Endoscopy/colonoscopy: So had both and... - Pernicious Anaemi...

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Robson957 profile image
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So had both and it wasn't as bad as I thought! Doctor says show classic signs of chronic gastric atrophy .. Seems to link directly with having PA, They took biopsies for various things too!

Does anyone know what this means to me? Does it mean I should now be on some stomache medication etc??

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Robson957
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Gambit62 profile image
Gambit62Administrator

The gastric atrophy means that you will no longer be producing stomach acid - although the NHS has protocols for treating high stomach acidity - often with PPIs - there aren't any protocols for treating low stomach acidity. Suggest that you look back through posts to see what people do to help them with stomach acidity. I find drinking water with some lemon or lime juice in it helps me with digestions (though not sure if I have gastric atrophy but do have lowered stomach acidity). You could look back through @fbirder 's replies as he has a number of helpful tips and it would also pick up others that have the same problem.

fbirder profile image
fbirder

You almost certainly have Autoimmune Metaplastic Gastric Atrophy. Your immune system is, for unknown reasons, attacking some of the cells in your stomach. This has several consequences.

The cells that are being destroyed secret a protein called Intrinsic Factor (IF). This protein binds to B12 in the stomach and the small intestine. At the end of the small intestine special cells grab hold of the IF and carry it across the intestinal wall - taking the B12 molecules along with it. AMGA means no IF which means you can't absorb B12 - which is what Pernicious Anaemia is.

Those cells also produce hydrochloric acid. So the fact that they're being killed off means you don't produce enough acid - as explained byGambit62.

When you eat food it stimulates the stomach to produce a hormone called gastrin. Gastrin stimulates the production of acid by the stomach and increased acidity in the stomach tells it to stop producing gastrin - a classic negative feedback loop. But your stomach doesn't produce acid, so there's no increase in acidity to tell it to stop making gastrin.

The result is too much gastrin in the blood - hypergastrinaemia. High levels of gastrin make the stomach attempt to produce more of the cells that produce the acid - but they get killed off by the immune system. Instead other cells are produced (the 'metaplastic' bit of AMGA).

Sometimes this production of new cells can go into overdrive, producing tumours called Neuroendocrine Tumours (NETs) or carcinoid tumours. These are almost always pretty innocuous little beasties and are nothing to worry about (I've done lots of research into these, because I have them).

The biopsy samples they took can tell them just what sort of gastric atrophy you have and they will look for possible tumours. Again, I must emphasise that it's extremely unlikely that anything nasty will crop up.

Indeed, the survival rate of people my age with NETs is actually better than it is for people without them. I guess it's because we have a lot of other health checks looking for possible nasties, whereas without NETs I may have something nasty that would be overlooked.

Robson957 profile image
Robson957 in reply to fbirder

Thanks for this. It's the most clear description I have had. Hopefully just need to try and help level off the gastric acid levels and nothing else!!

Thanks again.

fbirder profile image
fbirder in reply to Robson957

That's my way of handling it. A small amount of lime juice (25 ml) in water/orange/tonic with each large meal seems to be keeping it in check.

If you mention it to your gastroenterologist then they'll probably pooh-pooh the whole idea.

I've persuaded by gastro that it's not a totally bad idea. I've also persuaded him that it may be a good idea - as lowering the stomach pH (making it more acidic) by artificial means may well switch off gastrin production like what is supposed to happen naturally. This would prevent hypergastrinaemia - and, maybe, subsequent tumour generation. So he agreed to give me another gastric test to see if it's gone down. I'll find out in September.

The planned treatment for my NETs, as suggested by me and agreed by some prof at King's College Hospital, is to keep an eye on them with an annual gastroscopy.

They may suggest you should have one every 2 to 5 years just to check there's nothing naughty happening. If they don't I'd probably suggest it to them myself - and mention the possibility of gastric carcinoids.

Robson957 profile image
Robson957 in reply to fbirder

Thanks very much. I'm not much use at taking control myself, but as you say there's no harm suggesting those check ups.. Thanks so much for your help. I'd be interested to hear how you get on in September!

Foggyme profile image
FoggymeAdministrator

Hi Robson957. So pleased your tests went well!

First, just to,let you know, I have achlorhydria (lack of stomach acid) and have been following the advice of Fbirder, gambit, Polaris and others, to good effect.

Second, do you mind if I ask you a question?

I have to have a gastroscopy and colonoscopy next week. Fine about the gastroscopy - had one before and didn't bother with the sedation.

However, the information for the colonoscopy is contradictory. First it says that this is always done with a sedative then elsewhere it says that sedation is rarely used but possibly available, if requested.

So, did you have sedation when yours was done? Was this giv n automatically or did you have the choice? And I know we're all different, but was it painful?

I'm not squeamish or whimpish about these things but have heard tales of this being incredibly painful.

Just pondering about what to do if there is a choice to be made so any comments would be gratefully received.

Hope your recent results help you to find ways of improving.

Take care

fbirder profile image
fbirder in reply to Foggyme

I blame my colonoscopy for my sudden B12 deficiency. Well, it's the gas and air that I blame. I'm sure the nitrous oxide depleted my, already small, B12 reserves.

I would phone them on Monday and explain that you are B12 deficient and don't want gas and air. I can't remember if I was given the choice or not. I do know that I was so intrigued watching it on the TV that they had to keep reminding me to use it.

I wouldn't describe it as painful. It was only when they were going round the first corner that there were a couple of painful prods but that was it.

The worst part of it was the cleansing the 24 hours beforehand.

Foggyme profile image
FoggymeAdministrator in reply to fbirder

Thanks fbirder. My gut feeling (excuse the pun) is to avoid sedation so I can watch the TV show! think I'll avoid the nitrous oxide 😱.

Sounds like going around the first bend will be interesting (probably been there before in other ways) and I'll REALLY LOOK FORWARD TO THE CLEANSING! 🚽🚽🚽🚽🚽🚽🚽🚽🚽🚽🚽

Have to ring them on Monday anyway so will discuss it with them then. They offered me a cancellation place but the numpties didn't tell me to stop the iron tablets. Too late to allow five full days so think they may want to reschedule.

I wonder if they'll do me a CD.....

Cheers 🍷

Robson957 profile image
Robson957 in reply to Foggyme

Hi

I was given sedation without option. So I didn't feel a thing. The doctor told me that they would definitely do biopsies so that was why. I think if you don't need biopsies you can choose whether to be sedated.

Good luck k with yours. I was really glad to be completely asleep throughout it!!

Foggyme profile image
FoggymeAdministrator in reply to Robson957

Thanks Robson957. Would dearly love to watch on the screen but would also dearly love not to have any pain!

Biopsies a high probability so will have to be guided by them I guess.

Many thanks for your reply.

Keep well 😀

Robson957 profile image
Robson957 in reply to Foggyme

Good luck.. I was really nervous but it was good to have it over with and everyone seems to say it's not as bad as you think

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