Katie Barrett

Topics discussed:

Common childhood symptoms
Adult symptoms
Blood tests

Video Text

The first time – now looking back – we had no idea at the time what it really was, but looking back now, we think that at 9 years old – that’s when I first started showing my very first symptoms. I had terrible stomach pain and was extremely bloated and basically just stopped eating. And my mom thought I was anorexic. But it’s just that it hurt too much to eat.

So then it kind of disappeared for a while but I was just very, very thin and pasty white. You look back at pictures of me now and you can see the bones, like sticking out of my legs and stuff. And I have an identical twin and we look a lot alike and – obviously we’re nearly the same size – and she was thin, but I was – you could tell there was something wrong, you know? Now looking back.

Then in college I started having the cardio and pulmonary problems, and then later in college – I think it was my senior year in college – I had a really bad stomach flu. And after that, I just never was the same again. I had diarrhea almost – pretty much all the time for the next, about 2 years.

I was just a few months out of college, I was in a brand new job, trying to impress my new employer, living in downtown Chicago with two of my college roommates who were totally clueless and had no idea anything was wrong or would kind of be “Why are you sleeping late again, you’re so lazy”-type thing. And I was pretty much still having diarrhea everyday. Trying to maintain this kind of high stress job that was brand new and I was down to eating dry toast – which was the absolute wrong thing – and drinking those Ensure products and I would take the El to work everyday, I would vomit up the Ensure by the time I got off the train and then would walk to work and was barely making it through maybe half days of work.

Things kept getting worse. I was having more and more diarrhea, getting more bloated and more pain. You look at pictures of me around then and I was absolutely swollen up like the marshmallow man. And one day at work I actually went to the bathroom and there was all kinds of blood. And that’s finally when I said “I’m going to the doctor.”

He did every test known to man except for the small bowel biopsy. We did the stomach biopsy, the colonoscopy, the small bowel x-ray, you name it I had it. And then by this point I had lost about 25 pounds – was eating the toast, drinking the Ensure and my father was wheeling me in a wheelchair out of the hospital ‘cause I was so weak. And the doctor said, “Wait, there’s one more thing that I haven’t tested for. I’m sure you probably don’t have it. But let’s just do a blood test to find out. Just in case.” And that was the test for Celiac Disease. And that came back positive. I wasn’t like “Yeah, I’ve got a disease.” It was “Yeah, we know what this is.” ‘Cause it’s the not-knowing that absolutely makes you crazy. And you know what? There’s millions of us that have this thing and we’re doing just fine. So you’ll do just fine too.

I’m Katie Barrett and I’m living my life with Celiac Disease.