I've been diagnosed with autoimmune gastritis and Helicobacter pylori infection few months ago after endoscopy and blood test.
The results:
Intrinsic factor antibodies - positive
Parietal cells antibodies - positive
B12 - low levels ( 49 )
Iron and Folic acid lewels are in norms.
We started with H. Pylori treatment and it was successfull ( after the second course ).
Now I'ts time to start the autoimmune gastritis treatment. My gastro said that small doses of cortisol can stop the autoimmune reaction ( he is a professor and has a lot of experience with PA and autoimmune gastritis, so I tend to believe ). He send me to hematologist first to start B12 therapy. After that he is planing to prescribe Cortisol.
Although I have no B12 deficiency symptoms ( just a litle weakness ) I'll make the 2 months B12 therapy, but I'm afraid to start the corticosteroids.
I'm not sure what's the worst that could happens if I refuse this treatment since I feel fine. My only symptom is red tongue. That's why I went to doctor 7 months ago.
I'm sure that after the B12 course I'll feel even better, because I've read a lot about it in this community.
Has anyone has tried corticosteroids treatment? Do you think that I can wait few months or even year before I start. I'm told to make control blood tests after the B12 treatment, that include IFA and PC antibodies. There is a small chance for negative resulta after the H.Pylory is gone, but it takes time.
I'm 27 years old, living in Bulgaria.
I have full access to my tests results.
Thanks, I'll be happy to exchage experience with you. This community is very helpfull.
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veselin_vachev
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Hi veselin vachev. I'm new here so can't really offer any 'solid' evidenced based answers to your question.
From my own Personnal perspective, I have gastric atrophy and am awaiting a further visit to a different gastrologist, the first not really knowing much about PA or autoimmune disease (unbelievable).
If your gastrologist is experienced, knowledgeable and you trust him, I'm just wondering why you are reluctant to follow his advice. Perhaps it would help you make up your mind in you made a list of the reasons you're concerned, together with the pros and cons of taking the cortisol, which you could then discuss further with him. It might also be worth asking how long you would be expected to take the cortisol for, so that you can make an informed decision about the way forward.
I know you say that you're feeling fairly well, but maybe stopping the autoimmune reaction before it has the potential to do any further damage (if such a thing is possible) might be a good thing (my experience of the gastritis is that it busily starts doing its damage, sometimes without you knowing!).
In my case, I think that if a gastrologist had treated me appropriately in the first place, I might be in a better position than I am now.
Having said all this, I must stress that this is my personal opinion only, based on my experience of having gastritis (which may or may not be autoimmune in origin), not something that I can back up with medical knowledge or research.
Sorry, but I'm too new and lacking in knowledge to comment on your blood results results etc. but there are others here who have excellent knowledge and may post further replies.
I wish you the best of luck with whatever you decide to do.
Thanks for your answer. I know that it's really hard to find a good gastroenterologist with solid experience. I've visited couple of different doctors and I can feel the difference.
My main concern is that the autoimmune reaction is a symptom, and I don't want to treat the symptoms (especially with so heavy drugs). On the other hand this might be the only way to prevent the full atrophy of my stomach.
This is the only thing I wasn't able to ask on my last visit - do I have time to experiment with some alternative methods or the best thing is to start with corticosteroids right after the B12 course (it is 10 weeks with 1 jab per week).
Hi Veselin. Yes, it's a bit of a tease, isn't it. Know what you mean about not wanting to take powerful drugs!
Thinking about the autoimmune reaction, I would view this as a process taking place within the body that is producing symptoms, rather than a symptom in it own right (if you know what I mean). But I could be wrong. Worth exploring with your doctor.
I've no idea whether there are alternative methods to deal with this but I suspect not. Again, something for the doctor.
All I know is that having gastric atrophy has really screwed up my whole system!
Hope you manage to find a way through the this that returns you to better / full health. Would be interested to hear how you get on.
- I did the B12 therapy - it was the best choice ever. It literally brought me back to life. It's been more than year and a half since I started feeling weakness again. Now I'm no B12 therapy again (my levels are still low).
- about the corticosteroids - haven't made the therapy. A year later the same doctor said: "I'm glad that you've skipped the corticosteroids therapy. That's very heavy drugs".
I still have IFA though. My latest results are the same:
Intrinsic factor antibodies - positive
Parietal cells antibodies - positive
Unfortunately there's still no alternative to corticosteroids.
Hi veselon_vachev. Good to hear your update. I'm pleased that your initial course of B12 therapy brought about good results but am really confused as to why you are no longer having B12 injections?
Your positive IF test indicates that you have Pernicious Anaemia and therefore B12 injections should be continued...for life!
Falling B12 levels and the return of symptoms (weakness and perhaps others) is a consequence of lack of treatment (or under-treatment, if being treated - though it sounds as if you're not having any treatment at all - disturbing, to say the least).
Think I'd ask your doctor to explain why they have withdrawn B12 injections when you clearly have Pernicious Anamiea and therefore require life-long treatment (in the UK, with B12 injections).
About the steroids...unless you have another underlying inflammatory condition, these are not usually required for the treatment of B12 deficiency or pernicious anaemia.
Good luck...hope your doctor reinstates your B12 injections PDQ.
P.s. the post you've replied to is over two years old and will not be seen by anyone else in the forum (people rarely retunr old posts). So...always best to put up a new post if you want input from the whole forum.
Hi Foggyme, I was looking back at these posts. Did you find a good gastroenterologist? I’m looking for one that actually knows about Atrophic Gastritis and may be willing to experiment with treatment. Any recommendations welcome.
Hi natcap1. Did I find a good gastroenteritis who understands Atrophic Gastritis- unfortunately no. They seem to be a rare breed!
Two suggestions:
Put up a new post, including the county in which you live, and ask if any forum members can make a recommendation. Or...
If you are a member of the Pernicious Anaemia Society, contact their helpline and ask if they can make a recommendation (understand that there is someone in the Liverpool area but sorry, can't remember his name) 🤔🤨.
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