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.
Symptoms and Diagnosis
I was diagnosed at the age of 17 after a blood test and biopsy. Which all sounds pretty simple right? Wrong... My diagnosis came after 2 years of serious health issues, operations, hospital stays and generally just terribly ill health. I had so many different symptoms from so many different conditions - yeah, I went hard instead of going home, literally - which made it much harder to diagnose. However, a combination of - are you ready for the really sexy part? - constipation, diarrhoea (yep, I had both alternatively), sickness, nausea, fatigue, muscle/joint pains and extreme weight loss convinced the doctor that this might be a cause to some of my problems. And it turns out it was. I went home with a booklet of what coeliac disease was and was told to never touch gluten again.
Living with Coeliac disease
It's funny because so many people have asked me whether the moment I was diagnosed was one of the worst days of my life, but you know what? It almost couldn't have been more opposite. After feeling like death warmed up for so long, it was a relief to finally have some form of diagnosis and more than anything, hope that I might actually start to feel "normal" soon.
It was only when I came away and looked up this little thing called gluten and thought;
Holy fuck, I can't eat anything.
As a girl that lived off of bread, pasta, doughnuts and all the stodge, my diet literally had to be completely overhauled and totally transformed. One thing that I discovered and would suggest to anyone newly diagnosed is to go simple and natural and what I mean by that is that most food which is only one ingredient tends to be gluten free. Unless it's wheat, barley, rye, non gluten free oats then you're fucked of course. Things like meat/fish, eggs, beans/pulses, potatoes, rice, veg etc. are all naturally gluten free so I stuck with food like that. Another huge thing to be aware of are things that you would naturally choose to go with that kind of meal. I immediately gluten'd myself by pouring gravy over my meal and added brown sauce to my bacon because I just never even thought that it might contain it. Sneaky little buggers. But you get used to being more vigilant than security at airports. I can now scan the back of a food packet and discover if it's gluten free or not in a matter of seconds #Skills #TheyDontTeachYouThatAtSchool.
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!
So eating gluten free at home is easy for me. I love potatoes, I love meat etc. and if I fancy pasta or something gluteny, I buy the gluten free version. But it's eating out socially that I wanted to talk about and is actually a huge, huge part of this post and the reason that I wanted to write it to begin with. Many would assume that the worst part about eating out socially is finding somewhere gluten free. And it is. Kind of. If I'm with family or close friends, it doesn't bother me for a second. I am blessed with family and a fiance that have become my own gluten free martyrs and will inquire about gluten free menu and cross contamination before I even get a chance to myself. (Side note: I might be being a soppy cow shedding a tear at just how wonderful they really are) However, if it's a social occasion and I don't know people very well, or I'm not sure of where we'll be eating so I can't ring up in advance, this is when it gets really, really tough.
My job as a full time blogger means that I attend many events and breakfast/lunch/coffee meetings etc. and as a self conscious person at the best of times, I can genuinely feel myself shrivel inside at the thought of having to call over a waiter and explain that I need to know what's gluten free in front of people that I don't know. It's the embarrassment of people then asking about it, it's the embarrassment of turning down the bread basket and people assuming that you're on a diet, the pitying apologies as people dig in to the bread and oil whilst you dramatically enthuse that it's not a problem at all whilst secretly wanted to punch them in the face. It's comments like "Ohhh you can't eat gluten, so that's why you're so slim" that makes me want to throw the table up in the air (in my head, I do. In reality I politely explain that that's actually not true and gluten free products are usually a lot worse for you than gluten filled products as they're pumped with chemicals. Plus the fact that I have a fast metablosim, but what the fuck hell does it have to do with then, anyway? You wouldn't say, "Oh, you love bread, that's why you're fat" would you?).
And I know that I am being
totally ridiculous, I know that people are generally quite aware of gluten but this is almost the problem. People are aware of gluten because it's all of a sudden become this huge
fad in the last few years and here is why that is
not OK.
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 :)
As always, thank you so much for reading. I hope you enjoyed this post!
xx
Labels: celiac, Coeliac, Gluten free, health, Healthy, Lifestyle
