I told my Dr. what I had been told and he does not see how it is possible, so I am coming to you. I was told that because I had taken Proton Pump Inhibitors for years, that that caused my B12 deficiency and that I would HAVE to take B12 shots for LIFE, because my stomach is permanently damaged and it won't allow for absorption naturally any more. My Dr. says that since I stopped the Proton Pump Inhibitors, that I should not continue to be B12 deficient...and should not have to take shots. He does not see what kind of damage could have been done permanently. The neurological symptoms that I am left with is damaged nerves or Peripheral Neuropathy in my legs. I have had it for 3 years, and do not receive any changes from injections now. I receive injections twice weekly. Thank you.
Has B12 deficiency permanently damage... - Pernicious Anaemi...
Has B12 deficiency permanently damaged my stomach.
I was the same ..was on indigestion tablets...for ages due to severe heart burn was that bad had shooting pain under armpit when it was burning..as soon as I come of them started having muscle weakness. .then other symom's burning tongue fatigue..muscle weakness .back pain..now my stomach is gurgling and bloating like volcano...been on injections 9 months now I'm sick of going docs as when I was 18 I had cancer..so every thing I've been getting cus of low b12 ..I have to double check just had all bloods done ..everthing fine .but still suffering symtoms .wrecks ur head
I have pernicious anaemia that was diagnosed a bit too late . This is caused by antibodies that attack the parietal cells which produce stomach acid and intrinsic factor . As a result I had awful gut problems , which were alleviated by taking a probiotic . ( I took Symprove,which is a water-based probiotic ) This helped no end . I do not take probiotics any more, and my gut is no bother . Perhaps a pro-biotic might help you ? Even if it doesnt, it will do you no harm at all . I’m so sorry that the PPIs have caused you such trouble . They are really evil if taken over a long period . The Pharmaceutical industry makes billions from them . They give a quick fix , but cause endless damage over a long period .
Ask your doctor what the evidence is for the inhibition of B12 absorption by PPIs being transient.
I have done lots and lots of searching of the medical literature and I can find no studies that followed up people with iatrogenic B12 deficiency caused by long-term PPi use after they stopped the drugs.
As far as I can tell there is no evidence at all that the damage is not permanent.
Thank you. Please see my latest response below to Gambit62, that explains my journey. I would appreciate any and all thoughts that you may have on my desire to come to a decision as to whether or not I need to continue B12 injections now and for life....or whether I can wait the required amount of time without B12 in my system, and then to get B12 and folate tested again, to see since I no longer take PPI's or Metformin stopped 3 year ago, , if I am naturally absorbing an acceptable amount of each without the shots. Again, Thank you so much. I really am not sure WHY I am getting injections, any more.
The vagus nerve can also be damaged by B12D and because it controls the parietal cells in the stomach, IF as well as acid production from these cells can be affected.
In my case, stomach surgery for an ulcer (i.e. partial vagotomy) intentionality cut some of the smaller branch nerves on the two main branches of the vagus nerve that go to the front and back of the stomach with the intent of reducing stomach acid. No one had told me to take B12 supplements to prevent the B12 deficiency.
This medical procedure has since been struck off and is no longer recommended, but at the time, 27 years ago, it was fantastic for me. However, 10 years ago after additional nerve damage my B12 deficiency showed up and I went onto B12 injections.
I think it’s a downward spiral that some stress or chronic condition leads to a small deficiency which causes some nerve damage that is not noticeable. The damage to the vagus nerve reduces acid and IF in the stomach which exacerbates the next stress condition. The continuing of ineffective treatments for chronic conditions like heartburn just allows the downward spiral to continue while kicking the can down the road so to speak.
Nerve repair is very slow if at all possible and I’ve come to the realization that the repair is fragile at best and any setback Puts you back a square one like in a game of chutes and ladders where the chutes that take you down are many and there are few if any ladders.
You need to be on monthly or weekly hydroxo, cyano or methyl B12 injection and supplement with folic acid and a daily multivitamin to just set a baseline. This puts you on the slow steady road climbing out of the hole - similar to the slow road in the chutes and ladders game.
Then anything the makes things worse like foods such as gluten, dairy, soya, natural flavor, autolized anything, these need to be eliminated from your diet. Use a logbook to figure these out for yourself as they don’t typically show up on allergy testing. there is a 3 to 48 hour delay from an offending food to the onset of a symptom because the gut is involved. Symptoms such as brain fog. These are the chutes that take you back down. For me, alcohol is also out completely, others don’t have as issue here.
You will also need the logbook to isolate new symptoms that show up 3-48 hours after each injection. These are very similar so it is counterintuitive that they are “good” symptoms that indicate nerve repair is occurring. These can be hunger, nerve/muscle pain, increased anxiety, soft bowel movements.
Try to assess a severity score to each of these types of symptoms and compare to the same time on previous injections to monitor progress. Any easy way to check the time is to reset a clock to day zero at each injection then compare day 1 to day 1 in a previous cycle. It’s a long process. I’ve not found a ladder yet in this game.
"The vagus nerve can also be damaged by B12D"
If this were so then there would be many, many more symptoms. One of which would be death.
As B12 deficiency has the potential to damage any and every nerve, cell, etc in the body, how do you explain your idea that in isolation it doesn't damage the vagus nerve???
Because there is no sign of it. The vague nerve controls dozens of aspects of bodily functions. Damage to it will cause much more obvious symptoms that a bit of tummy trouble.
When vague nerve damage is suspected it is rare enough for papers to mention it. onlinelibrary.wiley.com/doi...
It depends on the degree of damage.
Even back massage can make a difference to the functioning of the vagus nerve and therefore digestive responses.
Be careful that it isn't a case of "there's none so deaf/blind as those who don't want to hear/see", such as in the case of most medical practitioners and the need for B12 injections of greater frequency than 12 weekly!
Impressive reply with interesting/good suggestions, thank you!
Unlikely the PPIs caused any damage but they would have been helping with symptoms that were caused by underlying damage. PA is an autoimmune disorder in which your body attacks the mechanism in the gut that allows you to absorb most of your B12. It also results in low stomach acidity ... which has the same symptoms as high stomach acidity - including heartburn ... so the PPIs probably just accelerated the deficiency rather than causing damage to the gut.
I do not have PA. If I do not have stomach damage that keeps me from absorbing B12....since I stopped PPI's three years ago ...WHY do I need to continue injections ???? Couldn't I take B12 orally ? My nerves are damaged... and I take all the vitamins and minerals needed for B12 to be absorbed properly. Why Are shots needed any more ? I haven' heard of anything that really that HELPS nerves heal any faster.... or better... just to take B12 so it doesn't get worse. Thank you for your thoughts.
why were you on PPIs? Has a gastro done an examination? Have you been tested for SIBO?
Have you seen a neurologist to confirm that the damage isn't caused by something else .
You don't need to take any other vitamins to ABSORB B12 in the gut, though having an absorption problem (eg PA, SIBO, Crohn's, low stomach acidity) may result in problems absorbing other vitamins and minerals.
PPIs do not generally damage your stomach. They do interfere with the absorption of B12. They are used to fix a particular problem in which one valve keeps opening at inappropriate times and the contents of the stomach flow back into the oesophagus. This problem can have a number of causes - high stomach acidity AND low stomach acidity are among the potential causes. Long term use can affect the balance of bacteria that grows in your gut so I guess it could increase the risk of SIBO but I really don't know.
Your GP is correct that stopping PPIs would mean that you would start absorbing B12 again IF YOU DIDN'T HAVE ANOTHER ABSORPTION PROBLEM. If you were given the PPI because of symptoms of a condition that causes an absorption problem then stopping the PPIs wouldn't make any difference to that unless the condition had been treated.
Part of what PPIs do is lower stomach acidity. As a certain level of acidity is needed to absorb B12 this is why they can interfere with the absorption of B12.
B12 deficiency does not damage the stomach (though it might possibly change the composition of the bacteria living in your gut). Damage to the terminal ileum causes B12 deficiency.
Thank you. I was hospitalized at one point because I became numb from the waist down. All tests were given. No PA. It was determined I had Vit B 12 deficiency due to taking PPI's for 12 years for ACID REFLUX. I had also started Metformin a few months before the neurological symptoms occurred. I also had been experiencing shortness of breath, exhaustion and balance issues. They gave me a week of B12 shots in the hospital and I have been continuing them once or twice a week for the past 3 years. The numbness in my arms is gone and in my trunk, but it remains in my legs, along with a very heavy feeling, and thighs that feel like the muscles are torn in them. It feels like I am dragging around 500 pound weights on my legs. Stairs, w
getting in a car, anything to do with raising my legs, etc, is difficult. If I exercise my legs, it does not mmake them stronger, but instead it totally fatigues them and makes the symptoms worse. There used to be times when I thought all was getting better....when my legs and thighs were good and only my toes were bad....but then those times revert back to full symptoms. It is very frustrating. It has been a year since symptoms have subsided....so I am of the impression that the damage is now permanent. I have seen many Neurologists, all to no avail. I only take a Tums tablet when needed now for GERD. I do not know what SIBO is. BOTTOM LINE : do you agree that if I stay off of B12 for 4 months ( or whatever the recommended interval is ), and then get tested , that if my B12 is OK and my FOLIC ACID score is OK, that then I do not need to continue INJECTIONS FOR LIFE ??????? I could continue to take a Complex B vit pill perhaps plus laege dose B12... ?? My Dr. will be very glad to hear that he is correct, that the PPI's would not cause lasting stomach damage. I have been telling him the opposite for a long time. I look forward to your opinion on how to proceed from here . Thank you so very much.
It is extremely difficult to rule out PA - if it was ruled out because the IFAB test came back negative then your doctor needs to be aware that the test gives false negatives 50% of the time, so a negative is a long way from ruling out PA. The problems with the test are so significant that the BCSH standards used in the UK refer to IFAB negative PA.
These standards can be accessed here
onlinelibrary.wiley.com/doi...
As GERD and Acid Reflux are both symptoms of low stomach acidity as well as high stomach acidity, it may be that you already had a condition that would lead to B12 deficiency eventually but the PPI (and metformin) just accelerated the process.
There is a significant group of patients who have been treated with loading doses who require much higher levels of B12 post loading shots than they did before.which means that these patients experience return of symptoms before levels fall back below the range. Nobody is quite sure why this happens but the net effect is that the injections have made the process that allows B12 to pass from your blood to your cells has become less efficient. These patients respond well to much more frequent injections.
Suggestions:
a) check if you have low stomach acidity or high stomach acidity. If you have low stomach acidity then that will impair your ability to absorb B12 from your diet. You could try high dose oral tablets but these may not work. Your best bet is injections.
b) there is a test that involves looking at gastrin levels that may be more effective in identifying PA than the current test - gastrin levels tend to be very high in patients with PA but I don't think it is yet recognised as a test for this .... and I am not sure how expensive it is. Gastrin is a hormone that encourages your stomach to produce gastric juices. As these should be acidic it turns off when your stomach reaches a particular level of acidity. If it doesn't reach this level for whatever reason (generally damage to the cells that produce the acidity) then your body will continue producing gastrin all the time,
c) studies on how quickly B12 is removed from your blood show an enormous variation - including some people where it took 4 years to clear. That means that serum B12 is extremely difficult to interpret post loading shots, The general recommendation is to stop supplementation for 3-6 months before trying to get a base-line for B12 levels. It can be useful - particularly if results come back below normal range - but if they come back higher that doesn't necessarily mean that everything is okay.
d) you could try testing for a functional B12 deficiency - lots in your blood but not enough getting through to your cells - this is done by looking at products from two processes that use B12 in your cells and will build up if the cell doesn't have enough B12 - homocysteine and MMA - but these are only 2 processes and there are some haematologists that suspect this means they don't tell the whole story anyway.
One take away from all of this is that tests are extremely difficult to interpret.
The best way of mnanaging B12 absorption problems is generally to go by symptoms, ie keep a diary of your symptoms in relation to the timing of your injections. If the symptoms improve with an injection and then return and you can show that this correlates to the timing of injections then that helps to provide the frequency with which a given individual needs injections. If the injections don't actually make any difference then that implies that B12 isn't actually involved in whatever is going on.
Thank you again. There are no differences in my symptoms after receiving my B12 injections. My peripheral neuropathy remains the same . I live in the US.... and am going to try to order an Active B12 test through the mail because none of the labs preform them . Homocystine and MMA levels are fine. My ted blood cell count is fine. Nothing is pointing to PA. It seems like I will continue the shots until I can come up with a way forward. I appreciate your help.
I forgot to mention that my Intrinsic Factor is fine too .
if you mean that the IFAB test came back as negative please see above re problems with the IFAB test - a negative doesn't mean that you don't have anti-bodies. The test is very specific (rarely gives false positives) but it isn't very sensitive (meaning that it often gives false negatives).
I live in the US... I am not familiar with an IFAB test . What would our equivalent of an IFAB test be, please. Thank you .
There are currently two tests for PA as a specific cause of B12 deficiency.
a) Gastric Parietal Cell Antibodies - no longer recommended by WHO because of the high probability of a false positive (the test isn't very specific)
Intrinsic Factor Antibodies - which is IFAB.
Suggest that you speak to your doctor about the tests that you have had and what they might currently be called in the US.
Last question. IF it is determined that I no longer have an absorption problem ... since I ended my use of PPI's 3 years ago ...and I do not have PA... would you say I could discontinue shots and take oral B12 and folate if needed. My only symptoms are Neurological , in damaged nerves caused by B12 deficiency. I presume I should continue B12 supplementation because it may aid my nerves in their fight to heal .If not, then I won't continue. I truly appreciate your help. The doctors I have used are useless.
If you don't have a B12 absorption problem then in theory you shouldn't need to supplement unless you don't have any B12 in your diet (eg Vegan) - and even then the amounts that you would need to supplement are small (10mcg rather than 1000mcg).
Having had loading shots may mean that you now need much higher levels of serum B12 - functional B12 deficiency covered above.
This forum isn't a substitute for professional medical advice. I'm not medically qualified and although I recognise your frustration and the broken trust issues I think your best bet is to try and find a good neurologist and speak to them.
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B12 deficiency not treated
battling B12 deficiency/pernicious anemia
Weird symptoms- B12 deficiency? 
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