My Diagnosis Story…

Janine’s Story

It was 1996, I was 16, I began to get terrible diarrhea, bloating, feeling tired and unwell, losing a lot of weight. My mother took me back and forth to the doctors over the next 10 months. They ran tests but could not determine what was wrong. My mother thought I had cancer. I was referred to the hospital for more invasive tests. I had an ogd (endoscopy) after many appointments. I was told it was to rule out more things as no one knew what was wrong.

At 16 years old I was sitting alone in the corridor waiting for my mum to pick me up from the Ogd and the consultant came up and said you have coeliac disease, go on a gluten free diet, and make an appointment with a dietician on your way out. That was it. At 16 yrs old I was shocked and confused. The dietician appointment was made for 6 weeks away.

It was the days before the internet so my mum and I were bewildered we ended up looking in the local library to get more information about coeliac disease and my mum found information about our local coeliac group. A lovely lady came round with supplies and answered all our questions. She explained how to get prescriptions set up with the gp. By the time the dietician appointment came round we were pretty clued up with information from the coeliac society, investing in their wonderful food directory, and had worked out what I could and couldn’t eat. The dietician just confirmed what we already had worked out.

Adjusting was difficult to begin with…

I was a very fussy eater, I lived on bread and butter sandwiches, ready salted crisps, bourbon biscuits, fries, and vanilla ice cream. Half my normal diet was now prohibited and it was terrible for me. I remember crying as I tried to force down my first gluten free meal of rice and peas. However being gluten free has made me stop being so fussy and expand my diet. I still like blandish food but I eat normal foods now. In some ways coeliac disease was a lifesaver for me in that respect. Within 2 weeks of starting a gluten free diet I was putting on weight and felt well again.

In 1997 there wasn’t the array of gluten free foods in the shops and the various gps I’ve had over the years have been great at helping me sort prescriptions for gluten free products. But the coeliac handbook was invaluable when I was starting out.

Over the years I’ve had periods of being unwell. I was back at the gp regularly and fobbed off with diagnosis of stress, chronic fatigue and depression- however after years of this I was diagnosed with various vitamin deficiencies. Caused by my coeliac disease even though I follow my gluten free diet. The awareness of this from most doctors is nil.

I now work as a nurse and while awareness of coeliac disease is better, people still struggle to understand the severity of gluten free foods not being available to those with coeliac disease.

The main problem I have is needing to cook everything from scratch. I’ve got very good at adapting recipes into gluten free versions. The availability and quality of gluten free products is amazing now in shops and even eating out has improved recently.

My advice for newly diagnosed…

My tips for those starting their journey:

  1. Information – learn about your new diagnosis, understand how gluten is harmful and what foods it’s in.
  2. No food is off limits, you may have to look around for the gluten free alternatives, or make your own but you can still have the things you want. You just have to be a bit more creative.
  3. Accept and access help from dieticians, support groups, gluten free companies (free samples can be sent out), your gp.

I’m now over 20 years from my diagnosis and while I’ve had times I’ve slipped up (and regretted it) it’s not a struggle. It just takes a bit of planning and creativity to organise my meals. I don’t even see it as a problem anymore. My coeliac disease and gluten free diet is a part of life.

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