Monday, August 17, 2009

How it all started ...

After finding out about Gluten Free Girl and becoming a regular reader of her blog, I have decided to try a hand at a gluten free blog as well. This and perhaps a few other entries are more background information to start the flow … but I hope to focus on food that inspires and have tips, tricks and recipes that I’ve begun to gather over the few years I’ve been diagnosed. I found reading other peoples stories of the trials and tribulations of living and eating gluten free helped me start on my path. I would like to do the same for you.

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The story of how I ended up living gluten free is a bit of a long one, as I suspect it is for most of you, who had their lives changed forever. Today, forever doesn’t feel so bad … but it was a scary thought initially.

It all started about 15-20 years ago, when I was still in high school. I remember clearly reading my Moms Readers Digest on the couch with the sun filtering through the windows. There was an article in it about Irritable Bowel Syndrome (IBS) … something about suffering diarrhea any time you get stressed out. I told my Mom that I thought I had IBS because many of the symptoms fit me. Any time I was nervous or excited about something I either got a huge migraine or was sitting on the toilet all day. With the article in hand, I went to the doctors.

Mind you, this was a small town doctor’s office and I was young enough to take the word of a doctor as the word of a God. When I talked to the doctor about the article I had read and the symptoms I shared, he said that I probably did have IBS and to drink lots of fluids. Then he sent me home. That was it … no tests, no questions, just yes and drink. Well what could I do, doctors know everything so I guess I just have to live with it.

Live with it I did, for about 10 more years. They say people who are diagnosed with Celiac Disease later in life have some sort of external trigger. The year I was diagnosed was a rough one for me. I had a promising relationship end abruptly, I was then in a car accident and finally I was falsely diagnosed with a tumor in my chest that would have required thoracic surgery with a 3 month recovery estimate. Luckily, they discovered before surgery was scheduled that what they thought was a tumor was actually just a dilated vein and nothing to worry about. As you can imagine, each of these in there own way is quiet stressful and add them all together, I think it was enough to trigger my semi-latent disease.

I say semi, because I had been having symptoms for 10 plus years, but it wasn’t until this series of events that the symptoms got a million times worse. For three weeks straight, any time I ate anything I got bloated …and not just a little bit bloated, but I looked 5 months pregnant. Having my stomach push itself out, hard as a rock like that was very painful. So were the following morning, afternoon and evening visits to the washroom. I knew it must be something I was eating but I couldn’t pin it down. I had no idea that one piece of toast was making everything worse.

With all the pain came this strange hungry/full dance that my stomach was doing. I would eat and before I was finished my meal or snack I would be so full (followed by bloating) but 30 minutes later I was starving again. But now I was starving with my stomach trying to expand three fold and the last thing I wanted to do was eat. After three weeks I had enough … really I should say after 10 plus years I had enough, but it was those last three weeks that pushed me into doing something about it. Luckily, for me there is the internet. I searched IBS and Chrones Disease and everything in between. Then I stumbled across an article that said “Celiac Disease is often misdiagnosed as IBS.” After reading up a bit on Celiac Disease I phoned my Mom and asked “What is it that Grandpa has? Why can’t he eat bread?” To which she replied, “Oh, he has Celiac Sprue.” It was at that moment I thought I knew what was wrong. Armed with my new found knowledge, I went to the doctor again … this time a big city doctor and told him my symptoms of recent and past and my family history. He put me on a series of diet trials and sent me for a blood test. Then the doctor called me back.

Being called back by the doctor is never fun and it’s rarely good news. I didn’t want to be diagnosed with Celiac Disease as it meant giving up my bread. I was the biggest carbohydrate fan out there. Some days I ate nothing but carbs. What was I going to do if I had to cut out wheat, rye, barley, malt and oats? On the other hand if I knew what was causing me so much pain and misery I could make it go away. It was a bitter sweet day when I walked out of the doctor’s office knowing that my life had changed forever … starting now, not a week from now. The blood test came back saying that I had 95 per cent chance that I had Celiac Disease and with my Grandpa having it, the doctor didn’t think there was a need for me to get the biopsy to prove it 100 per cent (this was not the best advice to give me in regards to not getting a biopsy, but that’s a whole other story).

Shortly after, I asked my Mom why she had never thought that any of my symptoms might have been related to Celiac Sprue like Dad had. She said that it was because I wasn’t loosing weight. It’s true, I probably looked like I was gaining weight because of my tummy and my weight was always steady during previous years. Although I had some symptoms they weren’t amped up enough to scream Celiac. Had I not started with a little of my own research my symptoms probably would have lead to rapid weight loss quite shortly as I was already not wanting to eat anything.

Most people look back on days where they were diagnosed with a disease with anger, sadness, and loss. The day I was diagnosed was a happy one. I finally knew what I had and that I could fix it. I didn’t have to take pills or injections and I didn’t have to just live with it. I could change how I felt for good. It would be a scary path to take at first, but a good one.

Months later when my intestines were really starting to heal, I noticed that a lot of things I had been dealing with separately were fading away because of my new diet. In the past I had suffered chronic fatigue, chronic diarrhea, chronic headaches with the occasional migraine (yes, they are different), itchy scalp, weak fingernails, etc. All of a sudden, I had more energy, was more regular, has less headaches, my scalp wasn’t itchy and my nails were getting stronger. Who knew cutting out a few grains would be both the hardest thing in the world to do and the best thing in the world to do?

Overall it took about 11 years for me to get diagnosed. How long did it take you? What are your stories?

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