I'm sharing this here too because I thought perhaps anyone who is trying to get diagnosed, or is wondering if they have coeliac disease, might find this helpful, because diagnosis is often not straightforward. Please excuse me if you've read it elsewhere!
I just read the very interesting thread by Helvella talking about the close relationship between thyroid and B12 deficiencies over on the pernicious anaemia forum healthunlocked.com/pasoc/po... , and how docs seem to miss these related conditions (and the bigger autoimmune picture), and I just wanted to share how I discovered this, painstakingly, for myself and to recommend you never just accept a bad diagnosis as an irrevocable situation, or even a definitive truth – something that is particularly important with any condition that has the possibility of neurological damage attached to it, because there is no back door from that once it sets in. It's not the doctor's brain which is being irretrievably fried; it's yours.
My journey through the autoimmune minefield has been done backwards. Dr Alessio Fasano, the Coeliac specialist, says that Coeliac disease can present first as a neurological condition, long before it shows up - if it ever does - as a gut problem. I believe my illness is a case in point, but not just of Coeliac disease.
When I was diagnosed with Trigeminal Neuralgia I was completely baffled as to how I could have been struck down with it. The only illnesses I'd ever had were gallstones and oesophagitis, although I hadn't been diagnosed with them separately (it was assumed it was just gallstones), not exactly brain or nerve problems.
I can't even remember how I came across the B12 connection now, I think it was TN sufferers discussing taking the vitamin as a supplement and, interested in the possibilities of the relationship they were discussing, I discovered the book, "Could It Be B12?" on Amazon, just through browsing. When I got it and read it I was struck by how many of my symptoms fit B12 deficiency, although there were plenty that didn't. But, interestingly, it was the neurological complaints that fit best: apathy, loss of cognitive abilities, depression. When I came across ONE mention of TN – a rare condition – that was enough for me. I wanted testing. And the tests were 'negative', I was well within NHS guidelines for a healthy person. But, crucially, I wasn't within B12 experts' guidelines.
I did get treatment, eventually, after much fighting, and lo and behold, two months into treatment, the TN went into remission. A 'miraculous' recovery, which my doctor still believes is some kind of bizarre placebo. That's a bit like suggesting you could cure cystic fibrosis by placebo. His belief is far more irrational than my TN being 'cured' by B12.
This got me wondering what had made me B12 deficient. Well, there were a lot of possible reasons, a very low calorie diet with little meat and no dairy for a year and a half, no fats eaten at all during that time, an operation with nitrous oxide, veganism and vegetarianism after the op, but it niggled away at me; it seemed too severe a reaction, given that I was eating SOME dairy, fish and chicken, so I started to look at other possible connections, despite my doctor thinking I was psychologically "damaging" myself to do it.
I tested, and retested, for coeliac – nothing. Finally, recently, I asked for a thyroid test. He eventually gave it to me, again not without an argument and only humouring me, and lo and behold, completely unexpectedly, another piece of the puzzle fell into place: I am subclinical hypothyroid, and, I suspect, have been for many years.
Low thyroid often goes hand-in-hand with low stomach acid, which causes malabsorption, so having no parietal cell antibodies, (which originally led my doc to dismiss my theory that my parietal cells were causing the problem), is pretty much irrelevant and malabsorption could very well be the issue. High cholesterol, another feature of thyroid problems, also explains why I had gallstones, and low stomach acid could explain why I have osesophagitis.
My point is they are all related. There IS a pattern there, despite the fact the doctor pooh-poohed me saying I felt that the whole thing was a degeneration, from my gallstones on. I said that I felt my gallstones had somehow led to my TN, and now it looks like that might well be the case. Not that the gallstones CAUSED the TN, but rather it was a degenerative progression of an unseen illness that is, as yet, still unchecked. I feel ALL of this is autoimmune, and is part of a bigger picture that I may well never be able to see let alone 'fix'.
My TN is considered to be permanent, incurable, as periods of remission are normal, and it will come back again, worse and harder to treat than it was before. But one thing is for sure, without the course of tests I asked for, without my badgering him and all the arguments and tears, I'd still be sitting on the sofa in a stupor of drugs, barely able to function. Other things that are wrong with me would have gone undiscovered until they made too much trouble, by which time they may well have done similar unfixable damage.
It's NOT a coincidence that B12 deficiency, Thyroid disorders and neurological conditions like TN cross over, but there COULD be something bigger, something – I'm guessing – inflammatory behind them all. To go all Lord of the Rings here, a ring to bind them all. Unfortunately it's like looking for a needle in a haystack, as I can testify, full of dead ends, as I can also testify, and definitely not aided by docs who actively do NOT want to engage in the process, or use any imagination in theorising what that bigger picture might be.
Western medicine is afflicted by separatism, one specialist for this, one for that, and they do NOT communicate. That is how my doc can say to me, with a perfectly straight face, "I don't know anything about teeth, my knowledge stops at the jaw" and my neurologist can say "No, you'd need to see a gastroenterologist for that" flatly and finally, when I ask him if he knows of any conditions that might link B12 to TN. There is no integrative medicine, no knowledge of nutrition, despite huge advances in this field showing that the gut microbiome is playing a not so silent role in everything from chronic disease to obesity – a man really is what he eats, in more ways than we can imagine. Until then we will just have to research, and research some more, bundling our diseases together ourselves while trying to tease out the tenuous strands between them as best we can.