lactose from my diet, but after a reaction to some lactose free rice cheese that contained casein (a protein found in milk) I discovered that it must be casein intolerance. I stopped consuming anything that contained even trace amounts of casein and immediately started feeling better but was still not feeling one hundred percent. A few weeks later I had a reaction to soy sauce. At first I thought there might be milk in the caramel coloring but after a reaction to some Italian bread a few days later I suspected gluten. I have since removed all gluten from my diet and that has seemed to help a lot. My stomach symptoms have cleared up, my rash is gone and I finally have energy again. Of course there have been accidental cross contaminations but on the whole I am much better and have started gaining weight again.

I am still in the process of trying to get some sort of a diagnosis. I think I have celiac’s disease but so far all of the tests have come back negative. I’ve had 18 vials of blood drawn in the past month and still no definite results. After going on a two-week gluten challenge (I had to consume gluten again for the tests to be accurate) I had an upper endoscopy but that also showed nothing. It’s pretty frustrating sometimes but I am certain that gluten and casein are the problem; the doctors just haven’t found it yet.
I guess it doesn’t really matter as long as the diet is working. I am getting stronger and feeling better and that is all that matters. I don’t need to know what to call my problem as long as I can solve it.

I have started this blog to share my stories and thoughts as I go through the process of being diagnosed. I will also be posting allergy-friendly recipes, talking about general everyday life things and linking to my music. I am a music composition major in college and through all of this music has been the only thing that has always brought me peace and calmness. It is my stability, my love, my way of expressing myself and reaching out to other people. I hope this blog will inspire people who are struggling to keep holding onto their passion through hard times. Things will get better, they are already starting to. 

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