Another stomach question

[CW12]

My hemotologist recommended I see a gastroenterologist. I know they are looking for atrophy and NETS. What do they do if there is atrophy? Just wondering what people’s experience has Been?

[Gambit62 Administrator]

I don't think there is anything they can do about atrophy but it would give you a definitive diagnosis and you would then know if regular gastric monitoring was a good precautionary measure

[fbirder]

If they find gastric atrophy they will attempt to determine the cause. One of the best ways is to determine the extent of the atrophy, and what parts of the stomach (fundus, corpus, and antrum) are affected.

If it is restricted to the fundus and corpus then it is almost certainly caused by an autoimmune attack. There is nothing that can be done to prevent this, or to cure it.

It is affects the whole of the stomach then it is probably caused by infection with Helicobacter pylori. They will do tests to look for this infection. If it is present then they can treat and, often, eradicate it.

They will ask if you take lots of painkillers as too many NSAIDs (ibuprofen, aspirin, etc.) can cause gastritis.

[CW12 in reply to fbirder]

Is it serous to have atrophy of the corpus or fundus. Hopefully I just get it over with so I can stop worrying

[fbirder in reply to CW12]

If you have autoimmune gastric atrophy is is serious. It means you have Pernicious Anaemia. It means you cannot absorb B12 and will have problems absorbing folate, iron and Vitamin D.

There is no cure.

[CW12 in reply to fbirder]

This part I did know. I do take all these supplements. So the seriousness is limited if you are taking supplements correctly and regularly. I know you talked about nets. It is rare in the regular population. I thought I saw 4-7% in the pernicious anemia population. Something like that would be more of my concern.

[fbirder in reply to CW12]

4% sounds high. I don't think I've encountered more than one other person with PA and NETs.

According to this paper - cghjournal.org/article/S154... - having PA increases the odds of having a gastric carcinoid (the old name for NETs) by a factor of 11.43

This paper - onlinelibrary.wiley.com/doi... - says that the incidence of NETs in the general population is 2 in a million.

Combine the two and you get 20 per million (0.002%) in people with PA.

I was the first person with NETs that my gastroenterologist had encountered.

At the Birmingham PAS conference I asked everybody present (at least 100) if any of them had NETs. None.

[CW12 in reply to fbirder]

Thank you so much for this information. You are brilliant resource! The fact that you are so accessible does not go unappreciated!

[Heidiv in reply to CW12]

I have a question: I've had multiple gastroscopies and 1 colonoscopie (I only found out later that they don't even scope half). There was no suspicion of PA at the time. They were actually mainly looking to exclude cancer. Would they have noticed anything if have PA? In the stomach or the bowel?

Thank you!

[CW12 in reply to Heidiv]

If there is atrophy in a particular part of the stomach it is an indicator of PA. Why did you have so many scopes. Were you having severe symptoms? I’m assuming

[Heidiv in reply to CW12]

Yes, I have severe IBS. Had it for 25 years and was more or less used to it. Then it got much worse after a trip to Tanzania and contracting a parasite. But I think it was actually the antibiotics ( Tinidazole) who really destroyed my microbiome. Now I take activated charcoal in these cases or for food poisoning, works just as well and no side effects for me. Wish I'd known before. I won't take any antibiotics ever anymore unless it's a matter of life and death. I come from Belgium which is one of the countries with the highest number of antibiotic prescriptions, usually for nothing (virusses) so my gut was already in bad shape since I caught any virus (and was asthmatic) that was around since I was little. Drs tought it a good idea to prescribe antibiotics every couple of months as a prevention (so my colds wouldn't "degenerate"). Wish they would have looked a bit further and asked themselves why my immune system wasn't working properly.

I hope you will get the test results back so you don't have to worry anymore.

[gingerbear644 in reply to Heidiv]

You will need probiotics...look for natural way to rebuild. Those docs were fools. Even our docs in our third world country won't prescribe that much antibiotics.

Please note with loading doses, sometimes every day b12 injections what we thought was IBS is no longer there. B12 deficiency causes a multitude of problems.

What I have is food allergies. Start a healthy b12 regiment and see if the IBS goes away. Most common food sensitivities are gluten, dairy, eggs...there will be more but don't eat what you are allergic too.

Keep a food diary and you will know what makes triggers it. The worst thing is the IBS if it is this, or even food allergies will not allow ur body to absorb b12 making everything worse

[Heidiv in reply to gingerbear644]

I'm already gluten free for years and have a long list of "offending" food and even drinks. The link between gut/absorption issues is clear to me. Every time I got bad food poisoning (salmonella, guardia,..) my symptoms (muscle and joint pains, ...) got into another stage, to the point where I got severe problems with my legs/knees whilst fighting guardia.

Very frustrating. I hope it will get better if I can rebuild some of microbiome. I've only had weekly b12 injections and never had loading doses (every other day) but a

I'll be home soon where I can pick up a much bigger stack, so I can injevt more which seems necessary as I have a host of neurological symptoms. Thank you for your answer and wishing you the best

[Heidiv in reply to CW12]

I've heard some good things on Symprove on here but can't get it sent to Belgium unfortunately. Will keep trying. Hopefully the company will extend to other countries than the UK.

[Heidiv]

Thank you so much Gingerbear! As you say, pain is a signal. For years, drs. have been telling me it's nothing serious but they don't feel the pain. Finally you end up with the (non) diagnosis Fibromyalgia

It's amazing to read that you're painfree, no more bone/knee pain. I cannot even imagine it. Now I'm encouraged to take more (I was gonna do anyway) when I have enough ampoules again. I've had some progress, small babysteps not always easy to notice but I take this as a sign I'm on the right path. And I want to be able to walk/move again without pain. I'll keep experimenting as this is what me brought me this far and there is no one size fits all. If I have to inject every day or other day to get better so be it.

I'm injecting Methyl. Didn't know about the genetic mutations, very interesting!

So nice to hear that you are healing. The body needs a lot of time to repair the damage.

All the best!

[Heidiv]

Gingerbear thank you so much for your wise words. As I don't have a dr. nearby (only through email) following me this is helpful and reassuring. Once I injected 3 times in 5 days to heal an injury and it did an amazing job but I also felt a bit hyper (but happy the injury 'disappeared"). So I was gojng to take it slow, starting with twice a week andsee how I respond to that. Thank you for writing down the signs of injecti g too much as it's hard to gauge if I'm injecting too much or not enough.

Good luck to you too!

[Foggyme Administrator in reply to Heidiv]

Heidiv. For clarification...there is no such thing as 'injecting too much' vitamin B12. The aim to to have frequent enough injections to keep symptoms at bay.

B12 is neither toxic or dangerous...and you cannot overdose on it.

Often when treatment for B12 deficiency commences, symptoms appear to get worse - this is because B12 is suddenly getting into the cells and the nerves have to 'learn' to re-interpret the new stronger signals. This settles down as treatment continues and nerve repair takes place.

Please do not cut down on your injection frequency if you are having symptoms - or the symptoms seem to re-appear or get worse - this could be detrimental to your recover and long-term health.

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

👍

[Heidiv in reply to Foggyme]

Thank you so much! Yeah I've "stretched" the weeks between injections a bit because I was abroad and staying a bit longer so not having enough. Boy am I paying for it now. Symptoms of deficiency coming back with a vegeance + flu like symptoms. I'm really getting impatient to get to beginning of January, when I'm flying home to Europe, where a big batch is waiting this time. At least it kind of confirms that I'm not injecting enough, just giving my body little drops of what should be much more, which is kind of "torture" for my body cause it thinks it's getting extra vit. B12 but it's far from enough.