B12 Deficiency- Cause Found! Please ... - Pernicious Anaemi...

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B12 Deficiency- Cause Found! Please read, just in the hope it helps you crack your B12 problem.

Ausuk profile image
10 Replies

Hello All,

Finally, after years of pleading and fighting to be believed, I've found the cause of my B12 deficiency and felt it worth posting, just in the hope it resonates with someone else in finding answers.

My symptoms ranged from struggling with day to day life (just generally not coping), exhaustion to the point of collapsing, multiple grand mal seizures, anxiety, suicidal thoughts... You get the picture. I was receiving weekly B12 injections, had a pill cam, endoscopy, gastroscopy, frequent and numerous blood work... which all came back fine.

I have been incredibly ill for 4 years, after having my son. Finally they diagnosed B12 deficiency, acknowledged my need for weekly injections, but cause unknown.

Then, after getting on top of my B12 and the jabs working WONDERFULLY, I got a viral infection (assumed Viral Meningitis), couldn't walk, think, talk in anything louder than a whisper. Couldn't drive, tolerate heat, eat... blah Life was very much over. Couldn't read my son a bedtime story... For 7 months life was a constant, unbelievable, brain bursting, eye bulging migraine (and so much more).

Then, I eventually realised that dairy was causing the ongoing effects of the virus, to the point it was stopping me walk, see, think, drive.

Now, my dairy intolerance is to the point that if I have the tiniest amount of dairy, i'm bedridden for days.

Only since being off dairy and having my bloods checked, have I realised that I no longer need B12 jabs.

I am writing this very briefly and simply (in comparison to what the last few years have really been like). It's been a hell and at worst, I said my goodbyes to my family as I didn't think i'd make it to the following morning as I could feel my body shutting down.

I never had any symptoms of dairy intolerance, nothing showed up on any blood work or internal tests or holistic tests (and still doesn't).

There seems to be very little about this on the internet, but basically, in short, my intolerance to dairy was blocking my body from absorbing B12.

Just consider this MAY be causing your B12 deficiency.

If this post could just help a few, it would make my last four years all the more tolerable. I have lost four years of being a new Mum... all because of not being heard or believed... all because of dairy!

If I can help at all, please feel free to message me.

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Ausuk profile image
Ausuk
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Ausuk profile image
Ausuk

Also, I'd love to hear from others if this is something relatively known about... the connection between B12 and dairy is new to me and little info exists online

clivealive profile image
clivealiveForum Support

Have you tried lactose free products Ausuk ? I found that I could not drink milk after having gastric surgery to remove two thirds of my stomach at the age of 17 in 1959 following a perforated peptic ulcer. A month or so ago my dietitian suggested lactose free produce and so far I'm coping well.

That I was diagnosed with P.A. 46 years ago is irrelevant to this subject as I have to have my B12 injected.

I wish you well

Ausuk profile image
Ausuk in reply toclivealive

No I haven't, thanks for suggesting.

I'd be interested to try lactose free one day. Good advice, thanks.

spacey1 profile image
spacey1

I have IBS (which could be B12 related; who knows?) and my IBS is definitely affected if I have too much dairy. I miss Greek yoghurt! But a bowl of yoghurt is not worth it! :)

Doesn't affect how often I need a B12 top-up, though

Ausuk profile image
Ausuk in reply tospacey1

Ah, good to know. Shame it's not related really, as then at least it would be a one change fixes all :-/

Thanks for responding

evilellie profile image
evilellie

That's really interesting. I developed a bit of dairy intolerance after having my son, and also pernicious anaemia a little later. Pernicious anaemia does run in my family, but I think it was having a baby that triggered it. The dairy intolerance after giving birth is sort of known about (if you google lactose intolerance after birth you will find loads of results), but it is not permanent usually. Mine has mercifully not lingered. Not something that doctors seem to be aware of though.

Ausuk profile image
Ausuk in reply toevilellie

Hi evilellie,

My goodness, I never knew there was a connection between childbirth and dairy intolerence! I will do some reading. Fascinating, big thanks. Learning certainly does provide empowerment, but also takes the wind out of me that no medic has ever given me info like this.

Thanks hugely

CH52 profile image
CH52

Hi Ausuk. I am lactose intolerant and it was at it's worse while I was at my lowest point pre PA diagnosis. All my levels were dangerously low. I automatically eliminated all dairy on my own as it made my gut hurt the worse of anything else I attempted to eat. I'm dairy free almost 8 months now and zero gastric distress. However my B12 and iron infusions are essential to my being able to live a normal life of sorts as I have PA and do not absorb B12 and I also do not absorb iron. Glad to hear you are ok but I would personally still be watching my levels of b12 ,iron , and folate to be sure things aren't slipping.

Ausuk profile image
Ausuk in reply toCH52

Thanks so much for responding CH52. You've made a really valid point and I think you're right, I probably should watch my B12 levels, rather than assuming all will be well from here on in.

It's interesting to hear your experiences, as this realisation is very new to me.

Huge thanks

ck101 profile image
ck101

Hi there, I’m a 48 yo male living with Vitamin B deficiency for years. I also have had disabling headaches for many years which I have put down to HSV1 (possibly incorrectly). A few years back I also had a few bouts of what they thought was pancreatitis despite a negative CT scan.

I was always intolerant to butter even as a child getting severe stomach pain, but not always so never managed to pinpoint the cause. Fresh cream always made me bloated. I have had a constant pain under my left rib which I always put down to the pancreatic issues.

Lately two episodes made me think dairy could be causing me an issue, I vomited after a milky coffee and got disabling stomach pains similar to the pancreatic episodes after eating cheese.

I have been dairy free for a week and a half now, the stomach pain has cleared up and I am now getting pimples on my scalp as I did with the Vitamn B12 injections.

I can also relate to the systemic issues you describe, the viral meningitis ( disabling one sided headaches, brain fog, being out of it, etc).

I think you are onto something, I hope this sorts my malady out being lactose free has cleared up my stomach issues anyway. Will check the vitamin B after 6 weeks or so.

I also have an eczema / dermatitis or psoriasis in my ear canal and on my fingertips. I have read this can be also caused by Lactose intolerance, I hope so..

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