Was wondering how I differentiate between B12 deficiency from Pernicous Anemia versus Ileitis?
I have ileitis confirmed from a colonoscopy and am waiting for a calprotectin test to confirm if inflammation is root cause. I have seen that ileitis can cause B12 absorption issues.
In terms of Pernicous Anemia my grandfather had it and I suspect I might have it - and have ordered a test that looks at vitamin B12, iron status, red and white blood cells, and intrinsic factor antibodies.
Symptoms a lot of peripheral neuropathy - burning pain in toes/neck/chest, numbness when nerves pressed like ulnar nerve and pinky and index finger go dead, tiredness, short term memory not great at all, struggle with doing stuff (not me), swollen rectum, often sludgy poo.
Have been diagnosed with Ankylosing Spondylitis and have a fair amount of neck joint degeneration.
I really just want to know if I need to do anything else at this stage to get to the bottom of things?!
Any help/advice greatly appreciated!
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shawlander
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As your ileum is affected , your absorbtion of B12 will be impaired. The ileum is where B12 is absorbed . You will need B12 injections . You already have symptoms of B12 deficiency .
Pernicious Anaemia also prevents absorption of b12 , but for a different reason . It is an autoimmune condition that produces antibodies that destroy the parietal cells in the stomach . These cells produce The Intrinsic Factor which is needed to facilitate b12 absorption, and stomach acid also needed for the absorption of all vitamins , minerals and trace elements .
Yes Pernicious Anaemia can have a genetic connection. The test for Intrinsic Factor Antibodies cannot be relied upon , because they often do not appear . About 50 % of PA patients test negative , and doctors believe that means they don’t have PA .which is terrible SYMPTOMS must be treated . That’s most important . But yes , get those tests done . That’s important . Best wishes .
Thank you for your advice. The dr is relying on a test result to act. Ive listed all of my symptoms all of which relate to b12 and even told him I think illetis is causing b12 uptake issue, that a complete blood count and standard b12 test doesnt always tell the picture. Im hopeful the tests Ive listed will pick something up. It is very frustrating.
The gall bladder shares a duct and space with the pancreas that produces insulin. Insulin breaks down glucose so we can use it. B12 is essential because it releases energy inside the cells. Hence B12 deficiency & diabetes share similar symptoms and a HbA1C blood test gives a reading of our average blood glucose fo the past 3 months. If it is too high that indicates diabetes & most likely type 2. It needs to be ruled out. I have both and it is very challenging to deal with both.
Yes , so many of us have gone through hell because most of the medical profession is totally ignorant about B12 deficiency / Pernicious Anaemia . I have an irreversible symptom -peripheral neuropathy in my feet because of first delayed treatment and then undertreatment . You probably realise than all of us on this forum are obliged to self -inject ( I need a weekly injection)
If you don’t get your B12 injections , then you must self inject. . You can get information on how to do that here if that shoujd happen . It is easy and very cheap . It’s so lucky that B1/2 cannot be overdosed , unlike other vitamins and minerals .
So come back here if you don’t get your injections , I urge you .
Thank-you. I have to keep my mind under control as well.. my uncle has MS badly and I rationally I know I dont have it but you know how the mind works. Im onto GP today to get an emergency appointment and laying out all 21 symptoms all of which indicate B12 deficiency. I want them to take bloods and send for tests (even though I have done this already privately), then load me up with B12 injections and continue to investigate underlying cause - which I think is ileitus caused by either Chron's or Ankylosing Spondylitis- and then also refer to me a haematologist for ongoing monitoring. If I dont get the shots from doctor then I will get them myself... and will def come back on here.
I even looked up the clinical guidelines from NICE last night which recommends so printed them out to take in..
When results are indeterminate or suggest deficiency is unlikely
1.3.12
Consider a further test to measure serum MMA concentrations in people who have symptoms or signs of vitamin B12 deficiency and an indeterminate total or active B12 test result (see table 1). For when to consider starting treatment without waiting for a serum MMA test result, see recommendation 1.3.14.
1.3.13
Be aware that people of Black ethnicity may have a higher reference range for serum vitamin B12 concentrations than people of White or Asian ethnicity.
1.3.14
Consider vitamin B12 replacement for people who have an initial test result that is indeterminate (see table 1) and meet any of the following criteria:
they have a condition or symptom that may deteriorate rapidly and have a major effect on quality of life (for example, neurological or haematological conditions such as ataxia or anaemia)
they have a condition or suspected condition that is an irreversible cause of vitamin B12 deficiency (for example, autoimmune gastritis)
they have had surgery that can cause vitamin B12 deficiency (such as a gastrectomy, terminal ileal resection or some types of bariatric surgery)
they are pregnant or breastfeeding.
If also carrying out a further test to measure serum MMA concentrations, start vitamin B12 replacement while waiting for this test result.
1.3.15
Advise people with no symptoms or signs of vitamin B12 deficiency and an indeterminate total or active B12 test result (see table 1) to seek medical help if they develop symptoms or signs of deficiency.
1.3.16
If the person's initial test result suggests vitamin B12 deficiency is unlikely (see the sections on thresholds for initial test results and factors that can affect total or active B12 test results):
investigate other causes of their symptoms and
if they are still experiencing symptoms 3 to 6 months later, consider a repeat of the initial test.
Hi I was borderline (maybe deficient) on the nice guidelines! I had been taking B complex for over a year! I had a colonoscopy too and I have inflammation in my Iliem and Gastritis but my Gp refused to give me B12 injections! I am PA negative! She wrote to a haematology and they sent back a standard letter to say it’s not their job basically. So know I’m doing my own injections with B12 usually monthly. Good luck 🤞
No! I do believe it maybe my gastric band causing a lot of problems ( sorry didn’t say) so am due to have it removed this year sometime so won’t really know until that’s removed! I am also a vegetarian! I still take B complex daily and inject B12 about one a month. But I am also Hypothyroid! And take 112.5 mcgs daily.
My Folate was dire too! It was 3 hence B complex as it has folate in. ♥️
You'll see from a post further down the chain details of the extreme stress I was exposed and then not long after that all of the neuropathy kicked off. So not withstanding family history of both PA and MS that may or may not be relevant, Illeitis, a huge dollop of stress may have been a trigger.
I didn't test positive for intrinsic factor antibody's, but did for parietal cell antibodies and was diagnosed. I think both tests may be of assistance, but as wedgewood advises it still should be treated regardless of results, just may save you an unnecessary argument or two.
Thank you so much. I will also do the parietal cell test. Note a recent complete blood count for me was normal.. including red blood cell count and red blood cell volume.
This all kicked in last year after I had my gallbladder removed.. which turns out can impact B12 levels as well. Not sure how long Ive had the ileitus. Given I have family history of PA I will check for that but suspect ileitus and gallbladder removal is the culprit.
hi shawlander. Generally speaking the symptoms of B12 deficiency tend to come on very slowly- years because the body has substantial stores of B12 compared to the amount that is used on a daily basis. The symptoms overlap a lot with folate deficiency. Folate is much more responsive to dietary intake and as it is absorbed in the terminal ileum and you say that the symptoms came on very quickly after your gallbladder operation it may be that folate is a more significant factor here. That doesn't mean that B12 isn't involved just that there is one major factor that points to folate deficiency rather than B12, at least in the period post gallbladder removal.
Thank-you! Regarding folate deficiency testing is it straightforward (unlike B12 deficiency testing which appears to be difficult to get an absolute view on). My last folate test when I had the same episode last year in Apr-May 24 was ok according to the doctor.
Folate test is indeed, much easier to interpret so if you had it tested when the symptoms started and it was okay then the levels were likely to be okay. It may be worth looking back at a list of B12 deficiency symptoms and thinking back over a number of years - just because they creep up on you so slowly you don't notice them and then everything starts to bite at once and you really notice them and think it came on suddenly when a step back shows otherwise.
Thank- you. I had noticed for sometime even before operation that compression at backs of legs would result in numbness.. sitting on the loo would result in temporary numbness. Also name recall has been poor for a few years and for a long while would get tired on way home from work and have to stop to have a sleep. Hair greyed a lot too. I put that all done to getting older... but maybe not.
grey hair isn't causally related to B12 - just that there seems to be a correlation between going grey early in life and developing PA. Hair thinning can be the result of B12 deficiency.
Vitamin B12 deficiency can cause PGH [ premature graying of hair ] through unknown mechanism. About 55% of patients with pernicious anemia had graying before 50 years as compared to 30% in the control group. Decreased thyroid hormones cause premature graying, alopecia, and changes in hair morphology. Thyroid hormones T3 and T4 act on hair follicles directly to increase melanogenesis.
My hair only went grey where I had vitiligo on my head, which is of course also connected to B12/folate. The vitiligo stopped spreading once I started to give myself/get treatment.
A folate test isn't always clearer, because it is one of the vitamins that can pool - in the absence of enough B12, serum folate may rise for some and it did for me. Mine was near top of range and actually dropped to mid range when I started supplementing methylfolate. I also stopped bouncing off the walls, vertigo and tinnitus went away. So you may be ok, but that isn't a given. Folate deficiency alone can cause neuro symptoms - apparently characterized by a slowly progressive and sensory-dominant pattern.
Absorption may be affected post-gallbladder surgery, of both B12 and folate (and vit D), but I also wonder given the speed whether your anaesthesia in combination with your other conditions was enough to push you over the edge.
Incidentally, is your uncle getting B12 injections for the MS?
Thanks for that info. I was wondering about the anaesthesia and whether I had any Nitrous Oxide.. but I can only recall a canula being used until I passed out. So presume it wasnt nitrous oxide. My uncle died a long time back - he tried a lot of stuff but it didnt work.
Although nitrous is more likely to cause a known problem, personally I think that any anaesthesia along with the stress of illness/surgery/recovery can drop B12 and folate considerably. All of my family members historically who got a PA diagnosis only crashed and got that diagnosis after the serious illness and/or death of a loved one, so I never discount stress as a trigger.
Thanks for that info. Yes stress does also factor... I did have huge amounts of stress before my symptoms kicked off. My wife got badly ill with pancreatic cancer then died within a space of 2 months.. I nursed her through it. The stress was off the scale that then aggravated my longstanding gallbladder issue. I had other aches and pains so got a scan only to be told I had a lesion in my back 30 mins before my galbladder op (maybe cancer but then confirmed as a benign hemangioma) and then the ankylosing spondylitis diagnosis. I'm a pretty strong guy but having all that chucked at me in the space of 5 months as well as looking after my 10 year old daughter was huge. Stress levels way down now like a year later and but I knew at the time there will be downstream impacts. Upto then life was good almost golden.. funny how it changes so quickly.. but Im hoping to get back to that point in the future ;-). I did look at some biochemistry info about how extreme stress can impact the gut but it was very complicated and I gave up!
I'm so sorry that you have been through so much, that does explain a lot, unfortunately. Stress depletes magnesium, zinc, Vit C, vits B5 and B6 as well as B12 and folate and also affects blood flow to the gut as well as causing havoc with microbiome balance. All can be improved, give yourself time and space with your daughter. The body has an amazing capacity to heal if you just give it a nudge in the right direction once in a while. Once you have your results, come back and let us know how you are doing. But I think you'll need B12 injections and this is a good place to learn, if you need to do your own at some point. It is easy, so nothing to worry about. They rarely test magnesium and most people are low, so you could just try that one for yourself. I use Better You oil spray on the skin at night, then you avoid gut absorption and can start with just a little and build up gently. You might be able to get B6 tested, but it is another awkward one as it can seem high when actually deficient. Either low or high may cause similar symptoms. (The inactive form, pyridoxine, which is what supplements usually contain competitively inhibits the active form (P5P), so it is generally better to take a little P5P). Best wishes
Passive absorption does not involve this process. It is absorption along the transit of the gut and isn't dependent on IF or acidity (though its also true that exactly how it works isn't fully understood). It was initially used to treat patients with absorption problems by providing them with concentrated liver extract (without addition of IF).
You’ve really got a “double whammy “ if you have P.A.
If you do have P.A . you will have low/ no stomach acid ( Hypochlorhydria/ Achlorhydria) which affects absorption of other vitamins and minerals
You really do need B12 injections . But many doctors are convinced that high dosage tablets can replace injections ( this of course has nothing to do with the fact that if a surgery has to employ an extra nurse for injections, that cost comes out of the sum that the surgery gets from the NHS . This sum has to cover all costs to run the surgery Cleaning , heating etc etc . What is left is divided up between the doctors . …………)
You may experience problems getting a GP to agree to maintenance injections more frequently than the standard 2-3 months. Many patients find they are unable to persuade their GP of the need and feel they need to self source — really inexpensive ( about £2.00 for everything ) [Edited by admin]
I wish you every success in your struggle to get treatment .
Another poster has mentioned possibility of folate deficiency after gallbladder removal (symptoms started not long after that) but I think given neurological symptoms its more likely to be B12 deficiency. Any thoughts on that?
both folate and B12 deficiency cause neurological issues which complicates diagnosis.
Please note that the PAS does not recommend self treatment but does recognise that many patients have extreme issues working with GPs, particularly if they need more frequent than the standard, with the result that they find themselves having to go down the route of sourcing their own injectables to maintain quality of life. The focus of the PAS is on trying to work with medical professionals to improve the treatment of PAS.
Well, vitamin B9 , called folate when it’s in food and folic acid in tablet form , works together with B12 . If you are low on folate / folic acid , then your B12 will not be working well for you.
Also low folate can give neurological symptoms.
Both low folate and low B12 raise homocysteine levels .
They are aimed mainly at health professionals and may contain details that could be upsetting to read.
1) NICE guideline B12 deficiency
2) NICE CKS Anaemia - B12 and Folate deficiency
3) Your ICB in England ( Health Board in Wales/Scotland) is likely to have its own local B12 deficiency guidelines.
If you want to read local guidelines and can't find them online then best bet is probably to submit a FOI (Freedom of Information) request to ICB/Health Board asking which B12 deficiency guidelines they use and for a link to or copy of them.
I have written some very detailed replies on other threads.
There may be some relevant threads listed under heading "Related Posts". this is a top right hand of screen if on computer.
May also be worth searching forum posts with "PA diagnosis" or "Diagnosis pernicious anaemia" to find other relevant posts. Click on Posts tab at top left of screen, just above title of this post.
I would think your GP has tested you for celiac, but the test isn't too accurate. Gluten can damage the villi in the ileum which will affect the way you digest lactose amongst other foods. Damaged villi are unable to produce lactase which digests lactose and also cannot reabsorb B12 to store in the liver before reuse in the stomach to help digest meat. As a consequence you become vitamin B12 deficient. My mother and father were diagnosed with Pernicious anemia, my father never had B12 injections and died at 75, my mother had injections but two and a half years after her GP announced she was cured and didn't need B12 injections she died, her B12 levels were very low, as I asked the hematologist to check them whilst she was in hospital before she died, but alas it was too late.
My GP thought I had MS, colitis and tested my B12 blood serum which was very low. I decided after researching that I'd stop all gluten, inject B12, and within a year, I could digest milk products, a lot of jointpain went, I could walk, my knee replacements were cancelled. And now I feel better than I have for 40 years. I just wish doctors weren't so narrow minded. I'm 69 in September.
GP is at the stage of determining what has caused the ileitus.. so awaiting calprotectin results. Could be the Ankylosing Spondylitis (which I have), could be Crohns (which is often found with AS) or something else. Im also investigating pernicous anemia as my grandfather had it and had the B12 shots. Just as wedgewood said I have the 'double whammy' indeed if you fling in the gallbladder removal it could be a triple whammy of things impacting me and possibly B12 .. ileitus, absent gallbladder and PA. So work ahead needs to deal with symptoms and also confirm root cause if thats possible.
Im suspicous that all of my neuropathy started a few of weeks after my gallbladder was removed. But might just be coincidence.
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