I have suspected I have coeliac disease for many years, but I have been tested several times and am always negative. It was in one of the later tests that I discovered I had partial IgA deficiency which meant the previous testing was suspect. After a long, hard fight I succeeded in getting IgG testing, but that was also negative so I gave up. That was about 4 years ago.
Since then my health has steadily deteriorated, with more and more aches and pains, extreme tiredness, apathy and bad depression. Nowadays if I take any drug it is almost a given I will have an allergic (skin) reaction to it. It always feels as if I have an underlying cause that connects everything together, but that may just be wishful thinking on my part!
Recently, after yet another drug sensitivity reaction, I was given steroids - the first time I've ever taken them - and found them wonderful. All my aches and pains went away, even longstanding 3 year old tendonitis. More importantly I felt wonderfully upbeat, and realised just how low I'd sunk over the years. My normal state is barely functioning; I survive rather than feel alive. This made me reconsider Coeliac Disease again.
I am now considering one of three options:
1. Go to the doctor and ask for another IgG test, just in case anything has changed. If this is negative once more, push for a gut biopsy. Or...
2. Just go gluten-free and see if things improve. If they do, stay gluten-free forever and accept that I probably have Non-coeliac Gluten Sensitivity rather than Coeliac Disease, so I would never be diagnosed anyway!
3. Get the HLADQ2/8 gene testing and if I have the incriminating gene accept that I have an issue with wheat and go gluten-free forever.
My quandary is this. I don't love doctors and I don't like invasive procedures. I have bad acid reflux and oesophagitis from years of gut problems/IBS, so my oesophagus is quite badly damaged. I am plain frightened of the idea of a biopsy, so my question is this - is it worth the effort?
I would prefer to have a diagnosis, because I know from bitter experience that doctors will not take anything you say seriously unless you have a formal diagnosis, also I live on a very low income and cannot really afford a gluten-free diet so prescriptions would help, but that said, is pushing for a biopsy just a foolish way of giving myself more unnecessary pain? How bad is a biopsy? I would really love to hear from anyone who has had one regarding just how gruelling they are, and if they personally found it worth it. Also I would like any advice on whether I can get gene testing on the NHS, particularly in light of the fact that my oesophagitis is a genuine issue with sticking things down my throat. Thanks!
P.S. If gene testing is not available on the NHS, any advice on a reliable place to get it would be most appreciated. I am so sick of this I am prepared to spend my scant savings on a test just to rule this out once and for all!