To B(12) or not to B(12)!

Being diagnosed recently, loading doses over Christmas and new year, still finding it all a little daunting. Are my symptoms of bloating etc because of being low on B12 or are my gastric problems the cause of inability to absorb the B12? Only asking as they seem to have resurfaced, and I have only just realised that I haven't felt as bad in previous weeks. The 'looking in the fridge then the cupboards, no, I don't want anything' scenario is happening again. I have an appointment next week with the doctor as my pins and needles haven't subsided and fogginess still lingering. Snapshots on phone, fully armed with evidence! Also going to ask for Thyroid test as my mum, aunt, nana etc all have under active Thyroid. As I understand they go 'hand in hand'.Thanks for reading.

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  • Want to wish you all the best . It's early days yet in your treatment . Try not to be impatient - it's difficult though ! As regards the bloating . I had this problem too , with tummy pain and nauseous reflux ( not acid) I saw a gastroenterologist who eventually told me ( after prescribing drugs that did not help ) that Pernicious Anaemia patients have low or no stomach acid - Hypochlorhydria or Achlorhydria repectively . This is caused by the antibodies that PA patients produce which destroy the function of the parietal cells in the stomach ,which produce the Intrinsic Factor and Hydrochloric Acid Both of which are needed to extract and absorb Vitamin B12 . There is no NHS treatment . Lack of stomach acid upsets stomach flora which allows bad bacteria to multiply , giving off gas ( bloating and causing pain ) So , what to do ? After trawling the Internet , I realised that these symptoms are similar to IBS ( Irritable Bowel Syndrome ) . I saw an ad for a probiotic , which was supposed to help IBS . So I bought some and it helped fantastically well! . It was unfortunately quite expensive(Symprove) So I now make my own probiotic --- home -made organic sauerkraut -cheap and effective . It is an acquired taste . If you can't stand it , try other probiotics . But I found yoghurts useless . I also suggest taking a good multi vitamin and mineral supplement . Lack of stomach acid doesn't help with absorption of other vitamins and minerals . But B12 is the most difficult one to absorb .

    Doctors do not know about PA patients having low or no stomach acid . My doctor was astonished ! I do hope that this info will help you as much as it helped me !

    Good idea to have a thyroid test , but there are difficulties with that too ..

    Stomach acid is so important to one's health . You could try drinking lime juice ( @fbirder an advisor on this forum has had success with this) Some people try organic cider vinegar with mother , diluted of course . In difficult cases Hydrochloric acid with pepsin capsules are used (Amazon) Google for advice on how to use them .But try something conservative first .

    Wishing you all success .

  • Thanks for responding, think I'm probably being impatient! Finally having a diagnosis was a bit of an 'eureka moment', having seen the cardiologist for palpitations, feeling washed out tired and continually anaemic for years. Seeing all my symptoms on a list, I thought, 'great, now let's get it sorted'! Beginning to understand that it's not that simple! Will try the sauerkraut, thanks.

  • As a now confirmed coeliac, my dr would consider your symptoms(as they are mine) to be because of it- dont agree, not for one minute! But it would do no harm for them to get you a coeliac screen.

    Or better still to fully investigate why you are b12d in the first place- take a look at the pinned posts, sure there is a list of possible reasons for it.

    Like wedgewood ive tried yogurt versions of probiotics which didnt work, nor does the gaviscon from the gp, but as she says, low stomach acid has no treatment, everything is geared to high, i, myself am seriously having to consider becoming a cabbage muncher. or do as frank does, and have lime juice daily. Ironically years ago i use to drink lime quite a lot, if it had brandy and ginger with it! Lol

    Hope you find this site useful and someone on here will no doubt try to answer any future questions you may have. I have been here 18months and have always found that the advice is good- even if my gps wont listen.

  • Yes I have tried to get to the bottom of it, coeliac tested normal. I've always avoided acidic foods, but maybe that is the answer. My sister also needs B12 injections, not sure if she has had the IF test, she lives in Australia, mine was normal. Although I know it's not accurate. Thanks for replying. More acid it is then! Will try anything to get rid of this noisy, bloated stomach!

  • I experience all manner of intestinal oddities but as a product of hypermobility syndrome and related autonomic nervous systems disorders - of which there are a potentially infinite variety. It was the mention of palpitations which made me thing it is probably worth enquiring about dysautonomia. because one of my symptoms is spontaneous fight or flight response but when there is no stressor present - actual or psychological. I'll just start having palpitations, stomach tightens, breathing increases... Well, I'm sure you know what fight or flight feels like. So it's certainly worth considering dysautonomic symptoms. The can occur singly but usually they like to hang out in a group and really mess around with your system/s. The can be isolated, part of or triggered by another condition. Around 75% of people with hypermobility syndrome have some autonomic problems. B12 malabsorption being part of it in some of us, but it's not understood why because it's not PA. It might be the salivary enzyme that I forget the name of, but as you say, it's far from simple, and since being diagnosed in 2008 I've also had chronic fatigue and a bunch of other stuff that is now under control thanks to B12 injections, but now I have either narcolepsy or, more likely, ideopathic hypersomnelence (which simply means both excessive sleep duration at night as well as rarely feeling refreshed by sleep and almost always feeling tired. Finally got a world class nuerologist on the case so it's looking good. Quite remarkable really, given the state of the NHS right now.

    Regarding the stomach acid I just read something interesting so will link below, but I have heard that manuka honey is helpful but cannot subtantiate so just throwing it out there for you to research if so inclined. I personally use activated charcoal for bloating, but I really seriously adivise against that if you have low stomach acid. Years ago I practiced yoga and also trained as a masseur (neither of which I practice now thank to hypermobilty) but what I do have now is great technique for dealing with painful trapped wind which - and feel free to laugh - involves standing on my head and massaging my gut until the trapped wind is freed. It would be crass to add further detail.

    One thing I swear by for healthy digestion though, and I've just done a quick search and it seems to be on a lot of people's "things that soothe coeliac's guts" list is aloe vera juice. Another acquired taste but either gulp it down in one or mix it with apple juice. It neutralises acid though so you'd need to pick the right time of day to drink it. Amazing for cleaning the pipes though and also helps encourage health gut flora. It's a prebiotic, which means it's a natural compliment to probiotics. i.e. used together your gut is better off than just using probiotics.

    butternutrition.com/increas...

  • QuarkyOlympian. A cautionary note: people with Pernicious Anaemia and B12 deficency often suffer from low stomach acid so any product that neutralises stomach acid may make symtpoms worse (rather than better) and further inhibit the absorption of essential vitamins and minerals.

  • Thanks, standing in your head made me laugh! Curious now to the 'details' ha ha! Not sure now whether I have too much acid or not enough, I've researched and symptoms can be similar! Used to take antiacids years ago for a reflux problem (cause of low B12?) Not so sure where the problem lies, trial and error,I guess. Thanks will look in to honey, heard it's great for Hayfever too, another thing (among other allergies) I suffer from!

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