I was diagnosed with PA early 2023 after years of feeling hopeless and helpless, ( raised MCV , low 'normal' serum B12, positive Parietal Cell antibodies, no intrinsic factor antibodies) and I am SI B12 regularly, to which I am responding well, and finally starting to feel like I am coming out the other side. Last week I had a gastroscopy and the gastoenterologist has just sent me a letter saying that although there was evidence of gastritis, the biopsies showed no evidence of autoimmune or atrophic gastritis. She would like to see me to discuss this in detail.
Have I missed something? What should I be asking when I see her? I am so confused!!
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DiSews
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Thankyou charks. I didn't think that was even possible with the antibodies still swimming around, at least not to that extent! They would have to put me in a straight jacket to stop me taking B12- it makes life livable! 😊
The most important aspect is your response to regular SI B12. Unfortunately, in medicine there is lots of fancy jargon. So, gastritis means the stomach lining is inflamed. So, it is rather like saying, Yes, it is an egg. Then the gastroenterologist has said about it not looking like the autoimmune type or atrophic type . This is on a par with saying, It is not a chicken’s or duck’s egg. (Although, it is still an egg).
In the consumable egg world, there are lots of types of eggs which are graded, sized and weighted which I have not got a clue about but I know how to cook them. Plus, I do not need to know.
So, your appointment is concerned with discussing your individual symptoms (such as heartburn), your appetite and satiety (feeling of fullness when eating). Management for those symptoms.
You can gauge the person as to whether or not you can disclose about SI B12. You will know how receptive a person is to it whilst talking with them about the other things. So, wait until the appointment to see what the gastroenterologist has to say. It is an opportunity for her to explain stwff in plain English.
Thankyou Narwhal. It is still an egg. I still rely on B12 injections to stay as well as I am, and hopefully sometime to even get back to a more normal lifestyle. That doesn'tchange because of what she found or didn't find. She can help me manage my gut discomfort, and hopefully, she will learn something from my results ( histology and my symptoms/ treatment diary) that will help her with treating the next person who comes along...... I have plenty of time to ponder what to share with her as the earliest appointment is in 8 weeks! You take care, too!
Your experience does call into question the renaming of PA to atrophic gastritis. The implication is that if AG is not diagnosed then any diagnosis of PA is called into question. Yet another complicating issue in a diagnosis of PA/B12D which allows for adequate treatment and long-term management.
You have hit the proverbial nail on the head! I always understood that the damaged gut was BECAUSE of the paretal cells being attacked by our own bodies (hence) autoimmune.
The focus on the gut now at least to me seems to suggest if one heals the gut PA is also fixed.
But what if the B12 treatment is greater than the rate of cell destruction so “healing” is takes place? So the B12 treatment is key?
Is my simple view of the world wrong?
Got to admit the chicken and egg conundrum (Narwhal’s egg!) does occupy my mind !
They attach to their ligand wherever they come across it. And that unit is recognisable and might then be dealt with by a macrocyte or lymphocyte or whatever!
Thus, as I see it, presence of raised levels of antibodies identifies that their ligand has been recognised by the immune system and it has reacted by releasing large numbers of specifically targetted antibodies.
The question then becomes, what has happened to cause the ligand to become "visible" to the immune system? Is it that some process is attacking/damaging the cells which produce Intrinsic Factor? The IF in the bloodstream then causing IF antibodies to rise to deal with the IF in the wrong place. Whether that is because the IF is being released normally but incorrectly making its way into the bloodstream. Or they are releasing IF directly into the bloodstream.
I know my understanding is very much at the "Janet and John Do Immunology" level.
Also, regardless of how things actually happen in detail, somehow the immune system is doing things that destroy parts of our bodies.
"The focus on the gut now at least to me seems to suggest if one heals the gut PA is also fixed. "
I don't think PA can be cured at the moment Wwwdot. If it was just a matter of healing the gut, most people with long-term PA would have their gut healed enough that they would no longer need injections and could get by on oral maintenance doses. As far as we know that has not happened.
We are in agreement - what I am concerned about particularly with the shift in name from PA to GA is that it suggests the autoimmune “foreverness” could be lost should one be able to improve one’s gut as DiSews appears to have done. This may prompt some medics to reduce (if it could be less in many cases) B12 treatment.
I am seeing a gastroenterologist in three weeks after a very long wait and I am worried that in doing so I may be pushed into the “no need” for more B12 camp, rather than the “continue” with the B12 camp simply because many of my IBS symptoms have improved with self treatment.
The question is can you still have AG and need B12 but have a reasonably healthy looking gut? If so, I question the wisdom in me having any internal investigation?
I don’t feel I am expressing myself very well Apologies hope you can get my concerns and logic?
Wwwdot, I follow your logic and completely understand your concerns. I feel we are potentially in the same boat. Because we have worked hard to be healthier, sometimes against medical advice, we will now be penalised and perhaps alienated further from our health providers.
EXACTLY! It feels like a no-win situation with the NHS - but personally it’s win-win. So a careful balancing act to keep GP onside for blood tests for as long as I can - totally agree to beware of internal probings.
So true, Orchard33. I am concerned that this result could make my tenuous relationship with my GP more difficult, but I've got this far, I guess I can keep going! A lot is riding on my gastoenterologist understanding that 'it is still an egg and needs to be treated as an egg' based on my symptoms , regardless of the histology. I have another 8 weeks to improve even further before my appointment 🙃
I do apologise in advance, firstly to DiSews (for the hijacking of your post) and I freely admit that I am renowned for playing devil’s advocate. Changing the name of P.A. to Atrophic Gastritis (AG) is a huge amount of work. Medical texts from 1849 will need to be amended. Plus, a name change of the P.A Society, all their literature, stationery and merchandise.
I do hope that people are aware of the James Lind Alliance (JLA). Apologies, it is U.K. based but the concept and transferability is there. An aside, Lind was a Scottish doctor who treated sailors who had scurvy with citrus fruits, a hundred years before vitamin C was found. Anyway, the JLA asked patients, What are the top 10 priorities for P.A ? Please know that there is not an infinite pot of money to fund and undertake these suggestions and ideas.
On a personal note, yesterday, in a meeting, I emphasised the word ‘privilege’. It was in reference to researchers remembering that if they wish to study us then they have some understanding of what we endure.
Lastly, in the words of that Greek bloke; ‘I cannot teach anyone anything, I can only make them think.’
No apology necessary! I am clinging to my PA diagnosis and treatment regardless of the presence or absence of atrophy or gastritis. AG it seems is just one subset of PA, so the terms really aren't interchangeable.
Great quote, BTW. Oh, for less brain fog in order to be sharp enough to say just the right thing at the right time to prompt our medical friends to think- to think less about the numbers from the lab and more about the person in front of them!!!!
You are fortunate to get an unsolicited follow-up. I had an endoscopy with biopsies a couple of months ago (I tested positive for parietal cell antibodies 20 years ago) and had to chase my NHS GP for the results that showed chronic mild gastritis with some cell hyperplasia and metaplasia.
You should be asking your gastroenterologist when you should next have an endoscopy to monitor the progression of the gastritis - I was advised between 2-3 years.
I would also try to reduce/eliminate eating foods that could exacerbate the inflammation.
firehill, I am always sad to hear how the NHS is letting so many down!
I will certainly be gunning for a follow-up scope for surveillance- thankyou for that prompt.
This follow-up isn't entirely unsolicited. The health system here in Australia works somewhat differently. My GP referred me to a private gastoenterologist at my request, and I made it clear when she did the scope that my expectation was to have support and advice regarding managing whatever showed up. She is now thinking that I couldn't possibly have 'AG', so I suspect she wants to satisfy her curiosity regarding my history and diagnosis before she tells me I don't need B12 injections. My symptoms diary is going to be my best friend in that discussion- I am ever thankful to whoever first suggested that to me!
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New to the site and navigating confusing symptoms from teh USA
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