Endoscopy : Hello all: I just had an... - Pernicious Anaemi...

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Endoscopy

Maggiez profile image
9 Replies

Hello all:

I just had an appointment with my gastroenterologist. I had an endoscopy that came back clean. I have lots of symptoms of b12 deficiency/PA. I tested positive for parietal cell antibodies but have not been tested for insintric factor. I've been doing SI so I'm not sure if I'll be able to test for IF anytime soon. My gastro said I don't have b12 deficiency/PA because my biopsy results came back negative and I didn't have gastritis or inflammation. Is this true? Also, I have not found any relief of symptoms from injecting. I have tingling all over body and head, fatigue, nausea, bloating, heartburn, new symptom of achy bones and a host of other symptoms.

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Maggiez
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fbirder profile image
fbirder

A gastroscopy can rule out autoimmune gastric atrophy, the base cause of PA. It will also rule out other possible causes of a B12 deficiency (H. pylori infection, coeliacs, etc.). But a gastroscopy alone cannot rule out a B12 deficiency.

There is just one gold standard test for a B12 deficiency and that is a trial of B12 injections. If you are deficient then injections should produce a reduction in symptoms.

It really does sound as if your problems are not caused by a B12 deficiency. You and your GP really need to concentrate on other possibilities.

Maggiez profile image
Maggiez in reply to fbirder

Thank you. My gastro said it could possible be Functional Dyspepsia. It's just a guess. I do have lots of symptoms of PA but I know that doesn't mean I have it. Sure is frustrating. I've been trying to figure it out for almost three years. I do have the odd symptoms like balance issues, walking into walls and recently a swollen tongue.

fbirder profile image
fbirder in reply to Maggiez

And those symptoms (which do sound like a B12 deficiency) aren’t helped by injections?

Maggiez profile image
Maggiez in reply to fbirder

I have over 15 symptoms of PA but the injection haven’t changed anything. I feel like in the past when I had neuropathy in my back, getting an injection once a month did help. My symptoms got worse recently and I have been SI but no change. I will schedule an appointment with the hematologist but I have so much b12 in my system.

fbirder profile image
fbirder in reply to Maggiez

If you have had neuropathy, balance issues, clumsiness, then you would probably be better off seeing a neurologist, rather than a heamatologist.

Maggiez profile image
Maggiez in reply to fbirder

Thank you. I will be seeing both.

Sleepybunny profile image
Sleepybunny

Hi,

What type of endoscopy did you have?

I'm not medically trained but I think that only a capsule endoscopy looks at all the digestive tract.

B12 is absorbed in the terminal ileum of the gut. Damage to terminal ileum can affect B12 absorption.

I think that the terminal ileum is not examined during non capsule endoscopies.

NHS link about Endoscopy

nhs.uk/conditions/endoscopy/

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

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

b12deficiency.info/what-to-...

That fact that injecting B12 has not given you any relief from symptoms suggests you and your GP may want to look at other possibilities besides B12 deficiency.

"My gastro said I don't have b12 deficiency/PA"

What level was your serum B12 when last tested?

Have your iron, folate and vit D levels been checked?

Lots of B12 info in my replies on the the thread below eg symptoms, causes of B12 deficiency, B12 books, B12 websites, B12 articles/documents and a few hints about dealing with unhelpful GPs.

healthunlocked.com/pasoc/po...

Maggiez profile image
Maggiez in reply to Sleepybunny

Hi, thank you. I had a regular endoscopy. I am low on Vitamin D, which I'm working on. I'm normal with other vitamins on labs. I have lots of symptoms and no diagnosis. :/

Sleepybunny profile image
Sleepybunny in reply to Maggiez

"I'm normal with other vitamins on labs"

Have you seen the results of these tests?

One thing I learnt was to always check results for myself after being told everything was normal and then finding abnormal and borderline results when I got access to the results.

In relation to B12 deficiency, I look particularly at B12, folate, ferritin (and other iron tests) and Full Blood Count (known as Complete Blood Count in US).

B12 article from Mayo Clinic (US)

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

Table 1 in above article is about frequent misconceptions about B12 deficiency.

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

Two useful B12 books

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

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

Very comprehensive with lots of case studies.

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.

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.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

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