I have a Japanese kanji on my arm. It means “hope”. But in October 2010, there was not a spark of hope left in my life. I look back today, and my heart still hurts because everything has changed. No, I’m not overreacting. Before you roll your eyes, listen to my story.
I have always loved every aspect of the culinary arts, but I truly enjoy making desserts. My dream was to open my own bakery. I had the name picked out, the uniform, and the theme… even the layout! On a daily basis, I would come up with different flavors for my seasonal cupcake line, or a fusion idea for a new cookie. Making desserts became my escape for the strange barrage of… issues I started having in early 2010.
In hindsight, I think these problems were always there, just not as bad. What kind of things? Well, for one, I had scarecrow hair. It was dry, frizzy and thin. Short pieces stuck up all over my head. I cut it, hoping the condition would improve, but no such luck. Then it started to fall out.
If the scarecrow texture and hair loss wasn’t bad enough, my skin began to change. I was turning into a crocodile. I was itchy and scaly and red. My face was the worst. Pimples upon pimples. My face was always red and peeling. Face wash, toner and lotion failed to help. And it hurt! Clothes hurt my skin. The sun touching my face burned. And I constantly broke out in hives.
I figured the hair and skin problems were stress. And the hives? Well, after having my daughter I had a sudden surge of allergies, which I attributed to the difficult pregnancy and delivery. I had become allergic to pretty much all animals. My eyes would swell up just walking into a pet store. I also became allergic to a wool jacket, and strangely, to odors. If I smelled cigarette smoke or paint, yes, really random things, I would get hives and an itchy throat.
By summer of 2010, I noticed I was eating more. I was STARVING all the time. I could eat a box of crackers and still be hungry. Strangely, I wasn’t gaining weight. My stomach was hurting all the time, especially at night. I always felt like if I puked, I would feel better, but I never puked.
Then, the exhaustion set in. It was awful. I felt like I was underwater. It hurt to get out of bed. But it hurt to sleep. Everything was just painful. So I threw myself into baking.
It was fabulous to bake. And it was fabulous to eat too. I was baking daily, but I still felt like I was dying. My “escape” wasn’t working.
Then, the pain turned really excruciating. Whenever I ate, it felt like someone was dragging a rusty strip of razor wire through my body. There was blood, but I won’t go anymore into that. After a trip to remote Alaska, things were so bad, I cried when I was alone, and I cried myself to sleep. I just couldn’t pretend I was strong anymore.
I went to the doctor, and told her I thought maybe I had a stomach virus, and asked if she could prescribe something for my allergies. When I explained my symptoms, she immediately advised a blood test for Celiacs. Celiacs? Never even heard of it. But what you don’t know CAN hurt you. And badly. My doctor explained my body couldn’t handle the gluten in the foods I was eating. My body stopped absorbing nutrients from what I ate, which is why I was always hungry but didn’t gain weight. My hair and skin took a toll because of the nutrient deficiently, and I was tired because my body wasn’t getting anything it needed to operate. She explained these “allergies” were not real allergies, but a reaction a healthy body can handle without us noticing. She told me to cut gluten out of my diet to see how I felt. So for three weeks, I stopped eating anything I thought had gluten. I felt better pretty quickly. Because my health changed so drastically, I didn’t have the biopsy of my intestines taken (I guess that is a more accurate way than the blood test to check for Celiacs). I also found out I had become lactose intolerant so I had to cut out dairy.
I was devastated… I was heartbroken. How could I open a bakery if I couldn’t eat gluten or dairy??? So the diet didn’t last… it was so hard to give up all the dessert and baked goods! I decided to cut back on the baking to only a few times a month. But as any good cook knows, you HAVE to taste your cooking to determine what changes to make!
So I’ve been grazing… and I suffer the consequences. It’s a war, lasting months. I win some battles and feel almost normal, but other times, my body screams for a day that is pain free. And it really doesn’t help when you have a colleague telling you constantly to kill yourself because it sucks to live on a gluten free diet. Seriously, yes. No compassion when I obviously am having issues adapting.
Then, June 2011. The Three Baron’s Renaissance Fair. I hosted a booth for the first time. I baked cookies and made cake pops, all chock full of wonderful gluten. Luckily there were no leftovers, but the damage is done. The razor pain is back, my hair is thin, and my skin is awful! Is it worth it???
My dreams shattered, and with no one to understand, I wondered why I ever got the stupid "hope" tattoo. There is no hope. Nothing will EVER make it possible for me to eat gluten. I hurt to tell myself that I was stuck eating gross gluten free rice cakey dry nasty food. But wait a damn minute!
I have taken a stand. I can’t graze on things, hoping just a little is ok. It’s not. I have to accept that gluten is bad for me. But I am a damn strong person, and I don’t give up. I can't give up. I have a permanent reminder on my arm that there is always hope, even if for a moment, we forget. I have a new goal. A NEW DREAM. I will create magical meals and decadent desserts, all gluten free. I will not suffer, I will indulge! And I will indulge, gluten free!