Imerslund-Gräsbeck one to know about

[Oneash]

en.m.wikipedia.org/wiki/Ime...

I had an argument last week with a Dr 'Fresh out the box' quoting the text book at me. He said the intrinsic factor antibody test was 95% accurate. So I retorted maybe I was one of the 5%! "That would be very unlikely." About 5 out of 100 unlikely was the answer I wish I'd given.

I tested negative, when, blame the brain fog, I thought I'd tested positive for antibodies.

Anyhow having a search around B12 I came across this syndrome, even rarer, but obviously might be the cause for someone. High protein in your pee, no intrinsic factor issues, but B12 not absorbed in the ileum, due to a genetic malfunction. Just a thought. It's not even mentioned on the NHS website.

[mauschen]

interesting! Can you remember the name of the syndrome?

[Jillymo in reply to mauschen]

It's called Grasbeck Syndrome.

It's very rare with about 1 in every 200,000 diagnosed !

Take a look at the link Oneash has added, it's not one I had heard of.

[mauschen in reply to Jillymo]

Thank you, I have never heard of it but will do some research to find out more.

[Nackapan]

Interesting. I would ask that G.p which text book he / she was reading .

Direct them to free information from The PA Society.

Also say there is more than one reason for an absorbtion problem and arnt my symptoms more important for you to treat??

Forming a clinical picture and if they are unsure a referral is appropriate or at least liaise with an other doctor .

[Oneash in reply to Nackapan]

I intend to send him Martyn's book. I'm going to post separately once I've checked all my blood test reports myself.

[bookish]

Thanks for the link, interesting. There are other genetic and epigenetic contributory factors to B12 and folate metabolism of course.

I think the doctor was confusing 'accurate' with 'specific'

PAS website:

'Anti-intrinsic Factor Antibody Test

This is the test used to find out if the patient has ‘classic’ or ‘full-blown’ Pernicious Anaemia. The test is classified as highly specific (>95%): if tested positive the patient will be deemed as having auto-immune Pernicious Anaemia. However the test has a low sensitivity (50-70%) which means that a negative result does not rule out Pernicious Anaemia.'

'Patients negative for IFAB, with no other causes of deficiency, may still have Pernicious Anaemia and should be treated as anti-IFAB-negative pernicious anaemia. Lifelong therapy should be continued in the presence of an objective clinical response.'

[Oneash in reply to bookish]

Yes I was checking that after. I may write a letter.

[Narwhal10]

Wow and thank you Oneash,

The intrinsic factor antibody test was 95% accurate.

Gosh, he must have been rushed and muddled. This situation happens often. Recently, I had an endocrinologist appointment. The rate at which they spoke, I should have placed a bet on a nag (horse) for both ways.

I commented on the validity and reliability of the tests. They had not heard of this.

Then I asked the doctor what they did to relax. 😉

[mauschen]

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