Hi, I have a borderline partial IgA deficiency. Because of this, I asked my doctor to be retested for coeliac disease using the IgG tests rather than the IgA, as recommended by the Coeliac society, and the NICE guidelines, and, and, and...
After a BIG fight, and his consultation with a biochemist who said I didn't need it, my doctor agreed to retest me with the IgG test. That was six weeks ago. Six weeks later, today, the test hasn't come through and my doc assumes that they never did it.
It turns out there is no place on the bloods form to order the test. He just put it on as a note in the little box for the 'extra details/comments' that is provided. We retook bloods and this time he says he has put it on the form (where?) and in the box again but when I said, "Well, we'll get it this time" all he could answer was "Well, I've done everything I can" which I found far from reassuring.
My question is this, is there anyone here who suffers from IgA deficiency and had to have an IgG test? How did you get your doc or the labs to do this efficiently, especially if there isn't actually a place to order it on the form?
I still can't believe that there is no way to order it and the slap-happy way this is being handled. Anyone got any suggestions as to how to make this happen? I'm in Scotland, by the way, so rules can be a little different.
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Hi there, as no one is in the same situation are you aware of the coeliac gene test? basically coeliac have either the HLA DQ2 or HLA DQ8 gene and it might be worth you pursuing a gene test as a diagnosis. I know we have members who have given up gluten then rather than reintroduce gluten have had the gene test.
I have to warn you that you will have to pay for the test.
Here's a previous post with a very informative reply by Advance nutrition explaining about the genes. They also run the Cyrex labs where you can get a gene test.
That's a potentially interesting idea, Jerry, but I'm afraid it might be a waste of £100 as I doubt the doc would take it seriously since it doesn't prove anything other than the fact you have a genetic predisposition. I also feel resentful that the NHS can do the IgG testing but don't seem to be a*sing themselves. Damned if I'll do their work for them!
I had a look on the thread and on Cyrex itself but I can't find a link to the gene testing. Don't know if I'm looking for the wrong thing. I've tried under the gene numbers and under 'gene testing', but no joy. I suspect you're not allowed to give a link? But could you tell me what I should search under on the Cyrex site, if you know?
I don't THINK the doc was being obstructive, although he wasn't helping reassure me either! There genuinely didn't seem to be anywhere for him to request them. He said quite specifically that they weren't on the form. But let's face it, the NHS keeps everything so hidden from Joe Public it makes it difficult to know what you're dealing with!
I'm getting worn out, eating wheat. I feel like it's doing me wrong, I can't describe it any better than that! I have to make sure I eat enough of it before the blood tests and I find that hard since I don't normally seek it out. Even more worrying is the fact that I've had chronic constipation for years but about ten days ago I went the other way, quite violently. That's never happened to me before. Might just be some stomach bug or something, but maybe not. What's even odder is I have recently been diagnosed with hypothyroidism and constipation is the norm with that, so for me to NOT be constipated is quite a feat. A worrying feat!
Anyway, I thank you for the gene testing idea. If push comes to shove I may just go for it, for my own peace of mind if nothing else. If you could give me a clue how to track it down I'd be grateful.
I would ask your GP to refer you to a gastroenterologist and talk to them as they have seen it all before as CD is on their spectrum. And this is what I would do before having private tests.
And good luck as you have a lot going on which must seem like you're chasing your tail, all very frustrating for you.
As you say the rules can be different in Scotland - this is likely down to money (surprise eh?!) and the agreements with the GP commissioners (CCGs) on what to fund. Some tests are considered to be consultant only and this could be the case here - so its not funded unless ordered by a consultant and it sounds like its your GP doing the test ordering - so if you have a consultant ask them to do it and write a complaint to the complaints manager for the NHS area you live in with a copy to the Medicines Management lead - if you do a search for CCG in whatever area you come under you will find a website for the CCG and this information will be on there - if youre struggling to find it your own GPs website should say which CCG they are part of. As a final straw you can fund tests yourself from for example Genova Diagnostics.
Thanks, Thurgolady, that's really useful information. If I need to, I'll request a gastroenterologist consultation and see if I can get him to do it. Because I'm on the cusp though, that will NOT be easy. Hopefully, if I just keep on at the doc I will be able to badger him into making more of an effort.
I always feel like I'm blundering about in the dark with the NHS, and you never really know whether the doctor is just fobbing you off or he is genuinely hitting an obstacle himself. You want to stay on good terms with him, but at the same time you need to be assertive about your health. Sometimes I feel like a limp dish-rag when I come out the surgery, trying to get what I want while keeping my doc's ego happy. It's not easy!
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