Tuesday April 13, 2010

This was the day I found out I had Celiac Disease.

I have been having stomach problems for about 12 years. It started shortly after Russ and I got married. So I often blame him. :) I can remember laying on the living room floor, with my knees curled up to my chest and being in so much pain it was hard to breathe. I remember being on a walk with Russ and our dog and it hit me like a truck. I bent over and couldn't even stand up straight the rest of the way home. I had NO idea what was going on.

I started watching what I ate and drank. I didn't ever see a strong pattern. But about two years later, when I was 24, a teacher I worked with told me she was lactose intolerant. She had me experiment by not eating any dairy for a week and see how I felt. I felt great! After reading tons of books on lactose intolerance and seeing my doctor, I had figured it out!

But still, on and off I would have stomach problems. There were times my stomach would bloat up so big and it hurt so bad that even loose sweat pants hurt to have on. I have kept countless food diaries and never saw anything that I could point my finger to. So I just thought I would have to stay away from dairy and carbonated drinks for the rest of my life. But that didn't always work either.

Just in the last 6 months, my stomach has gotten even worse. It would hurt so bad and have such sharp stabbing pains, that I would have my loosest pants on, legs pulled up to my chest, heating pad on my stomach, have taken every type of medicine I could and I would be sweating and crying it hurt so bad. It even woke me up from sleep many nights.

I couldn't take it any more. I knew SOMETHING had to be wrong. So I went to a gastroenterologist. He did a scope and a colonoscopy. I was thrilled! No really, I was! I just wanted an answer.

When I woke up, I was told I had IBS. Ok, there's an answer. But what does that mean? I have to stay away from caffeine and stress? Um, really? That's IT? There's got to be more. So for 3 weeks after the diagnosis, I tried REALLY hard to watch my diet and have no caffeine (except for a little chocolate). It wasn't working. My stomach STILL hurt.

Not only does my stomach hurt, but it sucks the energy out of me. It literally feels like all of my energy is in my stomach. I hate this. This isn't me. I'm not a lazy person, but there are just days it is so difficult to get up and get motivated to do ANYTHING.

So on Tuesday, I went back for my follow up appt. When the doctor walked in, he handed me a piece of paper that had a few big 'ol long fancy words on it: Duodenal Intraepithelial Lymphocytosis. Um, ok, what does that mean? He told me it's a big fancy word for Celiac Disease. My jaw dropped, I was in shock. I REALLY could NOT believe it. I think I asked him 3 or 4 times if he was sure. He was.

So he started to explain everything to me. But I already knew about it. Not a lot, I admit. But my friend, Todd was diagnosed with this about 5 years ago. So I have heard Todd and Pam talk about it on and off over the years. So thanks to them, I wasn't TOTALLY in the dark about this disease.

Once I left the office, I sat in my car, called Russ and started crying. I felt as though I was looking at a mountain that I have to climb with very little climbing gear.

I got online and read everything I could. I called Pam. Thank you Pam! I know I will be calling you and Todd a LOT over the coming months. God has blessed me for not having to go through this alone. Russ has been awesome. He has said we all can go gluten free until I grasp this all better.

It's not going to be easy. I feel like my head is spinning a little from all of the information I have learned in just 4 short days. And from all of the info I STILL have to learn. I am a little in Celiac overload, but I am handling it.

Right away I went to the store and bought as many things I could that said "Gluten-free". So far I've made chocolate chip cookies. (you can see the importance of them in my life!) They were really good! Russ said he even liked them better than the other kind I make. And last night I made pizza. Wow! It was awesome. Really. I can't wait to have left overs for lunch today.

We are going today to the health food store to see what they have. Pam told me Target has a great selection of gluten-free foods too. AND we are going to go buy a bread maker. If I ever want bread again, I have to make it.

I can do this! It's a challenge for me, but it will be a great thing when my stomach doesn't hurt and I finally have energy to be the "fun mom" I so badly want to be!

So this blog is going to be about my journey through this. I wanted to start this for my family more than anything. I know many have heard about Celiac disease, but don't know a lot about it. So I hope to use this to inform others, to gripe about my struggles and a place to put my successes.