I essentially self diagnosed with coeliac, had it confirmed by a private specialist, ie all symptoms abated on g-free diet (after 7 years of hell). NHS previously misdiagnosed IBS and also mismanaged my thyroid disease (that's another story!).
Now i find that under NICE guidelines, the NHS should have tested me for coeliac on the basis of 'IBS'; then later when i suggested a tga test - which came up negative - they should have offered an IGA deficiency test, which they didn't.
Now i've been off gluten several months and cannot go back on just to tick their boxes, so the IGA deficiency test is pointless at this stage - i was off sick most of this year due to coeliac, mismnanaged Hashimoto's and Pernicious Anaemia, so i cannot go back on gluten and be off work again.
Now the NHS thinks the problem is solved by me simply not eating gluten. They won't give referral to gastro to check out how bad the damage is and they won't monitor the associated health risks. As it is a have some sort of nasty peri-anal polyp which has been there for at least 5 years (they said it was 'nothing') and i do have a colo-rectal referral. (But my records don't state that i have coeliac!) They are just not making the link between coeliac and colorectal cancer, etc + i have been denied a medical diagnosis through incompetence, thus i have to pay for expensive g-free foods myself (i already source and fund my own thyroid meds and b12 injections!).
I'm pretty tired of fighting these b8stards. Already fighting a big battle re getting them to fund NDT since t4 didnt agree with me. Have also changed gps 4 x in less than a year. I re-read the NICE guidelines and it does say that if i dont wish to go back on gluten, i should be offered a biopsy.
Has anyone else successfully quoted this info and finally got a definitive diagnosis? ie anyone in my position who refused to go back on gluten?