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Coeliac Disease – the long bumpy road to diagnosis

Coeliac Disease - the long bumpy road to diagnosis

To write my story about having Coeliac Disease has not been easy for me, this disease has taken a bigger toll on my life than I have ever acknowledged.

Before you read this story, I want to be clear that despite my frustrations I hold no ill feelings towards the work of my GP. It was back in 2007 that I was diagnosed, Coeliac Disease was not as known then I guess. My GP was ignorant to this disease. I’m certain this ignorance no longer exists.

I share my story in the hope that others will be more proactive regarding their health than I was. Research, investigate, and be your most loyal advocate. 

Childhood

I would have been considered a healthy child with no grave developmental or physiological concerns. Sure I had the odd knock here and there as well as a couple of broken bones, but all in all I was well.  In hindsight, I can see that even as a seemingly well child, I was actually displaying some signs of disease in my early childhood.

I suffered from the most tortuous stomach pain, broke out in spontaneous hives a couple of times and had this instantaneous sensation that I needed to eat IMMEDIATELY which if wasn’t satisfied would result in further stomach pains. I remember the taste of the all too common medication I was prescribed. I can’t remember what it was but I do recall swallowing these tablets which always left a foul taste in my mouth. In my childhood I never received an answer to my illness, perhaps my doctor thought it was in my head, perhaps we did not look hard enough. Perhaps as a child I simply did not have the capacity to tell them how bad things were for me.

Twenties

By the time I was in my late twenties my health was in a pretty dire state. I had dropped a lot of weight, was extraordinary tired all of the time, suffered from severe bloating and had an almost constant pain in my stomach. Food would stay within my system for either days or minutes but never anywhere in between. I suffered from intense brain fog which made the simplest of tasks difficult to complete and my skin was constantly hurting due to never ending excema.

I saw my GP time and time again.

She had no answers.

She put my symptoms down to stress.

Over a period of two entire years I would attend my GPs clinic and beg her for help. This was not normal and I was so sick I did not know what to do. Each and every time I saw her I got the same response…….          

You’re just stressed and you either need to eliminate your stressors or work out how to manage them.

My breaking point was when I started experiencing pains which I can only describe to be like labor pain. The intense contractions would come on without warning and would stop me in my tracks. The pain was so severe that I would almost collapse as my nervous system went into overdrive. I vividly recall being out driving for work one day and needing to pull over.

As the pain overwhelmed me I sobbed and sobbed. I did not know how I could go on like this any longer.

It was this day that I realised that in order to manage my health, I needed to take matters into my own hands. I’d put complete faith in my GP yet she was not listening to me and certainly not giving me any answers to my concerns.

That evening after completing the chores and tucking my daughters into bed, I logged on to the to computer and started doing some research. I came up with two possible answers for my health concerns, one was Coeliac Disease. 

The very next day I made an an appointment with my GP. When I entered her office I simply said “I want you to write me a pathology form to be tested for Coeliac Disease.”

She looked at me with a perplexed look on her face. 

Coeliac Disease? I’ve never heard of that. 

I hung my head in despair, I held back the tears of my frustration. I was so fed up with trying to get an answer that I wanted to scream but by this point my ability to do anything that would take any more of my already depleted energy reserve was out of question. 

The Diagnosis

A couple of days later I was back in her office to receive the results. The results of the blood test screamed that I indeed had Coeliac Disease.

Finally an answer.

A wave of relief flooded over me. 

But this wasn’t the end of the story.

Before I knew it I was in the office of a gastroenterologist. Having assessed my blood results he had no doubt that I was Coeliac , but needed to run further tests to be sure. 

Within days I went through the ghastly preparation for an endoscopy and colonoscopy. I made a deal with my parter that if the results came back positive we would pick up burgers on the  way home. A last meal of sorts I figured. 

Upon waking from the procedure a very kind nurse informed me that I did indeed test positive to Coeliac Disease. My villi it seemed where laying flatter than a gluten filled pancake in a pan. The only solution was to cut all gluten out of my diet immediately. 

We did not pick up burgers that day. 

Over the coming weeks I made another visit to my GP. This visit involved me giving her a lesson on the details of Coeliac Disease. 

I also had an appointment with a dietitian, an appointment which turned out to be a complete waste of time for me. Her expert advice was to cut gluten from my diet (already done) and beware of the hidden places where gluten may exist. She handed me 6 A4 pages for me to post on my fridge for “easy” reference and also left me with the sage advice that I would gain weight, advice that I laughed at given it seemed like there were only a handful of things I could now safely eat. 

I had bone scans and further blood tests. Remarkably and thankfully, all of these tests produced impeccable results.

Early Days

The first few months seemed to go by for me still in a Coeliac brain fog. My entire world revolved around what I could eat and what I couldn’t. I literally spent hours diligently reading product labels in the supermarket and was in a perpetual panic about where my next meal would come from. I spent the first few months cooking different meals for the family, and rapidly turned into a hermit. The need to constantly explain what I could and couldn’t eat and the fear of being accidentally “glutened” was wearing me down.  Before I knew it I started to sink into a depression and had no idea of the health challenges that were yet to come. But that’s another story.

Today

In time, with hard work and diligence, I improved each and every aspect of my life.  I know live free of food stress and panic. I eat clean and well, free of complications.

I now am developing a health coaching business which specialises in assisting people live with Coeliac Disease, If you or someone you love is struggling with your Coeliac diagnoses, I feel for you. But I’m also here to help you.

To borrow the words from Jennifer Esposito

This is my mission.

Susan Buckland

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