At a loss

[Mx143]

Just found out the doctor is testing for celiac. She's obviously bot heard of PA incompetent

[fbirder]

Coeliac disease can cause a problem with B12 absorption. If you have quoted symptoms consistent with coeliacs, then I think the doc is correct to rule that out as a possibility.

[Sleepybunny]

Hi,

UK guidelines below recommend that anyone with unexplained B12, folate or iron deficiency should be tested for Coeliac disease.

NICE guidelines Coeliac Disease (2015 version)

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

Coeliac Blood Tests

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

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Have you had a test for PA?

In UK test for PA is an Intrinsic Factor Antibody (IFA) test. IFA test is not always reliable and it is still possible to have PA even if IFA result is negative.

Some countries also test for parietal cell antibodies as a diagnostic test for PA but this is not recommended in UK.

Antibody Negative PA is described in BSH Cobalamin and Folate Guidelines. See link further down.

Tested for H pylori infection?

patient.info/digestive-heal...

Exposure to nitrous oxide?

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

Checked for internal parasites eg fish tapeworm, Giardia Lamblia etc?

One potential sign of fish tapeworm infection is an increased level of eosinophils, a type of white blood cell. Eosinophil result can be found on Full Blood Count result.

UK B12 documents

I suggest reading all of these if you're in UK.

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

UK GPs may not be aware that BNF guidelines on B12 treatment have changed recently. pernicious-anaemia-society....

BNF

bnf.nice.org.uk/drug/hydrox...

NICE CKS

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

UK local guidelines

If you're in UK, you may not know that some areas of UK are using outdated local guidelines on b12 deficiency. may be worth tracking down local area guidelines and comparing them with national guidelines.

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

PAS blog post about how PAS can support those seeking PA diagnosis

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

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

Link about "What to do next" if B12 deficiency suspected.

b12deficiency.info/what-to-...

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

Iron Studies

labtestsonline.org.uk/tests...

B12 books I found useful

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Does not mention recent BNF change.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

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

Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Lots of useful b12 info in above link.

Point 1 is about under treatment of B12 deficiency with neuro symptoms.

Point 5 is about being symptomatic for B12 deficiency with normal range B12.

Some people have functional B12 deficiency. There is plenty of B12 in blood but it's not getting to where it's needed in cells. Functional B12 deficiency is mentioned in point 5 in above link.

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

Consequences

It's vital to get adequate treatment for B12 deficiency. Untreated or under treated B12 deficiency increases chance of permanent neurological damage.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.

pernicious-anaemia-society.... See Page 2 of articles.

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

I am not medically trained.

More b12 info in pinned posts.

[Sleepybunny]

Hi again,

Diet

Do you eat a B12 rich diet eg meat, fish, shellfish, eggs, dairy and foods fortified with B12?

If yes to B12 rich diet then diet as a cause of B12 deficiency becomes less likely and more likely that there is an absorption problem in gut eg PA, Coeliac , H Pylori and other conditions that affect gut. Some GPs may assume B12 deficiency is diet related so may be useful to write out a typical weekly diet as proof of eating B12 rich foods. Being vegan or vegetarian is a risk factor for developing B12 deficiency.

Do you have neurological symptoms eg tingling, pins and needles, tremors, tinnitus, restless legs syndrome, memory problems, word finding difficulties, balance issues plus other neuro symptoms?

UK recommended B12 treatment for patients with B12 deficiency without neuro symptoms is....

1) 6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months

UK recommended B12 treatment for patients with B12 deficiency WITH neuro symptoms is....

2) A B12 loading jab every other day for as long as symptoms continue to get better (could mean loading jabs for weeks even months if improvement continues) then a jab every 2 months.

If you have B12 deficiency with neuro symptoms and you're in UK then my understanding is that you should be on second pattern of treatment. See BNF, NICE CKS and BSH CObalamin and Folate Guidelines links for more info on UK B12 treatment.

Coeliac disease can sometimes present purely with neurological symptoms rather than gut symptoms.

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

Referrals

Have you been referred to

1) A neurologist if neuro symptoms present?

2) A haematologist if neuro symptoms present?

NICE CKS link in my other post recommends GPs should seek advice from a haematologist for those with B12 deficiency with neuro symptoms.

3) A gastro-enterologist if gut symptoms present?

A gastro specialist should be able to spot signs of gut damage from PA, Coeliac, H Pylori and other gut conditions.

Sadly lack of understanding of B12 deficiency exists among some specialist doctors just as it does among some GPs. I advise being well-prepared for any specialist appointments.

If you suspect you have PA or Antibody Negative PA then probably worth joining and talking to PAS especially if you're in UK.

For UK based PA patients, there are 11 PAS support groups in UK.

pernicious-anaemia-society....

These can be a source of useful info eg helpful GPs.

USA B12 website

b12awareness.org/

Dutch B12 website, has useful English articles

stichtingb12tekort.nl/weten...

[esteloca]

Hi hopefully you don't have celiac disease but you might! I have both PA and celiac disease. I'm in the U.S. & thought the Dr was crazy for testing me because I don't have typical gut related symptoms. I always read about celiacs running to the bathroom when they eat gluten etc. I've never had that problem before. I had headaches, weakness, fatigue, neurological problems, mood swings, weight fluctuations but usually stayed a little overweight ,dizziness, things like that.

Still struggle with some of those things but I didn't get better until I was diagnosed and began the gluten free diet.