hi there -
I just got diagnosed with pernicious anemia, autoimmune gastritis, and Barrett’s esophagus 3 months ago. My gastrin in sept was 200, in Dec it was 1000, and now in March it is 2500. It’s escalated so quickly and my doctor just ordered a scan for neuroendocrine tumors. I’m freaking out — I’m a mom of two small kids. Has anyone seen those levels with anything other than NETs?
Hi Lhood08,
Hypergastrinemia is common at end stage Autoimmune Gastritis (AIG) or PA. The reason for this as Gastrin is the hormone that is secreted by the G-cells in the antrum, lower part of your stomach that signals the parietal cells located in the gastric upper body to pump gastric acid. Then once your stomach reaches a highly acidic state the G-cells will turn-off and stop producing Gastrin. This serves as your body's feedback loop to regulate the acidity (pH) of your stomach. Your parietal cells are mostly gone and my guess is you have little to no gastric acid a condition called hypo (low) or achlorhydria (No). This condition causes high levels of Gastrin in your blood so that's what your test results are showing. High Gastrin then is continuously exciting the ECL cells in your stomach, I mean these ECL cells are thinking geez give me a break from this Gastrin!! 😢
So they develop Neuroendocrine Hyperplasia, that pre Neuroendocrine Tumor (NET). NETs are very slow growing and usually benign although they can become cancerous, on rare occasions, so it's good your doctor is looking after you there. You should also have had a gastroscopy/endoscopy to perform a gastric mapping IAW modified Sydney Protocol. This will determine how often you should be screened for gastric cancer. Not to fear but rather be informed. Once you are on a surveillance program if a cancer pops up they will excise it endoscopically at a very early stage 0 and each instance is considered cured. There is just no way to get completely rid of the underlying conditions where your AIG/PA is destroying your perietal cells and replacing them with Intestinal Metaplasia (these are cells that look like they belong in the intestine not the stomach. I call them imposter cells.
I've lived with this since 2020 when they found my gastric cancer and excised it through endoscopy. So I have a cancer screening endoscopy every nine months now. My serum Gastrin is always above 1000 and I do have Neuroendocrine Hyperplasia, the precursor to NET, due to that. So they keep a close eye on this for me.
Another cause of high serum Gastrin is overuse of proton pump Inhibitor (PPI) such as Omeprazole or Lansoprazole. If you are on one of these then you may want to question your doctor as your PA may not be so advanced and your low acid is caused by PPI.
Hope this helps some. Rexz
I am so thankful for your reply. P
I don’t take a PPI (I get bad side effects with them) so it’s probably the autoimmune gastritis as you’ve suggested.
The term “end stage” AIG sounds so terrifying. Is it inevitable that these tumors will grow/cancer will happen? This is all out of nowhere for me. I have struggled on an off with h pylori infections, but this time they did my endoscopy and my stomach is off the rails compared to previous testing. The doctor didn’t seem superrrr concerned about the way my stomach looked at first, but I have pain that only keeps increasing so I’m getting more and more nervous, especially as gastrin increases. What’s the life expectancy for all of this? I can’t help but look at my kids and start sobbing all the time.
Oh I remember all those feelings. It can be traumatic at first as it's all new. Life expectancy is perfectly normal so long as we manage this. Neuroendocrine hyperplasia rarely progression to NET and those that do rarely progress to cancer (i.e. they're mostly benign). That does not mean they should not be watched. The intestinal metaplasia they've got to keep a close eye on also. "End stage" means most or all of the oxyntic mucosa in the gastric upper Body and Fundus is gone. That's where the parietal cells are located. In my case my biopsy pathology says "no oxyntic mucosa" so I have no more.
See this...
I'm now training for my third attempt at hiking the Rim-to-Rim Grand Canyon this October. It's a one day 23 mile grueling hike. Si just be aware you'll have to manage things. B12 is just part of it. The other is watch your iron Ferritin levels. See my post in Iron Deficiency Without Anemia (IDWA)
And if you are to a point where you are feeling abnormally full just after a meal and are vomiting you may want to consider taking a synthetic acid capsule like Betaine HCL and some digestive enzymes.
Plus there are so many wonderful people in this forum who will support you and they are all very informative. We even have the Great Library of Alexandria in Sleepybunny
Rexz
I look forward to reading through all of this. I love to hear that you’re active and able to do crazy athletic things. Praise God!
I feel so confused as to why I have Barrett’s esophagus. They act as though that’s from an excess of acid in my stomach and my GI’s PA keeps pushing a PPI on me, but why would I need that if I have no stomach acid??🥴 It sounds like Barrett’s and AIG don’t really go together. Have you heard of anyone in that same situation?
Sooo Barrett's esophagus is caused by GERD or acid reflux. Acid reflux occurs both with too much acid and too little acid. In my way to zero stomach acid achlorhydria I also had pretty bad acid reflux. You should try and have your fasting gastric pH tested. Many GI doctors don't do that but if you go to university they can and do. I had mine tested at UC in California during my endoscopy. It's just an add on to the existing procedure where they slurp some gastric juice out at the beginning of the procedure and test the pH. Normal fasting pH should be around 2 to 3 or highly acidic. Mine was 6 or mostly no acid. Inquire with your GI doc about having that done at your next endoscopy opportunity.
Rexz
Hi Lhood08, I also have the same issues. As Rexz refers to I had the Sydney Protocol for gastric mapping which showed extensive Intestinal Metaplasia and Neuroendocrine hyperplasia. The gastro cosultant did not test for Gastrin levels but I assume it will be high.In the UK Nice guidelines for the above is to screen ever 3 years however I don't want to wait so long between check ups so I will be going privately ( again) and yearly for peace of mind or earlier if my symptoms change. Your GP is being very proactive which is good news.
It is a worry to have this diagnosis,I feel the same and try to reassure myself in knowing that there is screening for and as Rexz says to 'inform not to fear'.Sending very best wishes.
Thanks for your reply. I’m so scared! As I replied above, I’ve struggled with stomach issues for a very long time, but these new diagnoses are out of nowhere and I’m struggling to see how to get through it with my sweet little kids at home. Do you struggle with your symptoms? My stomach hurts so bad, but I don’t know if it’s a tumor or the AIG or the Barrett’s. Doctor didn’t seem to know either and just recommended an elimination diet.
I do love my high Gastrin clubies!!! 😂
We love you too Rexz
I have a follow up question - all of this has been from my Gastroenterologist, who seems to be very good/is highly recommended. But he doesn’t necessarily specialize in NETs. Have you sought out a particular specialist or do y’all just go to your GI doctor?
LHoid08Personally my team of doctors are GI doctor, Oncologist, Gastric Surgeon. I also consult with US National experts at UCSD and NIH. Not to mention the 100's and 100's of research papers I've reviewed. Last year I mentored two Med students. That was very rewarding.
If you need info to present or prepare for a doctor visit I/we can help. But you should then consult with your doctor.
Rexz
Hi Lhood08, I believe there is a NETS specialist at one of the London hospitals , don't know which but another
forum member is a patient there. I've searched but can't
find who it was. Are you in the UK? Regarding stomach
pain I have taken advice from other members
Wedgewood adviced me to eat proper porridge not the
quick oats and that goes down well with manuka honey
she also reccomended Symprove which is a probiotic
taken daily . I have stopped eating anything with gluten as
well. I don't have alcohol haven't done for a long time as I
would have a reaction. I can't skip meals and try to eat lots
of veg and fruit, nothing spicy or fried . Also try eating
home made soups and slow cooked meals which I find
easier on the stomach. My pain and discomfort is much
better but some days still there, always if I feel stresssed
which is difficult to avoid. It is different for everyone though so it's finding your triggers. Take care
I actually live in Florida in the US. 🫠
I totally agree with the stress thing - it’s hard to tell right now what is coming from my actual disease and what is coming from stress! It definitely makes things worse. Thanks for those recommendations ❤️❤️
Chronic stress causes chronic inflammation both of which are triggers for autoimmune disease. To try and tame your immune system as best you can. I have severely reduced stress I work way less, I tell my family and biz partner "I don't do urgent!" Etc.I meditate each morning, something I'd never done in my life but now I'm addicted. AND I've eliminated the triple three most inflammatory foods from my diet. Gluten, dairy, and sugar.
I think I'm making progress. Even if it's in my own mind! 🤯😂
Are very high levels of b12 a concern?
high level B12 984ng/L
high levels 
