Testing please: Hi, I’m still waiting... - Pernicious Anaemi...

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Testing please

Ecf123 profile image
8 Replies

Hi, I’m still waiting on the intrinsic factor and pareital tests. I have a feeling they will be normal since 50% false negative. What tests does one then do if that happens? I know b12 is causing psychosis because it happened right when went vegan as well as other symptoms like headaches, hair loss, swollen feet, etc. Thank you.

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Ecf123
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etreas profile image
etreas

It sounds like you may have answered your own question. If your symptoms arose right after going vegan, they were almost certainly related to a dietary deficiency rather than an absorption problem, or PA. That's great news, as it should be easily remedied with oral supplements. In this case, your parietal cell and IF antibody tests should all read normal.

Ecf123 profile image
Ecf123 in reply to etreas

Yay do you think I can take pills instead of shots then? The problem is the first two hospitalization were when I still ate meat but were very short lived. As opposed to long, long bouts of delusions while I was vegan for years. Does that still mean it’s dietary? I think you are right!

Ecf123 profile image
Ecf123 in reply to etreas

I’m thinking the first two hospitalizations I probably just wasn’t getting enough b12. Maybe not extreme vegan but maybe just somewhat vegetarian, I don’t remember really. What a relief. I hope they come back normal. Most likely will. Thank you!

bookish profile image
bookish in reply to etreas

You probably know more about this than me but I thought that H pylori could affect the parietal cells and also Coeliac/gluten can, so there could perhaps still be an absorption problem, even if hopefully treatable in the case of the pylori. Not sure to what extent removing gluten from the diet would reverse the damage, if that were a co-existing problem with the lack of B12 in the diet. Do you know if you can test parietal cell antibodies once on B12 or is it another test altered by treatment? Thanks

Ecf123 profile image
Ecf123 in reply to etreas

So intrinsic factor was 1 and normal was 0-1.1. Dr forgot to test for parietal ugh. I’m realizing pareital may be abnormal due to chronic ebv. Which may be causing the absorption issues

Ecf123 profile image
Ecf123

Thank you. I did the blood test for pylori thinking the same thing a few days ago and normal. I know the blood test isn’t reliable but just couldn’t figure out a reliable test for that.

Sleepybunny profile image
Sleepybunny

Testing for PA (info from PAS website)

pernicious-anaemia-society....

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

Gastrin test

labtestsonline.org.uk/tests...

UK forum members might find these UK documents below of interest as they discuss diagnosis of PA and B12 deficiency.

UK B12 documents/articles

NHS link about B12 deficiency (simply written)

nhs.uk/conditions/vitamin-b...

BSH Cobalamin and Folate Guidelines (whole document, detailed and aimed at health professionals)

b-s-h.org.uk/guidelines/gui...

Summary of BSH Cobalamin and Folate Guidelines (main points from above document)

pernicious-anaemia-society....

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

NICE CKS B12 deficiency and Folate deficiency

cks.nice.org.uk/topics/anae...

I am not medically trained.

Ecf123 profile image
Ecf123 in reply to Sleepybunny

Thank you Sleepybunny. It will be interesting to get the results of the first two you listed. Still waiting.

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