Finally after six long weeks of waiting....

My doctor sent IF antibody and Paritial cell antibody tests to double check the PA diagnosis I had in 2005....they have come back negative!!! Does this mean I don't have PA and was wrongly diagnosed in 2005? I am so upset, over the years I have been misdiagnosed, when I was 21 I was told I had coeliacs disease, then when that was rechecked in 2005 it was proven I hadn't had it and was told I had PA and had had it since childhood....now I'm told that diagnosis is wrong!!! What the hell is it then??? Who can I trust to get a diagnosis of the real problem, because you can bet I won't be getting my B12 anymore. Any help will be much appreciated. Thanks.

[Galixie]

Oh how frustrating!

One thing to keep in mind is that antibody tests are not ever 100% accurate. I tested positive for parietal cell antibodies in 2008 but tested negative for them when I was retested in 2009. It doesn't mean I don't have PA. It just means I don't have a definitive diagnosis. You might be in the same boat.

You also still might have celiac disease. How did they come to that diagnosis in the first place? The reason I say it might still be an issue is because a person with celiac disease will usually test negative for the antibodies if they have been adhering to a strict gluten free diet. Positive antibody tests usually only occur if the person has been eating gluten-containing foods. If you were told you had celiac, then went gluten-free, and then had your blood tested for antibodies, of course your results would be negative. (Also your doctor is doing things backwards if that is how it was done. All celiac testing should be done before a person starts a gluten-free diet for just this very reason.)

Here are two more things to think about.

1. Regardless of whether you have autoimmune Pernicious Anemia, or B12 deficiency due to another cause, the deficiency *must still be treated*. In the end the treatment is the same (B12 replacement therapy - AKA injections of B12) no matter what the cause of the deficiency is (with the exception of deficiency due to dietary lack).

2. Autoimmune diseases cluster. You might actually have both celiac and PA. It is not uncommon for a person with one autoimmune disorder to have another autoimmune disorder.

[Allyson1]

How exactly was the celiac initially diagnosed?

If you have been off gluten for years, then your antibody tests or an endoscopy biopsy might not show anything now. That doesn't mean you're not celiac anymore, it means you've healed the celiac damage.

It depends on what the original test was, and its results.

Plus there is a potential for false negatives, with celiac testing.

Galixie said it right

[Hidden in reply to Allyson1]

The initial diagnosis of coeliac was made in 1970 when I began being sick at 3 months pregnant then had the runs, this went on til I was admitted to hospital weighing just 88 pounds and being 5 months pregnant, I was hallucinating and put on drips for a month. I was told I made medical history by surviving. Once the baby was born I began eating normally with no ill effects. This same sickness and runs, painful wrists and ankles, ear itching, sore skin ect returned in 2005, I had another test by the consultant to see if coeliacs was the cause, it wasn't and I had been eating a normal diet. After a lot of referrals to different consultants I was finally diagnosed with PA. It's only because a new doctor cut my jab time from 2 months back to 3 months that I was told the surgery had no record of my having PA, that's why the tests have been done. Would the fact that I had been treated with B12 for the last 10 years make any difference to the test results for IF antibodies?? I was told specifically that I had no Intrinsic Factor by the doctor who was my then GP in 2005.

[Gambit62 Administrator]

tests for antibodies are 50% accurate at best so a negative result is far from proof that you don't have PA - though given your age at initial diagnosis, unless you have had gastric surgery - PA does seem the most likely explanation for a B12 absorption problem that has lead to a deficiency.

Unfortunately some medics use the terms PA and B12deficiency interchangeably so you may have been victim of someone not being precise enough with their words.

Whatever the cause of a B12 absorption problem - and there are many - not find another way of toping up your B12 will mean that you will become deficient again, and whatever the cause of the deficiency (unless proven to be dietary) the treatment will be the same.

The cause of the absorption problem isn't the issue - the fact that you have an absorption problem is the issue, and without shots or some suitable alternative you will develop a full blown B12 deficiency - which would mean anaemia, neurological, psychological problems, blindnes and death if left untreated. These are not the symptoms of PA, they are the symptoms of the B12 deficiency that PA will cause ... so back to it being irrelevant what the cause of malabsorption is.

[Polaris]

How high handed of the new GP to disregard your painful history and reduce your injections iresee. I think you you should show him/her this !

TheyWorkForYou email alert :

To ask Her Majesty’s Government how they propose to alert medical practitioners to the severe and irreversible nerve damage that can occur when pernicious anaemia is misdiagnosed.

Countess of Mar - Crossbench"

theyworkforyou.com/wrans/?i...

Extract:

"To support the diagnosis of pernicious anaemia, the British Committee for Standards in Haematology (BCSH) has publishedGuidelines for the diagnosis and treatment of Cobalamin and Folate disorders, which sets out that cobalamin status is the recommended first line diagnostic test. However, the guidance states that there is no gold standard test for the condition and makes it clear that the clinical picture of a patient is the most important factor in assessing the significance of the test results. This means clinicians should take into account all of the symptoms the patent is experiencing, their medical history, age and other relevant factors when considering the implications of a patient’s cobalamin status. The BCSH guidance highlights the risk of neurological impairment if treatment is delayed. "

[Hidden in reply to Polaris]

Thanks Polaris, the doctor who ordered the tests isn't in until next week si I will take it with me in case the dares to cancel my B12 unless he has found some other illness making my life a misery.thanks for caring.

[Sleepybunny]

Hi,

I'd ring the PAS .....ASAP.

pernicious-anaemia-society.org

Head office: 01656 769 717 if you leave a message they will get back to you.

The chairman of the PAS tested negative on more than one occasion.

"because you can bet I won't be getting my B12 anymore"

If all else fails some people self treat as a last resort.

try this site for how to talk/write to your GP

b12deficiency.info/b12-writ...

The person who runs it is very sympathetic. Contact details on website.