I suspect I 'm desperately clutching at straws here, but because I am trying to steel myself to ask for yet another coeliac test, which I fully expect to be negative, and then push for a biopsy I SO do not want to do, I dug out all my old tests to see how many I'd actually had.
I found that I've had three standard tests then, finally one IgG test when I discovered I had partial IgA deficiency. However, I did notice an interesting thing, my negative results were climbing.
My first test was in 2013 and was 0.14, well below a positive result! My second test was a year and a half later and was 0.25. My next test was a month later and was 0.38. The IgG test was very vague and just said I was <1.0, so doesn't really tell me anything, other than it was negative!
But that 0.14 to 0.25 to 0.38 made me wonder, especially as the last test, taken in April 2015, had jumped that much in a month.
Does this have ANY significance, does anyone know? Or is the fact that they are all negative all that matters? Do the tests typically vary like this anyway?
I've recently found myself wondering if my natural disinclination to over-indulge in wheat perhaps led to me having lower results - twice a day is about as much as my body can stand before it gets really poorly and I have to take a break from it - or is this so much horse doodah? I'd be grateful to hear from anyone who knows anything about blood test results as to whether anything useful can be constructed from this. Thanks!
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You sound very frustrated and probably with good reason. Not knowing how to resolve health issues can be a minefield of trial, error and hope.
Sorry - I'm not too good on the specifics (especially as there are many variations in the ranges used between hospitals!).
I would normally advocate not going gluten free until bloods have been taken - but in your case these have all been done several times over.
You say that you are disinclined to eat gluten, but have you tried being completely 100% gluten free during any time period since 2013? If you haven't, then maybe you should consider giving it a go for a few weeks to see if you have any improvement in your symptoms. It might possibly be more worthwhile than putting yourself through another barrage of tests?
My logic? You could be someone who has NGCS - Non Coeliac Gluten Sensitivity. It's only just beginning to be recognised by the wider medical community but I seem to remember that the scientific community has met at various conferences and agreed it exists.
Good luck, I hope you find the answers that you are looking for.
Hi Regal, I actually just put an appointment on the docs today because I am just so fed up with not knowing, and all this endless conjecture and going over the same ground. I don't know if he'll insist on retesting, and that might be a good idea, but I'm going to ask for a referral to a gastroenterologist - I've never seen one - and see if I can get them to do gene testing. It would be useful for me to know if I have the gene type because then, biopsy or no, I'd know there was a good likelihood I at least have NCGS. If the test is negative for the gene/s then I know I have neither condition and I'm free to eat what I like and need to look elsewhere for my health concerns. It would save me all this endless revisiting and let me move on. But oh, I SO don't want to do it....
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