Wednesday, April 14, 2010

My Story

I've been sitting here trying to decide what to write for my first post, and I decided to just start at the beginning and tell you my story.

Like a lot of people, my celiac symptoms developed over the course of many years. I don't recall ever having any symptoms of celiac during my childhood, other than sleep problems. Looking back, I can say that my early celiac symptoms began after I developed mononucleosis the autumn after I graduated from high school. I used to tell people that I never felt the same after that. My stomach became more sensitive and I was prone to IBS-like symptoms. I was tired during the day and had chronic insomnia at night. But, aside from some minor inconvenience, I was pretty much fine. I kept Maalox in my purse and beside my bed. I also chose my career based on its typical flexible schedule that would allow me to work odd hours so I could sleep during the day if I needed to.

This went on just fine for years until a bad relationship started getting just plain scary and finally ended. Around that time, my stomach symptoms started getting worse and I actually had to cut foods out of my diet that I had merely avoided before. Dairy would cause "bathroom issues" and if I ate salad, it felt like I was trying to digest sharp rocks.

At this point I started trying all sorts of things to get my digestion under control. I tried herbal supplements from the health food store and went to alternative doctors. For the most part, everything worked a little bit or worked well for a period of time and then stopped working. All in all though, it was still not too bad.

It wasn't until my husband and I had our first child in 2002 that things really got bad. Lets just say I knew where all the bathrooms were at every place I went. This was the first point where I had to modify my life to work around my symptoms. But I learned to live with it. I walked off my pregnancy weight by putting my daughter in her stroller and walking laps around our local mall rather than around the neighborhood. That way I could go to the bathroom when I needed to. It worked just fine.

During my pregnancy with my second child, who was born in 2004, things really started getting bad. I went from walking 3-4 miles a day 3-4 times a week to not being able to walk to the end of the mall. I wasn't just tired. I felt like I was going to collapse or pass out. It was really scary. I noticed that if I pushed myself physically I would feel the same way. It was like I had developed a very low energy threshold and I had to conserve as much energy as possible. I figured that this was just what it was like to be pregnant and have a one-year old (my kids are 19 months apart). It was a lot harder than I thought it would be. But again, I just got used to it.

It was after my son was born that things really got out of control. I had a very easy birth, to say the least. It was the easiest birth my OB had ever seen. That's a whole 'nother story in itself. So there was no damage, no birth trauma that could have caused these next things to happen.

Not long after my son was born, days..? Maybe a couple of weeks? I started having the most horrible, nearly constant electric shock type pains that would shoot through my hips and lower back. I had had chronic back pain for years, and I remember these pains happening before this to some degree, but they had gone to a whole new level at this point. These pains would come suddenly and completely lock me up and make me gasp out in pain. Any bending at my waist, even a few degrees, would cause the pain to shoot through my hips.

Every part of my life had to be modified at this point. I had to put my clothes on differently. I couldn't run errands by myself with the kids. I had to lay down and get out of bed differently. Walking up or down even the most gradual slope would cause the pains to shoot through my hips.

It took me two hours to just go grocery shopping if I had to go by myself (without the kids) because I had to use the grocery cart as a walker and could only get things that I didn't have to bend over to reach. I knew what grocery stores had the milk (for the kids) at eye level and which had it down at knee level. Because the milk at knee level may as well have been on Mars. I never went grocery shopping by myself with the kids because there was just no way. At all.

From a digestive symptom standpoint, if you don't have celiac you probably don't want to know. If you do have celiac, you already know. Horrific and constant are the two adjectives that most apply to this time in my life.

Between the digestive symptoms and the shooting pain, I was pretty much house bound most days for almost two years. I couldn't lift my kids into their carseats on my own, much less lift them up into a shopping cart. My best friend would help me run errands a couple times a week. She would help me with the kids, help me when I couldn't reach something without triggering the pain and watch my kids if I needed to get to the bathroom NOW (!!!).

But then there were always days when for some reason I was totally fine. No pain. No digestive issues. But they were random and unpredictable. I would have a few days in a row of no symptoms and I'd venture out with the kids on my own for a taste of freedom in our lives. I'd stop for hamburgers on the way to Target or the mall and then it would hit again.

There were also a lot of other random things that were happening. I had the most horrific nightmares that made me scared to go to sleep. I had a constant headache. I felt like I was trying to think through wet cement. I was exhausted and irritable. My hair was falling out.

At one point I decided that I'd try taking wheat grass capsules. Those were supposed to be good for you right? Well, after two days of that I came so close to passing out that I realized why they call it tunnel-vision. (Hey, that actually looks like a tunnel!) I was home alone with a two-year-old and a six-month-old and Daddy wouldn't have been home for several more hours.

Then there was the time when I stood up out of bed only to find that my legs had turned into the equivalent of cooked spaghetti. I dropped to the ground like a sack of potatoes and had to pull myself back into bed with just the "strength" (ha!) of my arms. I thought at first that my legs had fallen asleep, but once I got back in bed I realized that my legs weren't numb and I could move them fine. I tried to stand up again and I dropped again.

In September 2005 I decided enough was enough and I made an appointment with my doctor to discuss starting the process of getting a handicapped placard for my car and some sort of motorized scooter. I just couldn't do it anymore. I would see the commercials for the motorized scooters and think about how much freedom it would give me.

Then, just a few days before my doctor's appointment, I was looking at news stories on the internet and came across an article about a company making a wheat free pizza crust. I knew someone who avoided wheat because it caused blood sugar problems for her. So I read the article with her in mind.

As I read the article, it explained a little bit about celiac disease, including serious digestive problems. It also said that most people who had celiac disease had no idea they had it and it usually took years for people to be diagnosed with it.

I was doing a web search within seconds of finishing the article. I found a medical site with a list of symptoms. I was stunned. My entire list of health problems was staring me in the face.

Over the next few hours I found a message board for people with celiac disease. I spent the next few days reading everything I could. The more I read, the more it made sense. There were people who had the exact same, seemingly random symptoms as I did. Not just the digestive symptoms, but the pain, the difficulty walking, the insomnia, the clouded thinking, the headaches, the irritability. Just everything.

I learned what tests to ask for and the limits of the tests. Several people who had my particular brand of symptoms (digestive, neurological and psychological, rather than just digestive) said that their type of celiac often didn't show up on medical tests and that no matter what the tests said that I should try the diet because that's what happened to them.

I went to my doctor's appointment with printouts of celiac disease information, symptom lists and tests to request. When I handed it to her, her eyebrows went straight up. She ordered the blood tests and put in for a referral to a gastroenterologist for a biopsy of my small intestine. The biopsy would show if I there was visible damage to my small intestine. The blood test came back as a high negative, a few points below the cutoff for a positive celiac blood test.

As I waited for the GI referral to go through, I started experimenting with gluten free food and cooking gluten free. My plan was just to have enough food that I knew I liked so that when I tried the diet, I'd know what I was doing. It quickly became clear that those random symptom free days when I felt almost normal were the days when I didn't eat any gluten. The days when I ate gluten I could count on to be just horrible. I tried to keep eating gluten for the biopsy, but on the days I didn't eat gluten I felt so good that I didn't want it to end. Rather than eating gluten free a few days here and there just to try things, I started only eating gluten a few days here and there. It was just really hard to make myself do it.

The scary part was when my symptoms started getting worse. When I ate gluten I wouldn't just get a headache, it would feel like my head was being crushed. I wouldn't just need to RUN to the bathroom, I wouldn't be able to make it to the bathroom in time. I also developed symptoms that I hadn't had before. My speech started to slur, my ears and scalp itched and I started getting a skin reaction. My body was evidently finally free of something it had been fighting for years, and it wanted me to know in no uncertain terms that it wasn't going to stand for it anymore.

By the time I was able to get in to see the GI doctor for my consult, it was the holiday season. Because of vacations, etc., my biopsy wasn't scheduled until February. By the time I had my biopsy I hadn't eaten gluten in five weeks. I ate what I thought was going to be the last Christmas cookie of my life, spent the next few days paying for it and called it done. I did the biopsy anyway just to make sure there wasn't anything else going on.

And that's my story. I've been gluten free ever since then. I have a completely normal life now. I can walk wherever I want. I can go places without having the slightest clue where the bathroom is. I can sleep. I don't have nightmares. I don't struggle to stay awake.

My life now is nothing short of a miracle to me. I'm still constantly amazed. Every time I park my car and walk up the slope of the driveway to my kids' school, I'm grateful. Every time I speed-shop through the grocery store or bend over to get something from a low shelf it amazes me.

When I tell people that I have to eat gluten free, they say it must be so hard to eat that way. But it's just not. My life now is so easy. So worry free. So full.

I wouldn't trade it for the world.

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