OK, so, I’m doing this. This is a post that I have wanted to write for an incredibly long time now however, as it is something so close to my heart, and something that I live with every day (as do millions of others) it just had to be done right, and whilst I am a huge fan of the written word and generally find that writing comes ridiculously easy to me (it’s just everything else in life that doesn’t), this is something I’m struggling with a little because there is just so much to say. Also, despite the fact that having coeliac disease is in no way a positive thing – anything meaning you can’t eat “normal’ doughnuts and french stick can never be considered positive – I don’t want this to be a really negative, debbie downer post. More of a “here’s the brutal/blunt/[insert your own choice of honest synonym here] view of what it’s really like to have coeliac disease”.
Let’s start with the very basic, brief reasons I’m even writing this post:
1) One of my main reasons for starting this blog nearly 3 years ago was to spread awareness of coeliac disease and any amazing GF finds. That’s dramatically dropped off since the fashion and beauty collaborations came flooding in but it is definitely something that will feature regularly from now on as I’ve had so many lovely messages saying that it’s helped people so much.
2) Despite it becoming a “trendy” thing – don’t even get me started on this… in fact do get me started, just not yet, I’m saving that for later – there are still many unaware of exactly what it is, so I hope that this helps. When I was diagnosed 5 years ago, there wasn’t many gluten free blogs around that I could really relate to (as a 17 year old with no idea what barley malt extract was) so maybe I could be that person for at least one person.
3) This is a lifestyle blog. Yes I post a lot of fashion – and always will do – but even OOTD’s have a huge lifestyle aspect and this, coeliac disease, is a huge part of my life.
4) Coeliac disease causes all sorts of horrendous symptoms – of which I go into (multiple times because who doesn’t want to say diarrhoea over and over in a post) shortly – however I think there’s an assumption that you have the symptoms, get over them and that’s that. I’m not sure people realise that every time a coeliac is gluten’d, it causes irreparable damage to the villi (the outer surface area of the intestine) that in the long run, can be life threatening.
Back when I was diagnosed, supermarkets didn’t have a huge gluten free selection however now you can find pasta’s/bread/bagels/cakes/[insert your own form of product that’s not normally gluten free… woe is life] in abundance. However, be warned, 9 times out of 10 they will not taste like the gluten filled counterpart. Imagine cardboard mixed with sawdust, covered in salt or sugar… ta dah!
Before the bandwagon began, gluten free meant the food was gluten free, the kitchen in which it was cooked in was totally gluten free… it basically meant that it was completely safe. Nowadays however, people/restaurants have cottoned on to the fact that it’s slightly faddy and a lot of people certainly don’t need to eat that way and because of this, “gluten free measures” have been relaxed. I can’t even begin to tell you the amount of times a waiter has said “Do you actually have to eat gluten free because of an allergy or are you just gluten free?”
What the f**k does that even mean?
Well, what it means is that when you order gluten free at a restaurant, some places are clearly not taking every precaution to ensure that your meal is 100% gluten free and that’s why people jumping on the bandwagon is not OK. It makes it less safe for those that are going to be really dangerously ill if that kitchen that wasn’t cleaned properly leaks a crumb onto their meal. I know that some coeliacs are grateful for the bandwagon because it’s brought attention to coeliac disease and there are now more gluten free choices available, and I get that. But if I’m honest, I’d rather take a packed lunch – yep, I always end up having to do that because I can not be amongst people eating when I can’t touch a thing (this happened very recently and it was embarrassing, awkward but most significantly, I was frickin starving!) – than risk being ill. I really hope this doesn’t make me sound like a moaning, moping myrtle but sometimes I wish these people that say they are gluten free – and then go on to order pasta “because it’s worth it” – could see me after being gluten’d, because they’d realise that this “trendy” disease is not something to be taken lightly.
I think it’s clear that I’ve clearly gone off on 50 billion tangents in this post and if I’m honest, that’s what I was petrified about. I have never been so passionate about a post so I pray to God that the points that I’m trying to get across, actually get across.
As much as I could
bore you all to death waffle on for so much longer, I am forcing myself to stop here. Right now, life as a coeliac for me looks like this. On a day to day basis… I can be fine, great even. I still have “bowel/fatigue symptoms” left over from the damage that gluten has done, but life isn’t perfect for anyone is it? I try my absolute best to be safe and not get gluten’d, but I also try to live and enjoy eating out with friends. If I go out socially to eat, life is a little awkward and embarrassing and sometimes tough. And if I get gluten’d? Life looks a little bit like vomit, nausea, an all over body rash, diarrhoea, constipation – And the award for the bluntest/brutal/most honest coeliac in existence goes to…. – severe fatigue and general grogginess. (and as a result of that, days in bed watching Harry Potter with a Hot Chocolate).
I really, really hope that this was helpful to read. If even one person can benefit from this – a fellow coeliac, someone who thinks they may have the disease or even someone that now understands it a little better – then this
verbal diarrhoea outpouring of my thoughts would have been totally worth it.
I would love to know if you have coeliac disease and how you find life as a coeliac? I would love to know if you don’t and what your general view of gluten free is? Basically, I want to hear anything you have to say in regards to this post 🙂