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.
Chocolate contains wheat?? how is that possible? it’s made from the cacao bean, I don’t see how wheat is part of the mix.
I didn’t know hot chocolate has gluten either. Not needing to be gluten free I haven’t had to research any of this.
I have a coeliac son on law, my daughter had to learn to cook gluten free for him, and she said most things like cakes, pasta, etc have a different texture , but they’re used to it now and rarely eat cake anyway.
There are quite a few people who jump on the bandwagon and ask for gluten free, dairy free, whatever free just because they thinks it healthier or makes them special somehow, it does make it more annoying for those who really need to be gluten free. My son in law carries his card everywhere to show at restaurants etc, but mostly they eat at home.
Chocolate does indeed contain wheat, River. It’s surprisingly hard to get gluten free chocolate (ASK ME HOW I KNOW!!) However, that said, V – here are a few pleasant surprises that are gluten free in the choc line:
– Toblerone
– Flake bites (not the full bars, the packets of bites)
– Freddo heads (not the full frogs, the heads)
– Roses chocolates (yes, all of them!!)
– Rolos
V, you know how much I feel your pain. I am Coeliac and so, now, is my secondborn (the 11 year old) and even after 10 years of strictly gluten free eating there are still days when it is bloody frustrating and annoying. I’ve got home cooking down pat to the point that I honestly don’t find it a hardship and don’t miss my gluten ingredients. But eating out has never ceased to be a pain and a struggle, even after all this time.
I can and do play the “diagnosed autoimmune condition” card but it sucks severely that I have to. If someone asks for gluten free food and explains that contamination is an issue, FFS just take them seriously. It’s no one else’s business if it’s Coeliac or non-Coeliac gluten intolerance or a diet to support thyroid function or whatever. JUST RESPECT THAT PEOPLE KNOW THEIR OWN BODIES BEST.
Yes.
I am so, so, so, SO sick of hearing the negativity, and the outright anger that gluten free food exists.
Soooooo sick of it.
Sorry to hear about that. There are lots who can’t understand gluten free. Hugs, x
Bit late to the (sadly cakeless) party here, but Sweet William chocolate is gluten free (also dairy free, nut free and vegan) and is *usually* available in the “health foods” section of Coles, and at Nature’s Works. I find it very more-ish!!
Before my best friend moved interstate it was always interesting trying to accommodate us both in the food department – she’s Coeliac and I no longer eat any animal products (animal fat and protein have different but equally un-fun effects on my IBS). I can only imagine the eye-rollyness if we went to a cafe together when we hadn’t planned ahead and wanted to know their options!
Tricky bodies are hard enough to cope with without added judgement for knowing ourelves best. *hugs*
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