A decade of being a Celiac

Ten years is a long time. Ten years ago, I was finally diagnosed with Celiac disease. I was 16, just turning 17 and had been battling my body for a long time by that point. I was thrilled to have an answer, but I didn’t even know what Celiac was. Going on Yahoo, there was very little in the way of information.

I had been a really sick kid since my middle school years. I couldn’t eat food without being in terrible pain and would take an hour to eat a meal, as I was convinced if I ate slower, it would hurt less. I usually laid down midway through a meal so I could have the strength to keep eating. Looking back, I have no idea at all how I lived through that. There is a very very wide range of how symptomatic you are when you eat gluten. Some people don’t even notice- but it still damages their body. For me? I’m on the opposite spectrum. If I get gluten now, I’ll vomit for hours, get a fever, be in terrible stomach pain, not be able to think (and am not allowed to drive for 2 weeks afterwards), my muscles with hurt, I’m exhausted and I even have delusions (ask Natalie about the time the fan was trying to kill me).

But not only was it giving me horrible symtopms, it was destroying my body. My villi, the little finger-like tissue in your intestine that absorb your nutrition, were 95% gone when I had my biopsy. I wasn’t growing or going through puberty. I had little enamel on my teeth. And I was sooo skinny it hurts to look at middle school images of myself. I look like I’m starving because I was. My body was getting just 5% of whatever food I put in my body. And I was too exhausted and too afraid of pain to eat much.

So after 3 years of medical tests and countless doctors, I finally was told to eat gluten-free because I had Celiac disease. GREAT! I can totally do that….what’s gluten? Back in 2001, there was basically nothing for Celiacs. My mom was so confused with what was and wasn’t gluten, she threw every food item in our house out. And started slowly building up her knowledge and my food options. We even found a natural food store 1.5 hours away that carried rice crackers and bread!! I actually savored every little rice cracker bite even though it tasted like cardboard.

Now it’s 2011. Gluten free is trendy. There are whole bakeries in NYC that just have gluten free goodies. When I eat a cupcake, it tastes moist and sweet. I can’t remember what a normal cupcake tastes like anymore, but these taste amazing. I’m still shocked that when I go into a restraunt, people know what Celiac is.

And I want to give myself a freakin huge high five. In ten years I have never ever cheated. Something not many Celiacs can say. I have grown, gone through puberty, gained weight and finally, I eat without pain. I have helped dozens of newly diagnosed Celiacs learn about the billion details you need to think about but will one day become second nature. I’m a Celiac for life, I will not grow out of it or get better. But I’m happy with all the new foods, people I’ve met and things I have tried because I have Celiac disease.

My 21st Birthday eating my first gluten free cake


I can totally relate. Celiac is so similar to what I have- cyclical vomiting- that it was one of the first things I was tested for and ruled out. Thanks for putting this out there, Kelly!

Yup- now celiac is a very common thing to test for. When I finally got the test done 10 years ago, it was resident who suggested it as a ‘new weird’ test. They did it on a whim. And tada!