coeliac disease – let’s talk about it
i was diagnosed with coeliac disease about 6 years ago, but it goes back a bit further than that, and i’ve been wanting to write about this and my experience and diagnosis for such a long time now. it’s coeliac awareness week this week, so what better time eh? there might be a bit of graphic imagery (in word form) so be aware of that. also, i will warn you that this post is going to be long, and i may go off on tangents.
let’s start at the beginning. it’s vague to me but surely part of the story.
i remember as a young girl not being allowed to eat wheat. i don’t know the what’s and when’s and whatnot. i don’t know if i’d had some reaction or if it was something a doctor suggested or something else. i can’t even remember how long this lasted. i do have one distinct memory of having to eat ryvita instead of bread and being utterly disappointed. though the latter part of my childhood and teens though i seemed to be ‘fine’ with all things wheat (and gluten too i guess).
but late in 2010 i started getting really ill. i had put it down to the stress of moving a few months prior and starting uni, as well as a few other things. but i got constantly more and more fatigued and my stomach always felt bad in one way or another. then, in december i basically spent a whole month on the loo. it was horrible, incredibly stressful and depressing, and so confusing. i remember crying my eyes out on multiple occasions because i was so scared and didn’t know what was wrong with me.
i obviously knew something was wrong so i went to the doctor and told him what was happening. he immediately said (paraphrasing obviously) ‘it really sounds like you have coeliac disease (and/or ibs)’. he asked a few questions and told me a little about coeliac disease. then, i had to have an abdominal and rectal exam, just to check how things were in that region. not the experience i had expected when i went in, ha! a couple days later i was asked to come back for a blood test and to give a stool sample.
i can’t remember the timescale exactly, but not long after i was told by my doctor the blood tests results indicated it was highly likely i had coeliac disease and he wanted me to have an endoscopy and gut biopsy to confirm. i think it was about 2 months from that point to when i had the gut biopsy. at the time i was also severely anaemic and my b12 was pretty low too. looking back at one of the letters i have, it says i was referred and scheduled in on an urgent basis.
at that point i’d never had any form of endoscopy and i wish i’d taken the option of sedation! it was distressing, to say the least. the local anaesthetic (they spray it in your throat) worked fine and the staff were SO lovely but the feeling of pressure in my gut and the fact that something was down my throat and moving was unbearable to me. i have a really sensitive gag reflex as it is, why did i think i could do this?! i think the whole process was about 10-15 minutes, but it definitely felt longer to me.
about 2 or so weeks after that i got a letter that basically said ‘yes you definitely have coeliac disease’.
back to the doctor again to discuss food options. i did end up having some prescription foods on and off for a couple of years, but found i just didn’t like the taste of most things, and a lot of it was highly processed. i was very good at staying gluten free for a few years, but thanks to depression and stress i found myself eating things i knew i shouldn’t. of course, it made me ill (and further depressed) but at the time i stupidly didn’t make the connection. then, i had bouts of being very strict no gluten, with short bursts of going back to it.
now, though i still suffer from depression amongst other things, i’ve been super vigilant to stay gluten-free, for my mental health as well as overall health. i genuinely feel proud of myself that despite some dark moments and huge temptations i’ve not strayed for quite some time. all of this has been very hard on me considering my being anorexic for quite a few years, and having so many issues around food, from other sensitivities to the mental side of things. recovery is an ongoing journey. well, i’d say more of a battle to be honest.
there’s a whole lot more to all of this, and i will definitely discuss in further posts, but i just wanted to finally write this out to share how as a coeliac, eating gluten-free isn’t just a trend thing, my health and body depends on it to function somewhat normally. having ibs (and a multitude of other things) on top of this *really* doesn’t help, but i’ve definitely learned to accept my body a little more over the years.
if you want more information on coeliac disease, coeliac UK is a good starting point.
in relation to FINALLY writing about coeliac disease here on the blog, and opening up a little, there is something i’ve been wanting to do here for a while now. i want to share my favourite gluten free goodies, from cakes and biscuits, general snacks, and more meal based things. so, soon, i’ll be creating a food section on the blog. i can’t promise it will be regularly updated, but i wanted a place to share yummy foods and recommendations for fellow coeliacs.
whilst doing this, i’d love to help small businesses and gluten free friendly food makers and restaurants spread the word that there is delicious gluten free food out there. if you’d like to work with me on a feature, i would be so happy to hear from you if you’d like to get in touch.