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170: The Magic Dance

My small human tried to describe a movie synopsis to me alongside Arrested Development’s “Mr Wendal”. It’s a great tune, I love it, but for the life of me, I couldn’t work out what movie she was attributing it to. Eventually, the brief synopsis of a girl running in the rain with her dog to then get home to find her baby gone was clearly Labyrinth and obvs, Bowie sounds so much like that 80’s rap classic (?!). And so on a quiet wet Saturday afternoon where I was feeling particularly “off” my game, we popped the 80s cult classic on.

I’d been feeling “off” my game since earlier in the week when I’d been out for dinner with a friend.

I often forget I have an auto immune disease. As diseases go, it hasn’t felt since diagnosis, that difficult to adapt my life. I think the word “disease” is a bit gross too, right. Plus, society has a way of dampening it by slapping a “gluten free” label on it, rather than coeliac.

But no really, I’m coeliac. I ain’t gluten free for fashion or diet or because it makes me feel less bloated. I’m gluten free - coeliac - because each time I digest gluten my villi’s - that’s the small tissue in your stomach that allows food to be digested into your bloodstream - react and damage the lining of the small intestine. The protein of gluten found in wheat, barley and rye is rejected by my body and my body subsequently goes into meltdown as if I’ve a bout of food poisoning - but not as you know it. It happens almost instantly, within twenty minutes if not sooner. And I know you’re sat there going: “mate that ain’t possible”. Oh believe, it is. Because my immune system has been attacked and it’s damned if it’s gonna let anything fuck with it. That said, sometimes it’s a slow burner. Sometimes I can feel “not right’ since eating said meal and feel intense fatigue, generally low and all sorts of “off”. And everything I eat for the next few days, week or so on, won’t “latch on” to my body. My body rejects it, even if it’s wholly good for me: I’m talking fruit, veg, god damn hot water.

It can be debilitating if I’m glutened, as we call it. The fear has lessened since I’ve grown accustomed to how my body reacts in flight mode, but the fear to eat OUT has not. I check, I double check, even triple check at a restaurant. I keep telling myself to “be brave” because that’s the advice I consistently give my daughter if she has a fear of that spider on her trampoline, but how can I be sure my food ain’t gonna make me sick as a dog?

I ain’t meaning to sound like I’m complaining - although I am fully aware this is how it it’s coming across. I guess I’m frustrated that so many people sort of cringe or wince when I say I’m gluten free as if it’s a choice: it is not. Trust me, I wish I could eat that superior pizza base, awesome pasta, or y’know, just some god damn soy sauce. Yes really. I can’t eat soy sauce. I wish every meal out wasn’t like a bit of a lucky dip situation, or that my mate’s didn’t have to opt for somewhere I know it’s safe for me to eat. But more so, I wish I didn’t feel crappy for ages whilst my immune system tries to adapt to the most recent “attack”.

And that’s what’s been happening this weekend. After muddling through the rest of the working week, come Saturday my whole body just went “nah give it up, love”.

Anyway, I really ain’t complaining, honest! (How many times have I said that…?) I think I’m just fed up. As diseases go, it ain’t all bad and I can normally on a day-to-day life shizzle, manage it. I just wish people “got it” more. I honestly hate and don’t want to be an inconvenience at your dinner party, and I don’t want to have to ask the waitress three times to check, and I don’t want to have to be a general pain in the arse. I get there are more serious diseases out there it’s just a bit..meh.

On a lighter note, I did see this great Buzzfeed-like list which sums up holidaying with a coeliac pretty perfectly. I lol’d as I’m laid up.

(If you want to know more about coeliac disease, head here.)

Thank god for David Bowie and that song this weekend…

Be good and bake well,

Lady Bakewell-Park