Gastroenterologist says a positive IFA & Parietal Cell antibody result does not mean I have P.A. ?! HELP & advice please

[Barry1955]

Just returned from Hospital Appointment to see Gastro, at request of my G.P`s, one who does not think I have a B12 issue, and another who will not agree to alternate day jabs without ok from Hospital because afraid of overdosing issues ( he quoted side affects from his BNF book ).

The Gastro said that positive IFA & Parietal cell antibodies can lead to P.A. but does not mean I already have P.A. ?????

Gastro arranging to test for H.Pylori / Coeliac / and Gastritis , and cannot recommend B12 jabs until she sees proof . I was under the impression that a positive IFA antibody test WAS PROOF ?

I am not prepared to wait forever for treatment, so will start self injecting immediately and join the rest of the thousands forced into doing so.

[floraldaisy]

Good for you. These drs are governed by too many guidelines and appear to have stopped any original thinking.

[pollianna in reply to floraldaisy]

I now see GPs like a cook following a recipe book. They don't appear to be able to think outside the guidelines. I haven't met one who can diagnose anything since 2009.

I could not stand up a year ago and no one I saw had a clue why my nerve pain was so bad I could not even sit up. I was suddely struck down and almost wet myself on the way to work.

There was no trauma except a heavy period yet one Doctor decided I had sprained my spine. They initially looked for cancer. When that wasnt found 5 other Doctors were happy to leave me to suffer and reiterated I had a sprained spine.

I have treated myself. I have gone from sleeping 12 hrs a day, needed 3 months off work to being pain free.

I declined the Gabapentin nd the Ametryptiline sp? Not popular as a result

[fbirder]

Your gastroenterologist is one of those who believe that you need to have changes to the blood, specifically megaloblastc anaemia, to have Pernicious Anaemia. And you can see why the name is confusing.

What you need to do is access the NICE (National Insttitute for health and Clinical Excellence) guidelines on he management of PA -

cks.nice.org.uk/anaemia-b12...

This document includes the following:

"Anti-intrinsic factor antibody is extremely specific for pernicious anaemia, with a high positive predictive value of 95%".

Ask him if he has ever been 95% sure about any diagnosis, ever!

[Frodo in reply to fbirder]

Slightly off topic but just read those NICE guidelines and they are still insisting on 3 monthly for maintenance jabs. They don't have guidelines or evidence for treatment if symptoms do return before 3 months other than to seek specialist advice from a haematologist (and as many people have reported here that is usually unhelpful).

[clivealive Forum Support]

Hi Barry1955 that is so sad and so bad.

Please ensure you have an healthy level of Folate once you start the B12 injections.

Have you thought to contact the Pernicious Anaemia Society?

I wish you well.

[wedgewood]

Join the club ! If you need any advice about SI come back here . Best wishes .

[Gambit62 Administrator]

Positive for Parietal cells is far from conclusive.

IFA can give false positives if done too close to treatment with shots or high dose supplementation - but as fbirder points out is extremely unlikely to give a false positive in other circumstances.

Sad to see side effects quoted without weighing them against consequences of lack of treatment (permanent nerve damage, dementia, blindness and death if left too long).

[Sleepybunny]

Hi,

Have you considered contacting the PAS?

They can sometimes intervene by writing letters on behalf of members and might be able to point you to info about what is needed for a definite diagnosis of PA.

I think the chair of the PAS might be interested in hearing from someone who cannot get a diagnosis of PA even with positive IFA test and parietal cell antibodies.

pernicious-anaemia-society....

PAS tel no [phone]