Ellen WIlcox

Topics discussed

Common childhood symptoms
Misdiagnoses
Finding a doctor who understands Celiac Disease
Blood tests

Video Text

My very first symptom that I now look back and realize what it was, was fatigue. Basically, whenever I would sit down, and have to just be there and listen to a teacher or somebody speaking, I would be overcome with a sense of drowsiness that I just couldn’t fight and I would be out. And I would find that I would have to go up to teachers and just tell them about myself and let them know that I have this problem and “please don’t be offended” and promise them that I’d get good grades.

I did have an embarrassing moment in high school where a boy who liked me came up to talk to me and said, “Do you know” I think he said, “You’re so cute. Do you know when you fall asleep in French class, your mouth falls open?” And I just wanted to die!

The first time I went to see a doctor because of the fatigue was shortly after my first baby was born. So I was in my late 20s at that point, and what triggered that was that I realized, as I was driving to work each day – and I had a very long boring commute on one long road – that I was fighting the drowsiness all the way to work.

It happens so many times that if a doctor isn’t particularly educated about Celiac Disease that they will dismiss your concerns. And I tell all my friends: If they are not able to persuade their doctor to test for it, then they just need to see another doctor.

I actually went to a sleep doctor who thought it sounded like I had narcolepsy. And I was so relieved to think, “We found that it was something.” And I went through the test they do, which is a polysomnograph, where they attach all the wires to your head and you have to sleep in the lab, and when I came back for the results, they were very happy to tell me that I didn’t have narcolepsy, but I burst into tears. Because I just so wanted it to be something I could fix.

My best advice and I tell this to everybody I talk to is: If you have any symptoms of any other disease to get tested for Celiac Disease. Because it can be associated with it. There doesn’t seem to be – at least at that point – doctors who were going to look at the whole picture. So when I went to the sleep doctor about my fatigue and they told me “Well it’s not narcolepsy,” they said that as “Good bye. Nice to meet you. Go on with your life, nice to have known you.” Nobody was interested in finding out what it might be.

I also tell my friends to make sure that their doctor orders the whole panel of blood screening tests. Because some doctors just order one and in my case, I was negative on that one that doctors often order. I feel that I have much more energy now. I’m not falling asleep uncontrollably at meetings. I do not walk around feeling nauseous all the time. I joined a gym and am working out and feel so much stronger and so much happier.

But after six months on the diet, people I’ve barely knew started to come up to me and telling me how much better I looked now compared to six months ago and that really keeps me going and I think it’s real evidence that good is happening. And I definitely feel so much better.

I’m Ellen Wilcox and I’m living my life with Celiac Disease.