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My Story

MeNovember 24, 2008

My name is Sabrina, and my story begins in mid July 2008 when I went on a business trip to California for job training. At about 5:00am California time (7:00am home time) on the morning of July 16, 2008, I received a phone call from my gastroenterologist informing me that I tested positive for Celiac Sprue. In other words, I had Celiac disease. That moment changed my life forever.

At first I was in shock, but very quickly, that turned into tears as I talked to my mother on the phone. This wasn’t supposed to happen. Testing for this disease was supposed to be a precaution only. It was a worst case scenario – and there were a bunch of scenarios. I had digestion problems, yes, but there was no way I was actually going to have Celiac disease. After all, nobody else in my family has it, and it’s hereditary. (Actually, that’s only partially true. The predisposition to get Celiac disease is hereditary, but the disease itself requires a triggering event.) So how on earth could this be happening to me? There’s no answer to that question. It’s just life.

For the first month or two after I got diagnosed, I managed to stay fairly positive. I did tons of research, tried lots of new foods, and attempted to figure out which restaurants were safe for me to eat at. I learned that I’m not lactose intolerant (a common condition for Celiacs when they first get diagnosed – tends to go away as the intestine heals), and I stayed focused on what I could eat rather than what I couldn’t.

The last couple of months, however, have been tougher. It’s like the novelty of everything wore off and I’m left with the harsh reality of a super restricted diet. On the one hand, I’m finding more things that I like every day, but on the other, I continue to learn that foods that I thought were safe actually aren’t. The more I eat out, the more difficult it becomes for me to trust my food because despite my best efforts, I continue to have problems with cross contamination. I’m getting better at asking the right questions, but that leads to more and more places that I have to cross off of my “safe” list. In addition, I have to be the obnoxious girl who forces everybody to eat at expensive restaurants when they’d rather just go someplace quick and cheap. I feel terrible, but my only other option is to not eat out at all.

One of the hardest things I’ve had to deal with – and this is never going to change – is the fact that people forget. I can’t blame them. It’s not their job to remember that I can’t eat gluten. It’s my job and mine alone. But it still sucks. Somebody will try to make a nice gesture by offering me some delicious looking cookies, and I’ll have to politely remind them that I can’t eat those cookies. It ends up being awkward for both parties. They feel bad for forgetting, and I have to deal with bringing it up once again – not to mention avoiding the snack that I would so love to try. It’s just a very frustrating situation.

So anyway, I’ve created this blog as a place to post my thoughts and feelings as I do my best to cope with having Celiac disease. I’m hoping that by writing these things down, I can get them out of my head and for once think about something other than this disease. We’ll see how it goes…

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