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

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About 18 months ago, my teenage daughter (now 16) suddenly became tired constantly. She had no energy, was sleeping much more and was generally down and unwell. On top of this she had crops of mouth ulcers that would appear about 10 at a time, she was going through a rough stage. The doctors were puzzled but ran blood tests and the outcome; very low levels of vitamin b12. My daughter is not a vegan and eats healthily, a diet fortified with vitamin b12 food groups. She had a level of about 80 pg/mL. This meant nothing to me, I was aware it was low, but I was unsure how low. She was started on vitamin b12 oral supplements and no repeat blood tests were scheduled. I assumed the vitamins were working and would quickly fix the problem. They didn't, and ever since then she has had to endure very painful mouth ulcers among other symptoms. The doctor repeated bloods 3 months later and the results came back the same, around 80 pg/mL however tests for pernicious anaemia came back negative. Folate levels were all normal. He suggested to stay on the tablets and eat a diet with more vitamin b12 and see whether this would improve it. We followed this and it was still to no avail, we assumed it was something she'd just have to manage. 3 weeks ago is when I noticed she had gone very downhill, she was very pale, lethargic and just generally looked unwell. She had huge, very painful mouth ulcers and was hardly eating, she had ulcers right next to her tonsils. The doctor ran urgent blood tests and the b12 came back very low at 59 pg/mL. He agreed that this was extremely low and also ran tests for ceiliac disease and ferritin. Both were normal. He's established that her body isn't absorbing b12 but he wants to find an underlying cause for it, she seems to be a mystery. Chrone's was suggested as she was admitted to hospital for very painful stomach cramps and problems with bowel movements earlier in the year. I just want to see it sorted for her, she has important exams ahead and I hate seeing her so run down as she's otherwise a healthy teenager. Any advice or suggestions would be much appreciated.

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  • Posted

    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.

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    • Posted

      hi chris.

      i'm wondering why cyanocobalamin is still being prescribed if 50% of ppl do not absorb same. any ideas as to why the active forms are not prescribed instead?? do u know if it costs more: also, i'm curious if i can get a supply of the active form more cheaply & from where? presently, i'm on 0.5 mls of 'Hydroxy' subcut. on alternate days prescribed/supplied by my Environmental Practitioner (Doc). she doesn't do the active forms. i'm 'low normal' and GP not interested, although she has agreed to do the Intrinsic Factor test.

      thanks in advance

      Caitlin.

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  • Posted

    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
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  • Posted

    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.

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  • Posted

    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.
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  • Posted

    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! 

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    • Posted

      hi e69543.

      i can imagine the 'nightmare' ur daughter is going through. she does, however, seem to be very stocial with all that's happening to her.

      re: the b12 deficiency: it might be a good idea to have a look at Dr Chandy's protocol for b12 deficiency. Dr Chandy is a renowned expert in the subject. he lives/works in the UK. if u google in the following, it'll bring up his protocol which u could take along to your GP or/and your Specialist when u get the referral. google: B12 deficiency: Treatment Protocol.

      there's a lot of useful information on there. Dr Chandy works with Dr Hooper author on the subject as as well as other experts in the field. hope u get proper help soon.

      Positive thoughts to u.

      Caitlin.

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    • Posted

      This is screaming Crohn's. It can cause inflammation anywhere in the digestive tract including the mouth, but most commonly in the Terminal Ileum, which is the last part of the small bowel and where B12 is absorbed. B12 deficiency and mouth ulcers are common symptoms.

      I can't believe she's still not getting injections after proving that the tablets weren't working. I think you need to shout about that and also ask for a GI referral.

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  • Posted

    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.

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  • Posted

    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.

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  • Posted

    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.

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    • Posted

      I too am following this post as my 16 year old is also dealing with fatigue, abdominal issues, headaches and dizziness. Her adrenal glands are hyper (wierd.)

      I just started her on sublingual B complex as I don't think she's absorbing. I'll alternate the B complex with straight B12 sublingual and see what happens. Years of no answers and many prescribed meds that just made her way!

      Check your child's tongue. Very informative in detecting deficiencies. My daughter tongue is scalloped and shiny.

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    • Posted

      Hi, thanks for your reply. My son's blood was tested 2 weeks ago and he was found to be B12 deficient. He has been prescribed monthly injections of B12. Now to determine the cause. My doctor is not yet convinced that it is a malabsorption issue, but I really don't believe that it is from lack of B12 in his diet...he has always eaten a substantial amount of animal products. His doctor says he sees a significance number of patients with B12 deficiency, but that doesn't make sense to me that an otherwise healthy young person who consumes meat would be so deficient. My sons grandmother was recently treated for H. Pylori and I've read that it can be easily passed on to family members and can cause B12 malabsorption. Has your daughter been tested for any other gastrointestinal conditions? (I.e. Crohn's, celiac disease, gastritis, H. Pylori infection).

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    • Posted

      Negative on the H.Pylori but she has gluten intolerance for sure which causes gastrointestinal issues. She's doing noticeably better since switching to a sublingial B complex. She's having less abdominal pains and more energy. I definitely think she has nutritional absorption problems.

      3 of my 4 daughters are iron anemic, B12 and Vit. D deficient . I'm going to continue on the natural route for as long as we can. I don't want to just treat symptoms, but the core issue which I believe starts with autoimmune. I'm going to detox with her and have a supplement plan to start.

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    • Posted

      Hi Tina.

      Gluten intollerance can destroy the intestine wall, causing all sorts of gastrointestinal problems from mal-absorbtion to to IBS etc. etc. as others have pointed out, very little will be absorbed (even sublingually) if there's bowel mal-absorbtion. unforyunately, it's via b12 deficiency (Gluten intollerance) that caused my immune system to become problematic and I ended up sucumming to ME/CFS as a result. 

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