All it takes is a single bite, but this time I ate a whole box. I had no idea – it was supposed to be safe – and I was so, so hungry. I was in the middle of a meeting with the team I’m volunteering with, and we went up the road to get lunch from a local cafe. I’d eaten there before, and been assured by the head chef and the waitress that it was perfectly safe. What more can I do? I ate it.
About an hour after I ate the last bite, my vision went blurry and my brain started to fog up. These are the first signs – these are the things that cause panic to rise in my chest and that make me want to throw up. I should clarify that throwing up is not a symptom of the disease: it is a symptom of the fear. That is how scared being sick makes me.
And so I tried to stand up: I thought “I’ll test this, I might be imagining it”. I walked to the toilets, and shut my finger in the door on the way out of the meeting room. That was the second sign: a total lack of depth perception.
When I got back to the meeting, my suspicious were confirmed. I tried to contribute a point to a conversation, but the words came out in the wrong order and I couldn’t think to work out where I had gone wrong. I felt hopeless, and paralysed inside my own, stupid, foggy brain. I couldn’t see properly, and I was on the verge of tears.
I excused myself and phoned my boyfriend, begging him to drive over and pick me up. My journey home would have been a tram ride, a walk, a train ride and a walk otherwise, and I was not going to be capable of that.
On the way home, I sat in the car, and felt totally, horribly resigned. It would be a week at least before I could function like a person again.
I feel like, now, I have introduced you to my symptoms, I should introduce you to their cause. I have coeliac disease. I am one of those annoying people who eats gluten free and I have a special skill when it comes to speed-reading ingredients lists.
And no, I am not over-dramatising what happened last week.
Coeliac disease is a serious auto-immune condition. When someone suffering from coeliac ingests gluten (a protein found in wheat, barley and rye), their immune system reacts by damaging the lining of their small intestine, preventing nutrients from being absorbed. Essentially, what happened to me last week was my body attacking itself.
I’ve been diagnosed with coeliac disease for a little over a year, and I’m still getting used to living gluten free. But, last week’s mistake was not mine. I was in a gluten free cafe, one of the things I love most about living in Melbourne, and eating food I was assured was gluten free. What caused the problem, I suspect (although I’ll never know for sure), was cross-contamination: one of the ingredients in my meal was made on the same production line as a gluten-based product and tiny molecules transferred across. That really is all it takes for my body to go absolutely crazy-ass on itself.
I realise that this post isn’t exactly a walk in the park. This is not a joyful “look how great my new life down under is” blog post, because for a week this month I was unable to walk more than five paces unaided and I was sleeping on average 16 to 20 hours a day. This is not exactly conducive to going out and doing super-fun things to write about.
But, I thought that this post was worth sharing anyway for three reasons: firstly, I promised myself that I would always be honest in these columns; secondly, it was Coeliac Awareness Day last week; and thirdly, because I want to raise awareness about how serious my condition is.
A lot of people eat gluten free for reasons besides coeliac or gluten intolerance (or the myriad other genuine health reasons to do so), and they often “cheat” and have a piece of garlic bread with their gluten free pasta because they miss the taste. This, in my opinion, spreads the belief that it’s OK for coeliacs to cheat… and, as I’m sure you’re now all too aware, it is not.
I wish more than anything that I could eat proper pizza again, but trust me I prefer being able to walk.
Thanks for sticking with me through this rant, and please, speak to a doctor if you are remotely concerned that you might have coeliac disease too. A couple of great reference points include this infographic by GlutenDude, and the Coealic UK website.
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