Sue Shouldis

Topics discussed

Common Adult symptoms
Finding gluten-free food

Video Text

During the years when I was rearing my children, purposely – I was a bit of a back-to-the-earth-er and I tried to cook healthy for them. I didn’t make a lot of sugary treats and tried to be a good mother. And therefore, I didn’t eat many of those things myself. And my husband passed away, my children grew up and I remarried. And Ted loved desserts. And I baked pies and I made cookies and I made peanut butter cakes with gooey frosting. And all the wonderful things that made me so sick. And my pain came back. The pain that I had as a teenager came back with a vengeance.

And I got weak and started losing my ability to think and concentrate. My memory was going. I could remember to turn the stove off. I would go to sleep in traffic. And eventually it came to the point where I started losing weight – about two pounds a month. So all of these symptoms directly point to Celiac. But nobody put them all together until I was so weak, I couldn’t climb a flight of stairs and I was basically losing my ability to cope.

And my doctor – in the meantime I moved to Maryland, because I lost my job because of the disease. I couldn’t do it anymore. And I went to work at N.I.H. I lost that job. Because I couldn’t keep anything straight in my head. So I went to work for a doctor. And I lost that job. And I was very, very frightened. I thought that I was headed for Alzheimer’s, I thought – I thought my life was over. And I think that if I hadn’t been diagnosed, I wouldn’t have made it much longer in the condition I was in.

For a band new person – newly diagnosed with Celiac Disease, I think the important thing is to just stay calm and just educate, educate, educate yourself. You really can’t expect the doctor to tell you anything. He’s just going to say “Go gluten-free” and he’s going to think that’s easy because he’s never done it. I’ve learned to make a lot of good things. And I’ve managed to gain about 30 pounds doing it.

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