Unsure as to what is causing vitamin B12 deficiency in my daughter?

That's very low and she would feel terrible.  She might have gluten intolerance which does not show up on antigen tests reliably. Sure preferably you could do them but diet test retest also helps. She would notice a clear difference in her bowels.

If he did a schilling's test he might prove she isn't absorbing it but then you know that already.

Some large group of people dont absorb cyanocobalamin. You have to make sure she gets the other forms initially hydroxy- cobalamin then if needed try methyl and adenosyl the two forms that are more metabolically active. There are four key components described recently.

I have just today checked the research on oral and sublinqual absorption. The dose varies from .5 mg to 2mg per day.

The latter gives the same results as the regular injection pattern.

I would have thought it unusual to give oral without the basic initial loading injections.

What exactly is she getting? The ulcers possiby show a wider deficiency. I assume she no longer has an infection, parasites giardia Lyme disease etc.

She won't raise those levels with the micro levels in food thats for sure.

But when you get it right she will probably feel heaps better.

Hello, I'm so sorry to hear your daughter is so unwell. It seems to me the GP should be giving her loading injections of B12 over a fortnight (usually six). This will pick up the drastic loss of B12 she's already suffering from. Then it is usual to go on to a regular top-up injection, three monthly or more frequently depending on the doctor and further blood tests to monitor levels. Continuing symptoms should also be taken into account.Some of us have lost the ability to absorb B12 via the stomach, so taking pills and eating well make no difference. We need injections for the rest of our lives. A lot of doctors fail to understand that young people can suffer from this too. I would strongly recommend the book "Pernicious Anaemia , the Forgotten Disease" by Martyn Hooper. He is the founder of the Pernicious Anaemia Society, and himself a sufferer. In the book he covers lots of reasons for low B12, and includes case studies as examples. There are oral and nasal sprays available that provide a supplement straight to the bloodstream, thus avoiding the digestive route, which is often not working properly or at all. I do wish you both well, and hope you get some real help with this for your daughter's sake. Marion

Hi e69543.

so sorry to hear what you and your daughter are experiencing. a b12 level of 50 pg/mL sounds worrying. i'd suggest that you ask to see a Specialist - a Heamatologist. ask your Dr to refer her. if he refuses change to another Dr. in the practice.

It used to be thought that some people lacked the ability to absorb b12 by the stomach. However they to can do so via oral supplements but only around 1% is absorbed that way ie by diffusion. That is why the doses are .5 - 2mg  daily whereas the injection is 1mg monthly or longer on a maintenance basis.

Thanks everyone, it's been a real pain for her and I just hope they'll be able to get to the bottom of it.

I think I'm going to persist for a referal to the hospital so they'll be able to sort it there. She's currently on cyanocobalamin 50mgc once per day. This was the highest dosage the doctor could prescribe her due to her age. The option of injections was discussed, but the doctor seemed hesitant to do so, although when she is retested in January and if the levels are still not up, he said this would be something that he would resort to. 

The ulcers have been a nightmare for the best part of 3 years, and she always gets huge ones, often 5 or 6 at a time and near her throat. 

I was also wondering if stomach pains were associated with vitamin b12 deficiency? She's had ongoing pains and changes in bowel movements for about a year and we thought it was related to something such as ibs. It's been a nightmare for her lately! 

50 mcg is totally indequate it means she absorbs if she can that type .5 mcg versus an average normal intake of 6 or so.

Put simply he is not treating it. You can import the right stuff cheaply as I do from the US or elsewhere in days even while you await an appointment.

It isn't rocket science many doctors simply are stuck in

a time warp of old ideas about pernicious anemia.

The B12 wouldn't cause her gut problems rather the reverse.

Gluten intolerance can inflame the ileum leading to failure to absorb B12 and further down a problem absorbing fat. Giving greasy diarhoea etc.

That can be difficult to diagnose as it doesn't reach the stage of coeliac disease. In my case 50 years.

She might have to give up gluten and have a low fat diet. You can test this yourself in a matter of days as to what provokes her.

The hospital presumably didn't find the cause and missed the B12 and did not instigate treatment. Regrettably you might have to take over yourself as do many. Obviously you can work with the dr and take advice but medicine is so complex that while some are up to date most are not and very often skimp on history taking or get it wrong, take a guess, or try some test and if that doesnt work give up.

There are heaps of resources to look up easily the points I have made.

Hi Your poor daughter she must feel terrible! that is such a low level of B12. Dont listen to GPs they do not have enough information on this Dr Chandy as some one mentioned has good advice as hes been studying patients for years! also look on www.b12deficiency.info very good information on here also videos and places that can help you complain about your daughters treatment.

I dont know whats causing my B12 deficiency either, i lost my job because of it 4 years ago as the doc was treating me for depression when i had a B12 level of 130.  i had my intrinsic factor checked it was satisfactory according to the doc but then i dont trust GPs anymore, my coeliac disease test came back negative and i have Vitamin D deficiency now just taken Vit D3 for 6 months and waiting for my blood test to come back to see if its gone up.

Please get your daughter some B12 injections ASAP as sometimes If B12 deficiency is left to long it causes damage that cant be reversed. Good Luck.

Hi,

I realize your original post is over a year old, but just wondering if you ever found out the cause for your daughter's B12 deficiency and gastrointestinal issues? My teenage son is experiencing similar issues and I have some suspicions that a H. Pylori infection may be the cause.