It's obvious to me now i have pernicious anemia. I went round and round with the conventional tests but the symptoms and the positive IF are enough for me. My symptoms are scary and include psychosis so this has been a nightmare.
My question is what exactly causes the low stomach acid to begin with please? I went vegan as a teenager and suffered horrible depression (i just now at 43 realized this was connected). I had no idea. It got progressive worse, I assume as my stomach acid got worse as I got older. But any help as to the physiological cause of all this. I don't have the common genes per 23andme so I'm a little perplexed by this whole experience. Thank you.
I am in the USA. I just started shots and immediately felt better.
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Ecf123
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I can relate to your experiences. I'm the same age as you and while I was never vegan, i did date a vegetarian in my early 30's who made me go vegetarian for a year....the things we did for love !
After a year I became uncomfortable with the thought of excluding meat, so took up fish for a year and then I guess 'flexitarian' since about 2013. I ate red meat and chicken about once a week.
In 2018 I was working in a job that I was probably unfit for. I was punching above my weight and it was a horrendously stressful, toxic and political atmosphere. But since it paid well I was also determined to buy my first home and so resisted leaving until I could finish up the house purchase.
Anyway, by early 2019 I was so stressed by the house move and job that I couldn't sleep most nights. I always felt hot and could never really have a relaxing sleep. We moved a couple of months later and I had the most horrendous stomach pain from what I thought was food poisoning. I'd never really had food poisoning before so didn't know if this was normal but this felt extreme to me. Something was definitely off. I let it pass for a few days before I had a consistent stomach ache, pain and a terrible reaction to alcohol that made me sick.
By June I was at my new doctor explaining the symptoms. They sent me for a colonoscopy and found 3 polyps. Plus bowel cancer is in my family so I guess they saw a risk. So I assumed that was it and felt so much better after the procedure.
But as the months passed, the heat in the body persisted. I felt nauseous, and often woke in the night dehydrated and agitated. My nervous system wasn't too well that's for sure. The dr asked if I had been stressed and offered to sign me off work. But by then I'd lost the job (should've seen it coming right) and was working part time. So I couldn't really not go into work at all.
But with that misdiagnosis it took another year before I became anaemic and b12 deficient. By which point I'd tipped into the dark side!
I still don't know the cause. And I had the same psychosis and confusion as you probably did. It led me to imagine that the Dr's didn't want to help me and were too busy with the pandemic (took a week to get an appointment and 2 weeks for a test) so I began self-treating. The mania sent me into another world that I was desperate to escape from and I foolishly believed I could treat it myself. So since I'm seen as a hypochondriac by the surgery, I'm reluctant to go back to the Drs for more investigations.
But, I did find I could absorb B12 sublingually. And from advice from others, it seemed unlikely I had PA for this reason.
But was it the diet? My wife seemed to think it was. And a low protein diet can reduce stomach acid too.
But also, my other symptoms (partial loss of feeling in right hand and left foot) were not symmetrical. And so I assumed there were other nutritional deficiencies at play, which leads me to believe I do not have PA but that I potentially had a very stressed stomach. And possibly a stomach ulcer that was never detected or treated. At least I did stop any bowel cancer.
So in answer to your question, there are many reasons for PA. But for stomach acid, this could well be down to stress. For me, I'm certain it was a combination of stress, lack of sleep and perhaps a low intake of meat over the years, i.e. not enough to restore or replenish my system. With drinking alcohol on top, and not sleeping well, it most likely created a low acidic atmosphere that stopped me from absorbing B12.
So it could be those reasons for you. You may have had lower lifetime stores of B12 from being vegan. But you started to lose the gut microbes from not enough meat or protein which made your system have to work much harder to transport any proteins and B12 to where it needed to go. And if you're certain you don't have a genetic link to it, then perhaps there was a trigger like stress, lack of sleep, even eating too fast, gas and burping and alcohol intake?
Before the pandemic we had little time to practice mindful eating. Everything was a rush. A 'do it now' culture. But our bodies are not designed for that. They need to digest simple, healthy food with no processing or preservatives.
When I was stressed, I ate pizzas and pasta for comfort food. Plus they were quick and easy. Looking back, it's hardly surprising I got ill.
I hope that's helpful in some way and perhaps you could identify with some of it?
Thank you! Yes, I can relate. I did the vegetarian thing and went psycho so I dropped that. Yes, I'm now switching to high protein diet (thanks for the tip on stomach acid). I tested low for stomach acid. I agree, probably genetic!
Sorry, there's also a risk from H.Pylori - have you been checked for that?
"Helicobacter pylori has even been discussed as trigger for AIG because of the molecular mimicry between H. pylori antigens and the gastric H/K ATPase [19, 20]. Although several studies have examined this issue, the role of Helicobacter pylori in pathogenesis remains unclear."
Hi Pickle, I ruled out h. pylori via several tests. My father though had pylori resulting in a stomach ulcer. I'm wondering if some kind of stomach issue, the low stomach acid is genetic probably. I don't know. It's all seriously overwhelming. I'm just finally glad to know it's PA ultimately that's causing the psychiatric symptoms. Seems obvious now but it took a very long time to connect the dots here. Thanks.
P.A. patients have low/ no stomach acid ( Hypochlorhydria/ Achlorhydria) because the intrinsic Factor Antibodies they produce annihilate the Parietal cells in their stomach These cells produce not only the Intrinsic Factor, but also stomach acid. Lack of stomach acid upsets the stomach flora , and bad bacteria take over , resulting in stomach ache , bloating , burping , reflux etc . I helped my gut by taking a liquid probiotic called Symprove . But there are capsules and natural probiotics ( organic sauerkraut , kefir , yoghurt ( NOT the sweet flavoured kind) kombucha etc. ) This coincided with Self injecting B12 , and in a few weeks my gut problems were gone . Don’t need Symprove anymore .
thank you. yes i just started the shots. i'll look into symprove but probiotics have really not done anything for me in the past. i'll check it out though thank you.
Your gut problem is maybe not connected with P.A. I feel I can recommend probiotics , because even if they are not the solution , they do no harm . Best wishes .
yeah i looked that brand up but they are UK. I'm in USA. probiotics def do something but just not really what i hoped. like they change my menstrual cycle which I find bizarre and unrelenting, you know its exhausting trying to figure this stuff out. i just avoid since they do something to my hormones. i imagine thats because estrogen is made in gut. i just avoid until i have the energy to deal with the bad bacteria later. but thank you!!! i'm hoping the shots resolve enough to where i can function without being exhausted as a first step. thanks for responding!!!
Hello Ecf123Don’t know if this is relevant to your case but I believe I have pernicious anemia because I needed mega doses of penicillin at least twice in my life. This did deep damage to my gut flora and no GP ever told me to repopulate the gut during and afterwards with benevolent flora 🙄
I also tried vegan & vegetarian diet (only for several months at a time mind you) and it definitely didn’t work for me.
I’m SO glad that the B12 injections are helping you.
yes good point! this gut issue is probably why i don't feel much of a difference with the vitamins as opposed to shots as they are just not absorbed like anywhere, not in stomach nor gut. thank you!
Hello Ecf - regarding underlying genetic causes… do you consider AIRE (autoimmune regulator gene) as a common gene for PA? I found out this year I have a single mutated copy of AIRE, and a normal copy. Apparently even a single mutated copy can be enough to result in a mild/ incomplete autoimmune polyendocrine syndrome (which essentially means that your body can develop autoimmunity against a number of organs / glands etc, including thyroid, pituitary, intestines etc).
B12 deficiency and PA are identified as quite common with autoimmune polyendocrine syndrome.
yep you are correct. I have an AIRE mutation on my promethease report that (per my limited google search just now) causes autoimmunity. Wow, my dna research felt so futile I gave up, i couldn't figure anything there out so I really appreciate you posting this. It was so overwhelming to have all that data and no real organization other than google. So it's AIRE. Yeah, then I it's genetic for me. I thought so but i couldn't unravel the 23andme maze. I appreciate you!!!
If you have an AIRE mutation, do you know what type of mutation it is? In general terms some mutations can be more pathogenic than others - some mutations are considered ‘pathogenic’, some ‘likely pathogenic’ and some ‘variants of unknown significance’. Ps - I’m not an expert in this, there may be other categories too!
If you have a mutation in AIRE it will mean you may have a pre-disposition to certain other autoimmune conditions (eg affecting your thyroid etc etc), so it would be worth making sure that your doctors are aware of this if ever you start to have other relevant symptoms (so that they can check things like thyroid function, for eg).
I’m interested in the type of results you get with 23andme - do they show all mutations in all genes, or just mutations relevant to certain disorders?
23andme shows ALL mutations, like seriously a lot and it's called raw data and you have to use these engines like promethease or genetic genie or pay an expert to translate all that raw data. But i've realized these engines are not consistent but promethease seems ok. According to promethease I have two mutations. rs2075876(G;G) (pathogenic not listed/unknown) and rs142788946(G;G) (probable pathogenic but termed good?). (I can't figure out what good actually means). all i found is this on google for the first mutation: rs2075876 of the AIRE gene were also detected as significantly associated with Addison's disease... researchgate.net/figure/Res...
Any help on these two mutations is most appreciated!!!
I have no knowledge of these, I’m afraid (I do not have a medical background). It is worth remembering that there will be a lot of people with these mutations who will not end up with whatever illness they are associated with, so you should see it as something to be aware of, perhaps as a pre-disposition, but not as a definite thing that you will develop. There are likely to be so many other factors at play (not just environment and lifestyle, but the influence of other genes / factors on how particular genes are expressed).
If it is an option for you, you could always carry on with trying to work through it all yourself, then take it to a private geneticist for an appointment, to look over the mutations / genes you are worried about, who will be able to advise you more.
I have recently had an appointment with a private geneticist (in uk), for advice / opinion only (no tests), it was approx £300.
Thanks for info on 24andme! It is something I might consider doing in the future
you're welcome! yes 23andme is just an overload of raw date, 23,000 i think. something about 23k. ok, yes i have to do the consultation with a geneticist expert for sure. the autoimmune of different organs will be what i tell them is the symptom. when i tried that route they were so difficult and didn't like 23andme and said it wasn't good enough for them, and then one said they only dealt with people with actual symptoms. and since i didn't give them symptoms they referred me elsewhere. its overwhelming for me. but autoimmunity is the symptom, of multiple organs it seems here so i appreciate you helping me focus here. !!! thank you!!!
Oh, that sounds awful. I think a lot of it boils down to getting in front of the right person. I am really fortunate in that the (genetics) doctor I consulted recently was very helpful and understanding. Perhaps you could look at reviews from other people who have consulted the doctor, or contact them beforehand to ask if advice about 23andme results (in the context of relevant symptoms) would be something they could help with?
I think if you can keep a list of all of the symptoms, test results and diagnoses that would be really helpful. I’ve found that as health problems multiply, doctors tend to get confused (and get it wrong), so I have a word document that lists everything with short descriptions of symptoms, test results, and any diagnoses for these things. - and offer to hand it over at the start of the consultation!
In terms of 23andme not being ‘good enough’ for the private geneticists - I have just googled and Wikipedia says that there can be some inaccuracies; but that doesn’t necessarily mean that your results for that gene are inaccurate.
If whatever geneticist you see wants further confirmation (beyond the 23andme results) I presume they can suggest that you have a further test (of that particular gene). I had some genetic tests done privately last year, they are priced at approx £200 plus per gene (with some panels being more), depending upon what is being tested (and how time consuming it is to test).
It all depends upon what you want, out of this process. A consultation with a geneticist may or may not give you any further answers, so I suppose you need to think about what you want from it.
yes agreed, they wanted further testing which here was expensive. yeah i like the word document idea. leaves less to the imagination, and opinionating. thank you!
oh yes i've gone the thyroid route for a while now: have both graves and hashi, fluctuates between both. i gave up on that honestly. i just leave my thyroid alone and that seems to be the best route. but this stomach stuff is problematic. i think the mutation i have per below is what you say, it does cause autoimmune with multiple organs. if you know most appreciated!!!
I will be veering into the unorthodox (non-mainstream ) here, but my plan (once my diagnostic journey has plateaued) will be to research pathways and approaches that can complement whatever mainstream medicine is doing for me.
My thinking (without having read too much into it yet!) is to try and adjust diet to reduce chronic inflammation levels generally (I think there are particular dietary things you can do for inflammation), and I will also trial intermittent fasting (ie eating in an 8 hour window… eg having breakfast at 9.00am and evening meal just before 5.00pm, and then not eating between hours of 5.00pm to following 9.00am). I have read about this in a number of places, but there was recently an article in New Scientist - apparently leaving a 16 hour gap with no eating in it enables the body to switch to ‘repair’ mode; the New Scientist article was specifically talking about gasto-intestinal repair.
Generally speaking, I am also going to look into controlling (managing) sugar / glucose intake in order to stabilise insulin (in hope of reducing an inflammatory state). Jesse Inchauspe has written a really interesting book about this (I think it is called something like ‘the glucose revolution’ or something).
all good routes for sure! I did the intermittent fasting as recommended by Jason Fung (Life in the Fast Lane i think is one of his bestsellers but i just watched his youtube videos). It def helps the gut. One thing I noticed is i'm way less hungry in the morning and i always wondered about that. Even after not eating for since 5 the night before mornings there just was no hunger as opposed to evenings. Something about the gut repairing itself and there's something about food itself that makes you crave it more. Like just eating itself makes me hungry for some reason. I have weight issues that are genetic so i can't process fat (FTO gene mutation, i have the more difficult one). I just cut out fat yesterday so stay tuned. But I'm wondering if it was actually the fat intake my body couldn't process and then it led to hunger because i was like getting no vitamins from all that fat. (my doctor was pro atkins - yikes i know). anyway i'm on a tangent. i'll post here if this no fat FTO approach works for decreasing my weight. it's been such a nightmare the last decade. thank you!!!
The low stomach acid is a result of your autoimmune antibodies attacking the Parietal Cells in the upper portion of your stomach primarily the Fundus at the very top. These cells contain biological proton pumps that secrete gastric acid (Hydrochloric Acid). As these cells are destroyed over time your acid levels will drop from low to no. I actually had my stomach acid checked during one of my cancer screening endoscopies. My PH measured 6 which indicates no stomach acid. Now I take HCL and digestive enzymes before each meal and am doing very well with that and actually gaining back some of the 90 pounds I lost. I am in the US also and in the US it is standard practice to have a gastric cancer screening upon diagnosis of PA since it is documented that having PA puts you at 3 to 7 times higher risk for gastric cancer. Few doctors know this so if they have not mentioned this to you should then ASK for it and also ask to have your PH levels tested. They will scoff at testing your PH levels just they do not do that very often but is a simple tube and a slurp of gastric juice and a PH strip dip all while you are sedated so you never know anything happened. If they still don't budge then message me and I can send you reference information to write them a letter. This is near and dear to my heart as I had to do this very thing and it literally saved my life because they did this procedure and they found cancer. BUT it was early enough that they excised it endoscopically. Stomach cancer is 100% curable if found early as in my case. Sorry this is not meant to scare you just this will now be part of your life so better to educate yourself trust me the scary thing is when doctors start looking to you as the expert regarding PA.
stomach cancer is a concern as i also had my stomach acid tested and i have it somewhere but they concluded hypo-what it's called i can't remember but it was officially low. so yeah, from posts above this is genetic it seems. i'm terrified of cancer so i'm going to wait on that but i appreciate you educating me!!! dealing with the doctors is almost not worth not getting the cancer. that was a joke, sort of. thank you though!!!
"hypochlorhydria" is low stomach acid. with PA at advanced stages when most all parietal cells are destroyed is no stomach acid or "achlorhydria". Just know that stomach cancer is super easy if they find it early when it has not spread. Just excise it, no chemo or radiation...you're just "cured". Also the majority of people with PA never get stomach cancer so don't worry to much just be aware.
thank you Rexz! Yes I am def aware. My brother in law has higher homocysteine than I and his mother has stomach cancer so although we don't share the same genes I am def aware cuz my homocysteine is high too. all related. i appreciate the help!!!
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