I’m at that in between phase – the blood test is positive and I have been diagnosed with coeliac disease but it has not been fully confirmed yet.
Unfortunately the blood test is only the first phase of diagnosis and I now need to have a gut biopsy.
Since diagnosis through the blood test I’ve cut out gluten from everything – bread, pasta, cake, biscuits, BEER through to things I never knew even contained gluten such as Soy Sauce. As a result my symptoms are so, so much better – better than the last 22+ years which is amazing and something I never expected by cutting out gluten. But, this is the wrong thing to do, I have to keep on eating gluten for the time being.
I’m not concerned about the gut biopsy although I’ve been told it’s not the most pleasant procedure in the world – one description likened it to having lego bricks forced down your throat! What is more annoying is that I have to continue eating foods with gluten in them until after this happens – otherwise I’m in danger of having a false negative in the test i.e. it says that I don’t have coeliac disease when in fact I do. Unfortunately my GP was not clear on this point but luckily through investigating the coeliac.org.uk website this has been made clear…link is at the bottom of the page but be aware.
It has taken a step change in my diet, I’ve had to start reading details of what is contained in everything (which I never did previously) and it has meant that I need to be organised and aware of all foods. This will all be good practice for the rest of my life, but, for the time being, I can’t cut it out quite yet.
Over time I aim to document this change in my life and how that may be able to help other people new to this world of coeliac disease, hopefully this will be of some use to anyone that reads this.
In the meantime I am due to see a gastroenterologist next week for initial consultation and hopefully get an appointment in the near future to have the biopsy. It’s frustrating, but after 22 years, what’s a few more weeks? I will then be able to move on, do this properly and cut out all gluten for good.
For more information on diagnosis see: https://www.coeliac.org.uk/coeliac-disease/getting-diagnosed/gut-biopsy/