Pernicious Anaemia Society
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Does anyone get regular endoscopy?

Hi, just doing a bit more research on chronic gastritis as the cause of PA. I had being doing well by giving up gluten and self-injecting monthly. Bowel habits were back to normal and I was feeling positive. Lately I have started to get bloating and pain after eating, and have other symptoms such as joint pain (ankles and knees) which are getting me down. Bowels also gone back to how they were before. I just wondered how many people have regular (or any initial) endoscopy by their GP to check the gastritis and as procedure to monitor for gastric cancer?

Would like to hear from anyone who has been tested for H pylori infection too. I want to talk to my GP about more tests,- H pylori vitamin D, homocysteine so that I have more information about my health but I am worried she might think they are unnecessary.

18 Replies

Hi, They always think tests are unnecessary as they have to pay. I had one camera up and down which showed mild stomach atrophy and diverticulosis. Referral to angina clinic revealed very low b12 20 and anaemia 8. The angina went away and b12 diagnosis followed from the hospital. I hope you feel better soon. Over time the vibrating has improved and I found drinking dairy milk helped as it is very well absorbed. Have arthritis but joint pains are worse. Its an awful thing to have causes so many problems. GET WELL SOON x


My PA journey started with same/similar symptoms to yourself. Just happened to mention as an afterthought the burning legs so was given blood test which showed deficiency.

But prior to that at same appt dr booked appt for me to have colonoscopy - have had to wait a number of weeks because they dont suspect cancer but i go on tuesday next week to see if they can pin down a reason for my lack. Twice i was asked if i wanted it and said yes each time.

Also at a follow up appt re the 'go or not go!' they sent off a stool sample to rule out other causes. But i will say that i beat them at their own game there as i picked up sample bottle on my way out on the previous visit and sort of just presented it at this visit. Felt it was a case if nothing ventured, nothing gained.


Don't worry about what she might think, it's your health that matters. When I was initially diagnosed as B12 D I was having some abdo discomfort, (lots of burping and feeling too full after only a few mouthfuls etc.) My GP re-referred me back to gastro and I had an endoscopy which showed a "mild chronic gastritis". However it was reassuring that there was nothing more sinister going on. So push for it; hopefully it will give you peace of mind. When I asked for a vit D test my GP was very reluctant saying "half the nation will be deficient at this time of the year (it was February) and we can't test everybody"! However I persisted and she did finally agree. None of these tests seem to be routine or regular, but I will be back if I feel the need for any repeat or further tests!

You are the expert on how you feel; go back to your GP and take someone with you for moral support if possible.

Hope it goes well!


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Thank you very much for your support, I really appreciate it. its hard not to feel like a whinger/hypochondriac so good to hear your replies. Will make an appointment tomorrow. :)


You would be surprised at how many PA sufferers are considered whinging hypochondriacs but anxiousness etc is part of our problem.


Hi Chalky Girl - although we all have different problems, I hope the following experiences will help in some way, as you are obviously aware that many researchers believe leaky gut/intestinal disease is the ground zero of autoimmune disease.

After years of stomach problems (gastritis, gall bladder pain, IBS, reflux, etc.) and a particularly nast bout of pain with three days of continual vomiting, I was, as usual, given Zantac and seemed to recover slowly. In desperation, I arranged a private endoscopy but, by then Zantac had probably covered up whatever was going on and all they could find was high H/pylori. Antibiotics were prescribed and brought some relief for a time.

I also have Hashimoto's autoimmune thyroid disease - as with B12 deficiency, tests are unreliable. Insufficent thyroid treatment excacerbated stomach problems and I became weary of continually having to battle GP to stay on the higher dose of thyroxine necessary to stay healthy and avoid the need for medication for heart and cholesterol problems, I started to treat myself with NDT and eventually gave up on seeing doctors, realising that they were not interested in getting to the root of a health problem - only in dishing out drugs that had appalling side effects.....

I'd been interested in various natural and herbal medicine for years. IBS was sorted out by taking Swedish Bitters; gall and reflux - diluted cider vinegar and Vogel's Centaurium. But, best of all, was discovering that avoiding gluten and taking several spoonfuls of sauerkraut throughout the day virtually alleviated all symptoms, hopefully, healing the little villi in my stomach to help absorption of B12.

I am now old and thankful that I discovered the benefits of sauerkraut and B12, as my memory and health is now better than ever and I'll be staying away from the surgery as long as I'm able to....

I hope you feel better soon.


My gastroenterologist expended all his energy and time trying to prove that I had Neuroendocrine Tumours (NETs) and blaming them for my GI symptoms. Finally, after CT, Octreotide (gamma-ray) and DOTATATE (PET/MRI) scans and 3 gastroscopies (including 50 biopsy samples and a polypectomy) he finally agreed with me that my GI symtoms were probably down to gastric atrophy.

Of all the blood and urine tests he had done only one - plasma gastrin levels - came back as abnormal. This is a sure-fire indication of gastric atrophy.

As well as PA, hypergastrinaemia and gastric atrophy mean that the stomach doesn't produce enough hydrochloric acid. HCl is required for proper digestion, especially of proteins. Lack of HCl (hypochlorhydria) can cause exactly the symptoms I was having.

So I started drinking lime juice before and during meals - which improved things somewhat. Then I discovered Betaine HCl - tablets that produce HCl in the stomach. Since I started taking them (1-3 per meal, depending on size) I've had no problems at all.

i would start off by asking for a serum gastrin test to see if your levels are high. If they are then I'd assume hypochlorhydria and start on the Betaine HCL. These are the ones I use -


Hi Chalky Girl. I think an endoscopy is essential because it will confirm what is happening.Earlier in the year my Full Blood Count indicated low D, Calcium and B12. The Dr was able to ring the pathology unit and have them run a couple more tests which showed I was not making Intrinsic Factor and Gastric Parietal Cell Antibody was not detected. The was no H. Pylori infection.

These extra tests suggested Pernicious Anaemia. An endoscopy confirmed the PA diagnosis. The gastro's finding was Gastric Fundus: Moderate Chronic Atrophic Gastritis; Intestinal Metaplasia. He removed two polyps and performed biopsies - said that the ilium was severely damaged and would not recover. (I am working with natural therapies to try to rescue it!)

So, I was lucky my GP was straight onto the implications of a low B12 which was 175m/L (135-650) and Active 21 (>35). The Bloods were taken because I was pretty down after the death of my brother from cancer and became teary.... she sent me to counselling before the Blood results had come back. It was such a relief to have a diagnosis because I was really struggling with my life - it explained so much that was happening. I think I have had this for over 10 years (burning feet and sighing a long time ago) which I guess is why the ilium is so damaged.

I was told not to drink alcohol, carbonated drinks, coffee and no lemon juice in the morning.... I am still researching the best foods but also have found black tea feels odd in the morning so I keep a cuppa' for later in the day. Surprising what you can get used to if you think stomach cancer is a remote possibility! I have flirted with gluten free over the years and am really seriously trying to stay on it this time.

I was told I will have regular endoscopies every couple of years - I think to keep an eye on stomach caner developing. I am struggling with 3 monthly injections and intend to ask for a review next week. Today my husband bought a needleless injection pen and the meds online here in Australia , to top up my treatment.

That's my story - I do hope you are able to convince the Dr to investigate why you have gastric issues.... at least to get the WHOLE picture.

Good luck and take care.


Sorry everyone, I need to clarify above post - I do have Gastric Parietal Cell antibody.

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I'd definitely suggest regular endos as well as colon. PA can wreak havoc on the digestive system. I see a gastro regularly.


Hi Chalkygirl - I have had PA for 20 years and have regular endoscopies every 2 years at Specialists request. GP didnt think it was necessary, Specialist overrode her opinion and wrote her a letter stating it was a necessary precaution against stomach cancer. I too have many other auto immune issues including the burning and numb feet (periphal neuropathy). I take regular Vitamin B two in the morning and 2 before bed. This generally alleviates the pain. I used to have the bowel issues too, but have had no problems since coming off gluten, and dairy. (I do sneak in the odd bit of cheese without any problems). Push for the endoscopy, you have nothing to loose and everything to gain having them regularly.

All the best in your PA journey.

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Hi, I've not long had my second endoscopy and I finally have my PA confirmed by a wonderful doctor who is on my wavelength. She thinks that dysbiosis is the root cause of autoimmune problems and I've suffered from this for years, I'm also gluten free as I feel so much better without it; also gluten is often a suspect when it comes to autoimmune. I've just started my treatment, iron by drip and B12 jabs; at least I'm not crying every day anymore, I hope that the physical symptoms will improve too shortly. I think the endoscopy/coloscopy is essential as the acidic environment can cause problems (I had a polyp removed). My doctor recommended acupuncture which I've also started, I'll keep everyone posted. Good luck with your doctor.


I've only had one (upper) endoscopy. It has pretty much put my diagnosis in limbo because I tested positive for parietal cell antibodies in 2008 and was given the PA diagnosis, but tested negative for parietal cell antibodies in 2009. I was sent for an upper endoscopy where they *didn't* find gastric atrophy, celiac disease, or h pylori. So I have B12 deficiency without any known cause according to the tests. (I'm still pretty sure it's actual PA.)

Since they didn't find anything wrong, and I was basically un-diagnosed, follow up endoscopies have never even been mentioned let alone offered. I've only heard of one person - in Canada - who actually got them done routinely. Interestingly in her case, she was diagnosed with juvenile PA by presence of intrinsic factor antibodies but her endoscopies have never shown gastric atrophy.


NICE recommend that one should be tested for Intrinsic Factor antibodies rather than Parietal Cell antibodies.

Here's what they say...

Checking for anti-intrinsic factor antibodies

Anti-intrinsic factor antibody is extremely specific for pernicious anaemia, with a high positive predictive value of 95%, but a low sensitivity of 40–60%. This means that about half of people with pernicious anaemia will have anti-intrinsic factor antibody [Andres et al, 2004; Longmore et al, 2007]. If anti-intrinsic factor antibody is present, pernicious anaemia is very likely, but its absence does not rule out a diagnosis of pernicious anaemia [Devalia et al, 2014].

The recommendation about checking for anti-intrinsic factor antibodies in people with a normal serum B12 level if there are strong clinical features of B12 deficiency to check for pernicious anaemia is based on expert opinion in Guidelines for the diagnosis and treatment of cobalamin and folate disorders published by the British Journal of Haematology [Devalia et al, 2014].

Not checking for gastric anti-parietal cell antibodies

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].

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Assessing for folate deficiency

How should I investigate a person with folate deficiency anaemia in primary care?


Yes, my first doctor didn't know that she should run both tests and thought that just the parietal cell antibody test would be sufficient, so that is the only one that was run in 2008. In 2009, when I went to see a hematologist, both parietal cell and intrinsic factor antibody tests were run, but I tested negative on both. I was surprised that I tested negative for parietal cell antibodies since that is not something that magically goes away. I was already aware that the intrinsic factor antibody test misses almost half the people who have PA, so I thought there must be a testing error somewhere and had both tests immediately rerun. They both still came back negative. I haven't had either retested since 2009. I have read somewhere that, the longer a person has an autoimmune disorder, the less likely they are to test positive for the antibodies. I'm probably quoting that wrong and I don't remember where I saw it. Sorry. :(

In the end, I still have a B12 malabsorption issue. It seems like I've been tested for everything under the sun and it's all been ruled out, which leads me to suspect it really is PA after all. It leaves me in diagnostic limbo though. Not a fun place to be.


I was refused further investigation of my B12 deficiency although I asked for endoscopy. It seems a wise precaution.


In terms of gluten free, I have found I need to be very strict. No cross contamination, no shared factory equipment.

I have some sort of overgrowth issue that was better but is coming back. I'm not sure what triggered it this time, maybe sugar. I was tested for overgrowth somehow but my doctor didn't really discuss the exact results.

It's reasonable for you to feel you need more information and testing. It would not be reasonable for her to dismiss your concerns since you are symptomatic. Perhaps giving her a clear list of symptoms could emphasize your concerns?


Before you get into the test that are more expensive etc try getting tested for IGA Def. I had chronic gastrointestinal problems along with other symptoms. IGA is one of the immune antibodies we are supposed to be born with. It protests the mucous membranes in your body. If you also experience alot of urinary tract problems, mouth infections etc. I'd bet $$ that's your problem.


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