Follow up - loading doses done but now being told it's dietary?

[swoshbuck]

I posted a few days back after my doctor put me on b12 shots due to it being low.

Initially I was told I had low b12 back in September '16.

I then had a second follow up test for "antibodies".

They told me to not contact them and if there was an issue they would contact me.

They didn't contact me but several months later I was still having stomach problems.

I went back to the docs and they said my b12 is low again and booked me in for another follow up test which I assume was the same antibody test.

I did argue I'd already had it. They said they couldn't find any record of this!! At this point I am getting quite annoyed with my doctors and calling them every day to get the second antibody test results.

Finally they told me I needed to get shots for b12.

I've had my 6 loading doses and I'm booked in for another one in 3 months along with a blood test.

I asked the nurse for my antibody results today after my last loading shot and she said all it says is 'no antibodies detected'. ??? I was expecting some sort of numerical reading.

She then told me my b12 deficiency was due to diet.

This last statement I am very confused by. I am not vegan/veggie. I eat lots of meat, seafood, shellfish, cereals and since my September results have been taking b12 tablets almost every day. I have made a conscious effort to eat more foods rich in vitamin b12 for the last few months. I really do not think this is down to diet.

After nearly a decade of feeling ill I am at my wits end with trying to find out what's wrong with me. At least if I knew it was PA I would be able to research and understand what is going on.

Is it possible my low b12 is caused by something else other than diet if I have 'no detected antibodies'? It seems quite scientifical and a bit over my head.

Please help

[Gambit62 Administrator]

Your deficiency is obviously not dietary.

A negative result on the IFA test is a long way from proving that you don't have PA as a cause of deficiency as it produces false negatives 40-60% of the time depending on the assay method. The nurse you spoke to (like a lot of medical professionals) is obviously unaware that

a) the IFA test is not conclusive

b) PA is not the only non-dietary cause of B12 deficiency.

other causes include coeliacs, crohn's, drug interactions (includes PPIs), low stomach acidity and H pylori.

PA is the most likely cause of non-dietary B12 deficiency.

[Gambit62 Administrator in reply to Gambit62]

Unfortunately, because of the limitations of the IFA test, tracking down the exact cause may be quite difficult and there may also be more than one thing going on. The treatment initially is the same for all absorption problems. h pylori (and tape-worm infections) are treatable so only loading doses would be needed - other absorption problems can't be reversed so would mean injections for life.

[GGourmet]

You should not be told this is diet related. This is very unprofessional because, without formal diagnosis by a qualified professional, such an assertion is potentially dangerous to your health.

There are many possible causes and you mention stomach problems. You should be referred for more tests and probably by a gastroenterologist. This is because some causes are very serious. I mentioned in an earlier post that Ulcerative Colitis, Crohns and SIBO can all give rise to B12 deficiency but also create symptoms similar to IBS. Do not accept what you have been told and ask for that referral.

In the interim, you could try self medicating with methyl cobalamin, oral tablets available online from Nu U Nutrition. You may need to use 6 a day.

In terms of diet, many conditions prevent absorption of B12, no matter how much you consume in your diet.

Based upon your comments, the gastroenterologist might look at stomach acid by requesting a Gastrin test, because low acid can prevent to conversion process to a form absorbed in the ileum. They might then look at the conditions I mention above. This is important, as these conditions are potentially very serious.

[fbirder]

Ignore the nurse. If she knew how to tell if a deficiency was dietary or not then she'd be a doctor. And one of the Best in the world, because nobody else knows how to tell in the absence of a positive test for antibodies.

[clivealive Forum Support]

Hi swoshbuck

I'm sorry if I'm a bit confused but do you know if the "antibodies" test was for "Gastric anti parietal cell antibodies" or "Intrinsic Factor Antibodies"?

Also do you know whether your Folate level was tested?

Can you find out?

[swoshbuck in reply to clivealive]

Hi clivealive

It was 'intrinsic factor ab screening test' which displays the result as 'no antibody detected'.

My folate level was 'normal' at 5.6ng/ml and the range displayed is 5.4 - 24.

At first glance I seem to be on the low end of the scale for this but have been told I do not need to do anything.

I've been taking folic acid after some advice on here. I suppose it cannot hurt even if the doctors surgery have told me to not worry about this.

[clivealive Forum Support in reply to swoshbuck]

Folic acid and B12 help your iron to make red blood cells and it's important that they are kept in balance. Can you increase your intake of leafy green vegetables, sprouts, broccoli, asparagus, spinach, peas, beans etc to go with your "lots of meat, seafood, shellfish, cereals" you mentioned earlier?

[Cobalamin4Life]

Hi swoshbuck, the proof of your PA is probably in your stomach, not your diet. PA is a difficult thing, you're likely to hear a lot of senseless things along the way. If not for this forum and the PAS, I'd have lost my marbles dealing with such things.

A gastroenterologist would be your best resource since you have stomach problems.

Many people with PA don't seem to have obvious stomach symptoms or pain, they first get diagnosed by blood test results showing that they are anemic.

In my case and maybe yours, my stomach problems led to my diagnosis. I didn't understand how the two were related at first. My GI doctor did a test where looked into my stomach with a camera (endoscopy) and he found gastritis. The samples that were taken during that test were sent to a lab and came back showing near total loss of parietal cells (the cells that make intrinsic factor which is needed to make B12 from food or oral supplements utilizable, those cells are also responsible for making stomach acid...hence my stomach problems were from low stomach acid). That finding led to the diagnosis of probable autoimmune atrophic gastritis (meaning that cells that were supposed to be there weren't there anymore). He tested for both intrinsic factor antibodies and anti-parietal cell antibodies which were positive in my case. Sometimes those tests give false negatives, but if you've had an endoscopy showing the damage which explains your symptoms you really don't need much else for a diagnosis of PA.

As others have pointed out, there are other causes for b12 deficiency and/or difficulty absorbing b12 from the diet. I hope that this helps clarify somewhat just in case you're one of the few (like me) who first present with stomach/digestive symptoms. (Although I have felt very ill for decades and apparently just got used to it). In the meantime, ask for copies of any and all tests that you have done for your records. That's your right. Also keep a log of your symptoms.

I wish you the best!

[JTaberer]

I was told by my GP that mine was diet related without him asking anything about my diet, my IF was negative as was PC my level was 89 and I was refused injections after the loading dose and one booster as no cause identified! Camera showed nothing of significance they were checking for coeliacs samples were fragmented but they said was clear. I've had to get to the bottom of the cause of it myself if I'm not having injections the level drops so they've agreed to give them three monthly on gastro recommendation. I've got multiple genetic mutations causing reduced absorption, reduced recycling and using B12 up faster than I should. I've also folate issues level constantly at bottom of range but told it's normal! I'm MTHFR +\+ GP has now finally agreed to refer to St Thomas' for further testing as haematologist refused to see me as lastb bloods post injection were normal!! Maybe see if you can get a referral for further testing?