Gastrointestinal symptoms anyone?

Hi just wondering how many B12/PA people have gastrointestinal problems?

What are your Gastro symptoms, were they one of your first symptoms and have you found relief from them on B12 injections?

Bw x

41 Replies

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  • There are so many gastrointestinal problems Alesia but in my own case I had a perforated peptic ulcer at the age of 17 in 1959, had two thirds of my stomach removed and was diagnosed with P.A 13 years later in 1972 by which time I was a walking Zombie.

    Needless to say I have "problems" dealing with food and drink but I'm still "clivealive" and now over 75.

  • Oh gosh Clive that must have been just awful :( and you were so young! I'm so glad you are still here to offer help and support to others x

  • I lived nearly 40 years with P.A. knowing nothing about it, nor did I know anyone else who had it and the succession of nurses (or doctors) never asked me how I was "getting on" when giving the injections.

    I had complained to my then "one size fits all" GP about the returning symptoms and he simply laughed in my face saying it couldn't be the P.A. because I was getting the B12 injections and he point blank refused to increase the frequency.

    Then I joined the Pernicious Anaemia Society in 2010 and posed on their then forum the question "Am I the only person in the world with P.A. who feels the need for more frequent injections in the run up to the next one due to returning neurological symptoms?"

    I was amazed at the response - NO I was not alone

  • I'm just reading through the "Could it be B12?" book at the moment (bit.ly/b12-kindle-books) and from what I can gather the stomach's kinda where it's at for all the B12 issues in terms of that's where it's broken down, jigged around and sent off to do its job - or not as in our cases ;)

    So I'd presume gastrointestinal problems and B12 deficiency go hand-in-hand, e.g.

    "Causes

    Pernicious anemia is a type of vitamin B12 anemia. The body needs vitamin B12 to make red blood cells. You get this vitamin from eating foods such as meat, poultry, shellfish, eggs, and dairy products.

    A special protein, called intrinsic factor (IF), helps your intestines absorb vitamin B12. This protein is released by cells in the stomach. When the stomach does not make enough intrinsic factor, the intestine cannot properly absorb vitamin B12.

    Common causes of pernicious anemia include:

    * Weakened stomach lining (atrophic gastritis)

    * An autoimmune condition in which the body's immune system attacks the actual intrinsic factor protein or the cells in the lining of your stomach that make it.

    Very rarely, pernicious anemia is passed down through families. This is called congenital pernicious anemia. Babies with this type of anemia do not make enough intrinsic factor. Or they cannot properly absorb vitamin B12 in the small intestine.

    In adults, symptoms of pernicious anemia are usually not seen until after age 30. The average age of diagnosis is age 60.

    You are more likely to develop this disease if you:

    * Are Scandinavian or Northern European

    * Have a family history of the condition"

    medlineplus.gov/ency/articl...

    I find this interesting as my mother has shown symptoms of B12 issues and looking back over my life I can see many right from the beginning, things like being told I had a "weak stomach valve" which is why I've always suffered lots of heartburn to being told I was "intelligent but lazy" at school (and in the pram apparently, unlike my sister who was full of energy apparently) to things like having a "lazy eye", bedwetting till I was quite a few years into life, finding it impossible to lose weight until I cut carbs out now finding out B12 is what turns fat and carbs into protein so no wonder I lost weight but then put it back on if I didn't have enough B12, to depression diagnosed back in '94 to large red blood cells in 2015, now finally B12 serum level of 155 and battling to get ongoing loading doses before I can't stand up straight any more, or whether the physical issues are a result of the injections and things actually getting better... who knows?!?!!

    Wow, that was a long sentence. But yes, gastro issues. I've even been googling goiters as have a lump in throat which I was told by docs would just "go away with time" but now I'm putting down to eating wheat & goiter-aggravating stuff as had radishes and watercress every day, and lots of mustard lately. But not sure on that one yet... so many dots to link up.

  • Thanks Steve :) Mine started a year ago suddenly had burning stomach, dizziness, tingling in hands & feet and rosacea ... Looking back now I know a bit more I realised I had other symptoms long before, 10 years ago I had painful feet, carpal tunnel, numb arms on waking and had been tired every day in the afternoons for as long as I can remember, my family have always joked about it saying I was born tired haha

    Since then I have almost every symptom of B12d but blood tests say normal 350 so I am always doubting myselfwhich is why I'd like to know what symptoms others have had... I have gastritis, SIBO and stage 2 adrenal dysfunction, I too am reading that book and everything so far seems to fit my symptoms .... I've spoken to Dr Chandy a few times and he says definitely B12 deficiency and that if I correct that and the adrenal problem my stomach will work properly again!

    God I hope so because this is a living hell !!

  • I read that 1,000+ is best for everything to be working 'normally' - at the moment I feel like I'm trying to blame everything on it but after how I felt for a brief couple of days during the first set of loading doses I have I'm keen to get on the proper ongoing injections until no further improvement as I see a light in the tunnel where I might just live a 'normal' life, but also have the knowledge there's still a hell of a lot of darkness as by the time B12 deficiency is diagnosed it's kinda been an issue for many years already.

    I *really* don't want to have to self-inject!

    I do know that a lot of the issues can be controlled by diet & supplements, it's just the time it takes finding out what works for you and what doesn't, you just have to listen to your body & connect the dots with what others experience & know.

    What fun eh...!

  • ..also not sure how much you've read up but you can't just go from the serum levels alone, other stuff is needed to help b12 absorption so whilst levels might be higher that doesn't mean all is fine.

  • Oh yes! A barrel of laughs! ... NOT

    I didn't know about the 1000+ thing that's interesting!

    I know what you mean about trying to blame everything on it, this week I've had a rotten sinus infection to the point I could barely open my jaw it was so painful so that got the "it must be the b12 problem" too!

    How did you feel after those doses? Better I hope?

  • I used to be 'bunged up' a lot so gave up dairy a long time ago and haven't really had any issues until I returned back to my father's last year after what I didn't know was issues caused by the B12 cos I had the large red blood cell diagnosis in 2015, came back here in 2016 and occasionally have wheat & yoghurts & ice cream & sh*t so that's probably caused the acceleration.

    The initial loading doses were amazing, until 2 weeks after when I felt like I'd just fallen off the wagon, that's when I discovered that with neuro issues you're supposed to get more than just the two weeks of doses. So went back last week, got the first of another set but no appointments till 3rd october and just a repeat of the two weeks, so going back tues to ask to go on the proper NICE guidelines which is every other day until no further signs of improvement.

    It's weird at the moment as I'm wobbly, walking into walls, pins and needles, and was getting really anxious and stuff the other day which has calmed down a bit thankfully, got a bit scary the other day as don't know whether this is a sign of the B12 injections working, which some references say happens i.e. the symptoms are actually the nerves beginning to repair, or whether it's deterioration, which wouldn't be a Good Thing.

    Still, thanks to the people on this forum I've got the components of my letter to take along with me, writing down the list of symptoms and a diary, and just gonna hope it goes ok, not much more I can do apart from keep reading up and sharing - it's only through searching keywords and reading other people's experiences I'm learning so the sharing is the most important!

  • Wow this text

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  • But more than 80% of the population have serum B12 levels lower than 550 pg/mL

    And virtually nobody has levels over 1000 without taking masses of supplements.

  • Hi Eaoz! I'm only going by the quote as per the comment below from the Could it be B12? book - perhaps that's what a lot of the 'fight' is about, the fact we're keeping people at too low levels when really everyone would be a lot more happy and live more productive lives if we had more B12.

    I mean, most people certainly in the Western world that I know constantly go round saying how tired they are, perhaps the world would be different if everyone did maintain higher levels!

  • Yes, and all I'm doing is saying that the quote from that book is not based on anything scientific.

    Studies in Japan (where the lower limit is supposed to be 500 - but nobody has evidence for that) show that the average level is about 350 and that more than 80% are lower than 550.

    Martyn Hooper's book puts it better - saying that people lower than (can't remember just now) should be treated - if they have symptoms of a deficiency.

  • Hi Eaoz - sure, and as I continue my new journey into this corner of the world I'm confident I'll find out more about the various levels, figures, and so-called facts, and it's through people like yourselves with your knowledge who are helping me do that along the way.

    Your profile does have plastered all over it that you're a skeptic though, so that suggests to me you're going to be skeptic about everything, and the way you mention 'scientific evidence' leans me towards you're a believer in what 'the establishment' say when 'the establishment' are very much controlled by corporate influence, for example just take a look at lobbying in the U.S.

    So, in conclusion I thank you for your information as you're right as far as I know, it's just one side of the argument/scenario, but that doesn't mean they're right or wrong, quite often things change, for example the education system set up for the industrial age is no longer fit for purpose but is still here, the same goes for things like the pharmaceutical industry whose system means that things like B12 aren't focused on as much as they make lots of money out of other things. No big conspiracy theory there, it is what it is.

    As for scientific method, have a watch of some of the people like Steven Jones who apply it to 9/11, I'm very much a believer in the scientific method, after all, I've been hacking computer code for the last 34 years since I was 9!

    Thanks again, I'll add a "not scientifically proved" star to that figure!

  • I do agree though that it shouldn't just be a figure alone that determines whether someone should be treated or not, and 1,000 does seem a lot for 'normal' - would love to try it out sometime though, sounds awesome compared to my 155!!

  • I am skeptical about everything. When I read a scientific paper I don't just accept whatever they conclude. I examine their methods and their reasoning and look for alternative explanations.

  • Hah me too, just guess I didn't realise how much it's been B12-powered lol!

    Have you seen WeatherWar101 YouTube channel? That's Peak Skepticism - basically entire weather system been manufactured for a number of years now - and the more you watch it, the more plausible it looks/sounds/could be - what an amazing universe we live in ;) Here's the latest one from them:

    Enjoy!

  • ...I should say "PAS" powered I guess. Still learning. #n00b

  • "At this time, we believe normal serum B12 levels should be greater than 550pg/ml. For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1,000 pg/ml."

    Pacholok, Sally M.; Stuart, Jeffrey J.. Could It Be B12?: An Epidemic of Misdiagnoses (p. 11). Linden Publishing. Kindle Edition.

  • hmm - pg/ml vs ng/L... was reading about that somewhere as well so perhaps I'm thinking of a different 1,000 but perhaps not. Argh so much to learn!

  • ah, no, is the same:

    "ng/L = pg/ml = 200 ng/L -> 200 pg/ml"

    Pacholok, Sally M.; Stuart, Jeffrey J.. Could It Be B12?: An Epidemic of Misdiagnoses (p. 205). Linden Publishing. Kindle Edition.

  • Lots to say on this but I'll reply tomorrow as my eyelids are drooping haha

  • I know what you mean about the wobbly walking into walls thing pins & needles etc .. I get really off balance and walk sideways sometimes bumping into door frames! Feeling like things are worse is apparently called Reversing out syndrome according to Dr Chandy where the nerves are being repaired, he says it will pass :)

    The B12 info website has some good pointers for writing a letter I used it to write to my GP which was when she finally agreed to a therapeutic trial of injections ... My 1st one is tomorrow I am a bit scared if I'm honest!

  • "Reversing out syndrome" LOL! Well I do hope so, it's quite scary thinking it could stay like this or get worse - fingers crossed, whilst I still can ;)

    Great to hear you've got some injections coming - are you doing a set? I mean, one's nice but from reading you lose 80% of the injected amount so that's why lots are needed to get up to the 'correct' levels again.

    I was a little nervous before the first injection as I hate injections but now I can't wait for my next one, but that's cos a nurse is doing it not me ;)

    I see b12d.org/ are the people to call then if I get any big issues I want to discuss, sounds like they're where it's at, along with the forums here!

  • Yes loading doses then 3 monthly :) I didn't know about losing 80% of the injection! That's a lot!!

  • Re the b12info website - indeed, I've taken the relevant bits from the letter writing page and need to stitch them together properly and print out before my appointment - it's not till 4.50pm tomorrow so got time, just amassing info, journaling, etc. then will put all together tomorrow. Hard to focus on one thing, got a million tabs open on this browser and this site is awesome but the logout time is annoying cos by the time I've finished typing my monologues it says I don't have permission to do that, most annoying, I'm sure it doesn't need to time out this quickly and no setting in preferences, another thing for my list...

  • Here's the letter writing link in case anyone else hits this point wondering wth - b12deficiency.info/b12-writ...

  • Hi Alesia

    As your symptoms came on quickly, have you had your Folic Acid level checked? Works with B12 and has same/similar symptoms ;)

  • @Stevepurkiss..have you had your thyroid levels checked? Blue Horizon probide a very good test but ask when it will be discounted because otherwise it's expensive. Then ppst your results on the sister site, Thyroid UK. Any test your gp would do won't tell you much..good luck

  • Hi thyroidquest - I don't think I have, no. My research on previous and current issues and diet has led me to join the Thyroid UK forum as that could be a factor in the B12 issues.

    Interesting you say the GP tests won't do much, I must admit I was thinking of mentioning thyroid issues as the GP referred me to ENT clinic and have appt in a couple of weeks there as have had re-appearing lump in neck which I've been worried was to do with my smoking and lung cancer but doc said it wasn't that it was just a lump that forms in many people and goes away in time(!) and the best way to prevent lung cancer was to stop smoking.

    So I signed up to the stop smoking clinic, decided to take Champix even though I'd heard a few people have issues with it and stopped smoking about 6 weeks ago and all's been going swimmingly well until yesterday when I got so f*cked off with the fact I can't stand up straight I ended up pedalling 12 miles, buying some tobacco & smoked 4 cigs, thinking well might not be able to roll these soon so what the hell.

    Anyway yes, will have to check those tests out when/if I find some money, at the moment I've been practically bedridden for the last couple of years, the last one of which I've returned back home at the age of 45 and staying in my 80 year old dad's spare room :( If they'd realised it was B12 back in 2015 when they discovered the large red blood cells then maybe I'd have managed to keep my flat, not dried up my project pipeline due to anxiety, cancelling meetings left right and centre and life would be different, but it isn't :(

    I'm waffling and feeling sorry for myself again aren't I? LOL soz, I'm such a Drama Queen ;)

    Once I get this doc's appt out of the way tomorrow I'll be back on the planning profitable projects front if my brain can focus on one thing long enough and hopefully I'll be getting some income soon, I've only taken about 3k this year which isn't really great considering I did more than ten times that amount a couple of years back.

    I'm lucky I've got family though otherwise I'd be on the street. Not sure he gets it though, still it's all my fault, although I can tell he's trying a bit to understand, but he doesn't, as many others don't.

    Right, stop typing steve...

  • Good luck Steve..important to get that lump checked out though!!

  • Yes I would say that gastro symptoms were the first ones that I noticed....bloating, constipation, feeling ridiculously full after a small or normal sized meal.

    I'm not sure how much, if any, the B12 injections improved those symptoms. However, things massively started to improve once I introduced a very good quality probiotic each day together with betaine HCL and pepsin taken with meals containing protein.

  • Can I ask what brands you used please? Only i've tried various probiotics and digestive enzymes but their effects have been short lived and sometimes made things worse!

  • I use Symprove. I've tried others but they don't seem to make much difference to me. I do a full 3 month course then have 2 or three months off but then need to do it again. Expensive unfortunately but I feel so much better using it.

  • Thanks Jan i'll have a look at symprove :)

  • Hi Alesia and JanD236 I used Symprove too to start with and Raw unpasteurised sauerkraut, recommended by a member on this site.

    Then I went to BioKult (cheaper) plus lemon drinks (some people use limejuice) which worked to keep symptoms at bay - recently symptoms came back after taking a medication that did not agree with me, so am having another 2 weeks of Symprove.

    You can make sauerkraut at home, members do, which is very cheap and I read was the best probiotic of all. Recipes on the internet.

    I have bought a suitable jar and printed a recipe but that is all so far.

    Do see Wedgewood's answer below.

  • Hi Alesia,

    I have had nausea and retching for the last 3/4 years can last for a short time or can last days, about 18 months ago I started making natural yogurt and trying to have sauerkraut with some of my meals and things seem to have improved a little the nausea has not gone but at least I get some better days. At the moment I am doing a trial run on gherkins in brine as I have heard these can also help

    All the best :)

  • Thank you pitney :)

  • Intrinsic Factor and stomach acid are both produced in the parietal cells in the stomach . The antibodies which P.A. patients unfortunately produce attack these cells , resulting in no Intrinsic Factor and low or no stomach acid . Lack of stomach acid upsets the stomach flora, leading to domination of bad bacteria . This causes the bloating , stomach ache and other tummy problems . We can help this by taking a good probiotic ( I used Symprove , which is unfortunately expensive , but it really works ) Even better is to eat fermented vegs- I now make my own organic red cabbage and onion sauerkraut . Should be eaten raw , not heated as this can destroy some of the probiotics . This is a good cheap probiotic that provides other nutrients apart from probiotics . It is easy to make ( look up on google ) Lack of stomach acid is something that the NHS has no treatment for - so you are on your own ! In fact my GP had no idea about it .

    Serious lack of stomach acid can be helped with Betaine HCL , pepsin and gentian bitters capsules . They help with digestion of protein . Best to consult a good nutritionist for directions for use . Or look up on google .

    Very best wishes .

  • That's really interesting Wedgewood thank you! I was given PPI's to heal the Gastritis initially which did nothing for me in fact it made things much worse! I tried probiotics but again it made things worse. I was recently advised by an allergy consultant not to take probiotics if you already have an overgrowth of bacteria ... It's so confusing!

    I did try digestive enzymes with HCL which at first seemed to help a lot with digestion (not so much undigested food in stools) but then all of a sudden I noticed increased burning in my stomach for hours after taking them so I'm not sure what went wrong there?

    Perhaps the HCL was irritating the Gastritis? Who knows!

  • I've had acid reflux since I was about 26. I used cimetidine back in those days. Now one single omeprazole lasts me for up to two weeks. No other gastrointestinal problems that i can think of.

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