As part of Coeliac Disease Awareness Week, which is running from the 14th to the 20th of May, I’m going to bring you ‘awareness’ every day on my blog. An insight into what the hell this disease is, the problems it causes me and how to deal with it. Whether you have Coeliac Disease or not, these kind of awareness weeks gets people talking and the more people that know about the disease, the better. It improves research and awareness, but importantly, will help people get the diagnosis they need. So, let’s start from the beginning…
My Coeliac Disease Diagnosis Story
I get a lot of people ask me:
“Surely you’ve always been Coeliac?”
“How can you just get an intolerance to gluten?”
and quite frankly, I don’t know.
My story starts around three years ago. I had just finished university and moved back home and I started to experience stomach aches, frequent toilet habits, sickness and fatigue. At first I put this down to moving back home and actually having proper home cooked food, rather than the convenience food I often ate at university. I thought, maybe my body is just getting to used to it? A couple of months passed and my symptoms started to get severe. I couldn’t eat a meal without feeling sick or rushing to the bathroom straight afterwards. I remember a time when I went out for a meal in town and we were walking to a bar, and I thought I was going to pass out. I felt nauseous, tired, and felt that my stomach was going to burst and believe me, it wasn’t because I ate a lot! After this I decided, that enough is enough and a doctor’s trip was on the cards.
I went to the doctors and explained the symptoms I was having. My doctor said that I was perhaps experiencing IBS and my tiredness was probably brought on by my anaemia. He then said I should go for a Colonoscopy. Okay I thought, this explains it and I will get a proper diagnosis after the procedure.
If no one knows what a Colonoscopy is, it’s where a tube is shoved up your bum. There is no other way to explain it, except that it’s not the finest moment I’ve had in my life. Fact. The build up to the procedure was worse, I had to drink two litres of laxatives 24 hours before the procedure and believe me, it was horrendous. The actual procedure wasn’t that bad, this was probably due to the amount of sedative I had and the gas and air, which made me feel incredibly relaxed.
Something I won’t ever forget in a hurry, is that I got to see the inside of my arse. A surreal and quite weird experience, I just kept laughing throughout the procedure, asking,
“Does it look normal?”
The only way I can deal with awkward situations, is to be more awkward. After the procedure they told me that everything looked fine and there doesn’t seem to be anything wrong. Phew, my arse was normal. Although it was relief that nothing serious was up, I felt confused as to what all these symptoms were.
Another few weeks passed and my symptoms got worse. I could barely eat anything without fear of being sick or shitting myself (TMI) and it was taking a hold on my life. Especially with work. I was working a 9-5 job, I was scared to eat anything in case I had to use the toilets and believe me, when you need to go to the toilet, you don’t want to have to do it at work. I felt embarrassed and humiliated that people would notice that I was going to the toilet a lot, so I often didn’t eat and went hungry.
I then took another trip to the doctors and explained that things had not got any better, and in fact things had worsened. My Doctor told me to take paracetamol to get rid of the pain. This is something I always remember, I felt alone and stupid, that no one, not even my Doctor knew how much pain I was in, but also how much it was affecting my life. I know paracetamol is a first grab for most illnesses, but I didn’t see how it would stop the awful bowel problems. I haven’t seen this Doctor since this moment.
A few days later, I booked another appointment and saw the nurse practitioner. I told her the symptoms I was having and how much it was affecting my life. I told her that I couldn’t eat anything without feeling sick. She then said
“Have you had blood tests for Coeliac Disease?”
I then was booked in for a blood test and and I proceeded to google Coeliac Disease up until my blood test results. When I heard the term Coeliac I thought it was something babies only got. I then found out, I was thinking of Colic, duh!
My blood tests came back positive and I was then booked in for an Endoscopy. I know I’ve talked about the Colonoscopy not being my finest moment, but the Endoscopy was much worse. I would take having a tube up my bum over a tube down my throat any day. This is something I thought I’d never say. It was possibly the worst thing I could imagine. Funnily enough, the Doctor who did my endoscopy actually had also done the whole tube up my bum thing.
He said “Haven’t I seen you before?”
Yes you have Doc, and you’ve also seen my arse.
Despite the sedative I had, I was not relaxed. It was something only to be described from a horror movie. I was on a table having a panic attack whilst numerous doctors were holding me down trying to shove a tube in my mouth. The thought of it now makes me feel funny. However, if those Doctors hadn’t of held me down, I wouldn’t have got my diagnosis, because, they found I had Coeliac Disease.
I got wheeled off to the recovery room and I was hysterically crying. A nurse came up to me and said
“Are you okay? Have you had some bad news?”
I said yes. However, the only reason I was crying was because my throat hurt and I felt violated. They brought biscuits to help with the stress. These biscuits weren’t gluten free, but in fact packed with all the nasty gluten stuff that I could no longer eat. This moment really summed up everything I felt at that time, that I had no idea how I was going to manage this change of lifestyle.
Well, that’s my story, from start to finish. Since my diagnosis two years ago, my life has changed for the better.
I feel happier, healthier and stronger and something I never thought I would feel again.
So what is Coeliac Disease?
Coeliac Disease is a lifelong autoimmune disease caused by a reaction to gluten. It causes damage to the lining of the gut which means the body cannot absorb nutrients from food. It affects one in 100 people.
- Stomach cramps
- Mouth ulcers
If undiagnosed and untreated, there is a greater risk of complications including osteoporosis,(I will speak about this in another post) neurological conditions such as gluten ataxia and neuropathy and an increased risk of small bowel cancer and intestinal lymphoma.
The only cure is to follow a gluten free diet for life.
If you do have Coeliac Disease then it is more than likely you will have Dermatitis Herpetiformis which a skin manifestation which occurs as a rash on the elbows, knees, shoulders and face, with red, raised patches often with blisters. This affects around one in 3,300 people. I’m quite fortunate that I haven’t experienced the more severe DH, however, the skin on my shoulders gets blisters and get incredibly itchy. It’s like a bug crawling in your skin and you need to rip it out. It’s got better in recent months, which I’m glad about.
There you have it, my diagnosis story from start to finish, tubes up your arse and down your throat all. I will discuss more later this week about my post diagnosis story, so stay tuned!
I’d love to hear about other people’s diagnosis stories, so let me know yours.
To find out more about Coeliac Disease click here
Visit my other Gluten Free posts here