... or even just in Scotland? Some time back I was tested for coeliac and found negative but then I discovered I have partial IgA deficiency, which means the regular coeliac tests may not work well for me. I need to be tested for IgG instead, but I've been trying for months to get my doc to do this, without success. I have given two lots of blood and the first time the lab ignored it altogether. The second time they just did the standard IgA test all over again - totally useless.
A biochemist told my doc that my IgA deficiency "wasn't low enough" (!) so I had to fight my doc to get this IgG test and he is not interested in putting himself out there or chasing the lab to make sure it is done. I'm fed up with this situation and want to go to a specialist who might have more knowledge and show more interest.
Does anyone know of a good gastroenterologist, or any other kind of specialist, who they can recommend as being sympathetic and/or knowledgeable and who might be willing to test me correctly? My suspicion is that I actually have neurologically presenting coeliac, so that makes this more complicated, although I do have gastric symptoms.
If you know of anyone please message me and let me know. Absolutely any recommendations most gratefully accepted....
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I live in London but just a quick thought - down here it's quite easy to get a blood test done without any reference to a doctor (try googling 'Edinburgh private blood test') . You can then take the results to a doctor if relevant. Good luck!
Hi Hil. Yeah, I've been trying to avoid this route, one, because of expense and two, because I don't want docs to have an excuse to ignore my findings - especially if I've paid good money for them! But I'm rapidly coming to the conclusion that I'll live longer and happier if I just do these things myself. I'm sure this constant struggle is aging me!
Unfortunately you aren't likely to be referred to see a gastroenterologist on the NHS without a diagnosis from a GP. If you have abdominal symptoms that might be a route in through a referral but a lot of us on here went to a doctor with abdo symptoms for a couple of decades prior to diagnosis of severe atrophy.
You could try bullying your GP with a suggestion of NICE guidelines (clinical excellence guidelines which your GP has to adhere to).
With hindsight, if I thought it was important, I'd find the money for a private test.
Hi Jacks, thanks for the link - I have already seen that one, but thanks anyway. I do have gastric symptoms, of many years standing, so I probably could get a gastroenterologist referral if I asked for one, but I'm not sure he could help, or rather would. I have partial IgA deficiency, but it might not be enough to convince a gastro to do different testing either. You just can't trust the NHS to do the right thing. If they decide to dig their heels in, you're in trouble.
Can I ask, you say with hindsight you'd find the money to get the tests yourself - can I ask why? Was it something in your own experience with coeliac?
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