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My Coeliac Story

My Coeliac Story

For Coeliac Awareness week I thought I should tell my Coeliac story, in some respects it is similar to other peoples stories but in others it isn't so here it is! It's only taken me 4 years to tell it!
As it is Coeliac Awareness Week, I thought this week would be a good week to share my story. It's not something I have really done despite running my blog and website for almost 4 years now.

So I'll start at the beginning, for those of you who don't know who I am, I am Alison, I am the owner and founder of Coeliac Sanctuary and I am far to close to 30 than I would like to admit. I was only diagnosed 4 years ago but my story starts much further back than that.

I'm going to start my story from as far back as I can remember, school. All through school and college I wasn't the healthiest. I was off sick every other week, most of the times with the same two things, either ear infections (ironically I have found out since they can be linked to food allergies and auto immune disorders) or upset stomach.

It was something neither me or my Mum really thought about until after diagnosis, I always had stomach ache, at least once a week. GP's and consultants put it down to a "nervous belly" because of bullying. I don't remember having any tests apart from standard blood tests, I remember being told I had low iron a few times from the GP and given iron tablets, other than that I can only remember constant trips to the GP and seeing a pediatric consultant a couple of times and that was it, never getting an answer.

I missed a lot of school but still passed my GCSE's and scraped through a-Levels, just!

I had always had a flair for IT and one of my tutors at college, I can't even remember her name, suggested I apply for a Foundation Degree in computing.

I was accepted, despite my poor attendance level in college and my low grades, I was somehow accepted, I can only presume some strings were pulled somewhere!

The two years I was in college were my best years, I was actually in 90% off the time even though on a lot of days I was still suffering with nausea and stomach aches, I think this was the point when I actually decided it was all in my head and it was just out of nervousness I got the stomach aches. I got through my Foundation Degree and passed with a good grade and even got accepted at Manchester Metropolitan University to turn my foundation degree into a BSc. I went to Uni for a year and hated every second of it, but much like the two years before I was mostly well. All the years of stomach aches and they suddenly seemed to be getting less common. I wasn't complaining at that though.

It was in my uni years I recognized I had an issue with pasta, I went through so much pasta while in uni. I was trying to lose weight, I have never been skinny and always struggled to shift the weight. I wanted to lose weight for my graduation so joined Slimming World, however I noticed a pattern, I lost weight fine as long as I didn't eat pasta. Everytime I ate it I'd bloat like anything, nothing else was an issue, just pasta, if I ate that I would gain, not lose weight. So I only ate it occasionally, at the time I thought nothing of it, I still got nauseous and had stomach aches but I never linked the two.

I left uni with a BSc degree in computing, something a few years before I never thought I would end up doing, but I did. After leaving I got a temporary admin job. I was fine for a week, then ended up violently ill at least three times a week for the 2 months I was there. I was only there part time and was spending most of my days in the toilet. I liked my job but was terrified of answering the phone so it came back to the "nervous belly", assuming my anxiety of answering the phone was what was doing it but I'd never suffered like this before.

I went the doctors and was told "oh it's IBS" and given buscopan, I had never suffered with diarrhea up to this point, but it was getting horrendous. The buscopan did nothing whatsoever. I blamed everything, I thought it was the strawberries I was always eating but I'd never had an issue with them before. It eased when I stopped drinking tea made in work so we blamed the tea, the milk, even the tap water. However the symptoms never really went, only eased. Again the GP put it down to anxiety and IBS.

As soon as I moved to a new permanent job as a web designer (with no phones I'll add) the diarrhea stopped so always assumed it was just something I was having while in that office or my "nervous belly". I was in that job 2 and half years, I barely had a day off sick, I loved my job, I got the odd upset stomachs, it was normal for me. By this time I was diagnosed as having Polycystic Ovarian Syndrome after other issues so stomach aches and fatigue were often put down to that or the old "IBS".

In my two and half years in that job I lost about 4 or 5 stone through Slimming World, I'd stopped eating pasta, apart from on the odd lunch time when we got a lunch lady coming round and she had amazing spicy chicken pasta that I've never been able to replicate, it was the best pasta but like I'd figured years before I ended up looking 6 months pregnant when I ate it, but I did anyway. I'd suffer with stomach ache and bloating for days but doctors said it was "just IBS" so I didn't argue.

In August 2013 the company went into administration and my health went south from there. After a few weeks I was offered another job as a web developer rather than designer and I hated it, I hated travelling there, I hated the work, I was stressed beyond belief, then I ended up doubled over in agony.

I went the doctors they did blood tests, nothing. They did more blood tests. Even more of nothing. I was put off work for a few weeks because I couldn't even sit down, the pain radiated all through my stomach and back, I couldn't lie on one side because the pain was more on the right than the left and I couldn't eat without pain.

I was due to go back work and was in the worst pain, I was sent to hospital with suspected appendicitis, ultrasound showed my appendix was fine, they decided I was constipated so gave me laxatives (didn't do anything) and just observed me overnight, typically the pain went next day, so when the consultant came she discharged me and said if it was still there they would have sent me for a gastroscopy as everything else didn't show anything but the pain was temporarily gone so they did nothing else.

I was given a few more weeks off work, I was doing so much walking because I couldn't sit, the pain was so bad when sitting or lying, it was effecting my life, I couldn't work because I couldn't sit at my desk longer than 5 minutes. I did pretty much hit my target weight though, by now I was at nearly 6 stone weight lost (not because the illness was making me lose though) all the walking I was doing was beneficial that way, I was never still, I was near enough sleeping standing up, I was fatigued all the time but couldn't sleep properly because of the pain, I was in a catch 22. And still there was nothing wrong with me, I was "the picture of health" according to one GP... I wish someone told my body the same!

I was put off work for weeks at a time in constant pain and no relief. I'd worked 4 whole weeks in the 8 months I had been employed at my new job. I was passed over to a consultant at the hospital, told no less than 5 times there was nothing wrong with me by GP's, consultants, nurses. I was so close to breaking point, I had had enough of the now constant pain that wouldn't go, that hurt when I ate anything. The horrendous acid burps that suddenly kicked in one day and didn't disappear from that point on, the nausea that had me running to the bathroom too frequently, I just wanted an answer.

Another consultant appointment and this time I'd been Googling, I was fed up of no answers I did my own research. Coeliac fit all my symptoms, so I suggested it to him. "Have you not been tested for Coeliac?", "ummm, no". He sent me for Coeliac blood tests that afternoon and then I did the worst thing but also the best thing, I stopped eating gluten straight after the blood test (folks please don't do that as you need to be eating it for the gastroscopy).

Within two days my pain had almost gone. I woke up with no nausea, no acid burps, it was almost like it had never been there and it had all been a nightmare. Within a few weeks I was almost back to normal. I did have the odd bit of bread those first few weeks etc when I knew no better and the pain in my right hand side came back almost immediately and the nausea was overwhelming.

I did have a gastroscopy, there was slight damage but nothing significant given on the report (I hadn't eaten gluten, or not intentionally for a couple of weeks),although my blood tests came back negative (when I was still eating gluten). When I saw the consultant he said it could be Coeliac, it was never definite but the letter to the GP from the consultant said "possible Coeliac" so thats the diagnosis I was given. RESULT. I had an answer, finally!

Since my diagnosis I got a lot better, the pain went almost completely, though I do still get stomach aches when I get anxious but it's not the same pain, I can tell if it's a "glutened" pain or not. I haven't eaten gluten intentionally in 4 years but when I had accidentally consumed it within 15 minutes I have gone running to the toilet and been in agony for days.

I was off ill from work to long though too long, they couldn't keep my position open any longer and I still wasn't well enough to return but because of another issue. It was when I left this job that I started Coeliac Sanctuary properly, I'd been working on it a few months while going through the diagnosis as somewhere to keep track of places I could eat at and being a web designer/developer it kept my brain going while still off sick.

A few years on, I have been through another illness, another job and finally ended up running Coeliac Sanctuary full time and opening the online shop. I went through a rough time but in the end Coeliac has made my life better, my stomachs better than it has ever been (and I can eat pasta again, albeit gluten free pasta) and I help people everyday through my website who are diagnosed or going through diagnosis whether through my blogs, recipes, shop or just by chatting.

My illness and pet project turned into a new career, doing three things I love, writing, creating recipes and running a website, I still can't believe 50K people and growing visit Coeliac Sanctuary in a month it's grown phenomenally in 3 and half years and I hope it continues to help people going through similar to what I have.

Your Comments

Wow! Well done you for publishng this...so proud of you x

Jean Stanley - 16th May 2018

Hi
I’ve just found you. I am in the process of having tests and awaiting results of coeliac blood test this week. I’ve had acid, bloating, abdominal pain, constipation, food feels stuck and more! All of a sudden it’s feels like stress might have triggered a nasty outburst maybe I don’t know. I have been told yesterday that also my blood pancreatic amylase test came back slightly higher than it should be. So being sent for a ct scan. I have a horrible virus as soon as I came back from Crete last year. Since then I have had bronchitis episodes and abdominal pains for nearly a year. Any advice would be appreciated. I have a feeling that the ceoliac test may come back positive. Watch this space...:-)

Sarah - 26th May 2018
Alison @ Coeliac Sanctuary replied to this comment on 27th May 2018

Don't worry if it does come back negative, either push for more tests if you want a diagnosis and are sure you have a problem with gluten, or if you are happy not to be diagnosed try removing gluten and see if it helps all your symptoms. Fingers crossed the bloods comes back with the answer you need. If it does come back positive remember to continue eating gluten until you get sent for a gastroscopy otherwise you could end up getting a negative off the biopsy.

Having just returned from a holiday in Crete I highly recommend that anyone travelling to Greece purchase a diet card giving food outlets details of what you are able to eat and what you should avoid. In Makry Gialios I WAS SERVED WITH CARE AND THOUGHFULNESS.

colleen darby - 3rd July 2018

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