Beware the diagnosis, my son!

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.

6 Replies

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  • I sympathise!

    I have a similar tale, of at least 5 inflammatory diseases, all making me ill but not one medic has joined the dots. I have RA, have had endometriosis, have coeliac disease, TN, a breathing disorder they're waiting to diagnose (but potentially interstitial lung disease), depression (theory suggests it's an inflammatory disease). I've had aneamia for 30+ years, Raynauds, fatigue and sometimes abject misery. My rheumatologist suggests it's all in my mind! He see's only the RA and hasn't linked all of those diseases as one linked problem. When I see him again in a few weeks I'm going to politely suggests he stops looking at the bloods and starts looking at me. That's going to be a fun conversation!! I do know he's restricted by NHS resources, but enough is enough!

    There's a interesting book for sale on Amazon: The autoimmune solution by Amy Myers. It's written by a medic who suffers with Graves disease (or suffered, past tense). She specializes now in Functional Medicine (obviously in America) and treats people like us who have many linked and interlinked inflammatory diseases. It done by diet and supplements and she seems to get results. I'm starting it today, as I'm sick of being sick, of letting one or other diseases stop me living a life. I don't think it will cause me harm, as I'm already gluten and dairy free, it's just taking out other toxins for 30 days then re introducing stuff as you can tolerate them. I does get a bit 'foil hatty' toward the end, suggesting you have filtered air throughout your house, and put in water filtering systems........but if it works, it's an individual choice.

    I hope you get some answers, it's a terrible situation to be in when no one sees the whole picture. It's either ignorance or arrogance on behalf of the medical profession. it's time there was a specialism in multifaceted inflammatory problems. Not much chance, unless someone knows better!!

    Take care

    SDM

  • Hi SDM, first can I say - you have TN?! I'm amazed, and thrilled, although I know you aren't. I love when I meet another TN sufferer - we're so rare. And it cheers me up that I'm on the right path. Can you tell me when you got it, in the timescale with your other diseases? Although I'm not entirely sure it's helpful to know, since the one thing that being on forums shows me is that humans are wonderfully variable when it comes to disease. Something I wish doctors would learn. I swear to God sometimes I'd like to throw their computers and their blood tests out the window.

    It always reminds me, without fail, of a family anecdote of when my dad was out fishing with his brother and he wanted to move the boat to an area where he knew the fish were most likely to be. My uncle didn't want to go because he had consulted his fishing guide and it said the fish wouldn't be there at that time of year. My dad retorted, "Well, the fish don't read those books, Joe."

    I think medicine is exactly the same. Diseases don't read the guidelines; they don't follow the rules or the 'average', 'normal' presentation. They're diseases not junior doctors.

    You HAVE had a really rough time of it. You're like a walking autoimmune nightmare - my heart goes out to you. With a medical history like yours, you would think bigger picture was just screaming out for attention. How can anyone believe one person could have so many auto-immune related conditions and NOT have something bigger afoot? It's batty.

    And thanks for the Amy Myers book tip. I actually already had it on my wish list. Is it out now, or did you get it from America? I thought that she seemed to have a lot going for her too, but I found her website off-putting, since it seemed to involve selling a lot of over-priced supplements, which always screams out snake-oil salesman to me. Nevertheless I intend to read her book, but it wasn't out when I last looked. I absolutely love the idea of integrative medicine, but I haven't found anyone in the UK who does it, and even if I did they would doubtless be expensive! It's NHS or nothing for me.

    Let me know when you got your TN; I'd be very curious to know how it appeared in your history. Is it active currently or are you in remission?

  • Hi Chancery,

    yes I have TN I'm sorry to say. It's a newish thing, started a few months ago. Luckily it abated after 2 weeks, and pops back to kick me every so often. It's a truly dreadful experience, not one you'd wish on your worst enemy. It's like sciatica for the face. (At the moment I have sciatica too.........sigh.......painful). I'm not sure why the TN started, it might be one in a long line of inflammatory diseases, or the result of having Rituximab (a biological agent which has a long list of side effects, some really nasty). No one can ever say, or are willing to say why it started. Still, at least it's been diagnosed quickly!!

    I've had these autoimmune issues for 30 years now, beginning with the RA, and about every 5 years, something else crops up. I'm sick of it, tired of not being able to live my life and fairly bored with it too. However, one has to be chipper and keep a stiff upper lip, otherwise the medics label it "all in my mind". It might be in my mind, but I do wish it wasn't anywhere else.

    The Amy Myers book is available from Amazon, I downloaded it a few days ago. I haven't looked at her website, but had a thought it might be as you said. I am day two of the diet. It's not been too bad as I'm already gluten and dairy free. The hardest thing is cutting out wine and crisps!! I love crisps and I'm desperate for salt which I think is a result of being on steroids for several months. Myers states everyone should feel the benefit with the 30 day eating plan, so I've nothing to lose, and hopefully I'll lose weight too.

    One of my issues is, when I see the medics, I look really healthy. I'm quite a muscular person, and - for a coelaic - a bit overweight. I have ruddy cheeks and look, as my friends tell me, like a farmers wife (or a rugby player). So no one believes me when I say I have coeliac disease, as they expect a sufferer to be thin. I'm not. I don't eat gluten, but I eat lots of other nice things!! Same goes for the RA. Apparently I should be "better or worse then I am", and I'm "one of those who come to clinic with nothing to show, but who moan a lot" to quote the rheumatologist. I will ask him to see me as a person, with feelings and a decent level of intelligence, and if he can't see beyond a blood result to refer me to elsewhere. But to who?? There seems to be a serious lack of decent thoughtful medics in the NHS now (and I say that being married to a doctor who totally agrees and is angrier than I am about the comments of the rheumatologist).

    When did you develop TN? Is it one of many issues? You obviously have coeliac disease, do you suffer anything else? I think your TN is much worse than mine, I do feel for you. These pains are almost impossible to live with. Are you on Vit D3 or other supplements? I need to get some D3 as my levels are low. Off to search Amazon for a stock.

    Take care

    S

  • So your TN is fairly late to the picture then? That's worrying. Well, it would be to me! Let's hope that it's just a one-off. That does seem to happen more than you might think. So fingers crossed for you.

    No, I'm not coeliac - unluckily! I know, bizarre to be sad about it, but for me it would feel like a perfect solution - stop gluten and all the other degenerative diseases are halted in their tracks. Not that easy, it would appear - as you are proof - so maybe just as well my tests have been negative.

    I assume you've been gluten-free for a while now? Has that not helped? That would certainly suggest there's some other allergen or auto-immune response being triggered. And how lucky you are to have a doctor for a husband. I hope you exploit him to the full!

    Your rheumatologist sounds like a charmer. I've been 'lucky' so far; the worst that's been thrown at me is that I'm far too susceptible to placebo effects - and that was just inferred, not openly stated to my face. But I'm sure far more colourful things are said about my argumentative nature outside my hearing!

    Yes, I've had my TN for almost a year now, ten months of which was in pain. B12 injections have put it into something that might be a remission, but I'm coming off the heavy drug loading so it's difficult to know how far I'm going to get towards normal. However, it HAS taken away my pain and allowed me to eat on the right side of my mouth again, and that is priceless. But it's made me more determined than ever to keep digging till I get to the root cause, which I appreciate is absurd at some level, since I'll probably never know what's caused this. But got to keep trying, right?

  • I really feel for you with the TN. I've suffered some pain over the years, but TN was soul destroying! it's truly overwhelming and you think of nothing else. The last time I'd been in that much pain was when sciatica first appeared. Wow! Nothing, and I mean nothing would make it stop. Eventually I was banging my head against the wall. I couldn't sit, stand, lie down , think. In the end we called NHS direct and was told to take two paracetamol!! (I'd gone way beyond that by that time). Luckily hubby insisted he spoke to a doctor, and ended up doing a 60 mile round trip to the nearest on call hospital to get an emergency prescription of Diazepam and Tramadol. Luckily that worked or I would have gone to hospital just for some pain relief, and I really don't like bothering the NHS!!

    You need to look into the diet advised by Myers. It helps with many inflammatory disease, which TN is (apparently). I've been gluten free for 4 years or so, and recently dairy free as it causes as many issues as the gluten (from an immediate bowel issue). But I was still drinking wine occasionally, and eating the non-gluten grains and nightshades. Now I've cut those out for 30 days, I hope to see an improvement. An interesting comment you made about coeliac diagnosis : my blood results are all negative. The only way to see if I have coeliac disease or non-coeliac gluten sensitivity is to have an endoscopy following eating gluten for 6 weeks. It would probably result in me ending up in hospital, as I am so, so sensitive to trace amounts of gluten. For example, yesterday hubby wanted me to try artichokes in oil. So I ate the smallest amount possible, roughly 3mm by 3mm. Within half an hour I new I had issues THEN checked the jar. It had e330 in it, citric acid, which can be sourced from wheat....... What a bloody stupid mistake to make. I should have known better, he should have known better (though I do wonder if he truly 'gets' how sensitive I am). Luckily for me I now longer have to try artichokes!!!!

    What I'm trying to say is NCGS causes similar issues to CD, but never shows up on testing. The only way of knowing is to cut out gluten: if you feel better, you;ve got your answer. I wonder if you'd benefit from trying to exclude the dreaded grain?

    Well, it's day 4 in the SDM household and the diet is still intact with no deviation for wine or chips! I feel pleased to have got this far as usually I'm ready to give in after 3 days!! Lets hope it works. I've nothing to lose and if it does work I may be able to live a better life, which is all I can ask!!

    Take care and keep fighting

    S

  • Yes, I've thought of non-coeliac gluten sensitivity but I've been thrown something of a curve ball with the recent blood tests showing that I am sub-clinical hypothyroid. I now have a whole new ball of wool to play with. It's like you have disease 1, 2, and 3. Which came first and what's causing what? It's the chicken and the egg conundrum but with a WHOLE lot more permutations. Only yesterday someone on the thyroid forum told me that Martyn Hooper, of pernicious anaemia fame, discussed how vitamin B12 deficiency caused thyroid problems. As far as I've been able to research, which is not much, I freely admit, thyroid is linked to malabsorption which would cause B12 to be potentially not available, thus potentially leading to TN. This seemed a good working theory, and still is, until you think it may be working the other way round - goddamn it!

    How I wish they'd keep their theories to themselves. Kidding, but it is really tiring trying to tease the strands out. I don't want to be treated for thyroid straight away, although I fit that picture best, if I'm honest, but is that a mistake? Is it a mistake to waste your time pursuing the gluten theory? Perhaps B12 is where the secret lies and something else entirely is causing a deficiency. I swear you could die doing this.

    Hey, you wouldn't like to lend me your husband, would you? I could do with a medical brain to bounce ideas off. I'm sure he'd love that. Not.

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