Hello all, sone advise please.

[Lowbattry03]

I am undiagnosed B12 diffident but started self injecting and it has changed my life. I am fast Approaching 50 and have been obease for more than 3/4 of my life. I have a friend who does have a diagnosis and hers 3 monthly injections of the NHS and I can’t understand how she is coping, but she was told it’s dangerous to take B12 long term, so should not increase the doses. She is now waiting for a diagnosis of possible pancreatic cancer. I have been reading up as much as I can and it surgested the B12 causes high histamine levels, wich could cause this cancer. What would you recommend she takes to reduce the histamine in her blood without affecting the B12 benefits please

[Narwhal10]

Hi Lowbattry03,

With regards to frequency of injections - we are all different. Plus, people do not realise until they are really well until they have a revelation of WOW this is how I am supposed to feel !!! Mainly because they have been dragging themselves around for years and regard that feeling as ‘normal’.

Your friend was told, ‘It is dangerous to take B12 long term’. Who told her this please ? It is a False statement. Very similar to ‘A vitamin B12 deficiency can be prevented by eating broccoli.’ Another False statement.

I am sorry to read of your friend undertaking tests and do hope that they do not have cancer.

I am unaware that vitamin B12 can cause high histamine levels. Generally, it is the opposite. A person can have Small Intestinal Bacterial Overgrowth (SIBO) or Coeliac Disease (CD) which is the root cause of their B12 deficiency but incidentally, can also have high histamine levels as well. This is also because of SIBO or CD. Therefore, it is not B12D per se.

A person usually knows if they have high histamine levels by itching, sneezing, gastrointestinal problems, hives/urticaria. Plus, I do not know of its link to cancer.

However, if a person does wish to reduce their histamine levels, they can take an anti-histamine which does contain lactose. Or try a low histamine diet from Swiss Interest Group Histamine Intolerance

histaminintoleranz.ch/en/in...

Best wishes

[Wwwdot in reply to Narwhal10]

Hi Narwhal

Excellent reply! Missed your common sense! Welcome back!

🤗🤗🤗

[Narwhal10 in reply to Wwwdot]

Blush, thank you. I hope you are well dot. I am officially ‘just loitering.’

Just a funny share, recently I was re-reading some of my essays for a particular course I had undertaken and thought, How on earth did I write them ? They are rather technical and scientific. Today, talking in person, I forgot at least 3 words and was a dipstick extraordinaire. 🤣🤪😘

[Lowbattry03 in reply to Narwhal10]

Thank you, it was the consultant at the hospital who diagnosed her, I was hoping if she increased her B12 as per the loading does she would improve like I have. She has several autoimmune illnesses including Vitiligo. We have previously discussed this diet so at least we’re on the right path. Thank you.

[Narwhal10 in reply to Lowbattry03]

My pleasure and great to know that you are taking responsibility for your own health. It can be a bit of a minefield especially when unwell.

Unfortunately, there is a lot of misinformation regarding PA/B12D which extends into the medical profession and I feel that it is important to be a member of the PA Society. Therefore, we can access accurate literature and educate clinicians on our own journeys. Membership is open to them too.

Sadly, nutrition including vitamins and minerals were taken off the medical students’ syllabus ten years ago. Feel free to access Gluten Free Guerillas on here. There are a few people who know far more than me and have qualifications such as Master degrees in Dietetics. So, they really know their Biochemistry.

😊

[posthinking01 in reply to Narwhal10]

I have actually proved this worked - I had high levels of histamine and had blood test showing that - and then a test later on after taking B6 and it had gone right down to normal levels.

Vitamin B6 is essential for healthy skin and a normal functioning immune system. It is a natural antihistamine with the ability to reduce histamine intolerance (along with vitamin C), making it helpful for people with allergies and histamine intolerance.

[Lowbattry03 in reply to posthinking01]

Thank you- I will get her some

[posthinking01]

Hi sorry to hear about your friend. Vitamin B6 reduces histamine !

[posthinking01]

If you have had a deficiency of B12 then your body will have stored high histamine levels - it isn't that B12 causes high levels it is the opposite - the high levels will resolve once the residue have been dealt with.

[Sleepybunny]

Hi,

I'm sorry to read that your friend is going through a hard time. I don't know about any links between histamine levels and B12.

"but she was told it’s dangerous to take B12 long term"

There is a lack of knowledge about B12 deficiency among some doctors.

Misconceptions about a B12 deficiency (from Dutch B12 website)

stichtingb12tekort.nl/engli...

Diagnosis and treatment pitfalls ( from B12 institute Netherlands)

b12-institute.nl/en/diagnos...

Help for GPs

1) PAS website has a page for health professionals.

They can join PAS as affiliate members, no charge.

pernicious-anaemia-society....

2) Have her GPs heard about Club B12?

club-12.org/

It's a group of doctors and researchers who are looking into B12.

They have regular zoom meetings and have hosted a conference in UK.

3) Good articles to pass to GPs

From Mayo Clinic, US

pubmed.ncbi.nlm.nih.gov/311...

The Many Faces of Cobalamin (Vitamin B12) Deficiency

Bruce H R Wolffenbuttel 1, Hanneke J C M Wouters 1 2, M Rebecca Heiner-Fokkema 3, Melanie M van der Klauw 1

Affiliations expand

PMID: 31193945 PMCID: PMC6543499 DOI: 10.1016/j.mayocpiqo.2019.03.002

Free PMC article

Recent BMJ article about B12 deficiency by B. Wolffenbuttel

In my personal opinion, he's one of the few doctors who understand B12 deficiency.

bmj.com/content/383/bmj-202...

Vitamin B12

BMJ 2023; 383 doi: doi.org/10.1136/bmj-2022-07... (Published 20 November 2023)

Cite this as: BMJ 2023;383:e071725

The author of above also wrote an article for PAS (Pernicious Anaemia Society) in Jan 2024.

Only One Chance

pernicious-anaemia-society....

[Lowbattry03]

wow thank you