Do I have Pernicious Anaemia?

Hi. In 2013 I was told I had a positive antibody test for anti gastric parietal cell ABs and also had a B12 of 317pg/mL. I have many symptoms, initially gastric issues including intermittent constipation & diarrhoea, bloating, tarry stools, abdominal pain and weight gain. I later started to have neurological issues affecting balance, gait and later I developed a mood disorder and psychosis and was diagnosed with bipolar (which is likely to be reversed). I have other autoimmune conditions - Hashimoto's and psoriasis and have been tested for coeliac and arthritis. Unfortunately my GP never acted on the test results as they were done privately and as I was taking antipsychotics I suspect they put the neurological symptoms down to the bipolar disorder and side effects from the meds.

I started taking taking 1000μg methylcobalamin last summer (2016) which I self prescribe and my levels are now 813 pg/mL and I follow the Autoimmune Protocol Diet and have managed to put every symptom into remission. My doctor now thinks there was a misdiagnosis with regard to the bipolar.

So do I have an autoimmune gastric condition? Maybe Atrophic Gastritis or PA? This is all very new to me and I would welcome any advice or guidance.

14 Replies

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  • A positive antibody test for EITHER gastric parietal cells OR intrinsic factor is a definitive result for Pernicious Anaemia.

    So yes you do have Pernicious Anaemia.

    And yes Pernicious Anaemia IS an autoimmune condition.

    It means that your body's natural system for extracting vitamin B12 from food has permanently broken down.

    The only way somebody with Pernicious Anaemia to get B12 is via injections.

    These injections must be taken regularly for life.

    I have monthly injections , because I had neuro symptoms , which have since disappeared.

    Healthy people are constantly topping up their B12 levels every time they eat meat or fish.

    Your B12 levels will always drop away until your next injection because you can no longer extract B12 from meat or fish.

    Good Luck

    And keep up regular injections.

  • Wow. I can tick almost all of the psychiatric symptom list and about 70% of the rest. I'm taking oral B12 so I guess this is going to skew my results. My worry is that my level appears ok now - however am I actually absorbing it? Why would I need to switch to injections if my levels appear ok?

  • It's the same link I posted for you two months ago - glad you have had a re-read :-) Injections ensure the B12 is going into the cells where it is needed.

    The blood results only show you the B12 circulating and I have read that only around 20% of that amount can reach the cells where it is needed.

    Which oral B12 are you taking ? Am assuming it is sub-lingual. For some people it can work. I would still persue your injection protocol as you do have a positive PA diagnosis. Others with more PA knowledge will be along soon to comment ....

  • Yes. If taking oral supplements raises the level in your blood then you are absorbing it. You say your neurological symptoms have improved - which means that enough of it is getting into your cells.

    That means you don't need injections.

    What I can't believe is that nobody has mentioned the most serious of your symptoms - tarry stools. That is called melena and it show blood in the stool. Bleeding from lower in the intestine will produce bright red blood. Bleeding from higher in the gut will produce black tarry stools. Bleeding into the gut is never good.

  • No, a positive result for GPC antibodies is by no means a definitive result for PA. That's why it's no longer recommended. This is what NICE say about it -

    "Anti-parietal cell antibody is found in 80% of people with pernicious anaemia, but also in 10% of people without it. However, it has a low specificity of about 50%, which is much lower than that of anti-intrinsic factor antibody [Andres et al, 2004]. If anti-parietal cell antibody is not present it is unlikely that the person has pernicious anaemia, but its presence is not diagnostic as it can occur in other conditions (for example atrophic gastritis) and older people (16% of normal women over 60 years of age) [Carmel, 1992; Hoffbrand et al, 2006]. As a result, it is no longer recommended as a diagnostic test for pernicious anaemia [Devalia et al, 2014]."

  • This is very interesting and explains why my GP didn't act on the test results. My concern is with autoimmune atrophic gastritis and my GP is looking into it.

  • healthunlocked.com/thyroidu...

    The above link takes you to your post and ensuing thread of two months ago on Thyroid UK. As you can see I mentioned that you have PA and gave you links connected to your symptoms. There was also lots of helpful advice from others.

    The Neuro-Psychological symptoms of LOW B12 are several .... scroll down in the link below to view.

    b12deficiency.info/signs-an...

    In my non-medical opinion your GP's have been more than negligent.

  • Thank you so much. I've been treated very badly by my GP, endo, gastro and numerous psychiatrists. My neurological systems are myriad and life-changing. They are greatly improved with the oral administration of methylcobalamin and a dramatic change in diet. I'm getting blood and stool tests done but I need to educate myself so I can educate my GP and press for further investigations to look in my stomach and bowel. I had an endoscopy and biopsy when I was tested for coeliac years ago, but they didn't look for gastritis (it was before the dx for PA). The only thing they found was an observation about the position of my stomach which they told me 'flops forward'.

  • Hi. You need to look further into the "flops forward". Some years ago I had a barium xray and was told I had a funny twist. After years of intermittent debilitating pain I had another with a consultant radiologist and found out I had mesenteric gastric volvulus which I eventually had stitched down to my abdominal wall. It is rare but potentially life changing as your stomach twists on itself.

  • I do remember your post on the thyroid forum. Sadly at that time my neuropsychiatric symptoms were very bad (There were days when I lost the ability to brush my teeth or cook) and I was taking a potent cocktail of psychiatric drugs, so following up on your helpful message back then wasn't possible. I'm grateful to you for taking the time to write to me again.

  • No worries - it happens to many of us without being as poorly as you. So glad you are on your journey to wellness .... 😊

  • Can you please tell me what the autoimmune diet is? I have PA and I'm very curious. Thank you.

  • Google The Autoimmune Protocol Diet. It's an elimination / provocation diagnostic diet based on Paleo and has been life-changing for me. A good blog about it is here: thepaleomom.com/start-here/...

  • Great! Thank you for the link! I have PA and have been treated for several years and I'm doing well but every little bit helps.

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