My story of life with coeliac disease

People often ask about my story, when I was diagnosed, how do I cope and so on. I thought I would start by telling my story and then open the way for you to share yours.

When I was born I weighed just 5 lbs but seemed healthy enough. All was well until my mum started to wean me onto solid food. Back in 1960 often the first food that was given to babies was rusk soaked in milk. Unfortunately for me it was not the ideal diet!

Diagnosis

I began to lose weight, cry all the time, and generally failed to thrive. I ended up in hospital at the age of 4 months, a very sick little girl.

My stay lasted for almost three months and eventually the diagnosis of Coeliac Disease was made. My mother was told to put me on a gluten free diet and given an address in Ireland where she could send for some special flour.

Sadly just five days after I returned home my father was killed in a motorcycle accident. My mother wrote this heart rending poem about that period of our lives.

My story continues - School years

Fast forward to just after my fourth birthday. On a regular visit to the doctors it was suggested that I may have outgrown the Coeliac and she was told to try me back on a normal diet. (It is now known that this does not happen. You have it for life).

My mother did as instructed, and I was introduced to all the foods that I had been denied before.

I thought all my Christmases had come at once. Cakes, biscuits, pies were no longer forbidden. I relished in all the new tastes and textures. REAL bread tasted so much better than the "cardboard" that I was used to, which came out of a red, cylindrical can! I could go to my friends birthday parties and actually eat the food. I felt one of them instead of an outsider.

However, it wasn't long before my health deteriorated and the coeliac disease symptoms returned. I began to look like a starving refugee with a pot belly and skinny arms and legs. I had constant runny tummies and everyone commented on the awful smell that lingered around me.

More symptoms appeared, I suffered from shortness of breath, and aches and pains. Some days I found it too difficult to hold the pencil at school to do my writing, because my wrists ached so much. Eventually we gave up and went back to the doctors.

On this visit our normal doctor was away and a locum was on duty. He insisted that I was put back onto the gluten free diet at once. By this time it had been decided that coeliac was for life, you couldn't outgrow it.

It was very difficult giving up the food I had become used to.

Going back to gluten free food felt like I was being punished for something I had done wrong. I grew quite resentful and was extremely jealous of my siblings and friends.

To make myself feel better, I ate lots and lots of gluten free cakes and biscuits. And although my health improved I put on too much weight!

Senior school photo - I am in the front row, with glasses

My story continues - Adulthood

I got used to the diet and good health, although I did suffer during both my pregnancies like many other celiacs.

After giving birth to my daughter at age 20, it was again suggested by my new doctor that I may no longer have coeliac disease. This time I had more knowledge and wasn't prepared to just take his word and try normal food!

The doctor persuaded me to have a jejunal biopsy which involved swallowing a tube and having a small piece of my intestinal lining removed for investigation under a microscope. Not an experience I ever want to repeat! I was, however, delighted when the results came back negative for coeliac.

I promptly tucked into a sausage in crisp French bread and enjoyed it tremendously. For about 30 minutes. Then I was violently ill and stayed that way for around 3 days.

This did not make sense and I was confused. I vowed to leave gluten alone for ever more. I would rather give up the nice food and feel well.

I later discovered that the test should have been performed after I had been eating a normal diet for around 3 months. As I had been on a gluten free diet, my villi in my intestines had recovered and therefore the biopsy gave a false negative.

I have discovered that tasty alternatives can be made for normal meals. I no longer even miss the food I cannot eat. In fact I can't even remember what it tastes like! I now eat tasty, gluten free meals and don't worry about the things I can't eat.

I have met other Coeliac sufferers throughout my life and have been all too pleased to pass on the tips I have learned. The gluten free diet can be overwhelming when you are first diagnosed and it all seems terribly complicated.

Advice and support from someone who has been there, done that and is enjoying life can be invaluable.

Telling my story, and writing this website, are ways for me to pass on what I have learned and experienced. I hope it helps.

You can read other people's celiac stories, and share your own, on my celiac disease page.




 


  

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