Good news, I’ve had my gut biopsy and I can now be properly gluten free.
As I mentioned in my last post, unfortunately you have to ensure that you continue to eat food with gluten in to make sure that you don’t have a ‘false negative’ when being tested for coeliac disease. This is really important (https://www.coeliac.org.uk/coeliac-disease/getting-diagnosed/) but now I truly understand what it is to be ‘glutened’.
Once I’d had the blood test I instantly cut gluten out for a bit and it was wonderful – I’d not felt that good for years. No constant diarrhoea, no getting up in the middle of the night to go to the loo, no rushing to the toilet in the middle of the day and, as I now understand, no feeling constantly tired.
But then as instructed by coeliac.org.uk and my doctor I went back to eating some bread and food with gluten in it until my biopsy. And it was then, that I discovered how bad I’d been feeling for years and years…I really didn’t know that the feeling was anything other than normal!
I’m glad to say, just over 1 week after my biopsy and I feel so much better again.
Now don’t get me wrong, the biopsy process is certainly not the most pleasant – take the sedation option if it is given to you. I had no idea what was going on which was much better so do not remember the camera being put down my throat. It did prove to be slightly tricky though when the nurse decided to tell me all about the next steps – whilst I was still coming round. I have no recollection of this but luckily my wife was there to fill in the gaps!
In the same week as the biopsy I’ve also had an appointment with the dietician which was very useful – I wasn’t aware of the difficulties in absorbing Calcium and Iron so need to adjust diet to take this account. Good news as I love cheese, any cheese, the smellier the better. Added to that I also need to make sure that Vitamin A & D levels are higher – it looks like I’m low in those too.
And following on from the dietician I then had a bone density scan to investigate my calcium intake and check my bones aren’t too brittle. This was all news to me, yes I realised that by cutting gluten out of my diet would help my stomach but never realised that I was at risk of other side effects such as this and a lack of vitamins and minerals being absorbed.
So, on a serious note, if you’re not sure about whether you have coeliac disease – get it checked out quickly with a blood test from your GP, don’t hang around as there are all these other complications that can happen.
Now I’m waiting for the formal confirmation that I have coeliac disease (even though I know I do). It does seem ridiculous that when we have a cash strapped NHS in the UK I still have to go through all the testing when the blood test is positive and my symptoms have improved so much – still that’s why I’ve paid my national insurance for 22 years. Hopefully I will also hear about the bone scan soon and with any luck, everything will be OK. All I can say is that the NHS and the Royal Surrey Hospital have been great so far.
In the meantime I’m off to Cuba on Thursday – the first foreign trip having been diagnosed, I will let you know how it goes!