My Coeliac diagnosis and recovery.

I was diagnosed with Coeliac Disease in 2004 when I was 40 years old.

As a young adult I always seem to be thin and anaemic, the doctor would just prescribe me with iron tablets and tell me to eat more, after a while I stopped with the iron tablets as they just bound me up and just carried on regardless. I can remember times when my tummy would blow up and I would look like I was 5 months pregnant, but I just put this down to something I ate and later on when I heard of IBS I thought I must have it. I also remember suffering from terrible flatulence – so embarrassing.

There was a time, in my thirties, I started being sick when I ate cheese and creamy things, I went to the doctor and he prescribed me with antacids, I took these for a month and then didn’t eat anything creamy from then on.

I was quite an active person, I loved cycling and I got into hill walking, but I couldn’t understand why I would get so tired and out of breath although I was eating well and in particular I was eating whole foods for slow release energy.

Then I started getting Bronchitis, I went to the doctor and he would ask If I smoked and I when I said I’d never smoked he would ask if I was sure, then he would say I was too thin and I should eat more! I suffered bouts of Bronchitis for about five years, each time it would get worse and each time when I went to the doctor he would ask me the same questions. Then finally, I was due to go on holiday and I had had such a coughing fit that I must have popped a rib or something as I could barely move with the pain and when I was coughing I was so scared at times as I thought I wouldn’t catch my breath and die. By this time antibiotics were not doing anything.

The doctor sent me to hospital to the day centre to have a complete check-up. I had chest x-rays, and ECG, loads of blood tests and asked loads of questions about my history and any family health issues. My blood pressure was so low and when my blood count came back as really low, they started to think I must have internal bleeding, I said that it’s always been like that.

Finally, the senior registrar looked at all the results and decided that I didn’t have internal bleeding but he was sure that there was something else wrong so he took loads of other blood tests and said that I should be OK to go on holiday, it was a cruise and the doctor said that if I had any problems that they have good medical staff on the ships.

A month later I was called back in hospital for the results of my blood tests and I was told I had coeliac disease. I was told to carry on eating as usual and I was to have a gastroscopy in a couple of weeks to confirm the results.

I had my gastroscopy and it was confirmed that I was a coeliac. I was given a leaflet and told that I mustn’t eat gluten. Wow!

I came out of the hospital in a daze grasping this leaflet, what now! I read the leaflet, it explained what it was and a brief description of where gluten is found and at the time I thought ‘what can I eat then’?

The leaflet recommended that I join Coeliac UK as they would be able to help. So I did and they sent me a membership pack that included a book which was to become my bible – ‘The Food and Drink Directory’. It was my saviour.

My recovery

It took a good two years for my gut to recover to back to normal, but even after a couple of months on the gluten free diet I started to feel so much better. I stopped getting Bronchitis, I had so much more energy and didn’t get tired all the time and I didn’t suffer from those embarrassing moments! I even managed to put on weight!

I always say this, but for me. Life really did begin at forty!

My regular check-ups

For the first couple of years I would get an appointment to go back to the hospital’s gastro department for blood test checks and to see a nutritionist. Now, they have a dedicated Coeliac Clinic which they run and last year my coeliac nurse, Sue, said that as they are getting so many more clients and that as I’m stable, would I mind just going once every two years. I was very happy with that in many ways, once that I was obviously comfortable with being a coeliac and didn’t need checking up on and two that at last people are being diagnosed and hopefully won’t go through what I had for so many years.

My hospital is Southend University Hospital and it is NHS and I am indebted to all those who have helped me. Can’t say the same for my doctor though!

Click here to take you to the Coeliac UK websit


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