Vitamin B12

[Guest Shirelle]

Hi All,

Diagnosed with Celiac a year ago this May after experiencing severe anemia and advanced Osteoporosis along with all the other classic digestive symptoms. I have adhered very strictly to the gluten-free diet but within a few months after switching over to the gluten-free diet I began to experience alot of problems. Although I felt better and the anemia reversed I started having alot of problems with burning and tingling on my lips, face and sometimes tingling and pain in my hands and feet. I recently read a posting here where someone had talked about vitmain B12 defiencies. Has anyone experienced any of the types of problems. It's been a year now and I am beginning to get discouraged with these conditions and thinking I wa better off before.

Discouraged.

[Guest Shirelle]

Hi All,

Diagnosed with Celiac a year ago this May after experiencing severe anemia and advanced Osteoporosis along with all the other classic digestive symptoms. I have adhered very strictly to the gluten-free diet but within a few months after switching over to the gluten-free diet I began to experience alot of problems. Although I felt better and the anemia reversed I started having alot of problems with burning and tingling on my lips, face and sometimes tingling and pain in my hands and feet. I recently read a posting here where someone had talked about vitmain B12 defiencies. Has anyone experienced any of the types of problems. It's been a year now and I am beginning to get discouraged with these conditions and thinking I wa better off before.

Discouraged

[tiredofdoctors]

I have these symptoms, but I really don't have typical celiac . . . I DO know that Freeda vitamins are gluten-free, yeast free, everything-free(!) and they have a sublingual B12 -- I take it now. I used to do B12 injections. At one point, I had to give them to myself daily, but then they got the level to the point that I could go to weekly, etc., and now I can take the sublingual. You don't want to take any B12 supplements that you swallow whole . . . stomach acid pretty much destroys all available vitamin. When you take it sublingually (under your tongue), the mucous membranes absorb the vitamin directly (that's why they give you nitroglycerine under your tongue). I have been very happy with the Freeda vitamins I purchased . . . I got prenatal (although I'm not pregnant -- my daughter is getting married, I'm trying to grow my hair longer, and to satiate her insistance that prenatal vitamins work better, I got those!), CoQ10, and B12. Another funny thing about them -- they smell a LITTLE like vitamins, but they don't have that normal "icky" smell that regular vitamins do.

[Guest Shirelle]

Hi All,

Diagnosed with Celiac a year ago this May after experiencing severe anemia and advanced Osteoporosis along with all the other classic digestive symptoms. I have adhered very strictly to the gluten-free diet but within a few months after switching over to the gluten-free diet I began to experience alot of problems. Although I felt better and the anemia reversed I started having alot of problems with burning and tingling on my lips, face and sometimes tingling and pain in my hands and feet. I recently read a posting here where someone had talked about vitmain B12 defiencies. Has anyone experienced any of the types of problems. It's been a year now and I am beginning to get discouraged with these conditions and thinking I wa better off before.

Discouraged.

Thanks for the reply Lynne - I will look for the Freeda Vitamins.

[2kids4me]

B12 deficiency can cause the symptoms you describe. Taking oral doses will not help if you have "pernicious anemia" - B12 is absorbed when cells in your stomach (gastric parietal cells) produce a factor (intrinsic factor) that allow B12 to be absorbed - In pernicious anemia the gastic parietal cells have been damaged/destroyed by the immune system and is not uncommon in celiacs, seniors, and diabetics.

I need B 12 injections once a month. I had numbness, tingling in my scalp and down one side of my face...... because I was diabetic, the doctor told me it was diabetic neuropathy... couple of months later I developed severe fatigue and dropping stuff, depth perception was altered. I went back to the doctor and he said he would do a trial of B 12 (guess I looked pretty pathetic) ...Within 48 hours of the first shot, I had energy and was less klutzy, the numbness tingling took about 3 -4 weeks before it went away. I do have diabetic neuropathy but this was different - more of like my arm or face was "asleep". Diabetic neuropathy is painful when it first starts - more like stepping on tacks or sudden jabs.

Use pernicious anemia as your search words and you may find some good sites that are helpful to you

[tiredofdoctors]

I have pernicious anemia, too . . . didn't want to scare her. I'm still not sure about my levels on the sublingual . . . am going to the endocrinologist to see how they are. May have to go back on injections, but hope not . . . I have a factor VIII deficiency, and so when I'm on the injections, my legs look like a kaleidoscope of different shades of bruising! I have neuropathy from all the brain diagnoses, no thyroid, so it's hard to tell from symptoms if it's working . . .

[floridanative]

My B12 def. cause me to get dizzy, fall down and run into things at the very end before my dx. Turned out my B12 level was around 300 which in most cases docs consider normal though new studies show levels under 400 to be dangerous. As we all know most docs barely have time to see all their patients, much less read up on the latest studies of anything. In any case, I have been taking Walgreen's brand (gluten-free) of B12 since March and my level in June was already up to almost 800. Many people told me that I could not take an otc supplement as I would not absorb it but everyone is different and I'm absorbing a lot of what I'm taking, due to being gluten free now of course. Also, after taking iron for almost a year with little improvement in iron/stores I'm not longer technically anemic but have to stay on iron for a while as the doc wants me to build it way up since it will drop once I stop it altogether. I think the longer you had Celiac undx'd has a lot to do with how fast you heal and in turn start absorbing nutrients again. Good luck to you. I know it sucks that you have to be your own doctor these days. After all this is America where we're taught our medical system is the best....then you learn the hard way that is sooooooooo not true!

I should add that I do not have pernicious anemia.

[penguin]

Erm, so I guess my B-12 level of 277 isn't good?

[tiredofdoctors]

Looks like 277 isn't good AT ALL. Funny, that's around what mine was when one doc said I was "fine". Hmmmmm.......

[penguin]

Looks like 277 isn't good AT ALL. Funny, that's around what mine was when one doc said I was "fine". Hmmmmm.......

That explains occasionally numb toes, nose, tingling on my scalp and my inability to walk around a corner without hitting it

[tiredofdoctors]

Sounds like you're on the right track . . . don't you hate it when you find stuff out like that AFTER you've had it for awhile . . . I always think: "The doctor should have known that . . . if it's common knowledge, then I expect them to have it memorized!!!"

[Guest Shirelle]

I appreciate all the input - in a way I am hoping that the B12 is what is causing all the problems. So far it's been the "mystery illness" that have sent me for brian MRI's (to rule out MS - just had that done today), a test for Lupus and a host of other tests and Doctors. It's been a nightmare and it seems alot of doctors don't seem to be informed on the Celiac Disease aspect. It took several years for them to diagnose it. I am going to check into the B12 problem and see if I can get some relief.

[Guest Shirelle]

Yes I do hate that - I most likely would not have the Osteoporosis had I known about this awhile ago. I guess though I should be glad my doctor discovered it though because I had never heard of it before. The reality is that we have to be our own advocates and seek out all the information we can get on our own. I am a newcomer to this forum but I'm glad I found it - it's been very helpful and I feel a little more encouraged.

[tiredofdoctors]

I went through the whole MS thing, too. Had MRI after MRI . . . finally, they nailed that it was Perkinje cell damage in the cerebellum of my brain . . . my antigliadin antibodies were REALLY high for quite some time. Also have so many different mitigating diseases processes going that nailing a treatment plan was a pain in the butt! Think we're on our way, though . . . at least hope so . . . .

[Guest Shirelle]

Well - what can we do but keep trying. I am determined to get to the bottom of the problems I am having and resolve them. I love the quote in you signature "I'll try tomorrow". I failed so far but I will try again tomorrow. Sounds like you have alot of things going there and you're staying positive. Good for You.

[marciab]

Does anyone know how often you need a B12 shot ? I have seen anywhere from daily to monthly. Mine was low back in May and my doc wants me to get one every month.

How do I know if once a month is enough ? And do your numbers come back up immediately after the shot or does it take awhile ?

Thanks, Marcia

[Deej]

Me too. Misdiagnosed with MS. Arrrrrgh.

Eventually, when I felt I was having a stroke/heart attack I was rushed to emergency where they discovered my B12 level was unbelievably low. Massive B12 therapy. First daily, then every second day, then weekly, now (and for many years) monthly. Diagnosed with pernicious anemia.

[ms-sillyak-screwed]

I give myself B-12 Shots with Folic Acid every week. It's no big deal. I was due yesterday and forgot. Thanks for the reminder.

The shots help a lot. The twitching feeling in my face stopped along with other things. My STOOLS look normal (the next day), formed, brown and very normal. I have more energy and feel better all around.

There is another thing that helps -- when I went to the allergy doc they added something elese to the shot called panathanic acid. I thing I spelled it wrong. Mainstream docs don't prescribe it...

When I go to the doc the shots are $45 -$50 each week. If I give them to myself it's $5 for a months supply and the needles are another $2.

[marycubs]

My B12 was at 307 several months ago and the doctor said it was fine and never retested me...saw the posting that new studies show under 400 may mean trouble.

I'm going to a new doctor soon - am looking at all of my lab work from the last year (since being diagnosed with celiac disease May 2006) - and making a list of questions for her. B12 is on my list.

I sometimes get the tingley feeling - and also bump into things - have been bruising easily too. I never knew that was part of B12 def. ( I am iron deficient - and the supplements haven't helped too much - another question for my doctor)

Is ringing in the ears anything that is associated with a deficiency ? Mine started a few months ago and havent' stopped. I know tinnitus (sp?) isn't uncommon - but wonder if it's associated with celiac disease since I never had it before ???

thanks -

Mary

[lindalee]

That explains occasionally numb toes, nose, tingling on my scalp and my inability to walk around a corner without hitting it

Numb toes could be low B12? LL

[SandraB]

Well - what can we do but keep trying. I am determined to get to the bottom of the problems I am having and resolve them. I love the quote in you signature "I'll try tomorrow". I failed so far but I will try again tomorrow. Sounds like you have alot of things going there and you're staying positive. Good for You.

In the last week I started to take magnesium supplements. I've tried all kinds of supplements without noticing any effects, but this was different.

FIRST - and most relevant to this discussion - I'd been experiencing terrible pins and needles in my limbs at night - whenever I turned over I'd get them in the arm I was lying on, or the arm ccovering my eyes, or the leg under the other one - it made it harder to sleep and for a very restless night. The magnesium supplements have banished this problem like magic. One night I went to a party, too much wine - the pins and needles were back. Alcohol, coffee and stress all deplete magnesium. Extra magnesium, the tingling in my limbs had gone again the next night.

SECOND - equally welcome and very peculiar result. For months (to some degree all my life) I've had chocolate cravings but recently they became overwhelming. I was sneaking off to the shops to buy chocolate bars like an alcoholic goes to buy booze. When I could stop the urge I found myself falling on my young son's Nutella jar. The magnesium pills got rid of that craving overnight. Magnesium is a big ingredient in chocolate, I read on the Internet. Chocolate craving known symptom of Magnesium deficiency. Why did my mother never tell me this? I think she may have it herself.

THIRD - my blood sugar seems far better regulated.

FOURTH - a very noticeable improvement in energy.

Internet sites say you shouldn't take magnesium supplements if you have kidney or heart problems - not without seeing your doctor. Some sites also recommend taking magnesium with B vitamins (there'll be others on this forum way better informed on that than I am). But reading up on magnesium deficiency it's striking how many conditions it seems to be associated with that are also associated with celiac disease - I wonder whether there's a malabsorbtion issue for celiacs?

Anyway - worth a try, certainly if you have any of my symptoms. Magnesium ddoesn't spring to mind as being associated with tingling and twitches but apparently it is.

Hope this helps someone.

SandraB

[rinne]

Shirelle, welcome and thank you for the question. I am new too and learn so much from the questions and answers.

[lindalee]

In the last week I started to take magnesium supplements. I've tried all kinds of supplements without noticing any effects, but this was different.

FIRST - and most relevant to this discussion - I'd been experiencing terrible pins and needles in my limbs at night - whenever I turned over I'd get them in the arm I was lying on, or the arm ccovering my eyes, or the leg under the other one - it made it harder to sleep and for a very restless night. The magnesium supplements have banished this problem like magic. One night I went to a party, too much wine - the pins and needles were back. Alcohol, coffee and stress all deplete magnesium. Extra magnesium, the tingling in my limbs had gone again the next night.

SECOND - equally welcome and very peculiar result. For months (to some degree all my life) I've had chocolate cravings but recently they became overwhelming. I was sneaking off to the shops to buy chocolate bars like an alcoholic goes to buy booze. When I could stop the urge I found myself falling on my young son's Nutella jar. The magnesium pills got rid of that craving overnight. Magnesium is a big ingredient in chocolate, I read on the Internet. Chocolate craving known symptom of Magnesium deficiency. Why did my mother never tell me this? I think she may have it herself.

THIRD - my blood sugar seems far better regulated.

FOURTH - a very noticeable improvement in energy.

Internet sites say you shouldn't take magnesium supplements if you have kidney or heart problems - not without seeing your doctor. Some sites also recommend taking magnesium with B vitamins (there'll be others on this forum way better informed on that than I am). But reading up on magnesium deficiency it's striking how many conditions it seems to be associated with that are also associated with celiac disease - I wonder whether there's a malabsorbtion issue for celiacs?

Anyway - worth a try, certainly if you have any of my symptoms. Magnesium ddoesn't spring to mind as being associated with tingling and twitches but apparently it is.

Hope this helps someone.

SandraB

Thanks for the info. Should have taken my mag. last night(had a chopin martini at Chang's last night). I always thought chocolate cravings meant lack of calcium but makes sense-mag. makes calcium work. I started adding mag. when I had no energy and also to protect the heart. What is the relationship of anemia to B12? LindaLee

[Guest Shirelle]

Hi All,

I'm back and with bad news - test results from brain MRI indicates MS. I am going for the spinal MRI Sunday morning and according to the doctor this will confirm MS if results are positive. Has anyone been misdiagnosed with MS and found it to be the B vitamins? Also, I have even read there is a suspected connection between MS and Celiac. This is only the first Doctor opinion and I will be going for another. Any input would be helpful.

[Lymetoo]

You might also check into candida. I get tingling and burning in my face and lips when I've eaten something with sugar in it.