I have pernicious anaemia which I manage with monthly B12 injections.
I have been diagnosed with intestinal metaplasia and autoimmune atrophic gastritis . My concern is that my gastrin levels are elevated and increasing ,
1.7k 2 years ago and now 2.5k .
I have gastroscopies every 2 years and dota pet scan for Nets otherwise treatment
seems to be a wait and see approach.
I also have Hashimoto’s thyroiditis and type 2 diabetes, breast Ca.
I have 6 monthly blood tests including vitamins and minerals which only through these forums have I realised also need to be optimum as well as taking conventional medicine to feel well. My diet is low carb , low gluten , low alcohol and I excerise regularly ( love my electric bike)
My Gastro doesn’t like the high gastrin levels either as concerned my stomach acid is high but I thought this meant my stomach acid is low?
I am wondering how this will affect my ability to absorb my medications ie thyroxine and metformin.
I would welcome your thoughts especially if there is anything else I should be doing or how best to manage this .
Thanks for reading
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Knittingcat123
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But Autoimmune Atrophic Gastritis is another way of saying Pernicious Anaemia, which means that you have low or nostomach acid ( Hypochlorhydria/ Achlorhydria. The parietal cells which produce stomach acid and the intrinsic Factor in the stomach, are destroyed by the intrinsic Factor Antibodies.
You produce gastrin when your stomach acid is low . The gastrin is trying to encourage your stomach to make acid .
i know that some Pernicious Anaemia patients take Hydrochloric Acid with Pepsin capsules to improve their levels of stomach acid especially when eating proteins. .
It was my gastroenterologist who told me that PA patients have low or no stomach acid . so i cant understand why your gastroenterologist thinks you have too much . PA patients don’t have the wherewithal to produce enough Stomach acid ( lack of parietal cells)
If you didn’t have PA. , high gastrin levels would encourage your parietal cells to produce high levels of acid .which could be too high . and the treatment would be a proton pump inhibitor which annihilates stomach acid . So i really don’t understand the concern with you as a PA patient, having too high levels of stomach acid . But then i’m an ignorant layperson . …
I haven’t really helped you , sorry . I would want to know why you as a PA patient could produce too much stomach acid .Ask your Gastroenterologist to explain that to
you . I would be very interested to know that too . We need as much information about PA as possible , given the ignorance of the condition in the medical profession . Best wishes .
Thank you for taking time to reply to me.it has been most helpful. I may have mis understood my gastro . I know he doesn’t like the high gastrin levels so is sending me for another dota scan to exclude Nets but he did say he didn’t see any peptic ulcers which I thought would be caused by too much acid but I suppose could be the intestinal metaplasia. Just wondering if others had such high gastrin levels and how it was being treated. I was hoping that having optimised all my blood results eg iron,B12 etc that the gastrin to would improve. At least I am lucky atm my stomach symptoms are minimal 🙏
NETS are precancerous growths that may become cancerous - they are a known potential consequence of PA because of the high levels of gastrin that result from having low stomach acidity. I don't think they are related to ulcers - which I believe are now thought to be the result of bacterial infections rather than being caused by high acidity and high stress levels which was an old theory that was very hard to displace, and may still persist.Unfortunately treatment with B12 addresses the B12 deficiency caused by PA but doesn't impact on the high levels of gastrin that are the consequence of the low stomach acidity resulting from PA
yes. My levels were 1000 15 years ago and over 2000 now. My gastroenterologist didn’t know, but he said gastric is like a hormone level telling my stomach to make acid. Since I can’t make acid, he said it’s like a broken feedback loop! I’ve been trying to find someone else that has the save issue so I’d know if it’s a problem or not !
This may sound crazy but I had this happen to me too. However I had negative intrinsic factor. Was your negative? Have you ever been tested for celiac disease. People with pernicious anemia like us can suffer from malabsorption disorder. You said low gluten but not no gluten. Going completely gluten free was the only way I was able to solve this rising gastrin serum level issue. It may help. Consider discussing it with your doctor.
Thank you for your reply. My coeliac test was negative. I don’t believe I have been tested for intrinsic factor as diagnosed by gastroscopy. I am interested to know why this makes a difference?
Actually found out that 2 nieces also have PA so suspect some genetics at play. I agree I should go gluten-free so good to hear you had positive outcome .
Re malabsorption, Yes took a long time to work out why my ferritin was so low , ( also related to Hashimoto’s) so now I have iron infusions as needed. So glad for this forum 🙏
I'm in a gluten free support group. It did make a huge difference. I stopped feeling like crap all the time. The stomach bloating went away. My test was negative too for celiac but it still seems like I was some level of gluten sensitive. I lost about 40lbs since then whereas before I could barely lose any. Idk how many stone that is lol but it was a bit. It did help a lot of my flare ups and joint pain and stack pain. Even tho I'm not personally celiac disease. What I also found out for the PA is I was positive for a genetic mutation called MTHFR hilarious abbreviation for a terrible thing. I hope this helps
Unfortunately high Gastrin levels are a normal part of having Pernicious Anemia/Autoimmune Atrophic Gastritis. We all know that PA destroys the acid and Intrinsic Factor producing Parietal Cells. The Parietal Cells are located in the gastric Fundus and upper part of the body. There is this wonderful biological feedback loop that includes G-Cells which are located 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 advanced stages of PA is most Parietal Cells are destroyed/Gone and 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 most all of us with advanced PA have high serum Gastrin level. 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. The Correa Scale progression to cancer shows Intestinal Metaplasia => Dysplasia => Adenocarcinoma (I have had all three of these) thankfully my cancer was removed. then there is the Neuroendocrine Cell Hyperplasia (NEH) => Neuroendocrine Cell Tumor (NET usually benign) => Neuroendocrine Cell or G-Cell Carcinoma.
Not to alarm but rather inform. the increased risk of gastric cancer for people with PA is generally 3 to 7 times. Much is dependent on each individuals predisposition to cancer and the extent of GIM and NEH as in if these are in every region of the stomach as found through Sydney protocol biopsies and you have a family history of cancer especially gastric cancer then there would be a need to be screened through Gastroscopy periodically for cancer. The good thing is that these cancers normally form on the Mucosa and can be removed completely through Gastroscopy if found early enough, before they invade too deep into the stomach wall.
Again, as I always add...I am just a layperson. just another person who knew nothing of my own body before my PA diagnosis. I've been through a lot and have had to fight and educate my doctors on this disease. The fact that you are on this site means you are educating yourself that is a huge positive as educating yourself regarding this disease may just save your life as it did for me. The best thing for me has been to do my own research and take those medical studies, reports, trials etc. with you to your doctor. Engage them with the facts and also admit where the data is sketchy. Find that good doctor that can be your partner that is willing to learn. I know that is the hard part but if you encounter those that are arrogant then run from them as fast as you can as there are plenty of the good ones.
Thank you for your reply . You are absolutely right one does need to be proactive about one’s health and it has certainly helped me. Likewise important to have a Dr who you feel simpatico with. On the whole I think I am receiving good care as I am being regularly screened. I am a bit spooked as I have had breast Ca and my mother died of stomach Ca so I know I am at risk. That said I try to take a balanced approach to my health ie good diet & exercise, moderation etc .Always good to hear & learn from other peoples experiences 🙏
Hello... I found this post from you while looking up metaplasia on this forum. I have autoimmune a trophic gastritis... Not H pylori...and I was just diagnosed this last week with metaplasia. I'm beside myself as the doctor has not given me any instruction other than I must continue having an endoscopy every year (which I have been doing for the last 3 years) This latest has shown that my stomach has gotten worse and it's not metaplasia. I was wondering if you could tell me the 6-monthly lab tests you have done. I will ask my doctor to order these. I seem to never know when I'm going to have a stomach flare. I have not had alcohol in 3 years or red meat. For a time I was eating fermented foods and tried HCL. The fermented food seem to help and then suddenly I had a flare one day. The HCL only seemed to work if I had eaten a great deal of protein otherwise it was horrific. I do have PA caused by this and take 1,000 MCG sublingual daily. The injections made me desperately sick so could only do two and had to stop. I need insight you could give me would be greatly appreciated.
I am probably not the best person to ask as I have no experience of taking HCL and I do take B12 injections for PA.
My 6 monthly blood tests are in relation to my TY2 diabetes management and Hashimoto’s thyroiditis. The latter being autoimmune increases risk of other autoimmune conditions. It might be worth asking for your thyroid to be checked & should include T3 and T4 not just TSH. My bloods include full blood count , iron panel , vitamin D,folate, ferritin.
Part of the problem with PA is malabsorption so that might be helpful to have a base line at least.
Regarding intestinal metaplasia, I have yearly :
gastroscopy
blood tests for gastrin Level
Dota pet scan as required looking for NETS due to rising gastrin levels.
You may find more responses by asking a new question to the group.
Thank you so much for your quick response. I do have hypothyroidism, not hashimoto's. I will definitely ask the larger group about my current status. Knowing the list of tests you have regularly is helpful. I get most of them done every three months except gastrin which was taken only initially two years ago (which was off the charts) but have endoscopies yearly. Thanks again for your help, and take care of yourself.
They are very helpful. I have learned a lot from them especially about need for optimal vitamin levels etc in order for thyroxine meds to work effectively. Never thought I would take supplements as have a good diet but have to say has made a huge difference
I am still working on the gluten free so always a work in progress
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