b12 & bowel problems

[catherinejordan]

does anyone else suffer the need to go to the toilet and it just can not wait.? is it b 12 related?

[Sleepybunny]

Hi,

There's some gut symptoms mentioned here.

pernicious-anaemia-society....

Have you been checked for coeliac disease? This can cause IBS type problems.

coeliac.org.uk/home/

My coeliac tests were negative but I learnt later that you can test negative and still have it.

When I gave up gluten and dairy my IBS disappeared but any change in diet should be discussed with your GP.

[Gambit62 Administrator]

Its quite common in B12 deficiency, and can apply to both urination and bowl movements, and not uncommon for there to be a need but for nothing to actually happen, or struggle when you try to go.

One theory is that it is part of the effects of B12 on the autonomic systems (which controls things that we do subconsciously or semi-consciously - and down to nerve damage which means that the brain doesn't get signals properly so interprets them in funny ways.

However, that is just one possibiilty.

[Catherine50 in reply to Gambit62]

Ty

[Spareribs]

Yes 3 times every morning (sorry tmi) - but as Hypothyroid it used to be the opposite.

I just daren't stop taking B12 long enough to get tested properly (MMA IF etc).

[Allyson1 in reply to Spareribs]

Hmm me too. I would alternate constpation and diarrhea..I have celiac, sibo, endo, hypothyroidism, prediabetes...I find any kind of oral b12 seems to make gut worse. Shots are ok.

Probiotics and gf dairy free isn't enough... Something's still up with me...I always thought Candida diets were fads but now I'm starting to wonder if that's what I need...it's pretty exhausting to start every morning feeling like you've got food poisoning, isn't it?!

[Catherine50 in reply to Allyson1]

Ty for replying

I just can not get to the loo quick enough and when/if I go back to work how that will work.

[Catherine50 in reply to Catherine50]

Also im on ferrous sulphate 3* a day I though that caused constipation, not in my case. X

[jay47 in reply to Catherine50]

Hi Catherine 50, I have these alarming symptoms even when constipated! It's been an utterly devastating experience. I 'd constantly wet/soil myself but symptoms will ease after my jab but 3-4weeks later they return then the nightmare continues as my gp insists on 12wkly jabs. Their response to my double inconvenience

Was callous. After yet another fraught consultation 3mths ago a friend ordered b12 for me from Germany. Weekly shots have given me a new lease of wellbeing. I have neurological damage that may not completely resolve but I am hopeful for the first time in 9yrs. The damage happened over time so I 'm hoping to heal over time too. I take ferrous fumerate which is gentler on my bowel plus folate. Having read on this forum about other minerals, I 've added magnesium, zinc and coQ10. I feel like I 've thawed from a frozen animation. You are brave for putting this up. I was mortified by my situation and lack of understanding from gp. This condition is too serious to be fobbed off in this way. I hope you find respite soon.

[Allyson1 in reply to Catherine50]

Have you seen a specialist like a gastroenterologist? There could be any number of illnesses that cause this. It may take a bit of perseverance to get a diagnosis though.

For me, the problem goes something like this: undiagnosed celiac lead to malabsorption and recurrent infection, which was then treated with mounds of antibiotics, which damaged my gut microbiome, which caused overgrowth, which made malabsorption even worse.

The bacterial (and perhaps fungal) overgrowth for me is a big factor in the diarrhea.

[Catherine50 in reply to Allyson1]

I have a date on 22nd sept to see gasterenterologist. You have been through the mill by the sounds of things. I hope you get some respute soon x

[Allyson1 in reply to Catherine50]

You too!

[sbotwright in reply to Allyson1]

I feel exactly the same. So glad I joined this. Do you know of any self help groups. I can hardly walk because of the nerve damage. Please reply with advice on how to cope with the decrease in injections. I think someone is mistreating me. I feel neglected. My doctor has recently retired and no-one seems to care any more. New nurse got blood test and the result is the neglect.

[jay47]

I saw a gasroenterologist who after reading my history queried why I was sent to him. I pointed out that I have PA and unresolved gut issues. He wasnt convinced. My gp had referred me and he's asking me!!! I had done my research and I realised he didn't understand the link. However, I proceeded with the referral. I was prepped for bowel end, but on the day there was a flurry of activity and I was told it had to be both ends and a more senior specialist was on board as well. It sounded that someone had read up on the link! I was grateful. They found changes and inflammation but no cancer. No mention of coeliac or ibs, but still have issues.

[Allyson1 in reply to jay47]

Did they do a biopsy for celiac? Sometimes the biopsy gets omitted, unfortunately.

[jay47 in reply to Allyson1]

Yh they did. Thanks for replying. Hope you're doing ok.

[Frodo]

Yes, and I was told it was IBS related to stress (I didn't see a gut specialist but I did have an ultrasound). I've had some improvement since becoming gluten free, taking digestive enzymes, and had further improvement with B12. Not sure it will ever completely improve as it's been this way for so long. I also took aspirin for a long time not realising I was having a bad reaction to it, thought the symptoms from that were just part of the migraine, and think this might have done quite a lot of damage. I think all oral painkillers damage the gut.

[fbirder in reply to Frodo]

NSAIDs (Non-Steroidal Anti-Inflammatory) will damage the gut. These include Ibuprofen, Aspirin and Dichlofenac. Paracetamol works I a different way, so it's safe for the gut (but don't take too much as it isn't very kind to livers).

[Frodo in reply to fbirder]

I read a while back that it had been found paracetamol will also damage the gut. Also, it has been found it doesn't even work well as a painkiller... but the response from GPs was that they didn't have an alternative to offer. It doesn't work at all for me, I may as well eat smarties instead. However it is in Migraleve which works to a small extent due to the other ingredients. I tried Ibuprofen before I knew about my intolerance, worked the first time but the next time - rolling on the floor, sweating, gut agony.

[fbirder in reply to Frodo]

Yeah, it never really worked with my arthritis, so I wasn't surprised to read that it worked really well, but only sometimes.

The study that indicated an increased risk of GI problems doesn't sound too rigorous - nhs.uk/news/2015/03March/Pa...

Besides, I think I'd be much more worried about the cardiovascular problems.

After my GI bleed earlier this year I'm stuck with paracetamol and pain.

[Gambit62 Administrator in reply to fbirder]

NSAIDs also inhibit the uptake of B12.

[Allyson1 in reply to fbirder]

I got myself into trouble in my teen years when taking Aleve and iron supplements...very suddenly painful stomach. I was struggling with all these health issues with no guidance..sigh

[fbirder]

Yes, I have the same problems. I'm seeing the gastroenterologist in 10 days time and I'll be asking her about it.

My suspicion is that it's caused by achlorhydria - the lack of stomach acid. I spent a week with no problems when I drank a glass of fizzy orange, with 100ml of lemon juice added, with my main meal. When I skipped a day, the next morning I was back on the toilet at 4 am.

My Pernicious Anaemia is caused by an autoimmune destruction of the parietal cells in the stomach. These cells produce intrinsic factor, needed for proper absorption of B12, and hydrochloric acid. Achlorhydria can produce IBS-like symptoms, so it seems a reasonable hypothesis. I'll be asking the doc if I can be tested for it (I've already tried the simple home test of drinking a sodium carbonate solution and waiting for burps - here were none). If I'm right I'm hoping that my bowel problems can be fixed by acidic drinks with meals.

[Allyson1 in reply to fbirder]

Hmm I wonder about my stomach health and acid production...I have naturally CRAVED vinegar my whole life, sometimes I feel desperate for it. I have a lot of stomach pain/burning/bloating, not just in my intestines. But my Dr has never specifically talked about my stomach health or PA, he's just been focused on celiac, b12 serum levels, and intestines. I will ask him about testing and hope he's receptive..

[Spareribs in reply to fbirder]

Us hypothyroid folk also tend to have low stomach acid (& 25% of us low B12 too) Some say Betaine HCL or Swedish bitters can help.

Hubby has a teaspoonful of apple cider vinegar in a glass of water for indigestion (managed to get him off PPIs/gavison etc.).

Just a thought in case it helps. J

[Spareribs in reply to Spareribs]

Oh I just read don't take Betain HCL with anti-inflammatory medicines like NSAIDs (e.g. aspirin)

[lesbud1]

yes, absolutely

[Lindax]

Yes and if you lift your legs up to sit with your feet under you, you suddenly wet yourself .

[Sleepybunny]

Hi,

Just wondered if this link might help.

bladderandbowelfoundation.org/

Helpline: 0845 345 0165

[sbotwright]

Yes, when I feel the need I have to go immediately and when I do it seems loose. I am really worried and the frequency of my injections has been reduced from every 12 weeks to annually. Please help me somebody!

[Catherine50 in reply to sbotwright]

Did they say why its gone to annually? Im not sure I can go 12weeks yet, so annually would scare the crap out of me. X

[sbotwright in reply to Catherine50]

Apparently in December when I last got a blood test my B12 levels was very high because of all the top ups (every 12 weeks). Got an appointment with the nurse I like for next week when she returns from holiday. Meanwhile I am not sleeping. Maximum 4 hours a night.

[sbotwright]

iT IS SCARING THE CRAP OUT OF ME. They said I have enough in my blood to keep me going for a year. Something like that. It was just before christmas. I have an appointment to see the nurse I like next week. Fingers crossed she will give me it a month early. New nurse is a nightmare. Insisted on blood test before I got my injection so I never got one.

[sbotwright]

I have incontinece. It may be related to the B12. I often can't wait to go. I wear tena lady because every time I cough or sneeze I wet myself. You are not alone.

[alamagpa]

I have had "leakage" for several years, including the two years since diagnosis (autoimmune PA). The worst of it is past, however, as over time it has been improving (lessening of said leakage). I have otherwise excellent doctors and none seem to know why. I suggested the HCI hypothesis that fbirder articulated above, but none of the doctors latched onto the idea, though I find achlorhydria discussed in the peer-reviewed medical literature.

My current hypothesis is that it is due to neurological damage done prior to diagnosis. Colonoscopy was clean and endoscopy highlighted issues related to PA (AG and IM) but, according to the doctors, unrelated to the problems downstream. Celiac and H.Pylori tests have been negative.

I understand that many patients who are Celiac-negative are gluten-sensitive. As such, I may need to go gluten-free. I am hesitant to do so because my diet is already a nuisance for my wife and me. Because of the AG and IM, I cut out all caffeine, NSAIDs, and minimize citrus. Eliminating gluten will leave me with a diet reminiscent of the Herman Munster character on the 1960s sitcom, in which Herman attempts to lose 100 pounds in a week by consuming only water and vitamins. The last day of of the week turns out to be Thanksgiving. Herman attempts to cut his dinner entree -- a vitamin pill -- with a knife and fork while the rest of the Munsters eat traditional multi-course holiday meals. That is the image that the prospect of eliminating gluten evokes.

Correlation is not necessarily causation, as the statistical saying goes, but regular B-12 injections have coincided with the improvement (i.e., reduced leakage). The most recent GI specialist suggestion was for a bulk-forming fiber laxative (an oxymoron if I ever heard one) sold under the brand "Citrucel". It is too early to tell if this will serve as a corrective long-term, but short-term it does appear to have helped some. You might ask your doctor if you should try it. The product is sold over-the-counter in the U.S., so Rx may not be needed in your locale.

My heart goes out to those of you who suffer this debilitating symptom. From a social standpoint, I have found it more than a little crippling. Even doctors otherwise knowledgeable of PA do not recognize the symptom as related. I suspect that is due to the tendency toward under-reporting, due to the difficulty most have in discussing the topic.