Allison Herwitt

Topics discussed

Misdiagnoses
Finding a doctor who understands Celiac Disease

Video Text

This is not something that I’ve had all my life. I had a perfectly normal childhood, in terms of being able to eat anything and everything. It wasn’t until my 20s that I actually – I guess had my “trigger” is what the doctors called it – where I got sick for the first time. In my late 20s I started to have a lot of fatigue. Constipation, diarrhea, it would go back and forth between the constipation and the diarrhea. When I would have the diarrhea, I would lose up to 16 pounds. I was constantly going to the doctor – sometime I would have joint pain, but not that often.

I went to gastroenterologists. They did lots of tests on me, they thought maybe I had Giardia. They thought maybe I had Irritable Bowel Syndrome. And they didn’t know and they just went from one blood test, one colonoscopy, one endoscopy to another. They could never pinpoint what was wrong with me, but I kept losing weight. It took me 11 years to get properly diagnosed. So over that 11 year period I was in and out of doctor’s offices. From one gastro. doctor to the next. And some would take the time to listen to my story, some would, you know have me lay down and they would push around my abdomen and say “Oh yes, you’re very distended. Oh yes” – if I was in my constipation mode, “I can feel you’re very constipated. Here’s some medication to help you.”

Finally, after almost 11 years, I went to Georgetown Hospital in Washington, DC and met with Dr. Robin Chutkin who – I was lucky enough – she had studied under another doctor, Dr. Peter Green who was a specialist in Celiac Disease and so she knew something of the disease before I even walked in the door. I walked in, she took one look at me – it was during one of my bouts of diarrhea so I had lost a lot of weight, I looked very gaunt, I had dark circles under my eyes. I was feeling sick all the time, lost a lot of weight. And she said, “You don’t look like you have Irritable Bowel Syndrome or Disease, you look like your body’s not processing your food properly. And I think I have some ideas about maybe what’s wrong with you.”

So after I was positively diagnosed with Celiac Disease, it felt, relief. I mean it was an amazing – just – validation that: Yes, in fact there was something that was really wrong with you. I feel good. And every time I’m thinking,” Man a cold beer and a great slice of pizza would be just so awesome” I think about how I felt for 11 years and the urge to cheat completely goes away.

I’m Allison Herwitt and I’m living my life with Celiac Disease.