My Celiac Story
*THIS IS A ROUGH DRAFT THAT IS STILL BEING EDITED
It was in 1994 that I began to have digestive issues. I was 14 years old and I was suffering from stomach cramps. After a week my mom took me to see a doctor who in turn told us that I was lactose intolerant. I cut back on my dairy intake, which was mostly cheese and ice cream, and my stomach got better. However, they didn’t stay better. It was in 1998 that my stomach cramps returned, but this time they were bad enough to make me double over in pain at times. This time I went to see my doctor who felt that I needed to change my diet. He told me to cut out all acidic food for two weeks and to come back in to see him. I did just that and, again, my stomach cramps improved, but this time I had stomach upsets every once in a while after eating out.
It was in 2000 that my stomach upsets started to become more problematic. It was in this year that my sporatic cramping turned into sporatic nausea. However, I chalked it up to my move away from home to go to university and the lack of proper meals. I was living on my own and couldn’t be bothered to cook for myself when McDonald’s or Taco Time were just down the street. And of course there was the wonderful Food Court at school where my friends and I spent most our time in between classes along with the Denny’s and Humpty’s restaurants for late night cram sessions or after a night at the bar. As the year progressed and 2001 came in, my sporadic nausea became a regular occurrence until it was simply a life of its own. As soon as I had something to eat the nausea would spring to action.
“Something had to change.” That’s exactly what a Chinese Herbalist told me in the summer of 2001. In fact, what he told me scared the s*#t out of me. I returned to school that fall with the intention of cooking my own meals. My roommates and I made arrangements to take turns cooking and we were probably successful about 50% of the time, but I was still eating in the university food court, only this time I worked really hard to eat a sandwich from Subway or have the soup at the Asian stop. I won’t even go into the specifics of how much pop or chocolate that I ate either, but it was definitely part of my food groups. My nausea came and went along with constant bouts of gas. I was so embarrassed with these, especially because there were some people who had no problems bringing it up in a conversation, drawing more attention than necessary.
Amazingly enough I survived university and entered the work world. I started working in schools and was forced to bring my own lunch. This is where my diet started to change. My meals weren’t super healthy, but compared to what I had been living off of before, they were beyond an improvement. They were one giant leap in the right direction. I worked really hard in 2002 and early 2003 to make my own meals. That’s when I discovered my first cookbook – Sunday’s at Moosewood Restaurant. That was a great vegetarian cookbook! We made wonton soup and jambalaya. I know that there were many others, but those are the ones that come to mind. However, during all of this time my nausea was still a constant with a new aspect – bloat. I swear that I was bloated from September 2002 until June 12, 2003. The only reason I know when my real stomach returned is because it was my 23rd birthday and I remember getting up and being completely shocked to feel “light.” I don’t know any other way to describe it. I didn’t feel like I was being dragged down by my stomach, which really wasn’t the case as I was actually underweight even with the bloating belly.
I moved back home in the summer of 2003 and found that I was completely exhausted. By this point I was suffering from nausea, bloating that came after I ate, but was always gone by morning, gas and now, diarrhea. This is when I finally got an idea of what my mom had suffered her entire life with Crohn’s disease and I felt repentant for every sigh that I let out when I had to wait for her while she was in the bathroom. I thought I was living a nightmare and it was only compounded by the upheaval that was going on around me with my family and then a very close friend of mine. I can safely say that the first half of 2003 wasn’t too bad, but the last half sucked and 2004 started out about the same. Thankfully it got better, not that that made a difference to my mood swings.
It was during the summer of 2004 that I noticed giant leaps in my moods. I could be laughing one minute and then angry enough to spit the next. I had no idea what was going on. I had always suffered from mood swings, but it’s expected when you’re in your teens, not in your twenties. It was simply frustrating. It was around this time that I returned to my doctor to see what was going on. I reviewed everything that I was going through (nausea, gas, bloating, diarrhea and mood swings) fearing that he would tell me I had to get tested for Crohn’s disease. Instead he suggested the possibility of Celiac disease. I was shocked. He explained what it was to me and we discussed the possibility, but I brushed it off thinking that if it wasn’t Crohn’s then I must be suffering from the acid reflux issues that seem to run on my dad’s side of the family. I left once again with the intention of limiting acidic foods.
The rest of 2004 to mid-2006 are kind of a blur to me. I remember spending a lot of time on my own, choosing to keep to myself rather than socialize because I didn’t know if I was going to have a bout of gassiness. I also remember trying to think up different ways of preventing the stench of my bathroom visits from giving me away, “if I flush the toilet right away, maybe the foul odour won’t have time to leave the vicinity of my stall.” FYI – that doesn’t work no matter how much you think it does. And, sadly, I remember the too frequent, but not often, evenings spent hanging over the toilet loosing the contents of my stomach, yuck.
I was living in a fog. I had very little energy and my weight was becoming an increasing concern. I have always been of a slight build, but by this point in time there was nothing to me. My skin was hanging off of my bones and appeared grey in colour. I was not well, but by this point in time I was petrified to see the doctor. Of course, that didn’t help matters. Nothing did. I simply got sicker and sicker.
I finally dragged myself back to my doctor in the spring of 2007 after I had been so sick that I had only been able to work a total of 17 days in a period of three months. I was 70 pounds, that’s 30 pounds below my average weight. In fact, my doctor told me that the only reason he wasn’t admitting me into the hospital was because I had walked into his office on my own two feet. The idea of celiac disease was brought up again and the testing process started. My blood tests came back positive. I did not see a gastro specialist because as far as my doctor was concerned, I didn’t have time to wait to get into to see one; the waiting list, even if I was pushed to the top, was over six months long. Therefore, I have not been diagnosed via a biopsy. I was simply diagnosed based on a matter of elimination at my doctor’s direction. I realize that celiac specialists are insistent that a biopsy be done for an official diagnosis, but I feel that there are some cases in which an individual cannot wait for one.
There is no way that I could have continued on the way that I was. There were nights when I would lie on my bathroom floor with a blanket and pillow, in pain and agony, exhausted from being sick, praying to God to help make this better or to simply take me. Most of us forget the horrible times that we have been ill, I don’t. I hold onto these memories as a reminder of what once was and could be if I were to ever stray from the diet that has given me back my life. As horrible as it sounds, I don’t think that I could have adhered to my strict gluten-free diet if it wasn’t for those horrible months.