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Lynz-UK added a topic in Gluten-Free International Room (Outside USA)Diagnosis...or Lack Of One...!Hello everyone, I just found this forum through Google )
I am from South London, England, and have been unofficially Coeliac for almost two years now. I say unofficially...
Two years ago I started getting 'the runs' too often to be a tummy bug. The locum doctor I saw, as efficient as ever, said it was just an ongoing stomach bug (yeah cos tummy bugs go on for four weeks...) but nevertheless after me pushing sent me for a blood test. On the test forms we get here the doctor ticks a box for the kind of thing to be tested for, well I went home and ticked all the ones he had missed just in case there was something else there lol.
In the meantime I kept a food diary, as when I was diagnosed with IBS my proper doctor told me to keep one to see what was making it worse and better. I went on being ill then fine then ill again until Easter weekend 2006, when I decided enough was enough, damn the doctors, and went on netdoctor to see what my symptoms could mean. When it came up with coeliac, I checked my food diary and immediately noticed - runs after pasta, fine after potato, ill after pizza, pies, fine after roast dinner, etc etc. It all made perfect sense. I marched up the doctors and had a right go at anyone who would listen given they had missed testing me for this, only to find out they had done a blood test for it, one of the ones I ticked the box myself for, and it had come back showing I was strongly coeliac FIVE WEEKS AGO! Cue more yelling. I then cut gluten out for good.
Anyway, I got referred to gastroentology unit and told I needed an endoscopy. I had read online that I was meant to eat gluten for six weeks prior to this. Now I only weigh 7 and a half stone which is pretty tiny for a 22 year old, and I weighed even less then due to the coeliac issue for two odd months. So I says to my specialist 'not to be funny but if I eat gluten again you'l have me in hospital on a drip to get some nutrients in me, cos I'm pretty tiny!' and he said 'no we can't have that your BMI is almost dangerous. well just don't eat gluten and the test will show your coeliac anyway. I'll put it in your notes'. They booked my test, I waited six months for it, and then on the day I'm on the bed in my wonderfully flattering gown waiting to be wheeled in and they say 'have you eaten gluten for six weeks?' 'er no I was told I didn't need to'. 'oh, well go away and eat gluten then come back. we can't do your test today'.
This was a year and a half ago. I still haven't been diagnosed, as I can't bear the thought of eating gluten for six weeks. I know I will lose a tonne of weight and feel like crap again. Also how the heck do I hold down a full time job if I have to spend half the time in the loo?! The blood test results are still sitting on my record showing I'm strongly coeliac, and anyone who knew me at that time will vouch for the difference losing gluten has made - no longer is my complexion grey, my ribs no longer stick out, and I can stay awake for more than 8 hours! My depression is also nearly a thing of the past.
Does anyone have any information or advice at all for me as to how I can get the NHS to understand me? How can there be 'one rule for everyone?' I have one doctor yelling at me cos my BMI is still low, and another telling me to get the runs for six weeks and get even skinner! I don't even care about getting food on prescription, I just want that little tick that will get people to take me seriously! Has anyone else had any similar issues?
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