Ibs like symptoms : Hi, just got... - Pernicious Anaemi...

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Ibs like symptoms

Sbmaurice
Sbmaurice

Hi, just got diagnosed with b12 deficiency and I have only had my first loading injection yesterday. I ask my doctor and the nurse giving the injection if alternating diarrhea and constipation was done to the b12 and they both said it's unlikely, has anyone else had these symptoms? Is it more likely that I have crohns or celiac than pernicious anaemia? The doc seems certain it's pernicious anaemia and said it was an incidental finding when looking into my IBS. So confused and need help.

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I get that symptom from dairy or gluten. I was diagnosed with b12d about the same time I became dairy intolerant. Later gluten intolerance was also discovered.

The diarrhea comes first and then it is like my gut gets paralyzed and this results in constipation.

In addition, if I’m low on B12 before my injection, I get a soft poo after the injection. This is no constipation here. If my b12 was too low it is more like diarrhea.

I think what is going on is that when the cells in the body finally get b12, metabolism kicks into high gear resulting in byproducts such as CO2 and water.

The water in the blood slows down the water removal by water he gut and the poo ends up bring soft. The B12 also is repairing the nerves of the gut making things move along faster.

Once you get sufficient B12 and keep it there, these symptoms decrease and disappear. You might think about starting a log book and assess you symptoms each day. Treat the jab as day zero each cycle and you will see the pattern of symptoms that follow in sequence over 48 hours and repeat each time.

I was first diagnosed b12d. When i pushed for a reason they found i was a silent coeliac, who had no real symptoms until after an operation then everything went belly up. after having to consume quantities of fibrous grain foods i began to alternate too.

So it is worth persuing for a coeliac blood test at the very least. What i will add though is you need to be eating gluten foods with the mimimum equivalent of 3slices of bread per day for six weeks before you have it done.

You could look on coeliac uk website which will give you more info

Sbmaurice
Sbmaurice
in reply to Lisahelen

I had an endoscopy last year anscthe biopsy showed no celiac disease. I've heard blood tests can be false negative but the biopsy seems pretty reliable.

I had IBS symptoms when I was diagnosed with PA , which results in B12 deficiency. Have you been diagnosed with PA? If you have , bear in mind that the antibodies produced by this autoimmune condition attack the parietal cells in the stomach ,which in turn produce the Intrinsic Factor and the Hydrochloric acid both of which are needed to absorb vitamin B12.. Hydrochloric acid is needed to keep stomach flora in balance . The lack of it (Achlorhydria/ Hypochlorhydria) causes gut problems similar to IBS . No help from NHS on this . I took a probiotic called Symprove which helped enormously . You can also make your own probiotics (eg sauerkraut) . Symprove was developed to help IBS , But is unfortunately expensive . That’s why I make my own sauerkraut . I use red organic cabbage with some chopped onion. ( recipes on Internet) . There are many other probiotics - natural yoghurt etc. You can also get capsules - Some people take diluted organic cider vinegar ,and other acidic drinks before meals . Even if you don’t have PA ,the suggestions will do you no harm . Best wishes .

Sbmaurice
Sbmaurice
in reply to wedgewood

Thank you for your reply, the doctor believes my b12 deficiency is pernicious anaemia. I will look into the sauerkraut and pro biotics, I need to try something!

i was diagnosed with pernicious anaemia and then found out i was lactose intolerant. Had IBS symptoms for years until i found out the cause. Since removing lactose all my stomach problems are fine!

Yes, I was diagnosed in march this year and docs said the same thing. I had IBS symptoms just like yours and also once in A&E with apparent gastroenteritis which I also think was all the same thing. After loading injections it all went away. 4 weeks later all symptoms came back but doc said couldn't be b12 so gave me ibs pills... so I've started to SI as I can then be in control of how I feel - if the IBS doesn't go away I'll start taking them but not until then (last 2 weeks it has gone away so so far so good). Hope that helps

Cherylclaire
CherylclaireForum Support

I no longer believe, after 3 1/2 years of trying to get help, that GPs or specialists (yes, even Gastroenterologists) are aware of many of the symptoms that can accompany B12 deficiency. I have had diarrhoea every single day for this whole time.

We are certainly not all the same: symptoms vary wildly -even in the one body, even on the one day. I think enough of us experience gastric symptoms, and that this would be unsurprising. I also think diarrhoea was once regarded as a common symptom of B12 deficiency but dropped off the list at some point- almost sure that Martyn Hooper mentioned this, if anyone else can back that up (?)

I have been tested for SIBO (small intestine bacterial overgrowth) - test is a Lactulose breath test for Hydrogen- and for Coeliac disease (gastroscopy and biopsies). It has been decided that I have IBS although Gastroenterologist admitted that this does not explain any of my other symptoms. IBS is a syndrome (set of symptoms) and so does not explain cause and cannot be a diagnosis. Currently the thinking seems to be that IBS is actually very often SIBO symptoms. I still think it is B12 deficiency....along with many other symptoms, it hasn't yet gone away after self-injecting every other day, but is not as bad. Still hoping for more- or should I say "less" ?

If you have a precious Pernicious Anaemia diagnosis, I would get a written copy of that, Sbmaurice - keep it safe for "just in case" (GP moves/retires, you move and change practice, etc) and then work with your GP to get the frequency of treatment you need to function properly. For that, you might need to record symptoms: frequency and severity. This will help you both to notice subtle changes, as improvements can take a while. It can also keep your spirits up to look back at the progress you've made, especially if you feel like you are regressing- can just be a "blip"! Very best of luck with treatment.

Thank you for your reply, with the number of people with pernicious anaemia who have gastro problems you'd think they would admit the connection!

Cherylclaire
CherylclaireForum Support

Takes them a while to catch up with us, Sbmaurice !

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