Sue Shouldis

Topics discussed

Common childhood symptoms
Common Adult symptoms
Finding gluten-free food
Celiac e-Mail lists

Video Text

In adolescence I started having a lot of stomach pain. Debilitating, up-all-night, trying everything – I was taken to the doctor at that point. The stomach pain is like a war going on in there.

It seems that the stomach aches always appeared on Friday. On Friday, my father, who worked for General Motors got his paycheck. And on Friday he brought, maybe six beers. On Friday my mom and dad had a fight. My mother was a teetotaler. On Friday all of my classes had tests. And on Friday we also had a dance and a football game. So there were a lot of stressors on Friday. And of course I thought that some of the problem was a reaction to all that stress. I would always go to the dance or to the game and I would always be hurting. And I would always sit there and smile, even though I was in severe pain. There was one other factor on Friday. And that was, the cafeteria made cinnamon rolls with cherries, with cherry frosting on top. And I always had one.

When I was diagnosed, the doctor said, “There’s good news. You don’t have to take any medication. All you have to do is keep the gluten out of your diet.” And I said, “What is gluten?” The downside is the overwhelming learning curve of what it takes to eat gluten-free. I grieved over Twinkies and Snow Ball cakes and things that I normally wouldn’t allow myself to eat. I could walk through the bakery section at the food store and look at this – everything that I walked by and think, “I can never eat any of this again.” And you look at something as simple as “Natural Flavoring” and see it as the devil. You just are so – you actually start thinking about it constantly until you finally find the food that you can eat and find the sources for the food that you want and get a few recipes that work for you and then it starts to calm down and becomes easy.

Celiac email lists have been great because every question that you didn’t think to ask someone else will ask. And the answer will be forthcoming. And then someone will come on that’s new and needs guidance and they’ll give all these symptoms and you can help them. And I think that as more and more people become aware of this, it’s going to get easier and easier. And it’s not a bad thing. You get to be healthy again.

I’m Sue Shouldis. And I’m living my life with Celiac Disease.