I have so many ???

[Cherie9742]

Am I understanding that unless you restrict animal products, if you are B12 deficient than its an absorbtion problem due to various reasons and therefore always PA if not diet restriction related?

[KimberinUS]

I am nit an expert but my understanding is that unless you have intrensic factor antibodies you do not have PA. Instead you have a b12 deficiency. I tested b12 deficient in 2014 but was only diagnosed with h pylori in 2017. That was the first time i was tested for h pylori.

I hope this means once h pylori is gone my stomach cells will heal and once again start producing intrensic factor so that i can absorb b12 from food again and can stop getting b12 injections.

I dont think there is any difference in the symptoms of having pa (autoimmune) or being b12 deficient. But if the deficiency is not autoimmune then once the root cause is addressed then your body might be able to heal itself and b12 absorbtion can begin again!

[Cherie9742 in reply to KimberinUS]

Hi. Were you producing intrensic factor in 2014 when diagnosed? And now that you are H P positive you are not producing I F? Do I understand that whether you are or armt producing IF, as long as you dont have IF antibodys than you wouldnt have PA? Forgive my ignorance. Thanks

[KimberinUS in reply to Cherie9742]

I was told nothing of importance by my doctor when my b12 deficiency was diagnosed. I was only told to take suppliments which i did for over 30 months while my symptoms got worse, to the point i thought i might have dementia as my ability to comprehend and remember anything along with physical stamina and ability to breath got worse.

It was only once i joined this forum in May 2017 that i found out there could be "root" causes and that taking b12 suppliments either doesnt work or barely works for those with absorbtion issues. I started injections in May 2017 and could start to breath and comprehend info i was reading.

I was tested for intrensic factor antibodies in July 2017 and result was 1.0 with 1.2 (if memory serves) as being positive. That test gives a false negative alot, so i was a long way from being in the clear.

I asked for h pylori testing in August 2017 to rule it out. I didnt ask prior to that, even though responses to my questions on this forum included it as a possiblity, because i did not have heartburn or stomach pain, which seemed to be the major indicator. I actually had an argument with my doctor when i did finally ask to get tested, as since no pain, my doctor had ruled it out without even testing for it.

I was positive. Got treatment and waited, like an idiot for 3 months, til i got retested and was still positive.

I took treatment again and have received the all clear just today!!!

It has been 8 weeks since my 2nd treatment ended and i had been hearing my stomach rumbling off and on over the last 8 weeks which i took as a good sign that my stomach was starting to work again. It did not rumble after the first h pylori treatment.

I had tried to help digestion along by taking betaine hcl to improve acid level after 2nd treatment.

I remained foggy brained and dizzy with issues being able to focus until i started supplimenting with zinc which you need to produce stomach acid and to transport vitamin A to the eyes.

I also had reduced sense of taste and smell and very loose stool. I say that because i dont recommend everyone suppliment with zinc (i was already getting some in my multivitamin) but i had so many symptoms of a zinc deficiency i was willing to try it breifly (i was thinking 4 weeks max) to see if it would help. I took 25 mg 3X daily for 4 days before seemed to have vision and dizziness improvment but placebo effect can be so strong sometimes that i was not sure. I backed down to 25mg 2X daily on day 5 as too much zinc can be bad and my vision is clear and brain fog is lifted and im now only using 1betaine hcl tablet per meal, instead of 6, and i am still hearing stomach rumbling.

It is early days as this is only day 8 of high dose zinc suppliment but i am hopeful. There is not a good test for zinc status that i am aware of otherwise i would gave tested prior to supplimenting.

Best of luck to you during your journey to returned good health.

[Cherie9742 in reply to KimberinUS]

Wow! I will look into H pylori. My doc called and said all my test were normal but I saw on b12 a paragraph that stated 10% of patient experiece nuerological symptoms below 400.. so I asked my doc about it.. she said.. oh yeah if you are under 300 you should start injections.. why did she state my labs were normal?? Im so fatigued and out of breath that I can barely get off the couch and the dizzyness is terrible. Im still waiting on TF test. I cant wrap my mind around why docs act like ppl seeking B12 therapy is comparable to a morphine addict seeking morfine. 🤔

[fbirder]

If you eat enough meat/fish (and almost all non-vegetarians will do) then it's probably an absorption problem.

PA is just one possibility. As KimberinUS says, H. pylori infection is another. I would suspect that taking PPIs (prescribed or OTC) is a major cause nowadays. It seems half the people I know are taking them.

[Cherie9742]

Hi. I dont take PPI and was even low carb diet for many years. Im interested in finding the source and trying to educate myself on what would cause absorbtion issues if not diet or medications as Ive ruled those out as a cause.

[Cherie9742]

After researching h pylori I think chances of me having it are slim as ive repeatedly been treated with antibiotics for diverticulitis. If by chance I had H pylori it would surely have been treated via iv antibiotics in one of my many 5+ days of hospitilization. I do have constant burning stomache pain was told it is silent gerd

[KimberinUS in reply to Cherie9742]

I would get tested. These doctors like to write off stomach pain as no big deal since so mant people have it. But guess what, h pylori is present in up to 20% of the population in the industrialized world and higher in 3rd world countries.

H pylori causes up to 80% of all stomach ulcers, not spicy food or stress.

H pylori is treated with 2 antibiotics at the same time, not just one antibiotic. Add additionally with a ppi and bismuth to reduce stomach acid so that the antibiotic can get to and kill the h pylori when it is shifting from sloughing stomach cells to new stomach cells.

[Cherie9742 in reply to KimberinUS]

I once had a scope of my tummy and was told I had ulcers probably from inuprofen they said. That was around 10+ years ago. Were you blood tested or breath tested?

[KimberinUS in reply to Cherie9742]

Breath

[JMN2017]

Several medications, including prescribed, can cause absorption issues and hence B12 defiency.

PPIs and other medication that lowers gastric acid, Metformin - diabetic tabs, the pill, and so it goes on. It seems many doctors are ignorant of these medications causing such problems so it's worth checking out your medications and the affect re vitamin absorption

[helaynie]

My digestion has improved greatly since I introduced fermented foods into my diet. The doctor also told me to eat sauerkraut, kimchi etc for b12 issues.

[Bebster]

Probably worth mentioning also that Entonox (Nitrous Oxide) gas, used routinely as a relaxant in operations can also be a cause of B12 deficiency. Or at least a catalyst for significant worsening of symptoms if you already have an underlying cause. This was the case with me I think. With this one though, you at least know if you have or haven't taken it and when, so can correlate it with other issues.

[helvella in reply to Bebster]

For technical accuracy, Entonox is 50% oxygen: 50% nitrous oxide. Hence, often referred to as "gas and air".

[Bebster in reply to helvella]

True. I cannot argue. Its the Nitrous Oxide that does the damage though, the oxygen is usually safe

[Sleepybunny]

Hi,

It's possible to still have PA even if Intrinsic Factor Antibody test result is negative or normal range. See links underneath for more info on Antibody Negative PA.

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

It's also possible to have B12 deficiency due to an absorption problem without it being PA eg Coeliac disease plus others

See links below.

Risk factors

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

I am not medically trained.