Parietal status changing from positive to negative???

I'm sort of beside myself with my recent test results. A little history: I was diagnosed with PA at the Mayo Clinic in August 2019 based on low serum (170) plus a positive test for parietal cell antibodies. I was negative for IF, but the GI doctor said we had to assume it was pernicious anemia due to low serum. I was also diagnosed with SIBO, which also can interfere with B12 absorption, and was put on antibiotics to clear it up.

I've been continuing with weekly hydroxocobalamin injections since November, as I've been continuing to struggle with neurological symptoms that come and go. I recently had an appointment with a new GI Dr who also practices Functional Medicine, and she retested my parietal cell antibodies and it was negative! My B12 levels were also 2000+, which was to be expected given my weekly dosage.

Has anyone else had a switch in their parietal cell status like this? Does this mean that I possibly do not have PA, or the test was possible inaccurate? I still struggle with neuro symptoms on and off, so I don't feel that I'm anywhere close to being healed. OR, I have something else going on causing these symptoms, but my recent MRIs (brain and full spine) plus EMGs are all normal. Any insights here would be helpful.

[Sleepybunny]

Hi,

A few links that may be of interest

B12 article from Mayo Clinic

ncbi.nlm.nih.gov/pmc/articl...

Suggests

1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections

2) Many current diagnostic tests eg serum b12, active B12, MMA, Homocysteine, are not totally reliable

3) Successful B12 treatment should not be stopped

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.

Both these tests can be unreliable.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

"she retested my parietal cell antibodies and it was negative"

PAS link which explains what PA is

pernicious-anaemia-society....

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has members in other countries.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society)

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

I wrote a very detailed reply on another forum thread which has links to other B12 books, other B12 websites, symptoms lists, UK B12 documents and other B12 info.

healthunlocked.com/pasoc/po...

I hope you'll find some useful info in it .

I am not medically trained.

[Hidden in reply to Sleepybunny]

Thanks Sleepybunny . I'll do some reading.

[Gambit62 Administrator]

WHO no longer recommend parietal cell antibodies for testing PA because it has a high probability of giving a false positive.

If you have a B12 absorption problem then PA is still the most likely explanation.

[Hidden in reply to Gambit62]

Thanks you Gambit62

[fbirder]

Why did the new doctor order pointless retests? That's the first question I would ask.

[Hidden in reply to fbirder]

I asked for it...I know it was pointless, but after I started weekly injections, my levels were still 573, so I wanted to see how much they had done up over time, just for my own information. She was also screening me for other autoimmune disorders, so she was running a bunch of IGA/IGG tests.