Hi, this is a kind of long preamble but please bear with me while I give a little background - 10 months ago I was diagnosed with Trigeminal Neuralgia, a rare degenerative neurological condition. I discovered B12 deficiency quite by chance and fought my doctor, hard, to be tested for it and then treated, although my test results were considered to be normal, if in the 'grey zone'. Lo and behold, two months after treatment started, the B12 has indeed 'cured' the neuralgia, as in it is now relatively pain-free, although I am still on very strong anti-convulsant medication. But this medication was unable to make me pain-free during the whole ten months progress of the illness and yet a mere vitamin did.
With the B12 deficiency 'proven', it got me wondering why my body had developed the problem. I had long felt that my gastric issues of 15 years standing had to be connected. I had gallstones removed 2 years ago and yet my gastric problems have got worse. I now have chronic oesophagitis and constipation. I bloat so severely after meals it actually hurts to sit down and it often forces acid up into my mouth. The amount of foods I can eat seems to shrink every day. I also have other things that feel like autoimmune reactions, like chronic urticaria, chronically itchy skin, eyes and genitals. Dry, brittle ridged nails. Chronic insomnia, problems with anxiety and depression. It goes on and on. While they are all treated disparately by doctors they feel connected to me. Like a degeneration of sorts.
While preparing to see my doctor for my next B12 shots I was making notes for tests I wanted him to do - Coeliac being top of the list. When I looked up what I should ask for I read about IgA testing and it rang a bell. I dug out old blood tests and sure enough there was an IgA test – I assume from a previous time I had asked to be tested and when he'd told me the results were normal. What's more, it shows that I WAS deficient, at only 0.73 L when the range is 0.8 upwards. It has even been highlighted in bold to show it's low and yet my doctor has passed this as normal. It isn't normal, it's deficient, isn't it? It's below the norm, therefore deficient.
I've even discovered that this isn't the test he should have done, and that I quote, "Some people with Coeliac disease do not make the usual Coeliac disease antibodies. This is called IgA deficiency. When the laboratory is measuring your antibody level they should also check your total serum IgA to detect IgA deficiency. If you are IgA deficient your GP will need to test you differently for the condition.
NICE has issued national guidance on recognising Coeliac disease. They recommend that a different test for Coeliac disease (an IgG tTGA and/or IgG EMA test) is used if a person is confirmed as having IgA deficiency."
Am I wrong or should this have been picked up as a definite signal that I might be one of these people? This was two years ago and I feel really angry that I've been allowed to walk around like this and possibly develop Trigeminal Neuralgia, an incurable degenerative disease, just because a doctor didn't pick this up.
Can anyone tell me, am I barking up the wrong tree here or do I have cause for worry and/or complaint???
P.S. I should just add in the results for this that MAY be related (sorry, I'm very ignorant about what's relevant to coeliac disease):
IgA ... 0.73L
C-Reactive Prot .... <1
Anti-tTg IgA (DS2) .... 0.14 (the range for this one is given as 0.1 - 5.0, so this is just scraping in and no more too)
If anyone can tell me the significance of any of these results, I'd be immensely grateful