Hi,
My gp has diagnosed IBS, is there any connection with this and B12 deficiency? I just wondered as it seems it has many symptoms.
IBS Diagnoses: Hi, My gp has diagnosed... - Pernicious Anaemi...
IBS Diagnoses
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Brookey
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It can be a symptom of b12 deficiency among many other.
Have you had a blood test for intrinsic factor or b23 level folate iron thyroid ect
You might get an endoscopy
IBS can exist on it's own too
Yes most certainly . The P.A. antibodies attack the parietal cells in the stomach . These cells produce the Intrinsic Factor and Stomach acid , both of which are needed in the breakdown process to enable the absorption of Vitamin B12 . Lack of stomach acid upsets the stomach flora i.e. good bacteria . The bad bacteria then dominates, causing fermentation instead of digestion . Result is stomach ache and bloating , and sometimes nauseous reflux . This is then called IBS . I found that the only help was a course of. Water -based probiotic called Symprove . But there are capsules which might help . If serious, there are Betaine Hydrochloric acid with pepsin capsules ( Amazon) to take with a protein meal . Natural probiotics like organic raw sauerkraut , kimchi , real yoghurt can also be beneficial . An acidic drink taken before meals e.g. diluted organic Apple cider vinegar with mother, lime juice etc .and taking smaller meals more often can be helpful . The gut problem that I had initially has gone, after the probiotic treatment , now that my Vitamin B12 regime is in place ( weekly injection) Hope this helps a bit . Best wishes .
Thank you Wedgewood, I have got gaviscon liquid which doesn't really help. But your information is very interesting and i am very grateful for your tips.
If you have Pernicious Anaemia then you will have a lack of stomach acid cause by autoimmune gastric atrophy. That, in turn can cause small intestine bacterial overgrowth (SIBO) which can have symptoms similar to IBS.
Another possible culprit is not related to a B12 deficiency. FODMAP sensitivity can cause symptoms very much like IBS. I should know, I've been finding out what foods affect me. I now know that fructose and, to a lesser extent, fructans can set off my guts.
Hi,
I wrote a very detailed reply on another forum thread with links to B12 deficiency symptoms lists, causes of b12 deficiency, B12 books, B12 websites, UK B12 documents and other B12 info which you might find helpful.
healthunlocked.com/pasoc/po...
I am not medically trained.
Thank you Sleepybunny, its nice to talk to someone who completely understands.......most medics I have asked questions about B12 seem to boohoo it!! Might be just me lol
I had IBS type symptoms for years. Most of these disappeared when I went gluten free.
Have you been tested for PA (Pernicious Anaemia) and Coeliac disease?
Hi Sleepybunny,
My PA test was negative, I have hydroxcobalamine injections every 12 weeks, and take vitamin b strong compound 1 daily but no, I haven't been tested for celiac disease.
Have you tried going FODMAP-free?
When you cut out gluten you also tend to cut out a major source of fructans. But others remain in the diet. Cutting out FODMAPs might have a better effect than cutting out gluten.
Tests for coeliac disease (spelt celiac in US) can be unreliable in some cases.
I'm surprised you haven't been tested ; if coeliac disease is diagnosed early enough and patient sticks to a strict gluten free diet, the damage it causes in the gut can heal and absorption of B12 in the gut may improve enough for B12 injections to be stopped.
However I believe long term undetected Coeliac can lead to permanent gut damage.
In UK, people who have B12, folate or iron deficiency are supposed to be tested for Coeliac.
UK guidelines suggest two tests
1) tTG IgA test which looks for antibodies to gluten
2) Total IgA test which checks who has IgA deficiency
Unfortunately some UK doctors forget to order the second test, Total IgA .
People with IgA deficiency need alternative tests for Coeliac because their bodies are not able to make the antibodies to gluten that tTG IgA test looks for.
If you have a negative test result in tTG IgA test make sure you also get Total IgA test.
In UK, doctors are supposed to advise patients with suspected Coeliac to eat plenty of gluten in more than one meal per day for several weeks before blood is taken. This is to ensure that if a person has coeliac disease there will be plenty of antibodies to gluten in their blood when it is collected.
UK GPs sometimes forget to do this.
A person with coeliac disease may get a negative test result if they weren't eating enough gluten before the blood was taken because there are not enough antibodies to gluten in the blood to register a positive result.
NICE guidelines Coeliac Disease
nice.org.uk/guidance/ng20/c...
Coeliac Blood Tests
coeliac.org.uk/coeliac-dise...
"My PA test was negative"
I hope your doctor knows it is possible to have Antibody Negative PA.
Flowchart from BSH Cobalamin and Folate Guidelines (UK document)
stichtingb12tekort.nl/weten...
Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
Overseas members can use the online contact form.
PA tests
Intrinsic Factor Antibody (IFA) test
labtestsonline.org/tests/in...
Parietal Cell Antibody (PCA) test
labtestsonline.org/tests/pa...
PCA is not recommended as a diagnostic test for PA in UK.
Both these tests can be unreliable.
It is still possible to have PA with a negative result in IFA or PCA test.
About 50% of people with PA test negative on IFA test.
About 10% of people with PA test negative on PCA test.
B12 Deficiency Info website
B12 Awareness (US website)
Stichting B12 Tekort (Dutch website with English articles)
stichtingb12tekort.nl/weten...
"I have hydroxcobalamine injections every 12 weeks, and take vitamin b strong compound 1 daily "
If you have neurological symptoms and you're in UK, you should be on injections every 2 months. See link below.
BNF
bnf.nice.org.uk/drug/hydrox...
In current pandemic , many forum members are having B12 injections stopped or delayed or swapped for oral tablets so be prepared for this. It's forced many forum members to consider self injection.
See my replies in this link to another thread about help if injections stopped.
healthunlocked.com/pasoc/po...
Check what's in your vitamin b strong compound.
medicines.org.uk/emc/produc...
nhs.uk/conditions/vitamins-...
I am not medically trained.
One of my daughters has this problem.
She has used fodmap. It's taken months to identify foods that make hef bloat ect.
She also cant tolerate fructose.
She is better gluten free diary free egg free lots if other things free
On fodmap you reintroduce things .
Takes a long time but well worth the effort.
She now has a much better diet .
Buckwheat and quinoa and almond milk fortified are good basics
She recently (after a year) has started an prebiotic) not symprove as not in her budget. But its helping the one she takes.
after a month of taking.
She includes spinach in smoothies .
Veg and fruit lacking for some time.
Berries are tolerated .
Tofu a good source of protein.
Its involved but definitely worth trying.
Lemon juice seems to go on most foods
Little and often helps with nausea and reflux.
All improved symptoms.
Her endoscopy didnt show anything.
She is on b12 injections and daily folate and vit d
Hope you find ways to get better
Is it normal practice to have a B12 injection and then immediately afterwards the blood test for B12 levels? Just wondered......
No, although I have had it done once.
I did suggest to the nurse that it was stupid and she agreed. It seems that I was down for a folate test and that the lab said they always did folate and B12 together. Luckily my doc knows to ignore my B12 levels.
I had ibs for years. After three B12 injections every week it went I don’t get any more stomach problems. I did go gluten free due to food allergies, so that may have helped. Hope you get yours sorted.
Thank you!! I think I have dietary changes to make, and hopefully it will help
Hi, I have ibs since I was young, so painful gotta keep close toilets, but I still try to have a life. I have been getting injections of b12, I find it helps me but only for a short time. Hi I am davey from fife in Scotland. Stay safe...
A friend that I live with suffered IBS for decades. And she still does when she departs from her diet. But she has a diet that is, to say the least, unusual.
She eats one massive meal in the evenings. A huge bowl filled with raw and pickled vegetables. Often with some form of protein - eggs, sushi, prawns, cockle and mussels, anything non-meaty. Then she has something around 1 AM - a bowl of cereal, sandwich, just bread.
How she keeps her B12 levels up, I've no idea.
But, if she departs from that for more than one day then it's full-on IBS again.
🙂 thank you for your input. I know I can't go far at the moment but yes, I need to know where the loos are...... It's nice to know that I'm not alone. I know I'm not but it's embarrassing to talk about. Hope you are safe Davey 🏴
Pls read about FODMAP then ask your GP for a formal consultation at your local hospital the FODMAP team come from St Thomas Hospital to to instruct you how to begin your life long regime
30 attended mine some with horrendous IBS symptoms ( I wondered how many had PA too)
Out of the 30 only 2of us have changed our way of life ..3 years now and absolutely no IBS symptoms at all approx 10-14 days into the regime you will know it is working
It took a year to get my consultation and I had to fight to get it
I found as most IBS sufferers intolerant to wheat and lactose and all of the high FODMAP foods
However I eat really healthy I drink only water I do not have dairy red meat but eat fish chicken spinach thin green beans carrots butternut squash parsnip tomatoes red peppers cucumber all salad leaves strawberries blueberries raspberries honeydew melon kiwi banana oranges
Not a bad list I do not miss the other things at all
It is a life style not a fad and only for hospital dieticians to recommend BUT as a consultation may not be possible pls look it up on NHS and the FODMAP website
It will be worth not having some of the culprits once you have read and digested excuse the pun! It was not hard for me to do I am very focused I have severe adhesions and my life now I am on FODMAP and B12 injections for PA has completely changed my life for the better I am 5’1’ And was enabled to exercise again and have lost 4 stones now 7 stone and weigh the same as when I was in my 30’s now that I am fit again nearly 70
I swim every day winter and summer in the sea am able to run 2.5k every day 4 years ago walking with a stick and lethargic etc etc etc
I hope this encourages you
I have a deformed spine ,leg length problems that I was born with obviously I have osteoarthritis in my spine and neck I still have to walk with my stick but hey once my IBS and B12 treated hooray a changed woman
BUT YOU HAVE TO REALLY WANT TO GIVE UP
some things to at least TRY to give a FODMAP regime a chance
No alcohol either no worries for me as have never drank it anyway and Dairy not a problem either as I was one of those children at school that had the little bottle of orange juice not the milk I used to look longingly at the other kids having milk but I not allowed (eczema!)
So check it out be brave and anyone else reading this have a look too the things you think you think are great for you like mushroom onions leeks honey avocado apples pears .... no ! read up why it’s amazing and common sense also
all about enzymes from the stones in eg avocado fascinating and it is a TREATMENT offered by the NHS officially but it’s up to you to be strong and do it 28 did not at my hospital but if someone said if you don’t have apples again and lay off the onions you will not have bad guts bowel issues surly it’s worth a try ( some people can eat some of the FODMAP FOODS ) I can not but IT WORKS
I have strayed got gluten free flour and made some scones but oh dear not good for me
The upside is my husband is on FODMAP too by choice the GP said for him to as he felt we all should all be on it anyway!
Husband has PA too and MGUS
he has successfully changed his life round too he’s 6’2’’ and He swims with me and runs and has gone down to 11 stone from 15
Also we have stayed the same weight for 2 years
We do eat really well on what we eat and enjoy our food so it can be done
This is a long post but really felt it may help
So good luck stay safe keep away from others keep cheerful take each day as a new day
That goes for all of you out there
Once there’s a vaccine we’ll all be fine but until then even if it’s a year it’s well worth keeping safe so take heart every one oh one last thing
8 weeks of stress anger disbelief AT LAST GP AGREED TO ALLOW US BOTH TO SELF INJECT AT HOME (even though we self inject with our supplies from Germany anyway)
Both officially have it once a month as per our respective consultants instructed our Gp’s to give it us but we have an extra top up so every 2 weeks for us all symptoms gone thank heavens
So good luck if you trying to do self inject from GP
But do join PA Society as they can help with an enormous amount and advice and help and really interesting academic papers
So good luck once again
Good info all the way around, thank you. And love your story! Inspirational! Stay safe
Thank you so much Lasue for your very motivating post!!! Very detailed, and from the replies received, serious life changing diet is essential. Your reply will be very useful with all your tips. Yes it will "take time to digest " lol. I am vegetarian don't eat any meat or fish, but vegan may be the way forward. I will have to see what happens with my medication, as my gp wants me to give it 4 weeks!!! But if things don't improve I will need to speak with him again. I find medics aren't very sympathetic about B12.
Funnily enough, my neurologist is at St Thomas' so I have a foot in the door lol!! Thank you again for your lengthy reply. I appreciate your time preparing this.
I have booked a home test for coeliac test. I should receive it next week.
You stay safe too, and so pleased that your hard work has paid off for you both.
When I was put on FODMAP that was over 3 yrs ago and now it is more accessible in all General local hospitals but as you have a link to st Thomas then yes check out their relevant department
At the moment (corvid19)you may find it difficult to sort out a consultation so I strongly advise you to give FODMAP a go anyway most GP’s will not refer you as their opinion is only a certain type of person is worth putting on the life changing regime! I pushed and pushed mine at the time to get referred but ... can understand that re: the 28 that turned their nose up at it from the ‘ I’m not stopping putting honey on my porridge’ to ‘I can’t live without broccoli’.. I rest my case your honour!!
I of course had the usual course of bucasan (spelt that wrong but you know what I mean) and st Thomas hospitable went mental when I told them as it of course it makes your bowl stop moving the worst for adhesions
Also had to have the 6 week celiac trial awful had to eat gluten so ill all before got my consult
So read up on it and eliminate some of the FODMAPS you will improve I know so !
I may have missed Carrott and eggs of foods I can eat ! If you are a vegan you will struggle a bit as many many of things you eat are on the no go FODMAP
BUT do what I do what I can eat I eat loads of it 👀
Eg : a whole punnet of strawberries and husband a whole one every day 😁
By for now private message to let me know how you get on one thing to say now...
Water water and more water 🤗
Lol thank you again Lasue!! Are you lactose intolerant too? Are you able to eat cheese? As I will miss that!! (If I were to go Vegan). Thank you for your inspiration.
It obviously affects us all differently.
Ever since my 20s a whole punnet of strawberries would have given me slight problems. If I try it today it will have me on the loo 6 hours later (and for a few hours later). Onions I can handle in small amounts, and I'm still working out exactly how much to use when cooking.
Mushrooms are the most difficult. I thought they were OK until a friend made her mushroom soup which was nearly a mushroom pureé. Tasted great, awful effects later. And different type of mushroom have different thresholds.
Going to eat at friends is very hard. They will ask 'what can't you eat?' and I come up with this long list - then qualify it with 'but small amounts of them are mainly OK'.
Yes it’s not an exact science I was disappointed though that 28 dropped out it was hard initially to see what was good or bad and of course everyone has different types problems although IBS for me was diagnosed as I am once every 3 weeks person and that was normal for me until I went on FODMAP so nigh on 60 yrs !
My sister too so I feel you need a funny but true story so here goes
My grandmother district nurse and midwife
My mother too both sister and I spent our young lives standing at the village bus top waiting for school bus with our friends only to have either my grandmother who did her rounds in motorbike with side car for her equipment or my mother who did her rounds on her bike would stop and ask in their official voice heard by all and sundry
I quote ‘ now then have a good day at school and have you had your bowels opened ‘ !!!!
My sister and I would lie of course and firmly believe that’s why both our appendix burst when we were 15 respectively!!!
Now every day is a good day if you know what I mean !
Alas my sister is pleased with FODMAP on a weekly basis !!
if I am asked out to eat which is not often I usually volunteer to cook ( in the trade of hospitality so most people want me to chef for them ) easy then I cook them a disgusting flavour I cream if that’s what they want and my desert is strawberries!! ...
do take care having a smile helps some time I’ll regale the story of what happened in the ‘sun room’ called a conservatory nowadays when my mother gave the ‘youths’ of the village lessons in ...’ another time but guaranteed to make you smile
Needless to say us 14 yr old girls were mortified! and no we didn’t want to ‘sit in’ and listen thank you very much Nurse Parker 🤭😉😊
Be aware that doctors might tell you that IBS is a functional disorder. They won't make it clear that they think this means that the sufferer is mentally ill and is bringing on their own symptoms through anxiety, attention-seeking, hypochondria etc. They either never seriously look for the cause or they give up quickly.
However, doctors are reluctant to make it clear that they think the patient is mentally ill, which is why they use terms like "functional" because to a normal member of the public the word functional means something different to what it means to doctors.
They'll tell you that you need CBT - Cognitive Behaviour Therapy, run by the IAPT service.
IAPT = Improving Access to Psychological Treatments
See this link :
kcl.ac.uk/ioppn/depts/pm/re...
and have a browse of this link :
CBT for MUS (Medically Unexplained Symptoms - of which IBS is just one of many) is the biggest con in modern medicine, and it rarely helps anyone except possibly those with mild depression or anxiety. But governments have been conned themselves into believing that CBT will save money, something there is no evidence for in practice.
...
I was diagnosed with IBS multiple times over the course of about 15 years. In the end it turned out I had a physical problem that required surgery from a gynaecological surgeon who was trying to fix something else and found something he hadn't expected. The surgery helped.
The other thing that helped me was giving up gluten 100% ruthlessly, reducing my sugar and carb intake, and eating more protein.
But sadly, in most cases, IBS is one of those conditions that people have to find their own solution for with lots and lots of experimentation.
CherylclaireForum Support
I was B12 deficient so put on injections -and had low folate, ferritin and osteoporosis of the spine so prescribed a 3 month course for iron and folate and twice-daily vitamin D as well. My methylmalonic acid (MMA) was raised- which usually forms a link with B12, so if B12 isn't present, can build up in blood. I had daily diarrhoea. I was losing my hair and gums bleeding. I also had a lot of B12 deficiency symptoms despite NHS B12 injections.
I was sent to a dietitian, and tried FODMAP diet for 3 months, which didn't change anything.
Because my MMA was raised, haematologist sent me for a hydrogen breath test for small intestine bacterial overgrowth (SIBO) as the bacteria can rob you of vitamins including B12, and so can raise MMA. Results were inconclusive: either SIBO or "fast transit" (IBS).
So I was told that I had IBS. GP, who didn't believe this, gave me antibiotics for SIBO just in case as this is what I was being tested for originally and it wasn't eliminated - I had a reaction to them. So still a bit inconclusive.
IBS is not a true diagnosis since a syndrome is just a group of symptoms. There are some in the medical profession who think IBS is a set of symptoms indicating SIBO.
I think, probably like humanbean , that "IBS" is a fallback position and means they don't know: "I'm Bloody Stumped" perhaps ?
After 4+ years of B12 injections of various frequencies, I still have daily diarrhoea. It is recognised historically as a B12 deficiency symptom (see Pernicious Anaemia Society symptoms list etc)- but not, it seems, by many in the NHS. Most of the consultants I have seen don't seem sure about what is/isn't a symptom of B12 deficiency, even the ones that you might expect had seen it all enough times. Their list of symptoms is very small: often appears to be just "tiredness".
Maybe worth asking for an MMA test (blood test- usually main hospitals only), and if that is raised, ask for SIBO test (fasting and hydrogen breath test) ?
Even if to eliminate SIBO as a cause.
I love your suggestion of an alternative meaning for IBS!
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