The long winding road to a diagnosis

Let me start by introducing myself.

“Hi. My name is Candie.

I am a busy mum, a physiotherapist, and just an average person.

Gluten is my poison.

At 28 years of age, after struggling with health issues for over a decade, I was finally diagnosed with coeliac disease.

diagnosis

If you are reading this, you are probably following a gluten- free diet, or are wondering if you should because of nasty symptoms or for perceived health benefits.  Well, I have been following this diet since my diagnosis almost 8 years ago and gluten-free living has become a normal way of life for me now. I have never intentionally eaten even a microgram of gluten and I never will.

I will tell you why by sharing the long road to my eventual diagnosis with you. I am sure that many of you can relate and have your own stories.

Late childhood:

When I was around 10 years old, I started to suffer from terrible tummy pains. The type of pain that makes you double over and feel faint. My mother took me to her doctor who decided that I wanted to miss out on school and sent me home. Just like that.

I then began suffering from severe bouts of explosive diarrhoea. I remember spending hours on the toilet, studying and resting my head against the shower frame because I felt too weak to get up, only to have to go back to the bathroom a few minutes later. This was a regular occurrence that worsened over time. I started to have fainting spells.

The same doctor that said that I wanted to miss out on school, now gave instructions to my mother to feed me only plain boiled rice, crackers and toast when I was so severely ill and to give me regular rehydration salts. My mother obeyed. After all the doctor knows best, does he not?

I was weak, constantly tired and found it hard to concentrate at school.  Yet, I kept eating my rice and toast and carried on.

All the while, the doctor never conducted one blood test and never referred me to a specialist.

Early teens:

Miraculously, in my early teens, my symptoms disappeared! Thank heavens! No more regular bouts of diarrhoea and no more severe pains! No more plain rice! I later read somewhere that the symptoms of coeliac disease can go into remission in adolescence, although damage is still happening in the gut in reaction to gluten. But at the time, I was clueless and was just happy to be pain free. I was however diagnosed with anaemia after fainting several times. I was given iron supplements and sent home.

Getting older and losing hope.

In my early 20s, I got ill again. The bouts of diarrhoea returned with a vengeance and by the time I was in my mid twenties I couldn’t remember what it was like not to pass only liquid from my behind. I was a regular visitor at the doctor’s clinic because I was weak, anaemic, and couldn’t concentrate on simple tasks. On one particular visit I cried in front of the doctor because I was at my wit’s end.

Because of this show of emotion I was referred to see a psychiatrist. No blood tests were done. No referrals to a gastroenterologist was made. Nobody even queried the fact that I had constant bloating, gas, diarrhoea, dizziness and nausea.I obediently went to my psychiatric assessment, mostly to keep my parents from worrying any more. The psychiatrist found absolutely nothing wrong with me.

I gave up on bothering to see doctors after that, and feeling regularly ill became a way of life. I learnt to live with the pain. But at one point before my diagnosis, I started to lose lots of weight. And fast.

Friends and colleagues were telling me how great I looked with my new slim figure, but I felt terrible. I actually looked ghastly. I was anaemic. My hair started to fall out. My nails were brittle. I suffered from a fractures with the slightest bumps.  I was exhausted and my immunity was at an all time low. I suffered from more chest infections in that period than in my entire lifetime. I hadterrible mouth ulcers and eye twitching. I thought I was going mad!

Getting close to healing.

A telephone call from my uncle changed everything.  I told him how I was feeling and he told me that my symptoms sounded just like his. He had just been diagnosed with something called coeliac disease, a genetic autoimmune condition in which the body attacks the lining of the small intestine in response to gluten. It is a multi system disorder that can have a wide range of presentations.

I had never heard of coeliac disease. I didn’t even exactly know what gluten was. I thought it was found in bread and pasta only and that people who ate gluten-free foods did so to be healthy. After all, the only place I ever saw gluten-free food was in the health section of the supermarket aisle.

I was lucky enough to work in a hospital, so I asked a doctor if he could do a blood test to check for coeliac disease. The antibody levels were through the roof. My husband, who was my boyfriend at the time, dragged me to see a gastroenterologist who ordered an urgent gastroscopy. And just like that, I was diagnosed after almost 18 years of troubles! I was malnourished, weak, and had osteopaenia in my hips.

But I wasn’t crazy!!! There was hope! A person with coeliac disease has a higher risk for other autoimmune conditions and health complications, but once they are established on a gluten free diet healing will start, some complications might be reversed and eventually the risks become the same as that of the general population.

This is why early detection and diagnosis is important.

Nobody should have to wait 18 years to get a diagnosis although for some people it takes even longer than that! There are so many people walking around feeling unwell and have just been misdiagnosed, labelled hypochondriacs, or just never sought help.

I am starting this blog to help raise awareness about the gluten free lifestyle and the spectrum of gluten related disorders.

p

I hope that you will enjoy reading my posts.

Candie x

_____________________________

photo credit: <a href=”https://www.flickr.com/photos/marcovdz/5832726818/”>marcovdz</a&gt; via <a href=”http://photopin.com”>photopin</a&gt; <a href=”http://creativecommons.org/licenses/by-nc-nd/2.0/”>cc</a&gt;

Advertisements

2 thoughts on “The long winding road to a diagnosis

  1. Dear Candie,
    Your article made me feel so emotional! I can understand exactly how you were feeling, the only difference is that I was never diagnosed, as unlike you, my doctor put me on a Gluten Free diet prior to testing me for Coeliac Disease. Going back to a normal diet gives me the creeps! I still suffer, even though I am on a strict GF diet. I am very very sensitive to Gluten and and have very low Vit B12 & Folate levels.
    Thank you for your blogs and the posts you post on FB 🙂 Always very interesting!
    Wish you good health!
    Cecilia x

    Like

    • Dear Cecilia,

      Thank you so much for your feedback and for following my fb page 🙂
      Unfortunately sometimes we are let down by the medical profession due to lack of awareness. But things are improving.

      I feel your frustration and I can understand that you would despise the idea of eating gluten again, but if you want a formal diagnosis it is not too late. If you re-introduce gluten into your diet for 6 weeks, you could be tested again. I know it is hard to eat gluten again when you feel so much better without it. But in that way you could confirm if you have Coeliac disease or non coeliac gluten sensitivity to know how strict you need to be with your diet. You would also be eligible for gf foods on prescription and would receive regular follow up from a gastroenterologist with a formal diagnosis.

      I wish you the best of luck and health with whatever you decide. I know that it is a difficult decision.

      Regards
      Candie

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s