I have had very little assistance from my GP in relation to my Pernicious Anaemia with gastric parietal cell antibodies diagnosis earlier this year. GP reluctantly agreed 5 loading doses but no more than three monthly injections after that, even though I have neurological symptoms. I have been supplementing my B12 injections with occasional injections at a beauty therapists and sublingual B12, for five months now. I do realise that many people on this site experience similar GP responses to mine.
A particular symptom that I have been experiencing for nearly two years now is severe diarrhoea with urgency, which often prevents me leaving the house. GP continues to recommend Imodium. I have just managed my first SI. I am hoping these regular bouts of diarrhoea are going to become less, or even disappear, now that my B12 levels should be rising. Has anyone seen an improvement with similar problems? I am gluten free and more recently lactose free. Any advice will be gratefully received.
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yorkshiregirl4
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I am so sorry to learn of your condition and how debilitating this can be. I can empathise, I have kept a bowel and bladder diary for 3 years. It really takes an emotional toll as well.
Many of us have to resort to self-injecting to keep neurological symptoms at bay because of the regime our doctors set for us. It is a lot cheaper than attending beauty saloons.
I hope you are a member of the Pernicious Anaemia Society. It maybe worth giving copies of their literature to the G.P., the prescribing clerk and the Practice Manager.
Unfortunately, nutrition was taken off the medical students’ syllabus.
It may be worth having a private dietician appointment. I know a lot of information as I have coeliac disease, Small Intestinal Bacterial Overgrowth and lots of intolerances. I would hate to give you the wrong advice and for you to get worse as we are all individuals.
Have a look at FODMAPS diet (MONASH UNIVERSITY is the recommendation). This may or may NOT be a problem.
Many of us also use lime juice, apple cider vinegar or digestive enzymes due to low or no stomach acid.
I am not a sales woman but a highly qualified clinician appointment to help with 2 years of debilitating diahorrea is definitely worth it.
How very kind of you to reply to my post. Thank you. I am a member of the Pernicious Anaemia Society and it is only with member's advice and shared knowledge that I have now managed to start SI. A truly fantastic site with lots of advice and support.
I did buy some Apple Cider Vinegar capsules but have not used them yet. I think that with on-going diarrohea it is so difficult to try anything new in case I make it worse but I do need to do something to improve this. I will start the ACV today. I have seen a Gastroenterologist earlier this year but that has not been very helpful. Expensive tests but did not appear to actually listen to me.
I have just discovered that I had a Faecal calprotectin content of 170 u/ug (reference range 0-49.9) some two years ago. I had a colonoscopy which did not find anything but I confess that I do not know what this test result means. I have had no treatment or tests either since this result.
I will try the Dietician suggestion as well. Many thanks for your response and I wish you good health! Kind regards.
Just a quick further reply. A calprotectin test measure inflammation. Sorry, that’s it from me. Discuss it with the dietitian.
Dieticians and nutritionists get down to the nitty gritty and look at you as an individual. So, I’d recommend collating the following in advance. So, they get a better clinical picture and can give better advice.
1) Dates of tests and their results.
2) A week’s food diary.
3) A week of times you have had your bowels open.
4) Describe your stools. (Break the poo taboo. The size, shape, consistency, odour and colour. Google the Bristol Stool chart. I went as far as showing a gastroenterologist timed and dated photographs of mine).
Lastly, GUTS U.K. I rang them a couple of years ago and just cried due to all the decades I had put up with my bowel symptoms. So, there is emotional and proper advice. They deal with the whole gastrointestinal tract and have leaflets to send you about all the stuff that can go wrong with the gastrointestinal tract.
Your information and advice is fantastic and really useful. I am finding this very annoying and emotional too. There seems to be no end to it. My everyday life is much restricted to accomodate all the difficulties as a result of this bowel problem. Many thanks.
A visit to a private nutritionist really helped my stomach problems. After years of diarrhea and after many NHS tests I finally decided all the trips to GP were not helping so tried a nutritionist not only has the diarrhea gone but other things seem to be improving too, I have to be strict with my diet but its worth it just to be able to get out without having to plan a route by where the toilets are. If you have had everything else checked out by your GP it may be worth considering😀Hope you have a good day
Many thanks for your reply. I am in agreement about the unhelpful GP visits which always end up a massive disappointment for me. I will accept a strict diet to improve my gut problems. People who have never experienced the necessity for readily available toilets simply do not understand how restrictive this is to cope with. Did you find that improving your B12 levels improved your stomach problems? Just wondering if there might be a little light at the end of this tunnel! Many thanks for your suggestions and I will certainly look into a nutritionist. Hope you have a good day too.
I have just started self injecting but I suspect my gut problems will probably need more input to resolve. I am looking to self inject every 2 weeks as I did not get proper loading doses at the end of last year. It'll be a wait and see how I respond. I certainly feel a Nutritionist or Dietician is the way forward. Many thanks.
That's an interesting suggestion for me. I have been eating live natural yoghurt for the probiotic element but now looking to be lactose free. Also I used to take an Omega 3 capsule some years ago so would be happy to reintroduce both again. Many thanks for these suggestions and I will let you know if they have a similar positive result for me. Kind regards.
That's interesting. I'll see how the Omega 3 and probiotic work out. Presumably it will take a little time to bring about an improvement. Many thanks for your comment.
That's probably a usual concern and anyone could be worried when changing back to eat or drink something that has caused problems in the past. I guess if it is still a problem then any reaction might be less strong with a small amount. Thank you for your interest.
There are many reasons for diarrhoea. One can be low stomach acid; this can be diagnosed with a serum gastrin blood test. Another can be bile acid malabsorption (BAM) which leads to malabsorption of Vitamins including B12; urgency of diarrhoea is a particular symptom because bile acid has seeped into the colon where it should not be. BAM is diagnosed by a SehCAT test.Only a gastroenterologist can authorize a serum gastrin test or a SehCAT test so ask your GP for a referral; perhaps check with the PALS team at your local hospital to see that they can do a SehCAT scan.
Many thanks for your reply. I did have a positive test for gastric parietal cell antibodies so presume I have low or absent stomach acid. No doctor has suggested treatment of any sort. Your comment about bile acid is interesting and could well be a very helpful and useful discussion with my GP to get checked out properly. Presumably I could have both low stomach acid and BAM? I am very grateful for your comments and now have a number of suggestions for the way forward. Wishing you good health too!
yes it is quite possible to have BAM and low stomach acid (and PA). The diarrhoea you get BAM is urgent and sometimes it is pale and oily (that's the bile in the stool). There's a patient support group for BAM which has very active facebook group: bad-uk.org/.
The SehCAT test is a definitive test and will tell how much bile acid is leaking into your colon if you have BAM. The test is a 2 stage process; you swallow a radio labelled bile acid capsule and you then have a scan so they can see where the bile acid is in the gut; you then return a week later and have a follow up scan; you have BAM if less than 15% of the bile acid is still in your gut; for example, if 1% of the bile acid remains, your BAM is severe and bile acid is leaking into your colon causing diarrhoea. The test is painless and quick.
There are various treatments. A low fat diet is a key treatment.
This really does sound a very positive way forward. I got really excited reading your responses. Having told so many GP's about this problem plus a Gastroenterologist, over a long period of time, to get no useful response at all I really was getting very despondent. I have had to self diagnose and request tests or treatment for years now.
The only way I got a Pernicious Anaemia diagnosis was 6 months asking for a B12 blood test and a poor quality, paid for Haematologist appointment. I rarely leave the house and cannot reliably plan anything outside the house not knowing if I will get to a toilet in time. Many thanks for all your advice and information.
I agree with mickeymouse42. You sound classic for BAM. I am dealing with this also., unfortunately in the USA, the SehCAT test is not performed so it is a diagnosis of exclusion. I am waiting to see a my GI doc. Luckily, there are medications readily available and inexpensive to treat BAM. Good Luck!
Thank you so much for your reply to me. I have managed to book an appointment with a Gastroenterologist (presumably like your GI doc.) and will certainly be requesting the SehCAT test. You have also answered my next question about treatment for BAM which means this whole nightmare can have a more positive conclusion than I was envisaging a few days ago. Many thanks for your kindness.
Thank you very much. I will certainly be asking about the blood test. Before I retired, Nuclear Medicine was my area of expertise and it surprises me that I could not find a facility to do the scan. I may a few more calls though, it seems like a more accurate test.
I believe the SehCAT test is available in Canada if you live near the Canadian border. There's also a stool bile acid test which sounds more accurate than the blood test - as bile acid is meant to flow between the liver, gallbladder, pancreas and small bowel and not seep into the large bowel, there should not be bile acid in your stool.
I want to say a very big thank you for your advice three months ago about BAM. I had never heard of BAM before. You gave me the confidence to fight for testing and treatment, it really did feel like a fight with my GP not listening. I was so exhausted after about two years of the most appalling diarrhoea and not feeling able to leave the house for days on end, on top of the undiagnosed Pernicious Anaemia.
I reduced the amount of fat in my diet, which did improve the diarrhoea but that subsequently resulted in a false negative in the SehCAT scan. However, a lovely new Gastroenterologist was convinced I had BAM and agreed to start me on medication to treat it. I cannot believe the improvement. Just a few weeks into treatment and, although I have had difficulty feeling confident that the tablets are going to work after all this time, the improvement is incredible. Thank you so very much for your reply to me three months ago. Your help and advice have changed my life for the better. Best wishes.
Apparently BAM affects 1 in 100 people so it's very common. In the posts above, you said that you had low stomach acid as well. Did you have a serum gastrin blood test to confirm this? Many people seem to be tackle low stomach acid by changes to diet (cider vinegar etc).
If you are going down the route of taking colesevelam or other bile acid binders, it's important to periodically check the levels of fat soluble vitamins (A, D, E and K). They also tend to increase your triglycerides levels so periodically ask your GP for a lipid test.
My BAM is much more under control and I suspect that raising my B12 levels from very low levels (201 ng/L) to over 500 ng/L has been an important factor. I tried the FODMAP diet but found it far too complicated. Because I have Non Alcholic Fatty Liver Disease (NAFLD) and elevated triglycerides which is common in people with BAM, I have been moving towards the Portfolio Diet which was developed by Professor David Jenkins of Toronto University:
I've been a habitual porridge eater for decades and according to Professor Jenkins and Professor Spector oats act as a natural bile acid binder. I've added soya and nuts to my diet to see if I can tackle the triglycerides problem.
Hi, I'm so sorry you're having such a rough time !I can't comment specifically on diarrhoea, my problem related to B12 deficiency was bowel incontinence.
Apologies if TMI , but to clarify, this was incontinence of normal stool, not diarrhoea.
I self inject weekly, and I'm very fortunate that this has solved my particular issue.
However if for any reason I miss my weekly injection, all my symptoms included bowel urgency, return !
I hope you get this resolved and can feel better soon.
Hello there Ghound. Any and every piece of information is useful. This is such a confusing condition and there is so much to learn, particularly when the majority of doctors are so ill-informed but still see themselves as experts. I had five loading doses of B12 then three monthly after that, even with neurological symptoms, and was actually told by a Medical Consultant that I now had enough B12 for five years!!
Many thanks for taking the time to message me. Kind regards.
The scary thing is they actually believe they understand this stuff. 5 years? Total twaddle. You can't absorb therefore you cannot build up stores. As you clearly know, with neuro symptoms injections should be every other day until symptoms cease to improve, because the B12 given only remains actively working in the body for approx 24-48 hours. Best wishes
Many thanks for your message. The other problem is that this is just the excuse my GP needs to continue to give an appalling service to me and continue to ignore my symptoms. I really have been astounded in my journey to discover more about Pernicious Anaemia and to realise that it is "every man for himself." Many years ago with a CFS diagnosis (which I now wonder was actually a B12 issue) I had this same problem of not being believed and it took years for me to improve my health. Thanks for your message of support.
Yes, I'm afraid it feels like it, doesn't it. I've had 'fibro' since childhood but with 6 known generations of B12D and PA I think they just never looked. Still battling for myself and Dad. CFS commonly improves with B12 and folate in the right form for you (which turned out to be methyltetrahydrofolate for me). Glad you have made some progress and good luck making much more, which I am sure you will.
I had years of gut issues including diarrhoea and constipation, flatulence etc which improved when I went gluten free and further improved with B12 injections.
These days I rate my gut health as good.
Have you ever been referred to a gastro-enterologist?
Changes in bowel habits should always be thoroughly investigated as they can sometimes be a sign of serious health issues.
Looking back to when my gut issues were really bad, I can't believe I wasn't referred to to a gut specialist. It was negligent in my opinion.
NICE when to refer B12 deficient patient to neurologist/haematologist/gastro-enterologist.
"Note: clinical features of vitamin B12 deficiency can occur without anaemia and without low serum levels of vitamin B12."
My understanding is that this NICE CKS applies to both people diagnosed with megaloblastic anaemia due to B12 and/or folate deficiency and people with B12 deficiency without anaemia.
I'm not medically trained so it is possible I have misunderstood.
I understand what you're saying - thanks very much. It is possible I suppose that there is elsewhere a CKS which relates to non-anemic b12 deficiency ie a separate doc where this is specifically addressed.
Many thanks Sleepybunny. Lots of good advice as usual. You gave me the courage to SI. Thank you. I have been gluten free for a few years and more recently lactose free. I had a colonoscopy which showed nothing abnormal but never had any follow-up even though exactly same symptoms persist. I am now SI so will be raising my B12 levels asap and you have now given me hope that my gut health could also improve. It is so helpful to hear others success and achievements. Best wishes.
I had the same problem. My B12 issue was initially incorrectly diagnosed as IBS. It bothered me for years. It cleared up completely with the B12 supplementation (initially sublingual but after several years, I needed shots). I hope yours clears up too!
Brilliant news, Hockey_player! I look forward to positive impact of my B12 injections too, particularly as I now understand that the mannitol in my sublingual tablets may have been making my gut problems even worse. Best wishes.
I was using these and I do not see mannitol in the ingredients. They worked for many years until they didn't and I started shots. The minty taste helped me in remembering if I had had one or not each day. jamiesonvitamins.com/produc...
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