Life as I know it is about to change, maybe forever. I don’t want to make this change. But I have to. Well, OK, I don’t have to, but I am choosing to despite my deep reluctance. What is this massive change you ask?
Later this week, on Wednesday, August 1st, I am going to give up some of my best friends: cakes, cookies and doughnuts, pasta, crackers and bread. No, I’m not going on a weight loss binge; I’m going on a gluten-free diet trial for my chronic pain. Even typing the word “gluten-free” makes me sad.
With fibromyalgia and myofascial pain syndrome, my world has shrunk considerably. There are so many things I either can’t do at all anymore or can only do in a limited way. In addition to the body pain and headaches, I don’t sleep well at night; I’m tired every day; I run out of energy quickly. Late last year, I was referred through the pain clinic in Edmonton (that I waited a year to get into) to a doctor that deals with patients with celiac disease. This disease (as I understand it anyway) is an auto-immune condition in which the body reacts against gluten, a protein found in wheat and other grains. If you have celiac disease, you can’t eat gluten because your body reacts against it, sending out antibodies into your system which then harm your body. Different people’s bodies react differently in terms of the negative effects of these antibodies. For many, apparently, it can show up in chronic pain, headaches, fatigue… the symptoms I suffer from.
Based on my blood work, which shows a small reaction to gluten, this doctor, Dr. Nordli, thinks I may have celiac disease. Although I had a negative intestinal biopsy (the usual test for the disease) several years ago, she believes that celiac disease can still be present. In her view, if you react at all to the antibodies test, that’s enough reason to believe you have celiac disease. She recommends a gluten-free diet for a minimum of two months to see if your symptoms improve (I somehow got it wrong initially and thought it was only one month. Sadly, I learned from her the other day that two months is needed, and in fact, that’s the bare minimum because the antibodies only leave your system around the six-week mark. At two months you are only beginning to feel any improvements that your body might eventually receive). Dr. Nordli is convinced this major lifestyle change will help me as she has yet to encounter a chronic pain patient who didn’t improve by going gluten-free (out of about 100 patients to date).
I really don’t want to live gluten-free; I tried it for one day a week for some time (then two days and then three) just to get used to the adjustments it requires. Going gluten-free may seem simple, but in fact, it’s quite challenging. It’s not just cutting out obvious wheat products. It also includes other grains such as barley and most oats. It also involves cutting out anything with less obvious wheat products such as soy sauce, most prepared soups, many other prepared foods and anything that has a label that doesn’t make it clear that there is no gluten (such as the word “spices” with no explanation of what the spices are as some may have been mixed with wheat apparently). What’s perhaps harder is avoiding “cross-contamination,” where your food has no gluten in it, but it was prepared near food that does so somehow that gluten gets on what you eat. Since the body reacts to the slightest bit of gluten, even trace amounts can create health issues for people who react poorly to it. This means that you have to avoid cross-contamination too, which is pretty tough in a restaurant when you can’t see how your food is prepared. At home, even if you eat gluten-free bread, for example, you have to make sure not to toast it in the same toaster as your spouse toasts his regular bread. And on and on it goes.
With all this in mind, going gluten-free to me seems like nothing but a chore that stands to remove so many foods I love from my life and make eating out or at other people’s homes a serious challenge. It will, as far as I can tell at the moment, shrink my world even farther. With eating as one of the few pleasures I can still enjoy, the thought of losing so many favourites all at once and possibly forever depresses me. The main question in my mind as the countdown to my start date continues too quickly is “will gluten-free mean glee-free?”
“Why do it?” you may ask. Believe me, I’ve asked myself that question over and over. It’s true that I don’t have to try this experiment. I can choose to live life as I have been. But frankly the current state of my health also makes my life a challenge. And now that I’ve completed the pain clinic program and only received minimal pain relief, I feel that this gluten-free thing is worth trying. It may turn out to have no impact at all on my pain and energy, but it could have significant impact. It could turn out to be just the thing I need to feel amazingly better; the only way to know for sure one way or the other is to do the diet.
So that’s what I’m going to do. I can’t say I have nothing to lose here, because I do love to indulge in gluten gluttony, and I will feel the loss. At the same time, I may gain so much.