Celiac Disease

Celiac Disease is an autoimmune disorder where the body views gluten (a protein found in wheat, barley and rye) as an invader and so it sends antibodies to attack and kill. Except your body ends up doing damage to itself. It attacks and flattens the villi in your small intestine so that you are unable to correctly absorb nutrients and minerals from your food. The picture above was taken two weeks after I was first diagnosed in July 2006. I lost 30 pounds between January and June of that year without even trying. It was great! Okay, so maybe just being that thin was great. Having no energy, a foggy brain, chronic diarrhea, and other things happening was not so fun. Here’s a picture of me one month before on my 26th birthday:

At the time I couldn’t see how sickly I looked. It was amazing how much better I felt when I stopped eating gluten. The weird thing is that you don’t realize just how bad you were feeling until you start to get well. I was diagnosed in the doctor’s office. They handed me a bunch of papers that said what I could not eat and that was it. My mom and I went grocery shopping that night and I remember holding the stacks of paper in my hand and looking at the aisles of food that I could NOT EAT. Frustration abounded. The tears fell down my cheeks. How in the world was I expected to be able to eat? I felt so lost and alone. I felt like a freak. At this time you never heard the term Gluten Free. I had to go shopping at the local Wegmans where they had an organic section, 4′ of which was dedicated to gluten free products. The local hospital decided to see if there was interest in a Celiac Support Group for the community. I attended the first organizational meeting and have only missed a handful since then.

I am now the president of our support group. It’s a title which I wish I could relinquish, but what we do for the newly diagnosed and the gluten free community is too important to me. The group had faltered and was beginning to putter out. Our president at that time decided that it was time for her to step down, and that’s when I filled the spot. Since then I feel that we have made tremendous leaps and bounds. We created a new patient packet for the doctors to hand out when a person is diagnosed. We put information in there that we would have wanted to have when we were first diagnosed. Everything from safe ingredient lists to a sheet that tells you how to grocery shop for the first time. The group holds an annual picnic each summer where we all bring a dish to pass and there are so many different choices for us. It’s always a weird thing to look at a table of food and know that you can safely eat every single thing!

Our latest project was to send out letters to the general practitioners in our area. More people are being diagnosed in their offices. We don’t want these people to drop between the cracks and get lost. Also, a lot of the GPs haven’t a clue about the diet or how to answer the questions that their patients have. I was hoping that sending a letter to the doctors and letting them know that we are here would help. We can be a resource for not only the patients, but also the doctors. I let them know that we have a new patient packet and would be willing to give them a copy. I am going to consider this latest campaign to be a success. Why? Even though it was 5:30 a.m. when I received the call, one of the doctors contacted me to request a new patient packet. Yes! If we have helped only one person by sending out those letters then it was worth it.

Don’t feel bad for me. Yes, I have to be careful about what I eat every single day for the rest of my life. I am going to get glutened. I am going to make mistakes. But the best thing is that I am the one who controls my health. It’s not like cancer where you have to hope that it never comes back. As long as I stick to a strict gluten free diet then I will be healthy. After all, it’s been five years and look at the difference:

My challenge to you: go gluten free for one week. This means no crumbs, no cross contamination, no cheating. Or, just look in your cupboard and read the ingredients on the cans and boxes of food in there. How many times do you see wheat? Malt? Take a look some time. I think that you will be amazed at just how often you eat things with wheat in them and you don’t even realize it.

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