A couple of short years ago I had a very tired, chronically ill little boy on my hands. My boy was that kid who caught every cold and flu passing through town. We were the family that missed daycare, work and birthday parties because he was sick again. My son stopped growing completely in his third year, his energy levels were…still higher than mine, but not on par with the other kids around us. He was moody, he was angry; I often wondered if he could be depressed at the age of three. This poor little guy complained about his stomach daily. He had to use the bathroom every time he ate. I drove myself crazy trying to figure out what could be wrong with him. He seemed to be mirroring some of the more unpleasant aspects of my childhood.
I grew up with chronic pain. Daily, excruciating stomach pains that would fade, but never disappear. It affected every aspect of my life. I was tired, I was always worried about what could be wrong with me, I lost all faith in a medical community that couldn’t tell me what was wrong or how to fix it. It wasn’t until I hit my 20s that a doctor told me I had IBS – irritable bowel syndrome. Finally! I had a name for what was wrong; I assumed that I would have a way to control it after the “diagnosis”. Unfortunately, the diagnosis of IBS brought me no relief. This syndrome is really only a cluster of symptoms, with no clear cause and no clear path to resolution. My pain continued, some days it would be so intense I would drop to my knees. My pain continued, with no real follow up, it continued with no testing, it continued with no guidance and it continued with no hope of relief. I honesty gave up the notion that it may one day get better…and then, celiac disease got it’s 15 minutes of fame. Celiac disease, the disease de jour. The disease that became famous because its kryptonite, gluten, had become a no-no in many celebrity circles. I began to wonder if that could be an issue for me. I went to my doctor and asked to be tested; his response was I didn’t need to be tested, because if I had it, I wouldn’t be struggling with this persistent weight problem. Sigh. So I went to see a naturopath, I stopped eating gluten…I experienced some relief, actually, I had the first stretch of time that I can remember with almost no pain! Could this be what was causing my son so much pain and anxiety?
Off we went to a pediatrician, off we went for blood tests. When I got the call from the pediatrician, she told me that Kieran’s blood tests indicated celiac disease and he was deficient in many areas. I chose to forgo any further testing and yanked all of our gluten foods out of the pantry right away. From that second forward he was gluten free. Well, I thought he was gluten free. It soon became apparent that eating gluten free food was not the same as not ingesting gluten. After many weeks of eating gluten free we started to see changes. He didn’t need to use the bathroom as often, his energy levels started to increase and he was more interested in getting out and playing. He started gaining weight, sprouting muscles and getting colour in his face. We started seeing the light at the end of the tunnel. But then things would shift; it would start with a dark mood, uncontrollable bouts of temper, a restless night and then the stomachaches. As hard as we were trying to keep him healthy, we were failing. We realized that it was going to take so much more than gluten free food to keep this guy going. He needs a gluten free house, he needs CERTIFIED gluten free grains, not just grains that *should be* gluten free, he needs to stay away from certain craft materials, lip balms, moisturizers. He needs to stay away from the crumbs at the lunch table; he needs to not eat those fries that may have shared a cooking space with gluten. He needs your child to wash his hands before they play. He needs the cook to know that a dirty cutting board or spatula can mean pain and darkness for weeks. He needs time, patience and understanding. He needs people to know what this disease really is, not the host of reasons that eating “trendy” gluten free foods is annoying.
What we both needs is to keep advocating for ourselves. To stop questioning ourselves and start believing our own bodies. To have the confidence to push back when someone else questions us. What we need is to get back to basics, to slow down and cook, to stop running from place to place, at the expense of our health.
As hard as this road has been, I’m so grateful for all of the healthy days to come.