Back at the beginning of the year, I had some new health problems pop up.
I have Ehlers Danlos Syndrome, so feeling dreadful a lot of the time isn’t abnormal, but this was New and Different, and actually pretty shit.
Between March and May, I had a whole round of blood tests done to check my health out. Why was I more than exhausted all of the time? Why was my hair falling out in handfuls? Why were my joints hurting beyond what was normal? Why did I feel so generally fucking awful without a new and good reason?
We couldn’t tell. I was anaemic, and iron supplements weren’t fixing it. My thyroid levels were elevated, and then they weren’t. My hair continued to fall out, and I was barely making it through my days.
As a last ditch effort, my doctor told me to give up gluten. “It probably isn’t coeliacs, but quit gluten for 6 weeks and see how you feel. If you get better, don’t eat any more gluten.”
It was our last option, but there it was. Quit gluten and see how you feel. He didn’t want to do any more tests because what else could we test for? (Coeliac markers maybe, but he didn’t want to.)
So I quit gluten.
That was back in May. I’ve eaten gluten properly once since then, and I spent the night head down in the toilet afterwards.
Gluten doesn’t agree with me. It makes me dreadfully sick. I get really spacey and my brain stops working well. I develop a rotten headache and reflux. I get nausea, and then all of my joints hurt and I get really angry. It lasts three days before I start feeling better after I get glutened.
It’s miserable is what I’m saying.
And yet here I am, justifying why I don’t eat gluten.
This is not a choice I made, but it is what it is. Other people don’t see it like that though. Go into a cafe and ask to not be made sick, and you’re some sort of evil orthorexic clean eating demanding bitch who wants to make their life hard. “Gluten Free Foodie Wankers” are the butt of all the jokes, as the tellers sit there in their bodies which work well, digesting whatever they feed themselves.
Of course they’re all very quick to point out that “We don’t mean people who actually have coeliacs, you know. Just everyone else? Right? Because they’re just being arseholes about it.”
Recent studies have shown Non-Coeliac Gluten Intolerance is a real thing, suffered by real people, with real symptoms, and I’m fucking pissed off, because everyone still acts like I’m making their life hard when I ask them to not put fucking breadcrumbs on my plate accidentally.
Being gluten free is not fun, or easy. Unless you live in the mecca of upmarket cafes, finding something to eat when you’re ou,t which isn’t another lettuce salad with no dressing, is a pain in the arse. You miss out on cake at parties. Actually, you miss out on everything at parties, because you can’t trust that your gluten free salad hasn’t had a contaminated spoon in it.
It’s HARD and it’s frustrating, and I fucking hate it. It’s not a choice I got to make. I can’t eat mostly gluten free but then have a cupcake on the weekend as a naughty treat. It takes work and planning to be gluten free.
I mostly don’t mind this, because I really like not feeling any shittier than I already do with the EDS. But I am so so so fucking sick of being asked to produce my credentials every time I mention I can’t eat gluten, or having people roll their eyes at me when I ask if their hot chocolate is gluten free (it usually isn’t) when I just want a hot drink at a coffee shop.
I know it makes more work, and I know it’s a hassle – trust me, I KNOW.
But for fuck’s sake, don’t make it harder for me.
People behave like they’re the food police, like they get to have a say what other people put in their mouths. And you know what? It’s bullshit.
Stop it. Stop questioning people over their dietary choices, or needs.
Stop making us feel like shit for needing to avoid certain foods.
And for fuck’s sake, can companies please stop cross contaminating all of the chocolate with wheat. It’s making it REALLY hard to not be a grumpy git when I can’t even eat plain chocolate.
Sigh.
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