Hello everyone, I did not know where else to turn then I found this forum.
I recently had a scope into stomach done and biopsy. At first they said there is no gerd no inflammation, then then Dr called and said Biopsy showed autoimmune Atrophic Gastritis.
She asked me not to Google, but of course I have been doing that for 2 weeks driving myself crazy.
I am very confused as Dr said to take PPI's but I found medical journals that said this is opposite of what should be done and in fact acid should be taken with food.
I recall my Dr started me on B12 injections back in 2010, but did not say anything at that time
If anyone can help me with knowledge and advice would be appreciated. My mind is driving with insane as I read this leads to stomach cancer.
Thank you
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Canadian77
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Welcome here. Just a brief reply, the most important thing is you have a diagnosis of autoimmune Atrophic Gastritis (AG) and are receiving Hydroxycobalamin or cyanocobalamin injections. I hope you are having them in the correct frequency.
Now, wording is superbly important in medicine. There is an increased risk that is all. It does not mean to say you will develop stomach cancer. Unfortunately, we have no crystal ball to predict the future.
I do not know your gastrointestinal symptoms that warranted an endoscopy and biopsy in the first place. That is the role and responsibility of a Gastroenterologist. Some people have to manage their individual signs and symptoms of AG and need PPIs which there are different dosages and brands. Whilst others can manage to reduce dosages. I freely admit my limited knowledge and hopefully others will be along to help.
The symptoms of low stomach acidity are, ironically, the same as the symptoms of high stomach acidity. PPIs will, I believe, treat one of the more distressing symptoms - heartburn - in both instances. In low stomach acidity the issue is that your stomach never develops enough acidity to turn of the production of gastric juices, with the result that they flow back through a valve to cause heartburn.
However, in the case of low stomach acidity it can be very effectively treated by taking something acid with food as this will mean that the stomach recognises acidity and does turn off the production of gastric juices. I find that if I do experience heart burn it responds very quickly to something acidic - will be nigh-on instantaneous for me. Taking something acid can also help with digestion - as dousing your food in acid is one of its primary purposes.
AMAG particularly affects the absorption of B12 in two ways - first lt destroys the protein that is used to facilitate the absorption of B12 and secondly it destroys the cells that produce stomach acidity, a condition needed for the absorption of B12 to work. However, if you are already receiving B12 injections the lack of acidity in the stomach is irrelevant as you are not getting your B12 from absorption in the stomach.
Prescribing a PPI is correct in terms of treating a symptom - just that in your case it may not be the most effective way of treating that symptom.
You could try sharing some of the articles from scientific journals that you have found. with your GP.
The lower levels of stomach acidity and resulting higher levels of gastrin in your system create conditions in which pre-cancerous cells form, so patients with AMAG are also at a higher risk of developing gastric polyps, which can then go on to develop into cancer. For this reason it is recommended that patients with AMAG are monitored for polyps. Please note, however, that not everyone develops polyps and not all polyps go on to become cancerous ... and stomach cancer is actually quite rare and only marginally less rare in patients with AMAG. regular monitoring and removal of polyps reduces the risk to extremely small - possibly even lower than the general population.
it can be as simple as a few slices of mandarin but generally I'd have some lime or lemon juice in carbonated water - mainly because I like carbonated water.
Hi Canadian, the very first thing I was prescribed when my Endo came back positive for Autoimmune Gastritis (AIG) was a PPI, Omeprazole.I never took one capsule. I knew that with AIG, Parietal Cell Antibodies (PCAB) were attacking the Parietal Cells (PCs) in my stomach. These cells located in the Gastric Fundus and upper 1/3 of the gastric body. PCs produce a glycoprotein called Intrinsic Factor (IF) and also contain the biological proton pumps that produce stomach hydrochloric acid. PPI suppress these proton pumps from producing the very acid that you need.
After getting my PPI prescription I told my my GI doc that I wanted my stomach acid measured. He told me he did not do that. When I asked why? "He said it would not change how I treat you". I never saw him again. I went to university hospital for my next Endo and they measured my acid level during that procedure by slurping some gastric juice and measuring the pH. I had a pH of 6 which means almost zero stomach acid or achlorhydria.
It's important to know that your doctor most likely does not understand what AIG is. See 99% of atrophic gastritis (AG) is caused by a bacterial infection called H-Pylori. This AG starts in the gastric Antrum at the bottom of your stomach. Whereas AIG begins in the upper 1/3 of the stomach. AG is regularly treated with PPIs. Now there is a saying in the medical field. They actually teach this in medical school "when you hear hoofbeats, look for horses, not zebras." You, now are not a horse, you are a zebra, a very special creature. AIG is somewhat rare and I've seen over 20 doctors these past four years and not one of them had ever seen someone with AIG.
So how did your doctor that prescribed you the PPI come up with your diagnosis? I suspect that it was on your biopsy pathology report. Pathologists do look for damage to the oxyntic mucosa (parietal cells).
My suggestion is to ask your doctor to test your serum Gastrin levels. This will give you an indirect idea of whether your gastric acid is normal or low. If Gastrin is high, above normal then that will indicate you have low gastric acid. My Gastrin consistently measures at around 1000 or hypergastrinemia which is expected since I have achlorhydria. This is due to the fact that with no acid my G-cells, at the base of my stomach, that produce gastrin, never turn off. Gastrin is a hormone that when produced, signal the proton pump in the PC to turn off. So it's a fascinating feedback loop of G-cells and Parietal Cells working together to keep your stomach at a pH of 2 - 3, a highly acidic state.
You don't mention whether you had a parietal cell antibody or intrinsic factor antibody serum test done. If not it matters no longer as the biopsy pathology report is the only diagnostic method that is 100% accurate. So congratulations on getting that done. That takes years for some, and many never get a firm diagnosis.
Please let me know if you've questions. I've a sneaky suspicion you'll have many! 🙂
Hello Rexz. Thank you so much. When were you diagnosed with AIG ?
Well, my family Dr has been pushing PPI's for years without any evidence, the surgeon who did my scope also said I need them. The pathology report came as : Gastric oxyntic mucosa with moderate chronic gastritis and atrophy, intestinal metaplasia present in 2/5 biopsy fragments.
Gastric antral mucosa mild, no atrophy, no IM
She sent me for blood work for Gastrin, IF antobodies and parietal cell antibody but said this is mainly academic to see if this is AIM and not caused by H. Pilori
I am really concerned about quality of life, I am only 41 years old, I have 4 kids, I play I do not pass this along to them.
My mind has been very negative this last week, depressed and thinking of worse case.
Canadian, good that your doctor ordered a serum Gastrin test. That seems to indicate she might be a zebra doctor! Those are very rare.
With AIG one would expect that the antrum would not be involved as AG involves the Antrum and spares the body yet AIG involved the body yet spares the Antrum. Although there are rarer cases, like myself that have the entire stomach involved. This is called Pangastritis.
Can you have a quality of life? Well that's sort of up to each of us. I am now training to hike the Grand Canyon Rim-to-Rim 23 miles in one day. This year October will be my third attempt. So I get along OK mostly. See...
I have been educating my doctors, speaking at conferences, and last year I had the opportunity to mentor two medical school students. That was very rewarding.
Oh yes, I was finally diagnosed with PA in September of 2020. But I had gone so long with severe B12 deficiency that I now have some permanent residual damage. So thank your card team for at least getting you your B12 injections some years ago.
As for your kids... This is known to be hereditary. I have my kids educated now to include a B12 test and a Parietal Cell Antibody test in an annual blood test. Reason being is that although Parietal Cell Antibody positive test is not diagnostic by itself it IS and I consider it the canary in the coal mine. It will show up first maybe decades before any symptoms occur. Then if PCaB shows positive you can begin other diagnostics and keep a watchful eye. 👁️
OK I've written one of my books here. I do hope it helps some. 🙏
Very helpful to me too!! This is what I am currently trying to restore - my stomach acid. I will see if my GP will play Gastrin ball and measure for me … so far they play few ball games and tend to drop it!
The best thing that works for me is I write well referenced letters to not just my doctors but also my legislature representatives. Those have been very successful for me. At least over hear. Why not try with NHS?
First big hugs and take a deep breath. I know EXACTLY how fearful you are feeling.
I had a 5 min phone call from my GP which basically went … are you a vegetarian? Do you get pins and needles? Sorry you have PA. You will need B12 injections for life. Can you come in on Monday? That was all the explanation I got! I googled too and scared myself silly!
18 months later I am still on the NHS waiting list to see a gastroenterologist!! Narwhal10 is right it’s about Risk of cancer - NOT a certainty.
I self treat and I can say I am now healthier and happier than I was 18 months ago. I suggest you research and learn about PA ASAP. Also research if there is a sensible alternative to PPIs like changing diet, changing lifestyle etc. I got hubby off PPIs this way. But you are you, special and unique so only you can find your health path.
Keep a diary of meds and symptoms, I learn so much about how to improve my treatment by looking back.
"I recall my Dr started me on B12 injections back in 2010, "
Are you able to access your medical records from that time? Could be useful to know your blood test results from that time and if your B12 levels were low, what the doctor thought was causing it.
I post a lot of information so worth taking a few days to read through it.
Some links may have details that could be upsetting so you may want to read through it with a supportive friend or family member.
Have you been tested for PA (Pernicious Anaemia)?
This is an auto-immune condition that can cause B12 deficiency
There is a type of gastritis associated with PA called AMAG, auto-immune metaplastic atrophic gastritis.
If you suspect PA, have you thought about joining PAS (Pernicious Anaemia Society)?
Some of the info may be specific to UK. PAS welcome health professionals from across the world. There is no charge for them to join PAS as affiliate members.
I want to welcome you most heartily to the PAS . You’ve come to the best place ! You’ve already had lots of advice , so I can’t say much . Do want to assure you that you should not be so worried about cancer . Autoimmune Gastritis is like saying Pernicious Anaemia. In fact the latest guidelines about B12 deficiency.are now using the term instead of Pernicious Anaemia , because they say it’s outdated because it is no longer pernicious meaning deadly , due to treatment being possible ( B12 ) which was not the case when the expression was coined .
Having Pernicious Anaemia means that you can’t absorb B12in your stomach , and that you have low/ no stomach acid . Hypochlorhydria / Achlorhydria . This is caused by the destruction of the parietal cells which produce both stomach acid and the Intrinsic Factor. B12 requires both in order to be absorbed . Hence B12 injections are the life-long treatment.
Although the UK guidelines for treatment may differ from the Canadian , you might like to read the new ones that have just been published
We have been a bit disappointed by them , but they are an improvement on the last ones .
Cannot understand your doctor prescribing you a PPI ,which would further deplete your stomach acid , if you have any. The suggestion to drink something acidic before or during meals is good .Diluted Apple cider vinegar is often used , or conveniently now available , tablets of ACV . Also some sort of probiotic such as sauerkraut, real yoghurt , kimchi or kefir . The good bacteria in those products help to deplete bad bacteria in the stomach. Bad bacteria can cause. Stomach pain . Low stomach acid can cause heartburn. .
I hope that you are receiving adequate b12 injections , enough to keep B12 symptoms at bay . Luckily , b12 for injections is an over the counter item in Canada . So if necessary you can self inject by IM method or Sub- cut.
Yes and yes it the answer to both questions . Low acid causes heartburn .Normal high acid makes the oesophageal sphincter close tightly , so no acid gets through . Weak , low acid does not give the message to the sphinter, so gets into the oesophagus , causing burning pain , which is called heartburn . Yes in severe cases Betaine Hydrochloric acid ( with Pepsin ) can be used at mealtimes . Best to ask a dietician / nutritionist how to use those capsules . It’s a case of trial and error to get the right dosage otherwise .
But it’s worth trying the apple cider vinegar first , which has obviously a more gentle action . As said you can now get it in tablet form .
Stomach acid is important .It keeps bad bacteria in check , Bad bacteria can also cause stomach pain , bloating .PPIs / antacids should only be used for a short period .
Look up treatment for Achlorhydria / Hypochlorhdria . Might be a few tips there .
No, I don’t know anything about it , except I have my last meal of the day at about 6-6.30 , which gives my stomach a nice rest for about 13 hours, which I find beneficial .
Best I can tell is intermittent fasting makes things worse. It's OK during the fast but when you eat you tend to eat a larger meal which exacerbates the issue. See my reply post below. What worked best for me during my hypochlorhydria stage was to eat smaller meals more often and less protein. This smaller meals allow you acid production to catch up to you diluting your gastric juices much easier than a large meal.
Most likely not since your Antrum appears spared from gastritis. This is a standard statement they add when gastritis is found but nu HPylori. In some cases of long standing H-Pylori infection there can be atrophic gastritis but H-Pylori has long been eradicated. Antrum is where you would expect to see H-Pylori caused atrophic gastritis. Good question though.
Ok, check you patho report. Does it say something like "features consistent with Autoimmune atrophic gastritis/Pernicious anemia pattern" ?
I'm assuming there is something like that on there, check in notes at bottom of report also. Or also look for a note "no oxyntic mucosa" these will be confirmation from pathologist of AIG. If you have atrophic gastritis of Antrum then this could be a later stage AIG where high Gastrin levels are irritating chief cells and causing its own inflammation...this can eventually result in ECL-hyperplasia. A precursor to neuroendocrine tumor (NET). These are usually benign and rarely turn cancerous.
YES! You can have a very good life with this. But you have to be aware of and take action as there may be things that come along that are not near insurmountable. First step is to get properly diagnosed. H- pylori caused gastritis can be healed over time. Autoimmune Gastritis not so much. But it is perfectly treatable.
As a general rule of thumb, I do not recommend Intermittent fasting. However, everyone can try it and see how they individually respond to it.
This is mainly because the amount of time of food from mouth through the digestive tract which requires peristalsis and is influenced by the Migrating Motor Complex. These are coordinated waves/muscle activity and an electrical type wave from the brain to the gut respectively. In PA/B12D these may be slightly impaired. Obviously, we are all different here.
The easiest way to check your own gut transit is if you like beetroot or sweetcorn. Do not eat either for a week. Then time and date you eat either. Then be aware of end product. Anywhere between 48 to 72 hours is considered ‘normal’.
So, some people eat 3 meals a day and 2 snacks, others graze throughout the day. We all have what works for us.
So, with faster transit times, there are varying degrees, food can be travelling too quickly through the gastrointestinal tract. Some other essential nutrients of the broken down food may struggle to be absorbed. Also, the poor person may simply be back and for the toilet. They are late again for work, cannot go to their best friend’s birthday party. The social impact of a disease.
With slower transit times, again varying degrees. A person may not feel hunger, declines meals, is full after a few mouth fulls. Suffers from constipation which can be extremely uncomfortable and painful. May have a mix of diahorrea and constipation. In these cases, the former is called overflow diahorrea. All of which also can impact a person’s Quality of Life.
Their family, friends and colleagues regard them as weird because of their eating habits declining food, avoiding celebrations with food. Those affected also wish to deal with their symptoms in a private and dignified manner. As they are entitled to. Yet, others may make up stories behind their back.
Canadian77, had just found this forum and several of us breakdown barriers by discussing ‘embarrassing’ signs and symptoms. PA/B12D originates in the gut. I always break the Poo Taboo.
I’m sorry but I’ve never heard of those . Here on Amazon.co.uk we only have straightforward ACV capsules . ( Some have probiotics here) . So I really don’t know which one to suggest .
If the ACV capsules don’t help then I would use the Betain HCl Just thought that it would be good to start with something more conservative. .
Cannot stress too strongly how important stomach acid is for our health .
B12 is the most difficult vitamin to absorb It needs both stomach acid and the intrinsic factor . In P.A. / Autoimmune gastritis , this is overcome by having b12 injections . Other vitamins , minerals and trace elements need just stomach acid . A modest multi vitamin and mineral tablet might be an idea .
But please do not worry about stomach cancer . Your risk is only minimally higher than any other mortal . You are being treated and importantly you are aware .
Eating smaller meals more often is a good idea . Eating in a relaxed atmosphere helps . I love oranges - — maybe my body is telling me something !
You have found this forum now so you know where to come when you need to
I take Betaine and Pepsin capsules before a large meal and I find them helpful. I also take ACV in a salad dressing with meals which is also helpful. Cheap and simple and tasty toolkit item!
What Wedgewood said below regarding how proper levels of acid affects the closing of the esophageal sphincter (top of stomach). But also let's assume you are producing some gastric acid. In this instance between meals after your last meal (food) enters the small intestine and your stomach is now empty your remaining Parietal Cells will produce enough gastric acid to reach a pH of 2 or 3 (highly acidic). So at this moment everyone is happy. However, once you swallow food and it drops into that pool of highly acidic gastric juice, that pool becomes diluted and as you eat more bites the pool continues to dilute increasing the pH and the G- Cells detecting this higher pH will produce Gastrin signaling the Parietal Cells to start pumping gastric acid. Think of these like a shower head at the upper 1/3 of your stomach raining down acid. In a normal person (not that you're not normal of course!) there is enough acid produced to bring the pH back down to 2 or 3 and everyone gets happy again. But, if you have fewer good partial cells, as in AIG, they will not produce enough acid to get the pH down to the 2 or 3. The G Cells continue to keep the parietal cells pumping at the same time you're still eating this continually filling up your stomach and diluting your gastric acid even more as your acid production can't keep up. So think now, your stomach is full OK. Your parietal cells at the top, that shower head, is raining down acid but now it is just in top of the food, we'll call it a pile of food. All that acid is now sitting on top, guess where? Right near your esophageal sphincter and it refluxes into your esophagus and walla you've got acid reflux caused by too little acid.
I personally had acid reflux for some time before my AIG progressed to a point where I no longer have oxyntic mucosa or stomach acid so now my acid reflux is cured! 😂
If you've taken Betaine HCL (a synthetic plant based acid), which I do, you always make sure you take it about 10 minutes before each meal otherwise it too will reflux.
OK that's the short laymen's version of the story.
AIG is known to have a hereditary component. If Scandinavian descent is one of the noted risk factors. I believe that's why this is more prevalent in Northern European countries. I don't think it requires both parents to pass this along. I can trace mine back along my paternal line, all male.
That does not mean you absolutely have to have inherited it. The best thing is to explore your family history as best you can.
They do not know yet what gene causes this so anyone that says it's recessive or otherwise most likely are misspoken. Or if they are not I would love to see the data. I know I've certainly looked.
Yes, there are some good papers that I've read that she's put/posted on her LinkedIn page. Unfortunately I'm unable to use Facebook so I've no access to her Facebook group. I've heard of lot of good things about that though.
These links you included are good for you to review.
Pat is the one who told me that both parents would have to pass the recessive gene to kids and cited those papers. I pray to God I do not give this to mine
I will look at this. I am not aware they've found this gene nor do I think that is a true statement (that does not mean I could not be wrong of course). But if it was true then in my case it would be very low probability that I would have a clear unbroken trace back for four generations as I do.
Canadian, Here is what I have. there has not been a lot of genetic research on AIG after around 2007 time frame. At least not a lot of published data. Although it's clear it is genetic and it is hereditary there has not been found a direct chromosome or Gene Loci for AIG.
Here is a report from 2007. This study although provides some promise it namely says more research is necessary.
"Two genetic loci independently confer susceptibility to autoimmune gastritis"
Here is a more recent 2023 paper. They are getting closer but still not definitive.
Update in Molecular Aspects and Diagnosis of Autoimmune Gastritis
"Autoimmune gastritis is a complex autoimmune disease characterized by the destruction of gastric parietal cells and the development of atrophic gastritis. Recent investigations have established a correlation between genetic predisposition, which augments susceptibility to this condition, and the potential implications of epigenetic modifications, lymphocytes, cytokines, oxidative stress, infectious agents, proteins, and microRNAs in its pathophysiological processes. Subsequent studies are imperative to unravel the mechanisms underlying the onset, perpetuation, and progression of inflammation and neoplasia in patients with autoimmune gastritis."
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