Katie Barrett

Topics discussed

Common Childhood Symptoms
Misdiagnoses
Finding a doctor who understands Celiac Disease

Video Text

Every few years I would show up with this rash of all new symptoms that were all completely disconnected and no one could put them together. At first a lot of stomach pain. Bloating. I wouldn't eat, it hurt that bad. Knee problems, all kinds of random knee problems. Heart problems. Lung problems. I was even diagnosed with asthma at one point.

Then it got to the really – I had a really bad stomach flu and then after that diarrhea, very bad stomach pain. Bloating. Curled up in the fetal position. Dehydration, headaches, my eyes would kind of roll back in my head. That was mainly it. So I went back and forth from college to home – which was a 2 ½ hour drive – for tests constantly and no one could ever figure out; I had every kind of work up known to man and we couldn’t figure it out.

Then they would tell me “Oh” – you know – “You’re Type A” – you know – “Stressed personality” and “Take a Pepsid, reduce your stress and you’ll be fine” but that obviously didn’t work. I can’t even tell you how many doctors just said “Oh you’re just being dramatic.” And I was even taken off coffee, caffeine, spicy foods, greasy food, acidic. Tomatoes, oranges, anything you can imagine. And definitely – and I think it was suggested at one point – which I’ve heard from many Celiacs – that I go to a psychologist, or someone to talk about all of these issues. And I’ve heard so many people say the same thing.

I could barely make it through the day. I was then getting in trouble with my boss because I wasn’t producing, obviously enough. And I would just go home at night and lie there in the fetal position in total pain. I just remember some mornings, like I didn’t have the energy to get up.

And I went to my – and this was at the – that awkward transition time when you’re out of college, so you don’t see you pediatrician anymore, but I hadn’t really established a fulltime internal medicine adult doctor ‘cause I’d been away at college. So I finally did, and she wasn’t quite sure and she said, “Well next time maybe we’ll send you to a GI doctor. I think he was calling me back to tell me the tests came back positive and he was very apologetic and upset and serious. And I was like “Woo-hoo! We finally know what this is!” you know? Kind of excited by it. And then of course he’s like “I think it’s something in flour.” And that was all he was able to tell me. Literally that there was a test that was positive, he thinks it’s flour and he has me scheduled for a dietician appointment tomorrow. That was all it got.

My advice to someone is: Do not give up. Be persistent. Make sure that every doctor you see knows every symptom that you have. Write them down. Write down what you eat. Write down when you get sick. Write down exactly how you’re getting sick, the timing, the intensity, write it down. But also, learn a little bit about Celiac Disease so that if the doctor doesn’t know about it – which chances are they won’t – you can tell them a little bit about it and gently suggest that they test you for this.

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