I have low B12 and was tested multiple times for pernicious anemia, all came back negative. I have a very good diet and had an endoscopy for Coeliac disease which came back negative. My specialist has decided to request a barium follow through test to look at my upper intestines as that's where b12 is absorbed. I've had life long severe constipation which is treated with laxatives. Is it worth having this test done? I'm just wondering whether to give up and leave all this alone. I've already had an endoscopy at a different hospital and this found nothing, I don't know what else this test is going to achieve. I'm currently receiving injections but they're not happy keeping me on these for life when they can't see why I got low in the first place.
Has anyone had a barium follow throug... - Pernicious Anaemi...
Has anyone had a barium follow through examination?
I'm in the same boat as you. Deficient and not absorbing but with no obvious cause and trying to figure out what's causing it. Have you happened to have MRI/CT imaging of your abdomen? Have you thought about/tested for a bacterial overgrowth or a parasite?
I'm not sure about the barium test, I can't really advise you. If what I hypothesise for myself - that the problem is microscopic - is true and also applies to you, then I don't see how it'll help. Plus there's a lot of radiation with those barium tests (something they didn't tell me when I had a barium swallow before). However we might have different causes so maybe it will show something, I dunno. I guess you won't know without trying.
I presume there was no sign of gastric atrophy when you had your endoscopy. That is the most common cause of absorption problems.
As for continuing injections - if they can't find the cause then they'll have to keep up the jabs. They'll just have to call it idiopathic B12 deficiency. In medicine idiopathic means 'we haven't a bloody clue'.
No everything was completely normal. Yeah they said they'd take me off them then test me every 3 months to see if it goes low again, suppose nothing else could be done. I just don't want an unnecessary test done.
Sorry this was meant for fbirder. I did something wrong
Ha Ha, sorry had to reply to you....my doctor is driving me crazy at the moment as he has no clue either!!
Hi CarlyS123. The B12 injections you have been having will cause your serum B12 levels to remain high, possibly for two years or longer. Once treatment with B12 has commenced, all the guidelines state that re-testing serum B12 levels is not advised (a useless activity).
You can still have the symptoms of B12 deficiency even with B12 levels that are right over the top of the reference range (mine currently run over 2000 and there have been reports here of others having B12 levels over 5000).
What counts is not how much B12 you have in your blood, but how much the cells are actively able to use.
The crucial thing here is, are you still having any of the symptoms of B12 deficiency? All the guidelines state that if you are having symptoms, then you should still be treated with B12. Irrespective of what your B12 levels are.
This is especially important if you have neurological symptoms (a list of the symptoms of B12 deficiency can be found on the Pernicious Anaemia Society website). If you have neurological symptoms, then these may become irreversible if your B12 treatment is not maintained. Your GP may not know is.
As Fbirder says, your B12 deficiency may be idiopathic but, even if the cause cannot be identified, your deficiency should still be treated.
The fact that they can't see why your B12 got low in the first place is NOT a good enough reason to stop your treatment.
Many people have to print and take guidelines to their GP's as most are very ill informed about B12 deficiency. Most have a real battle to get the B12 needed to get and stay well.
If your GP tries to stop your B12 and you still have symptoms, please ask him to treat you according to the guidelines - come back here if you need advice as to what these are.
If you are symptom free and your GP stops your B12, it would be a good idea to go back immediately, if your symptoms return, and ask for your B12 to be re-started. Especially if you have neurological symptoms - this cannot afford to wait!
Good luck and pop back if you need further help or advice.
Reasons for low B12 correct?
Just had Doc Appr with my 18yr old son. PA in the family! 
Stomach issues 
Neurology letter and advice on plan of action please to get some B12 treatment or a diagnosis
