Non PA b12 deficiency causes

Is anyone on here trying to find out the cause of their b12 deficiency after testing negative for antibodies.

I had a lot of antibiotics back in 2008 after picking up an infection working on a sewer and then again in 2012 after a confirmed hpylori infection and ulcer symptoms.

I've had bloating and constipation since with occasional diarrhoea after eating onions or Chinese food.

I'm wondering if I could possibly have SIBO but don't know that much about it or really how it effects b12 etc.

Has anyone else had similar problems or any success?

24 Replies

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  • Do you still have the H pylori? If that wasn't eradicated it could cause low B12.

    To get gut bacteria back in shape after antibiotics I've used Symprove (very expensive but effective) followed by Bio-Kult (almost as effective but a lot cheaper).

  • I did a stool antigen test through Medichecks and it came back negative.

    I did read somewhere that hypylori is thought of as an alchemising bacteria. They described a situation where it can reprogram DNA to make its environment more hospitable.

    It doesn't like acid so it programs the stomach cells to produce less.

    I don't know if that continues after it's eradicate but it would make sense and go some way to explain why it can effect b12 absorption.

    Interesting though despite historical low levels of b12 I've gotten my levels up to 900ng on sublinguals so I can absorb it.

    I still feel tired and rotten though and I started it in November.

  • Sublinguals only raise the serum level but do not help with repair of neurological symptoms, needs to be jabs for that. They are not doing anything for you if you are not even getting some relief from the fatigue. Lots of people use sublinguals to help with the fatigue until they are able to get their jab but it doesn't heal. Your levels are falsely raised by them without any real benefit.

  • How can they be falsely raised? Surely they're high or low?

    Do you have any research that shows that?

    I get that a supplimenting free test shows a better overall picture but surely if serum is in the 900's on sublinguals it's in there (or at least in the blood).

    I'm not feeling great though and should be getting an injection soon so time will tell.

    I think it's only one injection though without the loading doses judging by the hospital letter however my serum was 915ng last week at hospital so I'm presuming I'm loaded. I had supplimented that day though with a 500mcg sublingual hydroxycobalamin and had been taking them routinely for quite some time.

    I buy 1000mcg tablets and half them with a pill cutter.

    A full tablet in one go feels like too much.

    I'm hoping I don't get the same feeling on the injection although if it's supposed to last three months I'm not expecting quite the same 'hit'.

  • You are correct. The idea that your body can somehow tell the difference between sublinguals and injections in nonsensical.

  • So do the injections last longer than sublinguals if you are able to absorb the b12 from sublinguals?

    The longest break I've had since using the sublingual b12 was 11 days. I stopped to do a test at the seven day mark and got a serum of 902pg (666pmol). By day 12 I was beginning to feel it so I started again.

    I'm truly much worse since I ever started supplimenting but I do think I was heading this way as I'd been getting more poorly each week since around July last year.

    I started b12 in November after getting light aversion ,burning skin on my thigh, tachycardia upon standing and ocular migraines.

    I later got sleep problems, anxiety, and couldn't cope with noise.

    The tachycardia resolved itself after around 4 weeks and before I'd started b12. That happens after I decide that I need exercise and really push myself walking fast and then literally crash and burn back in August. I had to take to bed for about three weeks and the postural tachycardia was awful.

    I've had tinnitus for a very long time and been fatigued since I was ill for a week in 2008. Nothing compared to the last 8 months though.

    This is life changing 🙁

  • Until recently Steap I was doing well on Jarrows 5000 SL but, after two viruses this year aggravating digestive system again, find I'm now exoeriencing mild neurological symptoms ,e.g. Tinnitus, tingling and numbness at tips of tongue, fingers and toes, migraine with aura and occasional double vision. I've also probably reached an age where my body is struggling to make enough hydrochloric acid to absorb enough B12.

    The B12 from Mycare.de arrived from Germany yesterday and I now intend to SI.

  • B12 absorption only requires acid to release the B12 from the proteins it is attached to in food.

    Pills are already relased.

  • Exactly why, with age resulting in diminished acid, I'm obviously not now absorbing it and experiencing neurological symptoms

  • I've got a serum level of over 900ng on sublinguals albeit testing it without a break and on the day i'd already taken them.

    I wasn't sure they'd be testing it on the day I went.

    I'm not expecting fast miracles but I was hoping to feel better after five months of decent b12 levels.

    I remember what its like to feel normal and not being frightened to do normal things but it's becoming a distant memory.

  • cmim.org/pdf2014/funcion.ph...

    The above BMJ research document has a useful summary and is supported by many research papers. It also states (bottom of page 4 under 'How is Response to treatment assessed' ) that, once b12 treatment is started, the test results don't mean anything as blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters:

    "Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment, and retesting is not usually required."

  • That's not overly reassuring as my active b12 pre supplimenting was 67.8 pmol/l even though serum was only 153pg.

  • That BMJ article goes on to say that patients can be tested after a couple of months if the treatment has not worked - to see if the patients blood levels are actually increasing.

  • I did that too and after a 7 day break from b12 got an active b12 of >257pmol/l.

    It feels like I'm urinating on a gusty day.

    I fear my damage is well and truly done.

  • Good luck Polaris! x

  • Thank you Denise. Your posts for sourcing supplies were v. helpful 🙂

  • As yours were to me, when I was starting out! Thank YOU!

  • I am also trying to get to the bottom of my B12 deficiency. I want a definite answer to why now and why me! I was diagnosed just before Christmas, had IF and celiac tests both not conclusive. After my loading doses I went back to GP for answers, he was literally shrugging his shoulders. I told him that I really needed to know as my dad died aged 52, eleven years ago, of stomach/ liver cancer. As autoimmune diseases increase chances and with a parent having stomach cancer I felt that he should investigate further. After dropping that bombshell he referred me to gastroenterologist!

    I think you want answer, too, but as long as your symtoms are being treated, some doctors are not really interested in the 'whys'. BTW I don't have any symtoms of stomach C, I just wanted answers and to jolt him into action!

  • I despair totally about the GPs' attitude, ignorance and arrogance regarding B12 deficiency.

    To be so unaware and worse so unwilling to learn about the disastrous consequences to the patients who suffer from B12 deficiency is unacceptable and a huge act of negligence. Gps and the services they offer should be checked regularly by an independent body to assert whether they are fit for purpose. They are getting away with murder....

    Do hope you can find an honest answer...

  • Thanks, it's the nonchalant Shug of the shoulders that gets me annoyed. It's as though you just have to get on with it, 'what do you want me to do?' attitude. Going this afternoon for a 'face to face' before any endoscopy takes place. I have a feeling that I'm going to be fobbed off, well, he might try!

  • I find daily spoonfuls of sauerkraut (better than any other probiotic I'd ever tried) and g/f diet has meant gastritis, high H/pylori, acid reflux, IBS, gall bladder symptoms, issues that plagued me for years and treated with PPIs and high doses of antibiotics, disappeared.

    Many researchers believe leaky gut/intestinal malabsorption is the source of autoimmune disease and, a gluten free diet often helps.

    I'd recommend Dr Datis Kharrizian's books "Why do I still have Thyroid Symptoms, when my Lab Tests are normal" and, "Why isn't my Brain Working". He is a leading neurologist and researcher into the gut/brain connection and it's link to autoimmune diseases. He lectures post graduates but his books are very readable to the layman. One of his recommendations is a gluten free diet and he confirms that you don't necessarily have to test positive for coeliac or have obvious gastric symptoms to be sensitive to gluten.

    Foods high in gluten can damage the microvilli (little hairs) that line our digestive system and make it harder to absorb vitamin B12, D3, and other vital nutrients like selenium, magnesium, etc. sometimes affecting the vulnerable thyroid gland and leading to other problems.

    It seems to explain why so many of us on this forum have Hashimoto's or other Autoimmune diseases as well as PA/B12 deficiency.

  • Ive been gluten free since December however every single autoimmune blood test they've ever done has been negative and some have been done more than once.

    I got negative for celiac and also for PA & IF twice.

    My story began after either picking up a virus as a colleague was also poorly the same week or from going down a drain and getting an infection from getting splashed with sewage in 2008. I got a lot of antibiotics and I've not been the same since. I had a raging fever etc etc for a week and lovely shock like episodes while I was on the treatment.

    I became briefly paralised from my toes to my neck following that illness on the 10th day (it happened that way and went up my body quickly in about five minutes). It resolved once I got to hospital but for months after it my hands and legs felt like they responded to slowly when I tried to move. That resolved eventually.

    I've been fatigued since then but it got much worse last year around June/July then really bad after August 6th when I pushed my self hard exercise for the first time in ages.

  • Sounds horrendous and serious Steap. Was it Weils Disease ? This can be picked up from sewage, canals, rivers, etc. even unwashed fruit on the ground - anywhere rats are around....

  • Never found out as the blood tests were inconclusive 🙁

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