IF & Parietal Cell antibodies - Pernicious Anaemi...

Pernicious Anaemia Society

26,662 members18,528 posts

IF & Parietal Cell antibodies

Portia1974 profile image

I'm curious to know if anyone has first tested negative for IF antibodies....then at a later date been tested again and come back positive? Mine came back negative last time I was tested 2 or 3 years ago. Was never tested for Parietal Cell antibodies. My new GP (Who so far has been astonishingly well informed and proactive!) is aware of the unreliability of IF testing and is retesting me for IFab and also for Parietal Cell antibodies. My ANA test a few months back came back negative which as I understand it is a relatively reliable indicator of autoimmune activity of any kind in the body. So I'm anticipating the new tests to come back negative. But curious as to others experiences. Anyone had a false negative then retested and found to be positive? Any thoughts on the reliability of the ANA test?

18 Replies
Gambit62 profile image

believe that Martyn Hooper - founder of the PAS was tested 4 times before he got a positive for IFA - it is not a very sensitive test so can be done several times before you get a positive.

Portia1974 profile image
Portia1974 in reply to Gambit62

Thank you gambit62! Do you have any knowledge regarding the ANA test?

Gambit62 profile image
Gambit62Administrator in reply to Portia1974


Portia1974 profile image
Portia1974 in reply to Gambit62

Yes I've read that before. I know what it tests for. Just wondering whether it is definitive or fully rules out any autoimmune activity. Can't find anything on that.

Gambit62 profile image
Gambit62Administrator in reply to Portia1974

suggest you ask the doctor who asked for the test, or the lab performing the test, or post on one of the lupus forums as it isn't specifically related to B12.

Portia1974 profile image
Portia1974 in reply to Gambit62

Thanks gambit62. Will try another forum maybe. No point in asking the doc. Honestly. Useless. (No longer at that surgery anyway) I just thought as it is a test for autoimmune activity and PA is autoimmune, some on here may have had it. Thanks anyway 😊

beginner1 profile image
beginner1 in reply to Gambit62

I have just bought Martyn Hooper's latest book, and was reading this passage this morning. Page 109 What You Need to Know About Pernicious Anaemia & B12 Deficiency.

"- the test is not in any way accurate, and I know from personal experience that this is the case; I tested negative for the antibodies twice before eventually testing strongly positive."

Portia1974 profile image
Portia1974 in reply to beginner1

Thank you beginner1! 😊

Hi there! I am no expert by any means, but I believe that you can have a negative ANA but still test positive for other autoimmune diseases. I had a negative ANA but tested positive for parietal cell antibodies. I think the ANA is supposed to be used as an indicator for certain rheumatic diseases (like lupus) and is treated by a rheumatologist. Other autoimmune diseases like PA or celiac for example, probably would not be picked up by this test. Those conditions are also treated by other specialists (GI, neurologist, etc.). Again, I am by no means an expert and am new to this myself. Still learning and figuring it all out. Hope this is helpful!

Portia1974 profile image
Portia1974 in reply to npc0823

Aha! Indeed it is helpful! Thank you so much. That's exactly what I was getting at. Thank you!!! So did you get a diagnosis of PA or atrophic gastritis as a result? As I understand it IFab is specific to PA but Parietal cell antibodies can be either PA or Atrophic Gastritis?

npc0823 profile image
npc0823 in reply to Portia1974

I’m so glad! :-)

So I was actually seeing a rheumatologist (back in October of 2017) because I am at risk for lupus/mixed connective tissue disease. When she ran her tests she also checked my B12, parietal cell and IF antibodies. I had low B12, was positive for PC but negative IF. She told me I had pernicious anemia and that she doesn’t typically treat it and referred me to a GI. After a few months of taking B12 orally, my b12 level improved, but both PC and IF antibodies increased, with IF being only .1 away from being technically positive. Mind you, I was first tested in October, retested in February. Despite my B12 being better, I was still feeling lousy, but she dismissed my symptoms and didn’t think an endoscopy to check for gastritis or anything else was necessary “because you’re so young and even if you did have it there’s no cure and we wouldn’t do anything about it anyway.” Uplifting right? So needless to say, I am in search for a new GI! My symptoms have been bad for two weeks straight and I am going to a GP next week. I am going to ask that we re-run everything bc I have a suspicion that the antibodies are just going to keep going up and I am worried oral supplements will no longer work for me.

So at this point, I don’t know if I have atrophic gastritis. And depending on the doctor, they might argue that I don’t have PA either.

How’s that for a confusing, unclear answer? :-)

I am positive for intrinsic factor (PA) & TPO (thyroid-hashimotos) antibodies but tested ANA negative after confirmation of both the above conditions.

Thank you! That answers it alright! Beyond the crappiness of the symptoms, (and hoping you've managed to get them under control) does anyone find this stuff REALLY interesting??!

clivealive profile image
clivealiveForum Support

Hi Portia1974

I had to have two "Schilling" tests - one in 1968 the second in 1972 - before I got a diagnosis of P.A. The Schilling was was supposed to be more accurate than the current IFA test but as it involved drinking radioactive B12 getting the isotopes are difficult so it is no longer available.

I'd had gastric surgery in 1959 but the connection between that and B12 Deficiency/P.A. was not generally known back then.

How do you find the knowledge and care surrounding this condition now compared to then Clivealive? I don't know, maybe I'm imagining it, but it seems like there WAS once a "golden age" of the NHS. When it would have been the best in the world. (I know we've made great leaps forward in some areas. But whenever Mum talks about maternity care in the 70s for instance, it's world's apart from where we are now. Like it's gone backwards and they've completely forgotten the basics). Just wondered what your perspective was . Are they less informed now than they were then?

clivealive profile image
clivealiveForum Support

My memories of the NHS go back to the days in April/May 1959 as a "callow youth" of 17 years of age I had a perforated stomach ulcer and had to have emergency gastric surgery for the removal of two thirds of my stomach.

In those far off long ago days when Matron and/or Doctors came round everyone (including the patients sometimes) stood at attention and bedclothes all had "hospital corners" and were pulled so tight not a crease was to be seen :)

I will message you my account of that episode in my life as it is too long to put here..

Ah, this is useful - as I tested negative - but I'd forgotten that people - and Martyn Hooper specifically - have tested negative and then positive.

I find this conversation really useful. I am in Canada and my doctor refused to test IF because it is unreliable. She said our labs no longer perform the test ( I have no idea if that is strictly accurate across Canada). Now of course I inject so really no use in testing I guess!

She did send me for ANA which came back negative so she said I could not have any autoimmune disease. I keep wondering about that because I can’t seem to figure out any reason other than PA for me being B12 deficient. I had no GI issues and eat meat etc. I don’t know.

Good luck to you!!

You may also like...