It suddenly struck me last night that having a low white blood cell count could cause a masking effect on diagnosing coeliac disease. As it is the B-cells (I think!) that produce antibodies and B-cells are produced by your white blood cells, isn't it the case that if you have a low white blood cell count then your body might not be physically able to turn out the requisite antibodies to register on a blood test? Likewise, couldn't your body be effectively churning out antibodies - at the level your low count permitted - but that might not look like an autoimmune reaction as far as blood tests were concerned - them being calibrated to 'normal' functioning humans with healthy immune systems (over-healthy, arguably)?
It SOUNDS logical to me, but what do I know? Not a lot or I wouldn't be asking this question! Anyone here have the knowledge to know if this is the case, or have any of you heard of a low white blood cell count causing problems in diagnosis, or anything else coeliac-related, for that matter? I'd be thrilled to hear any theories, or better still hard facts if you have them. Thanks!
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Chancery
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I don't know, but there must be some reason why in all autoimmune disorders some people come up negative in tests, despite having the condition, and also sometimes get a positive result and sometimes negative in repeat testing. Plus an endocrinologist told me that even with antibodies (thyroid) it wouldn't mean you had the disease?
A endocrinologist told you that, Frodo? Now THAT'S weird. That could just be an extension of the thinking that says having Hashimoto's disease is okay as long as you are not hypothyroid, of course. That's NOT a popular line of thought amongst sufferers though, and I have to admit it sounds downright barking to me. Antibodies = problem so obviously, as far as I am concerned, I can't see why some doctors are so resistant to it. Especially as I've never seen any research backing up their position. That doesn't stop some docs though....
But yes, you're right, a lot of people do have repeated negative tests and are then found to have the condition. Sometimes it's so glaringly obvious they have it, even doctors can't deny it, in spite of the almighty blood test saying otherwise.
I realise this is the coeliac group, but on thyroid again - even when something is glaringly obvious they can and do ignore obvious symptoms if the blood tests are negative: there was a video a while back of a TV interview with a woman whose hypothyroid symptoms were so extreme she was in a wheelchair with a prop holding her head up (having been a fit, agile walker), huge weight gain and presumably other symptoms, but because the blood tests repeatedly said no, she was not treated. The interview didn't make clear how she eventually got her diagnosis and treatment, but she did, and improved dramatically on the treatment and appeared back to normal in the interview.
The most usual response I've found is that symptoms which are not explainable by blood test results are being caused by 'stress' and in the case of digestive issues like undiagnosed coeliac or gluten sensitivity, it's 'irritable bowel' caused by 'stress'.
Or CFS - which I've just read may also be auto immune according to new research!
Stress, what would they do without it? Especially for women. I sometimes think the invention of the antidepressant was the worst thing that could happen to doctoring; it's like there's a fall-back position for them: 'Oh, it's stress - have these antidepressants'. They can give you a pill, they're happy.
Only a day or two ago I took part in a conversation on the pernicious anaemia forum with a woman who actually had PA, and got the B12 injections (3 monthly), but who was getting weird neurological symptoms and felt convinced she wasn't getting enough B12. Her doctor, bless her, told her she couldn't have more B12 because her symptoms were not "proper neurological symptoms" (I kid you not) but she should take more Carbamazepine.
I don't know if you know the drug, but it's lethal - more side effects than you can shake a stick at, many of them life-threatening. I take the drug myself and couldn't believe this poor woman was being told by her doctor that she couldn't have more vitamin but she could have more awful drugs, and all this because she had the audacity to have "not proper" neurological symptoms - even although she was diagnosed with a recognised B12 deficiency.
I don't know where doctors get this idea that illnesses read the same textbooks as they do because, news flash, they bloody don't.
That's a thought, Penel. I did think of running this past my doc, just for laughs (he just loves me coming up with new theories - not). He knows the biochemist at the blood lab. I might convince him to ask her for me. Failing that I'm going to have to keep trying different word searches on PubMed and Google.
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