Vitamin B12 deficiency

This topic contains 18 replies, has 9 voices, and was last updated by  Douglas H 5 years, 7 months ago.

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  • Recently, I have been spending hours – no, days! – online, checking:
    a) whether I can find natural alternatives to control my acid-reflux problems (to come off the shed-loads of acid-suppressing drugs I have been taking for about 4 years); and
    b) the causes, diagnosis and treatment of Vitamin B12 deficiency (previously known as pernicious anaemia).

    The first subject came up as a result of reading on this forum about someone else’s experience of the same condition: GERD/GORD (Gastro Oesophical Reflux Disease). That, in turn, led me to research the second subject, B12 deficiency.
    I had no idea that my drugs – Lansoprazole ( a PPI or Proton Pump Inhibitor) and Ranitidine (an H2 Blocker) – prevent the uptake of various nutrients, including Vitamin B12, and neither did I realise just how crucial B12 is – and the impact it’s deficiency has on the whole of one’s system. Two other factors that further increase my risk of having this deficiency, are being aged over sixty, and also being a vegetarian for more than 30 years (as meat and other animal products are the only proper sources of B12). Fortunately, my GP has readily accepted my request today to have various blood-tests, to screen for all sorts of possible issues, so that’s scheduled for Friday. I certainly hope the results will turn out to be negative/normal.
    I distinctly remember quizzing the Gastroenterologist, four years ago, about the effects of acid-suppressants on one’s nutrition and he assured me there would be no negative consequences, as stomach-acid is mostly just to kill bacteria, rather than the digestion of food! Despite regular reviews and gradual increases in my dosages, no GP has ever mentioned any potential problems in continuing on these drugs.

    Pernicious anaemia – or low B12 levels – has been found to effect every organ, gland and bodily system one can think of and is implicated in major conditions such as Chronic Fatigue Syndrome (or ME); Multiple Schlerosis (MS); Diabetes; Thyroid problems; Depression; Dementia; and Cancers.

    If anyone else is interested in the subject of B12 deficiency, perhaps take a look one or more of the following items:
    ———————————
    Website of The B12 Deficiency Support Group, set up by Dr Stephen Chandy, an NHS GP in Horden, County Durham, United Kingdom, who has studied and treated this problem for 40 years.

    http://www.b12d.org/
    ————————————
    TV Documentary ‘Diagnosing and Treating Vitamin B12 Deficiency’ (50 mins) – features Sally Pacholok and Jeffrey Stuart, authors of ‘Could It Be B12?: An Epidemic of Misdiagnoses’

    http://m.youtube.com/#/watch?v=BvEizypoyO0&desktop_uri=/watch?v=BvEizypoyO0
    ————————————–
    plus their website, B12 Awareness:

    http://b12awareness.org/
    ————————————–

    How interesting! I have also always suspected that PPIs would affect digestion and absorbtion. It stands to reason, doesn’t it?, that suppressing acid production will affect the entire digestive process.

    Have you looked at D-limonene? I have been trying it recently, but the jury is still out on whether it works or not. Fasting (and therefore limiting the food groups I consume) has got me thinking that grains in general, rather than just gluten-bearing grains might be a problem in my case. I am experimenting…..

    Hello, Ruthi – Many thanks for the pointer towards D-limonene, which I hadn’t come across before. The one study quoted online does make it sound great but there seems to be very little understanding of why or how it might work. I found one telling comment from someone who has tried it:
    ‘About d-limonene. Has anybody actually used it and it worked for them?….The stuff hasn’t worked for me…..for most supplements I can find tons of testimonials from people, but with d-limonene I can only find “sales” articles pointing out this amazing study……If it really works so well, and so fast at curing one of the most prevalent diseases in the US, why aren’t thousands of people jumping for joy and screaming online that they have been cured?’
    I’m currently exploring details and opinions about two particular herbal supplements: DGL (de-glycyrrhizinated liquorice) and Slippery Elm Bark but have not settled on what to try for myself. In the end, after weighing up any gathered information – and there’s just SO much of it ‘out there’ – one does have to experiment with different things, to discover what helps. I wish you well with your own experiments.

    Unfortunately, I think that I didn’t express myself very well, yesterday, in my original comment about Vitamin B12.
    The main thrust of both Sally Pacholok’s book and Dr Stephen Chandy’s work is that many people are being misdiagnosed and mistakenly treated for serious medical conditions when, in fact, a B12 deficiency may be the easily-treatable source of their health problems. It seems that B12 is essential to every cell in one’s body, so, every one of one’s systems, including one’s mental processes, are impacted by its deficiency.
    If you experience mysterious, un-diagnosed symptoms – or you already have been diagnosed with a particular condition but do not seem to be benefitting from standard treatments – I would recommend that you either explore this subject further yourself or take a look at one or two of the links provided yesterday. The case histories detailed in the American documentary and on the two websites are extraordinary. If any bells ring for you, then hopefully, you will be better able to choose how to proceed with your own health issues. With all best wishes.

    The GP you are discussing is my GP,he saved my life. Dr Joseph Chandy is an amazing and caring GP and he is worth his weight in gold. If it wsnt for his care i would be in a wheelchair now. He gave me my life back! People do not realise how serious Pernicious Anaemia is (even most GP’s) they have no idea of the care pathway needed to put patiens back to health and they tend to follow an out dated “one size fits all” approach to the disease leaving people suffering needlessly when all they need is more frequent jabs.
    I had terrible gastric acid before treatment and could not survive without medication for it,thankfully i never have it now.
    The disease mirrors so many other conditions like MS and people are treated for that and continue to deteriorate because the real problem goes untreated. I find this very sad and even more sad is the face that treatment is SO simple and very cheap to administer but the benefits are huge and life saving. Sometimes i need jabs every 2 week and with my wonderful GP i get them….others get them every 3 months regardless of how they feel cause “thats what it says in the book”…horrific!!

    Hello, Lisa.H – Thank you so much for responding to my post on Vitamin B12 deficiency – I’m really pleased to hear from you.
    I do believe that this issue is likely to be relevant to a number of members on this forum, without them necessarily being aware, yet, of the simple cause of their symptoms. Myself, I am now awaiting the results of my blood-tests, from samples taken last Friday, and would be very interested to hear more of your story, if you were willing to share it here, in this public context.
    Particularly, questions I have at present are:
    – For how long had you been taking medication to supress gastric acid prior to your diagnosis of B12 deficiency (b12d)?
    – How long ago were you diagnosed with b12d?
    – How low was your b12 level according to your blood test when you were diagnosed? (As you probably know, most GPs accept the NICE** guidance of 150 or above as ‘normal’ – i.e. not requiring treatment – but Dr Chandy and others say the bar should be set much higher, so, anyone with levels of 300 or less needs treatment, because the active level available in the body’s organs is actually far less than that coursing round the bloodstream.)
    – Why do the b12 injections have to be lifelong, once b12d is diagnosed? (My guess is that the stomach’s capacity to produce the essential carrier of b12 – Intrinsic Factor – has been destroyed and, therefore, injections are the only way to get enough b12 absorbed into one’s systems, bypassing the body’s usual route, but is that so?)
    – Was it purely the b12 supplementation that enabled you to stop your stomach acid medication or did you need other treatment to stop the production of excess acid?

    Of course, if you do not wish to divulge more details of your medical history here, I fully understand. In that case, I would hope we might find a way to communicate further by a more private means. For me, it feels important to hear more at this early stage of my exploration into the potential consequences of Vitamin B12 deficiency.
    You are so fortunate to have Dr Chandy as your GP – as you obviously realise. I hope you do feel well now and I wish you continuing good health and good care.
    For others who may be interested in hearing this pioneering Doctor himself (and two of his patients) here is a link to a BBC TV – NE & Cumbria Regional programme from 2006 (Duration: 10 minutes):

    http://www.b12d.org/bbc-documentary-and-testimonials

    (**NICE = National Institute for Health and Care Excellence – very much a misnomer in this instance, I believe.)

    Hi jeanius, i was using Gavilast to supress my stomach acid for as long as i can remember,at least 15yrs.I didnt link it to B12 until i realised it had gone away. I tested positive for pariatel cell antibodies way back in 2006 and under a diferent GP was untreated. It came to the point about 18 months ago that i was ill and was haing dificulty walking amongst a host of other symptoms. On one of my many trips to the doc i was told “well,you have pernicious anaemia to look forward to but maybe in 6 months time we will treat you when your levels become too low”…..off home i went and joined the pernicious anaemia society who pointed me in the direction of Dr C and my life was saved!
    Your guess is correct about intrinsic factor (or lack of it) being the cause for the need of lifelong injections.our bodies cannot absorb it through the usual means.

    Hello, Lisa.H, and thank you for providing more details of your experience of using prescription acid-suppressants for long-term heartburn and their dreadful consequences. The current lack of awareness of the many symptoms of Vitamin B12 deficiency – and the failure to provide the readily-available, cheap and simple treatment to sufferers of the condition – is just madness. How many other people with chronic fatigue or neurological problems might be helped by regular B12 injections, I wonder, if there were more education and information given to the public and, most especially, given to GPs and Consultants?
    Ten days ago, after speaking with my GP, I halved the high dosages of my two acid-suppressants and have been using both raw honey and Slippery Elm Bark powder to first soothe and then coat and protect my gullet from acid attack. I’m pleased with the results so far. Next week, I plan to stop the prescription medicines altogether and see how it goes. By the end of the week I should get sight of my blood-tests, to find out if B12 deficiency is an issue for me too.
    I am very grateful to owen888, on this forum, who started me on the search for less harmful alternatives to acid-suppressants and to you, for helping me to understand more about the B12 problem.
    Please do keep in touch, if you would like to. Are you considering using the 5:2 system – or perhaps you are already applying it to your life? In any event, I wish you much support and encouragement through your membership of the Pernicious Anaemia Society and continuing good care and treatment through Dr Chandy. Take care.

    Hi Jeanius,
    The treatment i was using ‘gavilast’ is avail over the counter not a prescription med. I thought the acid reflux was something i was doing wrong in my diet for years,and i never thought to seek medical advise about it. Its only after treatment with B12 that i realised there was a link.
    i hope that you get the right treatment for a possible deficiency as most people i converse with get sub standard even after diagnosis,it really saddens me.
    I have been applying the 5:2 for 2 weeks….9lb loss! I’ve been dieting for almost a year and until now have really struggled,i had managed 21lbs but its been no easy ride. I have lost 9lbs with 5:2 so im more than pleased and my gastric disturbances have improved to the point of dissapearing on fast days 🙂
    Take care Jeanius
    Best of luck with your health

    Hey, Lisa.H, your progress using the 5:2 approach sounds great. Hooray! No wonder you’re more than pleased. Well done, you, and may you reap more and more benefits as the weeks go by. (I wonder whether Dr Chandy would be interested in considering the advantages of the 5:2 system for his other patients, especially with you as a positive demonstration model?!) Thanks for your best wishes. Hopefully, we can keep each other posted with all our further good news.

    Hi all, I have Vitamin B12 Deficiency due to a lack of intrinsic factor in my gut and was only diagnosed a few years ago when i was screened for Von Willebrands Disease (clotting disorder). I had been going to my GP for years saying I was always tired and they always put it down to aneamia or stress. I now have 3 monthly injections and can always tell when they are due as I get really tired.

    I am about to start the 5:2 diet and was thinking of just having 2 bowls of rolled oats with milk and honey a day as this always keeps me full for longer and it doesn’t take much thinking about. The more I think of food the more i want which is why such things as Slimming World or Weight Watchers never really worked for me as I was constantly thinking of what I could eat.

    Wish me luck 🙂

    Hi Jeanius;
    You may be interested that there is a bit about b12 research in the current edition of “the vegetarian” the magazine of the Vegetarian society (www.vegsoc.org) I have signed up to be in a study about B12/homocysteine levels in vegetarians which is looking at the best sort of supplements.

    The person running it is Dr Derek Obersby; he can be emailed on d.obersby025@btinternet.com

    hope all going well for you
    Sara-gee

    Many thanks, sara-gee, for this information. My blood-test results show a ‘normal’ level of B12 at ‘more than 200’ and ‘no treatment advised’ so now I have to gird my loins once more, to try and get my GPs to accept that levels below 300 do need the injections, as recommended by Dr Chandy. I’m currently self-medicating with 15,000 mcg of B12 per day, orally, and am awaiting delivery of 5,000mcg patches to try. Initially, I had a huge burst of energy but it still feels early days to know if I am doing the right thing for myself.

    I completely stopped the acid-suppressants last week and continue to experiment with natural products, including a DGL licorice supplement. This feels like the proverbial rock and a hard place, as I am aware of the consequences of on-going acid-damage to my gullet, compared to the negative effects of staying on the drugs. Again, it feels still like a stumbling experiment right now but at least I am working on the problem. Que sera, sera!

    I hope you continue to do well. The study sounds good. If they are still looking for participants, I will contact The Man. I very much appreciate your input. All best wishes.

    it’s been qute a while since i did the reading on this but there are lots of good reasons to get off proton pump inhibitors – including increased risk of certain esophageal and gastric cancers when on them for very long term. that said, i’ve yet to find anything that allows me to come off my omeprazole so i’m reading these suggestions with interest

    I was diagnosed with Pernicious Anaemia about 6 years ago when I was 28. I had dizzy spells, excessive tiredness, the “sighs”, brain fog, whole list of issues. My b12 levels were below 100. I have the autoimmune type of PA and it is genetic – my Mum has it and my Grandma had PA too. I get an injection every 2 months and the situation is under control. I had a test that showed antibodies (can’t remember what kind now).
    I think you need to differentiate between low b12 and PA; they’re not synonymous.
    Also, if your doctor won’t treat you find another one.

    I though I’d report back on the limonene, Jean. It didn’t work for me.

    In the mean time I have finally had my endoscopy and been formally diagnosed with gastritis. I am still waiting for the biopsy results, but blood tests earlier in the year came back negative for H pylori. I have to say, I was uncomfortable before the endoscopy, but afterwards I was in agony! I should have anticipated that, but I didn’t! Not surprising if they chop little holes in your stomach wall, eh?

    I’ve done what internet research I can on gastritis but information is really limited. I am currently awaiting delivery of Sherry Rogers book ‘No more heartburn’

    There seems to be a vicious circle operating with B12/gastritis. Gastritis causes B12 not to be absorbed properly, and so do PPIs so beloved of our docs as a treatment for gastritis. But also pernicious anaemia (and possibly other forms of anaemia) cause gastritis. I think B12 supplementation probably helps no matter what, though, if your levels are sub optimal. And its pretty important to get the gastritis under control since it can lead to ulcers and stomach cancer.

    I got some slippery elm, but then found it contained wheat! Does yours do so too?

    I’ve been feeling so down recently, (feeling grotty, and my beloved old dog died!) that I have found it really hard to fast, and even harder to stick to my TDEE between times. But interestingly, my gastritis is much less painful on my post fast day – until I eat!!

    Hi all,
    I did have success with D-limonene for occasional acid reflux, as well as finding DGL (deglycerolized licorice) tablets
    very soothing for upset digestion. I also find I have no digestive problems on fast days. I’ve started taking l-glutamine 20 minutes before eating, it’s said to heal the stomach lining over time. (I read about it in “Clean Gut” by Sebastian Junger, don’t know if it’s available in the U K) . Anyway, these supplements and the fast days seem to be helpful in my case at least. Good luck!

    Well, the book arrived. I guess I shouldn’t be so surprised – she’s advocating cutting out all sugar, alcohol caffeine and junk food and reckons that is all it needs for most people. For me the main problem is sugar because I am really addicted to that. I rarely partake of the others, so it won’t be too onerous to give them up.

    Useful stuff for me is the information that Vanadium and Chromium are crucial in sugar regulation, and combined with unrefined carbs the sugar craving should subside.

    Also there is this stuff called DGL, licquorice tablets that you chew 20 mins before meals. I bought some, but am having trouble remembering to take them early enough!!!

    Unfortunately I have realised that its not just gluten that causes me problems, but pretty well all grains. So that’s GF bread, porridge and oatcakes off the menu. Drat!!

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