50 years to get a diagnosis?

Fifty years

Following on from my previous blogs ‘It was a lonely existence’ and ‘Working in hospitality with food allergies’, I would like to share my experiences along the road of 50 years to diagnosis.

After many years of seeing various GPs and getting nowhere, I met a lady in 2008 at Olympia, London.

I had been studying nutrition to try and work out why I was having such problems with eating, and my specialism had become allergies. It had been brought to my attention that there was this exhibition dedicated to allergies, so off I went on the hunt for as much information as possible.

Amanda was there on the stand representing patients with Eosinophilic diseases. At the time it was called FABED, Families Affected By Eosinophilic Diseases. Now there is a Charity called EOS Network Charity who are working globally to help people like me, and there are a lot of us.

I went home from the exhibition with a bag full of goodies, some freebies, all kinds of ‘freefrom’ snacks, some rice-based fake cheese, gluten-free pizza bases, and leaflets….lots of information leaflets.

Armed with my new-found information and the documents to back up what I had been experiencing since childhood, I went back to the GP, expecting to finally get some help.

How wrong I was!

“You can’t possibly have THAT, it’s too rare!” I was, however, sent for a barium meal, not knowing that would not give any answers. EOE can only be diagnosed by biopsy. We also now know that it is not that rare.

Still, I kept going back, again and again. Time after time I was told I had heartburn, indigestion, ‘a weak sphincter’, ‘it’s all in your head’, and referred to mental health. The mental health team told me there was actually nothing wrong with my mental state, except anxiety because the GP was not listening to me. Back off to the GP again, with the report saying he needed to listen to me!

Years went by.

Round the cycle again we went, by which time other people were noticing.

When we moved to the next town we had a new GP, and I got all the same blurb again. followed by different prescriptions for every ant-acid and Proton Pump Inhibitor known to medicine. Omeprazole, Ranitidine, Rennie, Tums, Gaviscon, Esomeprazole, all the ‘ozoles’, to name but a few, oh, and a few antidepressants thrown in, because, you know, ‘it was all in my head’.

All I could do was carry on regardless, in pain, only eating little and often, high calorie, unhealthy foods, or mince and mash with lots of gravy and a glass of water beside me, because that was all I could swallow.

Next came the move across the country, to Gloucestershire, so we had to find another new Doctor.

Here came what I thought would be the answer, a Surgery who had heard about EOE, and had some clue about what it meant.

Then came the endoscopy with biopsies and, BINGO, I was diagnosed with EOE. There were so many eosinophils that they stopped counting, there only need to be 15 per High Power Field to confirm a diagnosis.

There we had it at last! The confirmed diagnosis of what I had been telling various GPs that I had been suffering the symptoms of for years.

I was so excited to actually know what was wrong with me.

There was hope that I would now get the help I needed.

There have been almost 10 years since that diagnosis, the saga continues, and you really couldn’t make it up.

What came next will wait for next time.