Is it worth finding out the cause?

[Hologram]

I've had PA for a couple of years and things have settled down into a good routine of injections that are keeping me feeling well. When I was first diagnosed my doctor told me it wasn't worth finding out the cause as the treatment would be the same. Is he right? I'm not vegetarian so it's not caused by diet. I don't have any gastric symptoms so Crohn's is unlikely. My pharmacist wonders why I haven't been referred to an endocrinologist.

[EllieMayNot]

PA is often caused by an attack on the parietal cells. This damage to the lining of the stomach can predispose one to other problems. Therefore, I should think it wise to test for cause.

Interested to hear what others have to say on the matter.

[fbirder in reply to EllieMayNot]

This is true. So anybody with a non-dietary B12 deficiency should have levels of iron, folate and Vitamin D checked.

The problem with testing for the cause is that there is no cast-iron test for PA. The best is looking for Intrinsic Factor antibodies. But that gives a wrong result in half of those with PA. That wouldn't be a problem is people who test negative were diagnosed as having ABnegPA (antibody negative Pernicious Anaemia) as recommended by the BCSH. But too many doctors decide that a negative result means they can stop injections.

That's why I've never had the IFAB test done - just in case it is negative.

As well as being tested for other deficiencies that can be caused by PA, I think that everybody with it should have a gastroscopy. If you do have PA then that is caused by Autoimmune Metaplastic Gastric Atrophy, and AMGA can give rise to gastric Neuroendocrine Tumours (NETs).

NETs are described as 'indolent'. They aren't malignant, but they aren't benign either. They tend to sit around doing nothing, but can become proper cancer. So it's a good idea to be checked for them.

[Hologram in reply to fbirder]

Thank you. Actually, I now remember he said I could have a gastroscopy, but I didn't really fancy that! I will discuss it with my doctor regarding the NETS aspect. I was low on vit D at the beginning and folate more recently, but those have been sorted with sunshine and supplements.

[fbirder]

Your doc is obviously one of the more clued-up ones.

He is correct, the treatment for PA and for cryptogenic B12 deficiency (i.e., one with no known cause) is the same.

[Sleepybunny]

Hi,

My personal opinion is that yes, it is worth finding out the cause.

Some causes of B12 deficiency are potentially reversible.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

B12 deficiency caused by diet

Diet can be changed to include more B12 rich food or B12 supplements added to diet

"I'm not vegetarian so it's not caused by diet"

There are other types of diet that can increase the risk of B12 deficiency eg

vegan diet

macrobiotic diet

ncbi.nlm.nih.gov/pubmed/198...

ncbi.nlm.nih.gov/pubmed/280...

I guess any diet where the amount of B12 rich food is low.

Do you eat plenty of b12 rich food eg meat, fish, eggs, dairy, shellfish, foods fortified with B12?

B12 deficiency caused by Coeliac disease

A gluten free diet may allow gut to heal enough for B12 absorption to improve.

Coeliac Disease

In UK, two first line tests are recommended. If you've been tested for Coeliac, did doctor do both tests?

1) tTG IgA

2) Total IgA

tTG IgA test checks for a particular antibody to gluten.

Total IgA test check which patients have IgA deficiency.

Patients with IgA deficiency will not make the antibodies to gluten that tTG IgA checks for even if they have Coeliac disease. Patients with IgA deficiency will need alternative tests for Coeliac. See guidelines and Coeliac UK website.

NICE guidelines Coeliac Disease (UK document) suggests anyone with unexplained B12, folate or iron deficiency should be tested. Also first degree relatives of those diagnosed with Coeliac.

nice.org.uk/guidance/ng20/c...

Coeliac Blood Tests

coeliac.org.uk/coeliac-dise...

Coeliac disease can present without gut symptoms and purely with neurological symptoms.

coeliac.org.uk/information-...

H Pylori infection?

patient.info/digestive-heal...

pathways.nice.org.uk/pathwa...

Click on boxes in above link for more info.

Any exposure to nitrous oxide?

Nitrous Oxide

gov.uk/drug-safety-update/n...

Any chance of internal parasites eg fish tapeworm?

Do you ever eat raw fish eg sushi/smoked salmon etc?

Eradication of fish tapeworm should improve B12 absorption from gut.

One of the potential signs of fish tapeworm infection is an increase in amount of eosinophils, a type of white blood cell WBC. Eosinophil result can be found on Full Blood Count FBC results (known as Complete Blood Count in US).

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Fish Tapeworm

sciencedirect.com/topics/me...

There are other parasites eg Giardia Lamblia that can be associated with b12 deficiency.

ncbi.nlm.nih.gov/pubmed/345...

and I think other types of tapeworm....

Taenia tapeworm

ncbi.nlm.nih.gov/pubmed/147...

en.wikipedia.org/wiki/Taeni...

Medications that interfere with B12 levels ( and sometimes folate levels).

There may alternative medication that does not interfere with B12 levels.

PPI drugs

pulsetoday.co.uk/clinical/c...

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

metformin (diabetes drug)

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

anti-epileptic drugs

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

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

Blog post about how PAS can support PAS members seeking PA diagnosis

martynhooper.com/2017/06/24...

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.

Damage to terminal ileum?

Terminal ileum is the part of the gut where B12 absorption takes place.

Some endoscopies may examine the terminal ileum but not all. Down throat (gastroscopy) and up colon (colonoscopy) may miss part of gut in middle.

Endoscopy

nhs.uk/conditions/endoscopy/

B12 deficiency Ileal resection

ncbi.nlm.nih.gov/pubmed/170...

I am not medically trained.

[Ashweb901 in reply to Sleepybunny]

Thank you, sleepybunny. I need to look into my own gastro "picture" and ask my gastroenterologist some questions bc he didn't "clue in" and put 2+2 together when I told him about my b12D history and he found "mild" gastritis with atrophy. Since that endoscopy (is that the same as gastroscopy?) I have had a "high" reading on a parietal cell antibody test.

My question is.....if they take biopsies every time they do an endoscopy (I've had three over the course of 20 years), does that eliminate the need for the ttg or iga tests you talked about? Allegedly the biopsies have shown negative for celiac.

Should I still ask for the antibody tests? I sometimes "give up" gluten for long periods of time but it doesn't help my constipation so I tend to fall off the wagon after seeing no improvement.

[Sleepybunny in reply to Ashweb901]

Hi,

A gastroscopy is a type of endoscopy.

I'm not medically trained and don't know if regular gut biopsies would eliminate need for Coeliac blood tests.

Might be worth reading UK Coeliac guidelines or national guidelines for your country if not in UK.

Coeliac disease can present without any gut symptoms and purely with neurological symptoms.

coeliac.org.uk/information-...

Another reason for negative result in Coeliac tests is patient was not eating enough gluten before blood was taken.

In UK GPs would normally advise patients with suspected Coeliac disease to eat plenty of gluten in more than one meal per day for several weeks before blood taken. If patient does not eat enough gluten then there won't be enough antibodies to gluten circulating in blood to register a positive result in tTG IgA test even if patient has Coeliac disease.

[Ashweb901 in reply to Sleepybunny]

Yes I did know that about the blood tests. I imagine the same could be true of the biopsy tests from the scope. Thank you so much for this info.

[Hologram in reply to Sleepybunny]

Thank you Sleepybunny. That's very useful and a lot to think about!

[deniseinmilden]

It's up to you to - if what you're doing is working and you feel OK is it really worth the time and hassle of finding out that what you are doing is the right thing?

I've been lucky enough to work with top vets and they say that prognosis (outcome) is more important than diagnosis.

Diagnosis can be a mine-field and leave more questions and doubts than it solves.

I wouldn't want to risk a false negative upsetting my treatment regime.

But some people "just want to know" and that is equally fine and has its merits too.

[Gambit62 Administrator]

not sure why your pharmacist thought referral to an endo would be useful.

endo's deal with hormonal systems and most are specialists in diabetes. B12 absorption problems are disorders of the gut and most symptoms are either haematological or neurological so could understand referrals to gastro, haemo or neuro but not to endo.

There is a 40% chance of developing hashimotos (auto-immune disorder affecting the thyroid) if you have PA ... and not sure what the cross over is with Graves (another auto-immune disorder affecting the thyroid) but and endo would be a long way from my first port of call in relation to diagnosing the cause of a B12 absorption problem.

[music501]

I too was diagnosed a 2/3 years ago, but mine is do to anti-convulsant meds +age, but my injections every 8 weeks are keeping me ok