Endoscopy results from 8/3/18 - Pernicious Anaemi...

Pernicious Anaemia Society

33,371 members•24,568 posts

Endoscopy results from 8/3/18

Finally got my endoscopy results back after asking quite a bit. They didn’t release then biopsy results so I emailed and asked them to do this as well.

Confirmed: non erosive gastritis in whole stomach and white speckles in whole duodenum. Gastro doc was pretty confident that I didn’t have H pylori but thought it was another infection. I honestly think it’s Autoimmune Gastritis as I have the antibodies and mostly all the symptoms. He suspects early Pernicious Anemia bit didn’t see any clear signs in the endoscopy and says to watch b12 levels.

So I wrote him an email and asked him to respectfully and seriously consider Autoimmune Gastritis as my diagnosis. I understand that this, PA, and thyroid autoimmune disease are commonly seen together.

I also sent this information to my Primary (requesting the same, that they consider this as my diagnosis) and asked them to fax it to the hematologist.

My primary is on maternity so I have a different PA standing in for her and she emails me back saying, “ thank you for the update.” So I am hoping the she takes me seriously as I have not met her amd the evidence is there.

Written by

JennaShi

To view profiles and participate in discussions please or .

Read more about...

20 Replies

•

fbirder6 years ago

The gastritis associated with PA has two main diagnostic components -

Gastritis associated with H. pylori infection (or NSAID overuse) affects the whole of the stomach. That associated with autoimmune attack only affects the top bits of the stomach (corpus and fundus) and leaves the bottom bit (antrum) alone.

Histology of the biopsy samples of the corpus and fundus will show signs of metaplasia (wrong type of cells).

So you can see why the gastroenterologist decided it was unlikely to be PA.

JennaShi• in reply tofbirder6 years ago

Hi that’s you for your message, I do realize that there are two types of gastritis and not sure where you got that he thought it wasn’t PA, unless I wrote it wrong. He does suspect Pa and didn’t say anything about the antrum in his report. My symptoms line up with AIG as well as having the antibodies and he was positive that I didn’t have h pylori, even at followup visit.

fbirder• in reply toJennaShi6 years ago

You said he didn't see any clear signs of PA. I thought he decided from that that you likely don't have PA. I am confused how he has decided that you do.

If the antibody's you mention are those against Gastric Parietal Cells, then a positive result doesn't mean too much as it's quite common for people without PA to test positive.

JennaShi• in reply tofbirder6 years ago

Hi FBirder, I went back an re-read it. I said he didnt think it was h pylori and suspected PA. Yes, he didn’t see any clear signs and suspected it was too early to tell. I did also go back and re-read the endoscopy results and it said whole stomach and ye biopsied the antrum. I remember he said that the biopsy was negative so this is why he was confident that it wasnt H pylori/ as well as a breath test. Yes those are the antibodies. I have read that it is common with people who already have autoimmune diseases/ thyroid autoimmune disease.

I have tested my b12 and without sublingual supplements it is low within range (300s I believe) and when taking sublingual it goes up to 600s.

fbirder• in reply toJennaShi6 years ago

The fact that your B12 goes up when you take oral B12 is also a strong indicator that you do not have PA.

Tnhundley• in reply tofbirder6 years ago

The two are not correlated in my experience. Oral B12 raised my levels significantly and yet I was still dying. That’s why so many doctors missed it. That happened to a friend of mine as well. Shots saved my life. I’m still in a wheelchair and use a cane but grateful to be healing.

fbirder• in reply toTnhundley6 years ago

If you have PA then you cannot absorb B12. If you can absorb B12 to any significant degree then you do not have PA.

That does no mean that there's nothing else that may be causing a problem with utilisation of B12, resulting in much higher than normal requirements. It's obvious that many of use have such a problem.

Tnhundley• in reply tofbirder6 years ago

Absorption and raised blood levels are different. Someone can have raised blood levels from popping a multi vitamin with B12 once a day and still continue getting sicker. I’m just saying that blood levels are inaccurate for diagnosis the majority of the time- it’s all about symptoms.

fbirder• in reply toTnhundley6 years ago

Raised blood levels without absorption from an oral dose are impossible.

If you have PA then you cannot absorb B12 and oral B12 will not raise blood levels. If you can absorb B12 to any significant degree, enough to raise blood levels, then you do not have PA.

From the PAS website -

"People who have been diagnosed as having Pernicious Anaemia will be unable to absorb Vitamin B12 from food"

Raised blood levels are very accurate for diagnosis of PA. If oral B12 raises blood levels then you can absorb oral B12 and do not have PA.

That doesn't mean you do not have some form of deficiency.

SunnyWorld• in reply tofbirder6 years ago

fbirder I am always interested in yours and Gambit62 responses as you are both very in the know about matters. It's always very interesting and upsets some but we are all learning..I am

JennaShi• in reply toSunnyWorld6 years ago

Sunnyworld, I have asked him politely to not respond to anymore on my posts so if you want to talk about things with him, please take it to your own site or message privately.

Thank you

JennaShi• in reply tofbirder6 years ago

Thank you for your opinion and tye information you shared but I choose to respectfully disagree with you in that the Parietal cell antibody test is too commonly seen in normal people. This is said way too much with alot of other tests such ANA antibodies and everything else and often overlooks the patient with other results and symptoms they are having. Please be kind in the future to others and not so arguably forcing your opinion on other people as they will have a hard time agreeing with you in general. I will not argue with you anymore and if choose to post in this group again I would appreciate if you did not respond.

Thank you

fbirder• in reply toJennaShi6 years ago

Well, you are entitled to your opinion about the GPC antibody test. I was just basing my opinion on what the British Committee on Standards in Haematology say -

Gastric parietal cell (GPC) antibodies have a low specificity for the presence of pernicious anaemia as, despite being positive in 80% of pernicious anaemia subjects, they are also positive in 10% of normal individuals

But what do they know?

JennaShi• in reply tofbirder6 years ago

research.monash.edu/en/publ...

I wouldn’t necessarily agree that everyone on that website does their research and will leave it at that. Thank you again for your opinion but I still disagree and you’re right that is my choice. This article used to be a part of that organization that you are referencing. The direction of that website was changed but evidence still remains.

Attack on Gastric Parietal cells is an indirect immune response to B12; causing depletion of of B12 once there are no more Parietal cells (which make the IF).

Nothing you say will change my mind. I do believe that PCA are an important indicator for those with Gastritis and those with autoimmune thyroid disease. My case is obviously different from yours and I accept that, can you?

fbirder• in reply toJennaShi6 years ago

From the article you quote -

"Laboratory diagnosis rests on parietal cell antibody with or without intrinsic factor antibody, cobalamin-deficient megaloblastic anemia and elevated serum gastrin from loss of acid secretion."

i.e., a diagnosis of PA requires GPC antibodies and megaloblastic anaemia and high gastrin.

JennaShi• in reply tofbirder6 years ago

Not everyone is in the final stages. But this does not negate my case.

fbirder• in reply toJennaShi6 years ago

No. But this still does -

JennaShi• in reply tofbirder6 years ago

I don’t agree with you regarding my case. There are other factors which you do not know of and refuse to keep arguing with you about this. I sent a message, and will agree to disagree. Blessings to you

fbirder• in reply toJennaShi6 years ago

The factors affecting your case have no bearing on the fact that 10 to 20% of normal people have antibodies to GPCs.