Anti-Parietal Cell Antibodies - What does this actually mean?

Hi, I'm new to this forum but desperate for some clarity. I'm a 23 year old female who was diagnosed with Anti-Parietal Cell Antibodies in 2013. I was told by my doctor at the time that this should cause me no concern and I should continue as normal.

For as long as I can remember I have had stomach trouble (IBS like symptoms) and suffered quite severe depression, brain fog, confusion, lack of concentration, anxiety - the list goes on - in the past. I also have Reynaud's Syndrome so my temperature fluctuates and I have facial flushes.

After doing a bit more research into the above condition, I booked a doctors appointment where I was told I had pernicious anaemia but there was nothing to be done at the present time. I tried to pry further but was unsuccessful - the doctor seemed to be lacking knowledge in this field. This happened on three subsequent occasions with three separate doctors with varying opinions. I have been told I do have PA, I do not have it, I will eventually go on to get it and so on and so forth. What are these contradictions about??

With the support of my dad, I have been granted quarterly injections of Vitamin B-12. Prior to injections, my count was 400. I was told this was normal, and have also been told that I do not have PA as the antibodies are yet to destroy all of the parietal cells but that injections will do no harm so I am welcome to them if that is what I choose. It seemed like I had nothing to lose so I've given them a go.

However, nobody seems to be able to tell me what having Anti-Parietal Cell Antibodies actually means, and it is all extremely frustrating.

My stomach issues are very severe - bloating, gas, trapped wind and stabbing pains every day without exception. I am on a strict diet and have been to see both a gastroenterologist and dietician out of sheer exasperation. I do my best to look after my health and am very fit and active. I do not drink alcohol or eat wheat and dairy products and I prepare all of my meals from scratch in a bid to keep the gastro issues at bay.

I also have many symptoms of an overactive thyroid (my mum has type 1 diabetes and had surgery for an overactive thyroid herself) and am going for blood tests this morning. I have discovered that Anti-Parietal Cells can go hand-in-hand with Thyroid dysfunction. It all feels very unfair and I get the impression that embarking on the journey to solving the route to all my internal disarray is not going to be easy. I certainly feel like body is out of whack but I'm so used to it I don't allow it to affect my ability to function.

I would just really like to know what my diagnosis actually means, prognosis and whether there is a connection to the constant stomach and digestion trouble, or whether I am completely misconstrued to link the two together. It just seems somewhat coincidental that I have an autoimmune disorder of the stomach and have much trouble with digestion.

I am consistently assured by professions who first tell me they have zero knowledge of anti-parital cells, that I definitely have IBS and the difficulties are nothing to do with the auto-immune disorder. This seems absurd to me - how can they assure me of this when they don't have the knowledge to confirm this in the first place.

Any responses would be brilliant and duly appreciated.

36 Replies

  • My understanding is that the Parietal cells in the stomach produce Intrinsic Factor. Intrinsic Factor is used in digestion to extract B12 from your food. As long as you eat a normal healthy meat and 2 veg diet you should NEVER be low in B12. However, if you have Parietal Cell Antibodies that means your parietal cells are being attacked by your immune system and so your ability to produce Intrinsic Factor(IF) is severely curtailed or even reduced top zero. Low or no IF means low or no B12 extraction. I take it you are in UK?

    Go onto the internet and download the BCSH guidelines, NESAQ guidelines

    or can someone else supply the links?

    The GP should be following those guidelines and if you are symptomatic, you should be getting jags every other day until no further improvement

  • Thank you very much for posting and describing your symptoms. That alone is useful to others. I am not an expert, but it seems to me there are no medical experts either. I think that the question: do people with parietal and/or intrinsic factor antibodies report symptoms before developing full blown PA is simply unresearched, unanswered, maybe even unasked.

    That's why you are being told it is no problem.

    Your blood test results are not showing anemia or severe B12 deficiency yet - so officially you are "asymptomatic" in a medical mind. The only symptoms they are acknowledging as real are blood test results.

    But I think you will be right, and what you are reporting are the early effects of the antibodies which medical science has not yet researched or acknowledged.

    And I think it is even possible that the reason many women go to their GPs with symptoms which exactly fit hypothyroidism, but are sent away because their TSH is too low for a diagnosis, may be suffering from similar effects from Autoimmune Gastritis, which is the condition I think you have, not pern. anemia, which is what you develop if you have AIG long enough. If you google AIG you will find some research. It must have been fairly recently given a name, because many people talk as though they are the same thing.

    I am quite sure you are right, it is not IBS, it is AIG.

    If you have thyroid issues as well, some of the anxiety etc of course will be linked to that.

  • Hi Aspmama. Thanks for your response! I agree with what you're saying about a lack of knowledge with regard to anti-parietal cells.

    I've researched atrophic gastritis before and I thought it sounded more like me. If this is the case, do you know whether or not symptoms be alleviated?

    This is an unpleasant question to ask, but had my illness been caught earlier, could the issues in having now have been avoided?

    Do you know what the outlook is? There isn't much detail online about AIG, so I apologise for all the questions. I'm just so desperate and frustrated. The issues I have are painful and very embarrassing. I look 6 months pregnant on a daily basis even though I watch my diet like a hawk!

  • Yes, me too. I haven't tested for antibodies yet. But the gastric symptoms sound very similar. I have Hashis. These autoimmune conditions seem to group together.

    Everyone here i think will tell you that though the B12 reading is OK for the medical profession, it is too low, and will point you to the book: "Coould it be B12".

    Since your stomach is not absorbing nutrients properly, and while you lobby for a better injection regime. you could consider taking daily sublingual methylcobalamin. There is "no evidence" that it is better absorbed, than normal methycobalamin, but that's again probably because the research hasn't been carried out. There is "no evidence" that doctors are fully sane, either. See if i helps - it won't be immediate. But there will be a whole list of other nutrients not being properly absorbed. What was your serum ferritin count?

    I suspect no one know what the progress is. They seem to think AIG is an inherited condition - but even so, if it is caught early, at least it would be possible to supplement intelligently.

  • Are your calcium levels in range? Hyperparathyroidism has been linked in one study to AIG, quite strongly linked, so it might be worth keeping an eye on calcium levels.

  • The way I understand it, parietal cells line the stomach and are necessary not just for producing intrinsic factor but also for stomach acid. Antibodies against parietal cells mean that your immune system is attacking and destroying the cells you need to properly digest food and bind B12 for absorption.

    Low stomach acid can cause IBS like symptoms because the food is not getting broken down the way it should and is left to ferment on it's own. It seems that getting tested for low stomach acid is pretty uncommon, so some people try things like taking a little lemon juice or apple cider vinegar before a meal to see if it aids in digestion.

  • Hi Galixie. I can't believe this. I have gone to my doctor so many times and really tried to get him to even consider the auto-immune problem I have with my stomach as a component to my very severe '"IBS" symptoms. Never ever to any avail; my suggestions have simply been dismissed with a single line sentence of "No, that's definitely not the case as the two are not linked in any way."

    What you have said about low stomach acid makes so much sense! I will certainly try lemon prior to ingestion.

    I'm currently on what is called a low FODMAP diet which excludes an extensive list of foods including apple, so the cider vinegar will have to be missed. As much as I love apple :( I'll have to dig out my most recent test results to see if they can give me any more clarity in tetras of stomach acid. If not, I will be asking for a test.

    I can't believe how intricate all of this is and how difficult it is to reach concrete conclusions - thank you for your contribution towards my attainment of better controlled health!!

  • On the question of apple cider vinegar, I have looked into this previously in connection with a low FODMAP diet (which I was following for persistent IBS symptoms and which did help!) and it seems that the double fermentation of apples to produce apple cider vinegar significantly reduces the FODMAP content (though does not necessarily eliminate it - so if you're trying to avoid FODMAPs completely, then maybe apple cider vinegar is not for you). See e.g. this article here:

    An alternative to consider may be taking a Betaine HCI supplement (only at the end of the meal, especially protein rich meal). See e.g. this article on low stomach acid and thyroid (in this case an autoimmune hypothyroidism, Hashimoto Thyroiditis):

    I am now myself researching the meaning of parietal cell antibodies (I have been tested positive for these, though same as with you, doctors cannot explain what that actually means). I also have Hashimoto Thyroiditis (i.e. the autoimmune thyroid disorder) and I do wonder how the two are interconnected.... If you find out more, I would be very grateful if you could share and I'll do the same!

    P.S. On the hyperthyroid symptoms: before my thyroid was taken out (thyroid cancer and advanced Hashimoto Thyroiditis) I used to go through massive swings between hyper and hypo, because the more thyroid tissue was destroyed by antibodies, the more thyroid hormone was suddenly released into the bloodstream, causing hyper symptoms for a while, then back to hypo. I'm bringing this up, because it may be of benefit for you to get tested for all of thyroid antibodies (for both Hashimoto's and Graves diseases) just in case it actually is Hashimoto's and not Graves. And anxiety could also be a sign of Hashimoto's (as can a range of other symptoms, which may actually be attributed to the presence of elevated antibodies, rather the levels of thyroid hormone). But this is just an aside :).

  • Hi seekinganswers6

    This thread is a year old and CleoA hasn't posted anything in that time, so there's a good chance she won't get to see this reply.

    I'd not heard of a low FODMAP diet. I knew that people with non-coeliac gluten sensitivity were more likely to be sensitive to FODMAPs, but I didn't realise that people were acting on that info. Excellent!

    I tried the betaine.HCl for my stomach problems, but I had problems with the amount. Sometimes one was enough, sometimes it wasn't. I tried taking two but, after a while, things got a lot worse. I suspect that too much acid may have done something nasty to my gut flora.

    A course of probiotics sorted that out. Now I take lime juice - tastier (especially in a G&T), gentler and it's easier to manipulate the dose. I still have a couple of Betaine.HCl tablets on my keyring for emergencies though.

    I'm not sure if anybody knows why the immune system goes into overdrive and starts attacking the body to cause PA and Hashimoto's - but I wish it wouldn't.

  • Strictly speaking PA is an autoimmune condition in which your body creates antibodies which destroy either parietal cells (which absorb B12) or Intrinsic Factor (which enables the cells to absorb B12 - so despite what your doctor is telling you you do have PA.

    PA is one potential cause of malabsorption problems when it comes to B12. This leads to B12 deficiency and it is B12 deficiency that causes the symptoms associated with pernicious anaemia.

    These are wide and varied because of the role B12 plays in so many critical systems.

    Anaemia is not a defining characteristic of B12 - despite the mythology that many medics seem to prescribe to. In fact, the much better levels of folate in peoples diets these days mean that it often isn't one of the first symptoms to appear as folate masks the anaemia.

    Because the body absorbs and recycles B12 - albeit through the same mechanism - liver drains bile into the ileum to recycle - it can take years - even decades for an absorption problem - such as you have - to actually manifest in a full blown deficiency, and symptoms really can creep up on you over time. I had decades of depression, tingling in hands and other symptoms that I can now link to B12 but which all went undiagnosed at the time ... and my GP unfortunately like so many others is so hung up on the word anaemia - which I don't have - that he can't recognise that these are /were symptoms - many have gone or diminished significantly since I started treating myself.

    Many people are symptomatic at levels well into the normal range because the test looks at all forms of B12 not just the one that actually transports B12 to the cell level. In Japan you would be treated at levels below 500.

  • Also, on the other problems - unfortunate but having one autoimmune problem does increase the chances that you have more than one autoimmune problem. There is often a huge overlap in symptoms which can be one reason why sorting one out doesn't resolve all the problems. If you have PA then it's quite likely your mother may have it as well but because of the overlap with neuropathy in diabetes (if she is suffering neuropathy of any sort - may be that she hasn't and certainly hope that is the case) there is a real risk that the PA won't be picked up because it is assumed that it is just the diabetes.

  • My mum has never been tested for PA but I will show her this thread and urge that she is. Very interesting what you say about being treated in Japan if levels are 500 or below.

    It is very frustrating that GPs can't see beyond the word anaemia - you are very right there.

    Did you have any stomach issues such as bloating which have now diminished with more regular treatment?!

  • on the bloating - bit difficult to say - as I think lots of things often interact. hormonal changes affect my body quite a lot and that's where I notice the bloating but would also say I think it is less than it used to be. Think for me the gut interaction was more at the acid reflux end of things/heartburn and that really is a lot better now.

  • It is completely negligent that three doctors have failed to treat you, as you obviously have an absorption problem and it looks as though they may be waiting for you to develop anaemia, without realising that neurological symptoms precede this. You should definitely be treated with B12 injections for life, in order to avoid irreversible neurological damage - and according to the latest BCSH, UKNEQAS and BMJ research guidelines and regardless of serum B12 test results.

    Where to start - at the beginning - you are quite right about the thyroid connection and that autoimmune disease starts in the gut - Extracts from Marc Ryan's Hashimoto's post on Facebook I think explains this well:

    "The biggest axis of trouble is often found in the thyroid-brain-gut connection. And one common problem that causes this is leaky gut or intestinal permeability. Many researchers believe that this is ground zero for autoimmune disease. It is the place that autoimmune disease is born and the place that makes it get worse and worse. And when things get worse in the gut, problems in the thyroid and brain often follow. The small intestines are the place where leaky gut often happens. And the walls of the small intestines are lined with tiny little hair like protrusions called microvilli. On a regular microscope they kind of look like a tiny, fuzzy paint brush. This fuzzy appearance is why they came up with the term "brush border" to describe them. This is the place where absorption happens. And many people with Hashimoto's suffer from deficiencies of important vitamins and nutrients (like vitamin D, vitamin B12 and B6, zinc, selenium, magnesium, iron, etc. One of the reasons for this is the breakdown of these brush borders."

    These links might help in getting the treatment you need:

    (An excellent film on this site)

    See page 4 re. Pernicious Anaemia.

    Points from the Cmim/BMJ document. " Summary:

    * Vitamin B12 deficiency is a common but serious condition

    * Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.

    * There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."

    * There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.

    * If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.

    Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy.

    It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given without delay."

    Hope this helps clarify and helps you continue to have injections but more frequently.

  • Hi Polaris. This is certainly very helpful. I just don't know where to go from here - do I demand more regular injections of B12? Do I take all of the info to my doctor so they don't just roll their eyes and turn me away; the usual response.

    I am unbelievably deflated by me whole experience and by all of my symptoms. I feel so affected by them and have got to the point where I cannot imagine feeling healthy.

    I can't comprehend not suffering all the gastrointestinal discomfort I do and can't help but doubt myself when the doctors are "100% sure" that it is IBS. I am at my wits end with the whole situation!

  • Just wanted to say that I had got to the point where I had given up on the possibility of ever feeling better and could only see myself slipping into death - didn't have a life - just an existence - which is all I had had for years ... depression/anxiety were probably my major symptoms but I'd slipped into having no balance and very little awareness of where bits of my body were which made moving difficult as well ... and then there was the tiredness and not being able to think straight ... tried talking to my GP about things ... and he spent ages going through things with me and was trying to convince me that it was all depression and I should be taking anti-depressants (it was seeing the standard test for depression and realising that anyone with B12D was likely to score high on it even if their mood wasn't affected by the deficiency) that was the final straw and pushed me over the edge into treating myself. It isn't a decision I regret - after a couple of months I realised that the depression was gone and it's like getting my life back after ... well not sure that I'd ever really had one til that point.

    Someone this afternoon made some remark about 'oh to be 40 again' and the thought going through my mind was that I really wouldn't want to go back to 40 again.

    Unfortunately there are never any guarantees in life so is possible that there are other things going on as well as B12 ... but it is so irritating to see IBS given as a diagnosis when actually it is a label for a collection of symptoms that could have a number of causes - same is true for depression, anxiety, GAD (General Anxiety Disorder) ... does leave you wondering how medics can actually claim that they are being scientific with a straight face :)

  • I know how angry and frustrated you must feel - I had to battle for my sister, who had such severe deficiency that she was hardly able to function - had MRI and psychiatric drugs and diagnosed with ME and dementia. It was only through sheer perseverance, writing and emailing her surgery with medical history, the BCSH guidelines and research, that the family eventually persuaded her doctor to trial the injections. They made such a difference that she is now receiving them monthly but I am still angry because the time wasted meant that her memory may never fully return - the sheer arrogance and ignorance of the GP took my breath away, who admitted she knew nothing about B12, that I had obviously researched and that medicine was too test based these days, but still withheld injections.

    The B12def. link above ohas templates for writing to your doctor - I believe that if the treatment protocol is in black and white, they are less likely to ignore you - they're more concerned with being sued I'm told.

    Re. digestive problems - again, all GPs offer is B12 depleting PPIs & antacids (when the problem is usually low acid). I had gastritis, H/pylori, IBS, gall bladder pain, heartburn, bloating, etc. for years but finally found complete relief from all of it since avoiding gluten (I don't know why I didn't do this years ago) and eating a spoonful of Sauerkraut before every meal (better than any probiotic). Swedish Bitters sorted out all bowel problems - start gently though!

    The other alternative in the meantime is to supplement the injections with Jarrows Methylcobalamin 5000 mcg sublingually or use oral/nasal sprays, and see if you start to feel better.

    Hope things start to get better for you.


    Might be helpful on the distinction between autoimmune gastritis (which this study calls ABG - different countries may be naming it different things) and PA, the end stage. The nomenclature is clearly at the point of change, which makes things confusing for us all.

  • And, from that link, here are the diagnostic markers for each condition.

    "PA is defined as the presence of a hemoglobin concentration < 13 g/dL for men and < 12 g/dL for women[45], mean corpuscular volume ≥ 100 fL[5], low levels of cobalamin (vitamin B12)[5], together with the concomitant presence of ABG and intrinsic factor deficiency. By definition, PA is associated with ABG, and strict diagnostic criteria for ABG are based on the histological confirmation of gastric body mucosal atrophy and enterochromaffin-like (ECL) cell hyperplasia, associated with hypochlorhydria to pentagastrin stimulation[4]. Increased levels of fasting gastrin and decreased levels of pepsinogen I are well accepted serological markers[46,47], which suggest the presence of oxyntic mucosa damage, which should be confirmed, however, by appropriate histological sampling of gastric body mucosa to diagnose ABG definitively."

    So to diagnose autoimmune gastritis "definitively" they have to have a look at your stomach lining - did the Three Unwise Men do that? Are your blood gastrin levels raised, d'you know? The professor who said you didn't have PA will be looking strictly at your haemoglobin concentration and the other indicators, and you obviously don't meet those criteria (yet). The prof. who said you did will be using PA as a loose synonym for AIG/ABG.

    Keep taking the methylcobalamin.

    Thank you for inspiring me to research this all some more - I know a lot more now!

  • My stomach lining hasn't been looked at! This is yet another thing I have wanted for a long time too. Next time I go, I will be requesting a biopsy. I'll have to dig out my most recent b12 blood checks to see what the levels were and post them on here. I asked the GP to explain what they meant and he said all my results were fine, even though more than a couple had "! - abnormal result seek further investigation" next to them.

    I'm so angered even reliving that moment. I apologise, but what the **** is wrong with these people!

  • Just to say that I'm in the same situation. First went to GP because I was exhausted but also had digestion issues - bloating every day and terrible burping whenever I lay down. Found I had quite bad iron deficiency anaemia. Have had difficulty getting my iron levels up which I think shows an absorption problem. GP was certain anaemia was due to heavy periods - I wasn't. I tried explaining to GP that I thought I might have low stomach acid but that did not seem to be a possibility. I was prescribed PPIs for the bloating - which I didn't take since they lower stomach acid. Eventually got tested for h. pylori (negative), coeliac (negative) and finally I asked to be tested for anti parietal cell antibodies. GP said that only old people get those when they have pernicious anaemia - but mine came back positive - twice (don't think GP believed the first test!). Have been told that having the antibodies is completely normal - "if you go looking for these things eventually something comes back positive"! GP agreed to having loading doses and 3 monthly injections even though my B12 level was about 360 - so I do feel lucky compared to the fight that a lot of people have had. But I don't think my symptoms are caused by B12 deficiency (yet). I also asked to have an endoscopy and to be tested for bacterial overgrowth. The gastro I saw didn't believe in testing for SIBO but asked my GP to prescribe antibiotics which eventually I couldn't have because they are not funded by the NHS in my area. I was told by the gastro that the biopsies did not show anything which explained my symptoms and I probably had "IBS" brought on by anxiety. I asked for copies of the pathology reports which show that I do have chronic gastritis - just not atrophy. No testing for low stomach acid. It seems to me that low stomach acid caused by autoimmune gastritis just isn't considered as a possibility in the UK at the moment. IBS is an easier diagnosis - and meaningless. GP eventually wanted me to try antidepressants - which I declined.

  • I'm sorry to hear you're also struggling. I was told the exact same thing - if you go searching and have enough tests, eventually something will flag up.

    Have you felt any better since having the injections? I'm glad you declined the anti-depressants. The same thing happened to me, except I have them a go and ended up with further psychological + physiological discomfort from the side-affects.

    Do you have any advice at all with regards to bloating? I can't bear it. The IBS diagnosis seems meaningless to me too as I have tried absolutely everything remedial to IBS symptoms no avail whatsoever. My stomach is ruling my life at the moment :(

  • The two things I've taken and at the same time had some relief from bloating are probiotics and HCl tablets (both tablets from Holland and Barrett). Can't say either definitely worked or whether it was just coincidence.

    B12 hasn't really had an effect on my fatigue - but that could be due to the fact that my iron levels are still too low.

  • Just wondering whether you've had the IF antibody test? If I can ever bear to go back to the GP I think I would ask for the IF test since I haven't had it and a test of my serum gastrin level - as that would at least show me whether I'm right in assuming that the cause of my problems is probably low stomach acid.

  • If only they would admit that they know nothing it would be helpful. "This is an illness which has only recently been given a name, only relatively recently have we had tests for this, we know almost nothing about it, I am very sorry."

    Rather than: "You can't possibly be getting the symptoms you suggest from this, have some tranquilisers."

    Well done Laura5 for diagnosing yourself. Can't you change your GP? He sounds very dim indeed and clearly a bit of a bully into the bargain.

    I fear it is down to us as individuals and with the help of each other to find out what is wrong with us and work out how to treat it ourselves.

    Thank God for private testing and the internet. How many women must have gone through this in the past, alone, being blamed by their husbands for being fat, unattractive and lazy????!!!!

  • "This is an illness which has only recently been given a name"

    I suppose 'recent' is a relative term, but do you really consider 100 years recent?

    "only relatively recently have we had tests for this"

    The tests are more recent than the name (only about 50 years old give or take). Unfortunately the tests that are available (serum B12 and paretial cell and intrinsic factor antibody test) are woefully inaccurate.

    "we know almost nothing about it, I am very sorry."

    Plenty of research was done in the 1960's and '70s. But it hasn't been followed up on or updated at all.

    If doctors were going to be honest about it, what they'd really say is, "This is an orphan disease that we may vaguely remember hearing about once in medical school, but which we've totally forgotten the details of. It's a disease that was invariably deadly through the 1930's, before a treatment was discovered. Now that there's a treatment (but still no cure), it's no longer considered deadly and has dropped off the map of important things to research."

  • You sound very comtemptuous, Galixie, and almost angry, but I do not think I deserve your contempt or anger. If you read back up to my earlier posts you may see that I am not, as you appear to imagine, talking about pernicious anemia.

  • I'm more angry at the medical establishment for dropping the ball. But I must not be understanding your earlier post. What illness are you talking about?

  • On the bloating, mine has gone down quite a lot. I gave up the nightshades - tomatoes, potatoes, peppers - to which I seemed to react, though not as badly as to gluten. But I also started taking n acetyl cysteine. It's hard to know what has helped - but it might be worth trying n acetyl cysteine - I can't find any research on it that's relevant, it helps in h pylori, but I haven't got that, apparently.

    I think you'll know when you try it whether your body wants it or not. Mine went: "Yes!!! More!!!"

    If anything helps or you find answers, please could you come back to the forum and tell us. (Or if not...)

  • Wow, I've given up so many foods I love already, and with the low FODMAP diet I'm on, cutting out tomatoes, potatoes and peppers would leave me with barely anything to make decent meals with and supposedly they're okay. I seem to react to everything anyway. Doesn't matter what I eat. It's unbelievably depressing.

    I got my hands on some betaine HCL today and am drinking lemon water like a fish so really hope that ups my stomach acid and food breaks down a bit better. I'll have to look into acetyl cysteine.

    I will most certainly come back to the forum to let you know if anything actually works. Should get my thyroid function results over the next few days also so will keep you updated!

  • I know, it gets to the point where you are down to some rice and a bit of fish and some lettuce. The betain might well help. Lots of people say it does. Good luck!

  • Hi Cleo,

    I've assumed you're in the UK so apologies if you're not.

    You could ring the PAS (Pernicious Anaemia Society). The chairman is very sympathetic and may have some advice. Head office: 01656 769 717

    There is a section on the website for health professionals which your doctors/consultants may be interested in and the Library section has some useful documents including a summary of BCSH guidelines.

    Some other useful info


    Could It be B12 by Sally Pacholok

    Pernicious Anaemia; The Forgotten Disease by Martyn Hooper

    Living with Pernicious Anaemia by Martyn Hooper

    Have you ever had tests for coeliac disease? It is possible to test negative and still have the condition. Some people with coeliac disease have an IgA deficiency. IgA deficiency has been found in people with PA.

    Found some research that suggests that anti parietal cells can be found in coeliacs and is more common in those with dermatitis herpetiformis rash.

    I had IBS symptoms for years...there was no interest at all from GP but it cleared up when I gave up gluten and dairy. I also take probiotics every day.

  • Thank you for all this info Sleepybunny! I have been tested for celiacs - negative. I've given up gluten and dairy but still suffering. Seems I can't eat anything without reacting badly.

    I am bloated the majority of the time and it feels like I've got a dead weight in the pit of my stomach. Always very tired as well, extremely irritable and tearful for not reason.

    I'm completely deflated :'( and hopeless.

  • Also, Google vsl#3. I think one pill a day would help you tremendously. I just started them

  • Hi Cleo,

    I wondered if you had been tested for H Pylori infection as this can cause IBS type symptoms in some people. If your doctors refuse to test you then it is possible to get private tests.

    I know someone who was referred to the John Radcliffe hospital in Oxford for extremely severe IBS symptoms. Perhaps you could ask for a referral.

You may also like...