Just diagnosed with autoimmune atroph... - Pernicious Anaemi...

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Just diagnosed with autoimmune atrophic gastritis with intestinal metaplasia

ReallyWondering profile image
21 Replies

I assume this is the root cause of my pernicious anemia? I have an appointment this week to discuss with GI, but want to go into the appointment educated. Does anyone else have this? Any treatment for this? I’m already on EOD (for last two weeks) B12 shots and multivitamins. Thanks in advance for your help.

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ReallyWondering profile image
ReallyWondering
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21 Replies
Jason_h123 profile image
Jason_h123

hi there,

I had this identified after my gastroscopy.

I’m no expert but I wouldn’t say it was a cause of your PA, more than likely an effect imho.

Orchard33 profile image
Orchard33

I am neither medical nor scientific but my understanding is that your stomach conditions are a cause of your B12D/PA. Do go onto the PAS website or phone the help line before you see your medics. And join the PAS.

Clare_oxo profile image
Clare_oxo

good morning. I’ve had atrophic gastritis and PA for some years now and have B12 injections monthly. I have an endoscopy test every three years which is the protocol here in Spain. My last test resulted in a diagnosis of intestinal metaplasia. I have not been given any treatment changes but have been told I will probably have more frequent endoscopy tests to monitor the situation. Hope this helps. I would be interested to hear what your specialist says Sorry can’t be of any further help.

ReallyWondering profile image
ReallyWondering in reply to Clare_oxo

I also have intestinal metaplasia. Apparently I’ve had this for some time.

yorkshiregirl4 profile image
yorkshiregirl4

I have recently been diagnosed with atrophic gastritis, following an endoscopy, after a confirmation of PA back in February 2023. There is a three yearly repeat recommendation for an endoscopy here in the UK, as I understand it, in order to monitor this condition. I equally understand that this atrophic gastritis is the cause of B12D and PA. I have found my overall symptoms have improved massively by increasing B12 injections to daily, from a very low level of health. Good luck in your recovery.

ReallyWondering profile image
ReallyWondering in reply to yorkshiregirl4

Thank you. How long have you been injecting daily?

yorkshiregirl4 profile image
yorkshiregirl4 in reply to ReallyWondering

I started injecting in July 2023 but have only been injecting daily for about a month. I was surprised at the negative impact any form of stress had on my health whilst SI every few days and that was the reason I went to daily SI.

Getting the diagnosis of atrophic gastritis has at least explained all my gut problems and having regular monitoring is really reassuring. I am going to try reintroducing foods, one at a time, to see if I can tolerate them after I thought I had allergies/sensitivities to various foods I have been excluding for years.

I think most people feel reassured to be told a diagnosis rather than not knowing. Best wishes.

ReallyWondering profile image
ReallyWondering in reply to yorkshiregirl4

I totally agree. Glad to finally have an answer. I’ve been to so many doctors over the last few years and none caught this until September. So annoying. I never heard of an B12 deficiency prior. Even the doctor who ran the B12 test didn’t mention anything about gastritis. I had to request an endoscopy myself. I was told some years ago I had acid reflux, so I assumed that was the issue. I had daily heartburn for months. Still get it at least once a week. Seems better since injections. Have you had issues with heartburn? When I got my endoscopy, the doctor said I could eat whatever I want, let my body tell me if it’s an issue. I had previously been told to cut out all acidic and spicy foods and drinks. Cut back on alcohol too. But still had the heartburn.

yorkshiregirl4 profile image
yorkshiregirl4 in reply to ReallyWondering

I occasionally have heartburn but clearly not as often as you do. It is so clear reading the sound, helpful advice on this forum that we have to take responsibility and control of our own health with B12D and PA. There appear to be so few doctors who have a clue about it.

There is also helpful information online with respect to foods and diet but it will all depend upon your personal response to any and every food. You could simplify your diet and gradually re-introduce one food at a time to see how it affects you. Maybe look at the fodmap book? I have just noticed an intestinal metaplasia diet online so perhaps worth an investigation for you.

ReallyWondering profile image
ReallyWondering

thanks. I will look for that.

Theoldgit profile image
Theoldgit

AIG is caused by antibodies which your body makes which destroy the parietal cells in the stomach. It is an autoimmune disease, in other words your body is destroying the cells. These cells are responsible for making Intrinsic Factor, which (eventually, after a tortuous route through the gut) combines with VitB12 to be absorbed by the liver and then stored. The reason why injections (of Holotranscobalamin - VitB12 in the correct form) works is that it goes straight into the blood stream, obviously, and then to the liver, bypassing the gut completely. If you aren't making enough, or any, Intrinsic Factor, you won't be able to make VitB12 in the correct form for it to then be modified and absorbed. So then you have the same symptoms as Pernicious Anaemia, but not necessarily PA.

True PA happens when the Intrinsic Factor which has already been made by healthy parietal cells is then attacked and destroyed, also by antibodies, called Intrinsic Factor antibodies. More of your immune system attacking your body! AIG is often a precursor to PA though.

But, just because you might test positive for AIG you don't necessarily have PA, because some people, for a reason not really understood, have parietal cell antibodies but no problem with anaemia.

So your answer is yes, it could be. Have you had an Intrinsic Factor antibody test?

Whoever designed this lot was incompetent!! :-)

ReallyWondering profile image
ReallyWondering in reply to Theoldgit

I did have an IFA test and it was positive.

Theoldgit profile image
Theoldgit in reply to ReallyWondering

That's why you have PA! Looks like your immune system is rebelling. Any family history?

ReallyWondering profile image
ReallyWondering in reply to Theoldgit

Not that I know of. I also have hashimotos, so a lot of autoimmune stuff going on.

IsabelleFR profile image
IsabelleFR

Hello ReallyWondering,

I too was diagnosed with autoimmune atrophic gastritis in 2010, which is also known as "Biermer's disease" in France. During one of my routine gastroscopies in 2022, they discovered intestinal metaplasia. From what I understand, as explained by my doctors, this autoimmune condition has gradually led to low B12 levels and pernicious anemia over the years. We need lifelong B12 injections as, unfortunately, this condition cannot be cured at present.

I initially had concerns about the metaplasia, considering it a pre-cancerous condition. However, I don't dwell on it too much now, though I am more careful about my diet. I've cut out alcohol, sweet beverages, and coffee, and I avoid acidic foods like yogurt or milk. Instead, I focus more on vegetables and fruits.

In France, where I'm based, I now have gastroscopies at the hospital every three years.

If you or anyone else diagnosed with autoimmune atrophic gastritis (especially with metaplasia) needs to chat in private, I am here for you guys.

Take care,

Isabelle

ReallyWondering profile image
ReallyWondering

Does anyone have heartburn issues, as well? I assume it’s related. It seems to come and go for me and happens mostly on an empty stomach right before lunch. But when I get it, it’s bad!

Orchard33 profile image
Orchard33

Wedgewood had used Symprove and posted about it on this site. I'm road-testing it now for all my digestive ailments, including reflux and IBS. I'm on my second week and my whole digestive system is already feeling so much better. So, looking good.

ReallyWondering profile image
ReallyWondering in reply to Orchard33

For heartburn?

Orchard33 profile image
Orchard33 in reply to ReallyWondering

Including heartburn, plus other symptoms of digestive derangement.

ReallyWondering profile image
ReallyWondering in reply to Orchard33

Which flavor did you try? It’s very expensive!

Orchard33 profile image
Orchard33

I have the flavourless one. And it is expensive. I began with a month's supply but intend to subscribe and trial it for longer.

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