Coeliac Disease & Me

For the last 5 years I’ve had numerous medical procedures done and I’ve had so much blood taken; I probably could have given someone a full transfusion if you add it up.

At the age of 14 I started getting awful abdominal cramps, that would rip through me and leave me feeling like I was going to pass out. Then would follow a mysterious internal bleed! (Spooky and gross, I know, I know). At 14 it was terrifying- when the inside of the toilet looks like a horrific murder has taken place, you begin to panic. This came on right before my GCSE’s and it slowly increased in pain levels and frequency as I got older. At first I was told by the doctors that it was nothing and I needn’t worry. I was told to eat more fiber and I would grow out of it. (Fannied off as I like to call it).
Then when it got to the point that fatigue had set in that badly and often i was fully bedridden and struggling to muster up enough strength to even go downstairs; let alone into sixth form for crucial lessons. We knew something was really wrong, it went from a fairly regular occurrence that would just come and go, I’d cope with the pain and it would be over. To something so excruciatingly painful and horrendous- the doctors could no longer ignore it.
I was prescribed all sorts to try and take away the pain, and that was as good as it got. I sat on waiting list after waiting list for procedures; from barium meal tests, to multiple colonoscopys, X-rays of weird things, internal organ investigations, sooooooo many blood tests and finally after 5 years a gastroscopy. I went from being told it was nothing at 14 and fobbed off, to aged 16/17 and being told I could have Bowel Cancer or Crohns Disease. I was shell-shocked, as were my family and those around me.
November/December/January 2015 were really dark months for me, after being told this news by my local doctors, my family insisted on a second opinion. I was very fortunate to have my wonderful Granny around to help at this point- it was totally unfair to assume that my family right after Christmas could afford to fork out for a private doctor for me. But we were all freaking out, no one wants to hear ‘it might be cancer’ at any age, let alone before the age of 18- and I know it sent my parents into utter shock. They started talking about holidays away, getting a puppy, there were constant hushed tones coming from the kitchen and I never wanted to show them how sad or worried i was by it.
The private ‘specialist’ was no help, other than ruling out Cancer with a click of his fingers (supposedly) he performed the tests that my doctors had already done and concluded ‘you’re just getting lady pains and a mixture of hemorrhoids’. Even though I know the difference between menstrual pain?!? And most certainly didn’t have hemorrhoids. I lost it completely,  I left the room in tears and felt utterly defeated by those who we are supposed to rely on for help when we need it. I continued to surf the waiting lists for my other tests, all of which ruled out cancer officially as well as bloody piles!!!
But none of them left us any the wiser as to my problem. By this point I was questioning was I mad? Was I a hypochondriac that was just insisting something was wrong and it was all in my head?! The only thing that kept me sane was the chronic amount of blood- as grim as that sounds. I honestly thought we’d almost exhausted everything! I was sick to death of Google. Can I just also point out- please never ever sit on Google (you just end up feeling worse). I cut out meat at one point, I attempted a month without gluten. That in itself was rather hard, as without the proper guidance you’d be shocked by just how many things we put into ourselves on a regular basis that are contaminated with gluten.
An M&S hall, courtesy of my first Coeliac friendly shop.
For me the final procedure that led to my medical conclusions was a gastroscopy. A teeny tiny camera was inserted down my throat all the way into my stomach, where it took biopsies (little samples of inflamed tissue) to be tested by their labs. And yes, it was just a disturbing as it sounds. You don’t eat or drink for like 12 hours before, which as the total fatty that i am, was hard. I insisted on the pain relief to numb me the fuck out via an IV and the throat numbing spray (I’m not an idiot, I wasn’t facing that not off of my tits).
Two weeks later I was informed by my doctor that I was a type two coeliac. Hoorah 🎉🎉 5 years too late.
Apparently I could have had a simple blood test and saved this entire palava. The NHS at its finest in my opinion, I’d supposedly had every blood test under the sun done, but not the one for coeliac disease. It’s actually kind of funny when you look at it now, I love the description online available for ‘coeliac disease’
Screenshot from Coeliac Disease UK
And that’s totally not the wonderful array of symptoms I presented for the last… Hrrrrm…5 years;
BLOATING!!!!!!!
– Severe stomach problems (charming way of putting diarrhoea)
– Followed by on and off constant constipation
– Any family member can tell you about the insanely gross levels of wind.
– Reccurant stomach pain and cramping.
– The one thing my blood levels did show was a severe lacking of B12 (so I was actually given an injection to rectify it?!)
– TIREDNESS?!?!?!
– I was the lowest weight I’d been in yonks back then, I managed to hit a size 10 and weigh around 10 Stone. After my diagnosis, I’m now a 14, with wonderful weight fluctuations.
– The never ending mouth ulcers.
– I’ve always had a dry skin eczema issue.
– I won’t lie, I put my constant downer mood onto the fact that I was in a lot of pain and just hated everything and never contemplated ‘depression’, as I’m a relatively upbeat person.
– Christ, my balance is in-existent as is my coordination, Sixth form put that down to Dyspraxia. Oops. Along with my joints wonderful game of ‘Oooh Patsie’s going up or down stairs, or crossing the road- let’s give way on her!!’
So yes… I had a lot of fun in my teenage years. As I creep closer to 20 with every day, I’m happy that I have discovered what’s wrong with me and I know how to rectify it. It’s not easy.. I mean I found out a week before I started working in a fast food establishment that literally just sells southern fried chicken. And it sucks, I’ve given in and caved a few times (it smells that bloody good all shift) and believe me, I pay for it. On a vast array of different levels, and I know I have no one but myself to blame.
But I’m mostly good, as the one things that scares me more than anything else is the line on every web page about coeliac disease ‘increased chance of miscarriage and fertility issues’. I know I’m only just verging on 20 and I’ve got my whole life ahead of me, but I’d hate to know my diet now would be the contributing factor in why I wouldn’t aspire to have a family of my own. And I know more than anything, I wouldn’t be able to forgive myself. Followed by ‘an increase risk of bowel cancer’, Sod’s law being I can have kids, but oh look; ‘nope you’ve got bowel cancer’ is my prognosis and how I’m leaving the world. I am that macabre, this is how my mind works.
 So I try to stick to my ‘Gluten free diet’- the food is mediocre a lot of the times. I like to call it ‘Food that’s double the price, but half the size!’. But already, I can see a great increase in the market. It’s expanding like crazy, as more and more people become aware of the growing need coeliacs have. (Not to eat utter shit and muck when at home or out and about may I just add). Literally, I tried this ‘Mrs Crumbles’ Pasta packet at work the other day, one word; VILE. Like ingesting vomit infused with cheese. But the ranges of foods, sauces, desserts, and snacks available are amazing. You just have to look and experiment, I guess its personal taste and preference, as I loved ‘Mrs Crumbles’ biscuits. They’re delicious. Marks and Spencer’s and Morrisons for me are leading the way, it’s not always cheap, but it’s worth it. From tempura chicken to fish fingers, fudge cakes to pot noodles and my favourites so far are M&S sausages. It’s so hard to just walk into a shop and pick up a packet of sausages now.
Life is easy and tasty, as long as you prepare in advance. Gravies are delicious if you use a knorr stock pot and a bit of the meat juices and some corn flour to thicken, soups can easily have the same added to them (minus the corn flour obvs). But my all time favourite is still CHEESE SAUCE!!!! The only thing you’ve got to worry about is gradually adding your flour or it will over thicken. Eating out is simple, so many places cater for coeliacs!! I had a wonderful gluten free meal at Pizza Express yesterday:
And shockingly, many festivals do too!! My Isle of Wight Festival 2016 experience was made by tons of fantastic stall holders who had alergen information on hand. My only (sober) photo of my gluten free choices at the Festival was this;
The Crispy Duck wrap stall was very happy to help, by providing duck fat chunky chips instead!!
And all in all, I think I’ve gotten off lightly; yes it’s a life long infliction and I’ve got to give foods up. But I’d rather give up food than my chance to have a family and enjoy life. My only wish is that I’d known sooner, so the damage to my gut would be less severe. I feel happier as a person, my mood has brightened, the pain has gone, my stomach is fine 99% of the time, I’m happy to leave the house!! And I’m not obsessing over my weight, I feel confident and radiant as a person; whatever the scales may say. So here, enjoy a dodgy full body shot of me (with my legs out and on show in a fairly skimpy playsuit). I was so confident that night, ft. My wonderfully talented and gorgeous friend Danni.
All I can say is if you’ve read this and you think ‘I bloat a lot and end up in a lot of pain’, please do not try and cut gluten completely out of your diet. As that can be honestly be a trigger!!! Seek medical advice and just keep pushing, maybe just reduce the quantity you eat in the mean time. So yes.. Enough of my gross ramblings, pictures of food and pictures of me for one day. I hope this could maybe be of some use to someone ☺️
Thanks for reading 💕
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