It has been some time since I last wrote so I will refresh your memories a bit. In a nutshell, I was diagnosed with autoimmune atrophic gastritis two years ago which caused PA and b12 deficiency. I take 1000 mcg B12 cyanocobalamin once daily but sometimes twice if I'm feeling poorly at the end of the day (had two injections but became unbelievably sick and went to sublinguals). For a while - about 3 months or so - fermented foods were helping with stomach acid symptoms until they weren't helping and I had a very bad flare. Around this time I was scheduled for my yearly endoscopy - Jan 3, '23. While my first endoscopy in '21 showed incredible inflammation as well as my second one in '22, this last one crossed the line (see below). the doctor's nurse called me and said there is nothing they can do as I don't do well on NSAIDs or H2 Blockers and that since I was good about having yearly biopsies I was staying on top of it. I would like to know if any of you have suggestions for me or where in the US (I'm in Ohio) where I might consult with someone. My docs can't even give me a name of a specialist to see on the main campus of their hospital facility. AAG is VERY rare. Rexz, I know you have some knowledge on this subject - would love to hear from you and anyone else. My flares continue to get worse and now causes dizziness if I eat too large a portion of food. Another scary thing is my Dad had two kinds of stomach cancer - but survived it - and now I'm wondering if he had what I have and didn't know it. Thank you!
FINAL DIAGNOSIS
A. Stomach, antrum, biopsy
- Atrophic chronic inactive gastritis with intestinal metaplasia
- Negative for dysplasia
- Linear and nodular enterochromaffin-like cell hyperplasia (see comment)
- Negative for Helicobacter organisms by immunohistochemistry
B. Stomach, body greater curvature, biopsy
- Atrophic chronic focal active gastritis with intestinal and pseudopyloric metaplasia
- Negative for dysplasia
- Linear and nodular enterochromaffin-like cell hyperplasia (see comment)
- Negative for Helicobacter organisms by immunohistochemistry
C. Stomach, body lesser curvature, biopsy
- Atrophic chronic focal active gastritis with intestinal and pseudopyloric metaplasia, consistent with autoimmune etiology
- Negative for dysplasia
- Linear and nodular enterochromaffin-like cell hyperplasia (see comment)
- Negative for Helicobacter organisms by immunohistochemistry
D. Stomach, cardia and fundus, biopsy
- Atrophic chronic inactive gastritis with intestinal metaplasia
- Negative for dysplasia
- Linear and nodular enterochromaffin-like cell hyperplasia (see comment)
- Negative for Helicobacter organisms by immunohistochemistry Diagnosis Comment
The patient's history of autoimmune gastritis is noted. Immunohistochemical stain for chromogranin performed on blocks A1, B1, C1 and D2 confirms the presence of linear and nodular enterochromaffin-like cell hyperplasia. Immunohistochemistry for gastrin is utilized on the greater curvature body biopsy (block B1) to confirm antral origin of fragments lacking oxyntic glands (as opposed to pseudopyloric metaplasia in atrophic body-type mucosa). A gastrin immunohistochemical stain also performed on the body lesser curvature biopsy (block C1) is negative in some of the fragments, confirming the presence of oxyntic mucosal atrophy.
First of all , I’m really sorry that you feel so unwell . As you have PA , I really believe that you should be on B12 injections FOR LIFE not tablets I know that cynocobalamin is the usual type of b12 used for injections in the US , but you say that they made you unwell . Do try Hydroxocobalamin .injections . They may not be available in US . Here in U.K. , we obtain our B12 ampoules from German online pharmacies . . There is one that supply them world wide . Delivery is free of charge . Our usual brand called Panpharma is unobtainable at the moment . But another called Pascoe is .
The pharmacy in question is
www,apohealth.de
The site is obtainable in English . you can pay with Paypal or a card . Search for Pascoe B12 DEPOT . Depot means that the B12 is hydroxocobalamin, not Cynocobalamin . You can buy packets of 10 ampoules singly or packets of 10 x10
Having P.A. means you have low stomach acid ( Achlorhydria) because the parietal cells in the stomach are destroyed by intrinsic factor antibodies.. These cells produce stomach acid and The Intrinsic Factor .which is of paramount importtance in absorption of B12 This upsets your stomach flora , and that encourages bad bacteria to proliferate , causing stomach pain, bloating etc . I found that a very good probiotic helped this . Also natural probiotics like organic sauerkraut , kefir and kimchi . Low stomach acid makes absorption of other vitamins and minerals difficult , so a modest tablet is good to take . Folic acid ( known as folate in food ) plays an important role with B12 . It’s important to chew thoroughly and eat smaller meals more often .
I do hope that you get plenty of help from other members . I feel a bit helpless as I am in U.K. . Maybe someone in USA will be more helpful than me . Best wishes .
Hello Justme, My gosh, look what you've brought out in me, I've written a book! I think I broke the forum! 😂
Firstly, Regarding your stomach issues and processing or digestion of food. This is because your condition has reached an advanced stage. Most of your Parietal Cells have been destroyed and thus you most likely have reached a point of Achlorhydria (no stomach acid) or at least severe Hypochlorhydria (low acid). No stomach acid causes a whole cascade of digestion issued completely unrelated to B12. As my Mantra says regarding PA “IT AINT JUST B12!” and my other one is “the Pernicious in Pernicious Anemia, is alive and well!”
Proper stomach acid is powers your entire digestive process from sterilizing your food as you ingest not only food but also bacteria, breaking down your food in the stomach to, proper functioning/closing of the esophageal sphincter, opening of the Pyloric sphincter to allow food or now chyme to enter your small intestine, acid also, as it enters the small intestine excites cells that release a hormone called CCK which is a messenger to your gallbladder saying “hey buddy, time to contract” thus releasing bile into your small intestine. So without stomach acid your entire digestive engine comes to a screeching halt! That is what I suspect you are feeling now.
At some point I, like you, I started feeling very full after I ate especially meat protein. It felt like I just ate a huge meal when I would only eat something small. Then I would get nauseas and eventually after about 30 minutes I would vomit. This went on until I had withered away to nothing, I lost 90 pounds and most of my muscle mass was in bed for 16 hours a day and unable to walk. Then during my research I read about PA and achlorhydria I went and had my stomach acid PH measured during my next endoscopy and it measured at 6 or basically zero stomach acid. Now I take three things with each meal, two about 15 minutes before I eat and one after. These solved my digestion issues and now I’ve gained 40 pounds back and am doing well. See mygcchallenge.com/about
Here are those supplements that I highly recommend for you…they are over the counter, and you can order them from Amazon.
1) The first is Betaine HCL from Integrative Therapeutics is a synthetic plant based acid. Take one capsule before each meal.
Good question. I'm certainly no expert here but to clarify I would not suggest taking betaine HCL for Gastritis but rather only for low or no stomach acid. A subtle but very important difference. Low/no stomach acid is not caused by Gastritis but usually a result of specific destruction of the proton pumps in the parietal cells. That PC destruction is what is causing the low/no stomach acid and Autoimmune Metaplastic Atrophic Gastritis (AMAG) AKA PA. If you do not have AMAG but rather Chronic Atrophic Gastritis (CAG) then your Parietal Cells will be unaffected and still pumping acid. Under that circumstance taking a Betaine HCL supplement may be increasing your stomach acid levels too high and causing pain and acid reflux. CAG is usually caused by H-Pylori infection in the Antrum near the bottom of your stomach and is by far, 90plus percent, the cause of Gastritis. This type of Gastritis is curable after eradication of the H-Pylori bacteria. If you suspect you have low/no stomach acid you can try taking lower dose betaine capsules first and if no reaction build up to something comfortable. I am taking a fairly high dose of 1.3g as I've no acid.
The other issue could be the brand. As with other supplements some people have reactions to the binding agents and fillers? Not sure though.
Hi, I had cancer, Adenocarcinoma of the Gastric Fundus along with Hyperplasia. It was found just after my PA diagnosis during my first gastric cancer screening. This was excised and follow-up indicated that it had not spread and was cured. However, since I have the underlying condition of PA/AMAG and a family history of Gastric cancer I am consider very high risk for another instance so I now receive endoscopic cancer screening about every six to eight months.
I think my son has cancer because he can’t eat much and throw up just about everything and if he does eat he has diarrhea..He says it gerd and he will not tell his doctor
Secondly, with low/no stomach acid you most likely have SIBO (Small Intestinal Bacteria Overgrowth) as acid also helps maintain the environment for a healthy intestinal microbiome. You may want to have this checked. Talk to your GI doctor and they can order you a breath test to check for that. When it comes back positive for SIBO you’ll take antibiotics that kills all bacteria both good and bad. Then you will need to takes a pre-and probiotic daily to rebuild a healthy microbiome.
Regarding your biopsy results…
Intestinal Metaplasia is to be expected with those who have Pernicious Anemia (PA) or what is best referred to as AMAG or Autoimmune Metaplastic Atrophic Gastritis you can also find it referred to as AIG. Autoimmune Gastritis (AG), or Autoimmune Atrophic Gastritis (AAG). Here we’ll refer to this condition as PA/AMAG. However, PA is but a symptom of AMAG.
Intestinal Metaplasia is considered pre-cancerous lesion. Not to worry too much as it is common in people with PA/AMAG.
No Dysplasia is a good sign but remember any biopsy results are only from that one tissue sample.
With AMAG, as the oxyntic mucosa, namely the parietal cells, are being destroyed by your immune system your body is replacing those cells with cells that don't belong there. These, I call them imposter cells, are called Gastric Intestinal Metaplasia or GIM.
There are two types of GIM the first is GIM (Complete) which are cells that are similar to those in the small intestine and then there are the GIM (Incomplete) which look similar to those cells that belong in the large intestine. The GIM incomplete are the more aggressive and more likely to progress to cancer so it's important that the pathologist is instructed to classify your biopsy samples as complete or incomplete subtypes.
The European MAPSII guidelines recommends performing an endoscopy every three to five years to surveil patients with AMAG. If you have Extensive GIM and/or a family history of gastric cancer, in other words you are at higher risk, then these endoscopic surveillance intervals may be 1 year. Upper endoscopy, also known as esophagogastroduodenoscopy (EGD) in the U.S., or Gastroscopy in Europe is a procedure used to examine the lining of the esophagus, stomach, and upper part of the small intestine (duodenum).
There are no guidelines in the US for periodicity of endoscopic surveillance. Depending on your risk and family history you should at least have annual endoscopic surveillance. Since I have extensive GIM both complete and incomplete and have had one instance of hyperplasia and adenocarcinoma and family history of PA/gastric cancer I have my endoscopic surveillance very six months which includes and endoscopic ultrasound.
There is no real treatment or cure for AMAG, I have searched the universe and talked to many doctors. If you find anything, please share. So, for now just be aware and ensure that you are surveilled properly. You, understanding, your family history is so important, If I had to guess, your Dad’s two types of stomach cancer were adenocarcinoma and neuroendocrine Cell or G-Cell Carcinoma? I am the first in generations to survive this disease with history of PA and gastric cancer. If there is PA/AMAG and/or stomach cancer in your family history this may mean you are more prone or have a predisposition for GIM to progress to adenocarcinoma/stomach cancer. Family history is a serious clue to give to your doctor or General Practitioner (GP). The good thing is that early detection of gastric cancer is completely curable through a procedure called Endoscopic Mucosal Resection (EMR) and is painless. The bad thing is that the cure is for that instance of cancer only. If you are high risk, then it becomes a game of "whack-a-mole" as I call it. You just have to keep looking and when its devious little cancer head pops up you whack it. or excise it. so is the life of me 😂
In a normal person…gosh that sounds weird as if we are not normal?! But anyway, in a normal person Gastrin begins to be released by G-cells in the lower part of your stomach when you first think you are hungry and think about or smell a good meal. This starts the digestion process before you even take your first bite when your vagus nerve is stimulated. You begin to salivate and gastrin is produced to begin secreting stomach acid. Gastrin is a messenger to the Parietal Cell proton pumps to begin pumping acid. Gastrin also stimulates cells (enterochromaffin-like cells, ECL) to release histamine. Both histamine and gastrin increase stomach acid.
High Gastrin levels are a normal part of having Pernicious Anemia/Autoimmune Atrophic Gastritis. There is this wonderful biological feedback loop that includes G-Cells which are in the lower 1/3 of your stomach. Your stomach PH is neutrally around 6 or low acidity until you anticipate eating or actual eat something. Once food is received in the stomach these G-cells start releasing Gastrin into the bloodstream. This Gastrin then excites the Proton Pumps within the Parietal Cells to start producing Gastric Acid. The stomach becomes more acidic and when it reaches a PH of around 2.0 the acidity level effectively turns off the G-cells from producing Gastrin. The problem with people with hypochlorhydria (low acid) or achlorhydria (no acid) no acid is produced thus stomach never reaches high acidity or low PH and G-Cells do not stop producing Gastrin. In other words, the wonderful feedback loop that our bodies provide is broken and those G-Cells are never turned off and thus keep producing gastrin messaging the Parietal cells to keep pumping acid…just nobody is home to receive the message! This the high serum gastrin levels even after fasting. I have researched and asked many GI doctors in the U.S. and there is no known magic pill to turn off or suppress your G-cells from producing Gastrin. There is some thought that continuous high levels of Gastrin may be one of the causes of higher risk of stomach cancer in those with PA. As High levels of Gastrin may be linked to Neuroendocrine Cell Hyperplasia which can be a precursor to cancer although progression to cancer is rare. So, there are two types of imposter cells those with PA should be aware of they are Intestinal Metaplasia and Neuroendocrine Cell Hyperplasia.
That was awesome doc Rexz!!!! Lolol so glad Justme2021 asked about this. I don't understand my results from my endoscopy. All I know is my stomach burns so bad with decaf coffee. Some days I can drink it and some days I'm in so much burning pain it's unbearable. It lasts all day. I take 1 famotidine but it doesn't help much. Can I take those pills that you're talking about before and after a meal even if Im not as bad off? I do have PA.
Yes, you can take these they are perfectly safe and with PA/AMAG will most likely help. You may want to try a lower dose though to start. Maybe around 300mg then if you have no reaction you can add additional tablets until you do have a reaction. Reactions usually are in the form of stomach pain or acid reflux. Here is a site explaining how to find your dose.
In addition to Betain HCL, remember to not only take probiotic but to also feed those little buggers to make them happy and thrive...they are living you know. Feed them with fermented foods like Kimchi (YUK I can't do that one!), sauerkraut, Japanese plum balls, etc. That way you are not only replenishing them but nourishing them also.
I have read this; will copy it; and will definitely have questions for you. It may take a bit to collect my thoughts, but I will get back to you soon. You are a gem...
hi I know nothing about your condition neither can I help I'm in the UK as a suggestion have you ever tried Manuka honey it's very soothing on the gut it's well known for its healing properties another suggestion is consult a homeopathic practitioner
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Gut Instinct
High serum gastrin levels
