Flare/severe worsening of gastritis

[pj16]

Hi everyone. I have been troubled with endoscopy diagnosed gastritis for over 5 years. My symptoms of nausea and stomach pain started to return 4-6 weeks ago. I woke up yesterday morning in a great deal of epigastric pain. As the day progressed I couldn’t stand upright without vomiting. I have felt extremely unwell. I haven’t been able to eat or drink since Thursday night although today I’m able to have some crushed ice. I’ve barely been off the sofa for about 36 hours. Anyway, as I see it I only have two options. Either go back on Omeprazole to try to heal my stomach or find a gastroenterologist who will try harder to find the cause of my stomach damage. I’m not sure if I’m even asking a question but does anyone have any advice? Thanks.

[Gambit62 Administrator]

Your symptoms are severe and potentially life threatening. You can only go so long without drinking and eating. Please consult a medical professional.

If the omeprazole resolves the issues and allows you to eat and drink then take it. You don't have just two options - you can take the omeprazole AND look for another gastro. You may also want to consult with the dispensing chemist if you have been on omeprazole for a long time - Ideally it should only be prescribed for short courses.

[pj16 in reply to Gambit62]

Hi Gambit62. Thanks for replying. I have managed to get an appointment to see my GP tomorrow. My symptoms are still bad enough to prevent me from doing most things. I’m able to drink a bit now thank goodness as I know I was definitely dehydrated. You’re absolutely right that I can do both. I genuinely didn’t think of that. I’m just so sick and tired of being fobbed off or told things which are questionable. I’m almost 100% convinced that all of my symptoms are due to autoimmunity but keep being told things like ‘you don’t have intrinsic factor antibodies which rules out pernicious anemia’. I might not have PA but I still know that statement is wrong. Apologies as I didn’t intend to rant 😬. Do you know if there is a reliable test for hypochlorhydria? My layperson’s brain tells me that surely it can be detected at endoscopy? Do you know if it’s worth me paying for a Gastrin test? Thanks ☺️ again for responding.

[Sleepybunny in reply to pj16]

Hi,

I'm sorry to read that you're struggling with pain.

If it's an emergency, ring 999.

If you think you need help now but it's not an emergency, ring NHS 111

111.nhs.uk/

In past I have found it useful for less urgent problems to ask local pharmacist for advice. They were very helpful.

- but keep being told things like ‘you don’t have intrinsic factor antibodies which rules out pernicious anemia’ -

A negative result in IFA (Intrinsic Factor Antibody) test does not rule out PA (Pernicious Anaemia)

Thread about tests for PA and B12 deficiency

(mentions other tests that can help to diagnose PA)

healthunlocked.com/pasoc/po...

If you're a PAS member you might be able to arrange for your GP to talk to PAS.

PAS membership is separate to membership of this forum.

You do not need a PA diagnosis to join PAS.

pernicious-anaemia-society....

PAS contact details

pernicious-anaemia-society....

I wondered if there was a PAS support group covering your area. They can be good places to swap information.

pernicious-anaemia-society....

Other help for doctors

1) Maybe you could show your doctors this page from PAS which mentions that about half of people with PA get a negative result in IFA test.

pernicious-anaemia-society....

Your GP could join PAS as a healthcare affiliate member at no charge.

PAS have useful leaflets. Some PAS members print them out for their GP.

healthunlocked.com/pasoc/po...

2) Maybe GP would like to join Club B12.

This is a group of doctors and researchers across world who are looking into B12.

They have regular zoom meetings and have hosted conferences.

club-12.org/

3) If you search for "B12 deficiency Wolffenbuttel" that should show several articles written by B. Wolffenbuttel which are worth passing to GP including one for Mayo Clinic in US and one for BMJ (British Medical Journal).

He wrote this one for PAS.

pernicious-anaemia-society....

In my personal opinion he's one of the few doctors who understands B12 deficiency.

4) B12d.org organises interesting online talks.

b12d.org/event/

The January 2025 talk is by a retired physician.

I hope you get the help you need.

[pj16 in reply to Sleepybunny]

Hi Sleepybunny. Thanks for taking the time to respond and providing so much useful information. I’ll definitely consider joining the PAS. 😊

[Gambit62 Administrator in reply to pj16]

low stomach acidity is easy to test for. This article discusses a simple home test as well tests that medical practitioners can do to confirm low stomach acidity.

my.clevelandclinic.org/heal...

The baking soda test

The theory behind this at-home is that baking soda combined with stomach acid produces carbon dioxide (C02), which will cause you to burp. For the test, you’ll drink half a glass (4 ounces) of cold water combined with a quarter teaspoon of baking soda, on an empty stomach. Then time how long it takes you to burp. If it takes longer than three to five minutes, the theory goes, you don’t have enough stomach acid.

As sleepybunny says the IFAB antibody test is useful for confirming PA as a cause of B12 deficiency, but it is a long way from ruling out PA if the result comes back negative because it isn't very sensitive and gives false negative between 40% and 60% of the time depending on the exact test methodology.

This article - about 10 years old now - discusses the various tests associated with cobalamin (B12) and folate deficiency as well as protocols for diagnosing and treatment and gives a good breakdown of the tests, their advantages and limitations (though it was before the gastrin test became available).

onlinelibrary.wiley.com/doi....

The endoscopy will have looked at the lining of the stomach to see if there is damage - and obviously found that it was enflamed - hence your diagnosis of gastritis - but it doesn't do anything that would enable to to tell what the pH of any gastric juices might be.

[pj16 in reply to Gambit62]

I actually did try the baking soda test over a year ago not long before my second endoscopy. I waited and waited and never burped at all. It’s so frustrating (and worrying) that a lot of medical professionals don’t know basic things. I’ll have a read of that article. Thank you 🙏

[Hockey_player]

I was about to say "Try both". It looks like Gambit62 agrees with me. Very best wishes! Omeprazole supposedly is supposed to only be prescribed for a short course. I asked the gastroenterologist who did my gastroscopy if it would not be better to try to fix things by being careful with what I eat. He said, nah, just take the pills and eat what you want. I personally think it is better to try to get off it, but sometimes you need it.

[pj16 in reply to Hockey_player]

Hi Hockey_player. Thanks for that. My response to you is basically the same as to Gambit62 😊. I know my stomach lining has previously had a lot of damage so I’m guessing it’s back with a vengeance.

[Hil101]

I’m sorry you are having such an acute attack, that’s really painful. I have gastritis caused by quite bad erosion of my stomach due to autoimmune gastritis (biopsy diagnosed). I don’t have the antibodies either. I also have coeliac disease. I self-inject B12. I find that if I eat or drink acidic things I get problems and I occasionally have a flare but not as bad as you are describing. Acidic wine or lemon juice etc irritate and I manage it by diet. Well-cooked food is best. Long-term omeprazole causes other problems due to malabsorption but perhaps short-term then wean off would help you now. I use Just Natural slippery elm (bark powder used as an ancient remedy): I heaped teaspoon whisked into a cup of boiling water, allowed to become slimy then sipped during the day and night. This helps a lot. I hope you are feeling much better soon

[pj16 in reply to Hil101]

Thanks for that Hil101. My gastritis is erosive too. The last gastroenterologist I saw wasn’t able to tell me what’s causing it. I don’t know what he asked the lab to test for. He insisted that it wasn’t autoimmune gastritis but I think that’s the most likely reason. I’ve considered Slippery Elm but I had to give up because with everything these days there’s too much choice 🫤. My decision making skills have abandoned me these days. 😊