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Pernicious Anaemia Society

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Help needed, I'm new here!

LSiddall profile image

I am 25 years old. For years I have suffered with extreme fatigue I was tested for iron deficiency anaemia which was negative so just put it down to life being tiring and working shifts. Last year I started to suffer with stomach problems - severe bloating, pain, urgent loose bowel movements etc. At the same time my dentist said my teeth were very eroded and suggested I get checked for Coeliac. Blood tests were negative but did find a Vitamin B12 deficiency and because of my symptoms I had a stool test, gastroscopy and colonoscopy as well as more blood tests. They ruled out Coeliac and any serious bowel disease saying it was just IBS. They also said I didn't have Pernicious Anaemia because the intrinsic factor blood tests were fine. So now I'm left having 3 monthly B12 injections and still experiencing some stomach problems that don't appear to be linked to food. I have no idea why and the doctors aren't investigating they just seem happy with given me the injections every 3 months.

Has anybody experienced anything similar or have any advice for what I should be doing?

7 Replies

The test for anti-IF antibodies may have been negative, but that doesn't mean you don't have PA. About 50% of people with PA give a negative result. Download my summary document - - for links to recommendations from the BCSH and NICE about the unreliability of the test.

How is the fatigue with the 3-monthly B12 shots? Any improvement?

If you do have PA (and it's a likely cause of your deficiency assuming you're not vegan or on any medication that can interfere with B12 absorption) then you've probably got Autoimmune Metaplastic Gastric Atrophy. Was there any mention of signs of gastric atrophy when you had the gastroscopy?

I, too, had the same GI problems as you. Digging around I found that AMGA kills off Gastric Parietal Cells. These cells, as well as making IF (which is why AMGA causes PA), also produce hydrochloric acid. When they get destroyed there is not enough acid to do a proper job.

The acid in your stomach starts the process of breaking down protein. It also kills off any bacteria from lower down and stops them setting up home in the stomach. Without the acid undigested protein can pass through into parts of the gut where it's not normally found. The bacteria in these parts have a huge party on the unexpected bonus - resulting in bloating, wind and loose bowel movements.

The fix is to replace that missing stomach acid. Some people use pills/capsules containing betaine.HCl which releases hydrochloric acid in water. I started using these, but found them unreliable. Others swear by apple cider vinegar, diluted in water. My preferred tipple is about 40 ml of lime juice diluted with water/orange/tonic/gin with each large(ish) meal - i.e., not breakfast.

Disruption to the acid/base balance of the gut can also play havoc with your gut flora. So a good probiotic can really help. Symprove is wonderful, but ridiculously expensive. Bio Kult is a lot cheaper and almost as good (I now take 1/2 dose Symprove each week and one Bio-Kult per day - both are available from Amazon).

wedgewood swears by raw, organic, sauerkraut and, I have to say, it did seem to work for me. New Scientist recently ran an article on superfoods and the only one about which they had anything good to say was pickled cabbage for gut flora.

Good luck.

LSiddall profile image
LSiddall in reply to fbirder

Hi. Thank you so much for your reply.

It's definitely not diet related and I'm not on any medication.

There was nothing mentioned during the endoscopys. I had a consultation with the GI doctor to get the result and he told me that all were normal, the biopsies were within the normal range and that I didn't have a B12 deficiency because my levels were 1200 (bloods done a week after a b12 Jab) and basically said there's nothing wrong and discharged me back to my GP. Since then I've been backward and forwards and swear my GP thinks I'm a hypochondriac.

My GP thought it may have been caused by too many antibiotics (I had pneumonia the year before) so suggested I stay off the injections. I had a b12 shot in January and within 6 months my levels had halved so I'm back on the 3 monthly jabs.

I'll have a read through the information you supplied thank you.

Is there a way I can get tested again for PA?

fbirder profile image
fbirder in reply to LSiddall

I had to ask my gastro about atrophy. 'Oh yes, he said, you have atrophic gastritis'. But he hadn't mentioned it to me before (actually I think he was too excited about my strange histology results).

Push your GP for an explanation as to why your B12 levels drop dramatically. Practise your most withering look, so you can use it on the GP if they suggest it's because of your age.

But you may have to accept that you'll never find out. You could have another anti-IF test, but it'll be 50:50 again. You could ask for an anti-GPC antibody test (no longer recommended, but your doc probably doesn't know that).

The important thing is that you're getting treatment. Fight tooth and nail against any suggestion that they stop the jabs, or that you need to be retested (see that section in my summary).

As long as 3-monthly keeps you feeling human then that, compared to many, is a sort of win.

LSiddall profile image
LSiddall in reply to fbirder

Oh and there is a slight improvement after having the injections I think I wouldn't say it's the immediate miraculous recovery that some people talk about, far from it.

When I heard that you had had a blood test one week after a B12 injection I couldn't believe it! That's madness . Your levels are bound to be high then . The scientific literature will tell you this ( sorry I can't quote you chapter and verse ) . It bears no relationship to how much B12 is getting into your cells ! You can have PA even if the I F test is negative ( also in the scientific literature ) My gastroenterologist told me that PA patients have low or no stomach acid . There is no NHS treatment for this . I tried helping my gut flora with the Symprove ,which @fbirder has also mentioned . Horribly expensive but worth it to put the tum to rights . I now make my own organic sauerkraut. It should be eaten raw . I use red cabbage with some chopped red onion ---really quite tasty ! ( recipe on Internet ) This definitely does wonders for my tum . Remember though NOT to cook it or even heat it above 40 c .

I'm afraid one is really up against it when it comes to PA and the medical profession . They haven't a clue . The pharmaceutical industry isn't interested either, as B12. being a vitamin , is not patentable therefore no big bucks in it for them .

I had to get my diagnosis by going to a private GP ( at a Nuffield hospital ) as my own GP said there was nothing wrong with my B12 result (150) Even then I was not allowed more than 1 injection every 12 weeks , although the symptoms returned much sooner than that . I keep myself well with self-injecting . I get the B12 (Hydroxocobalamin, that's what GPs use) from Germany ---100 cost about £56. Needles and syringes also in bulk from Amazon UK . So it's not outrageously expensive. You may not have to go down that road , but do be prepared . If you do, come back here and you will get all the help you need . Very best wishes .

LSiddall profile image
LSiddall in reply to wedgewood

Hi Wedgewood thanks for your reply.

Its all been quite ridiculous really. The Gastroenterologist was just looking for Coeliac, IBD or Crohns, didn't find it so they just discharged me without looking any more at the cause of the B12 deficiency so now I'm stuck pestering my GP and getting no where.

I'll try all the tips you have both suggested. Thanks again :-)

"They also said I didn't have Pernicious Anaemia because the intrinsic factor blood tests were fine"

The Uk document "BCSH Cobalamin and Foalte Guidelines" mentions Antibody Negative Pernicious Anaemia on page 29 and elsewhere in document so it is possible to have PA even if intrinsic tests are "fine" I gave a copy of the document to my GPs.

The BCSH Cobalamin guidelines and the BMJ article (link below) make it clear that people who are symptomatic for B12 deficiency should be treated even if B12 blood levels are normal range. Martyn Hooper, the chair of the PAS tested negative for IF antibodies more than once before testing positive.

UK b12 websites


B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

"Could It Be b12" by Sally Pacholok and JJ. Stuart

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