Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

B12 Levels


elaine33

Recommended Posts

elaine33 Apprentice

My mom was diagnosed last winter with a B12 deficiency. She lives 1500 miles from me with her husband so I don't know a lot of her medical history, just what I get from her husband as she has some dementia and she also refuses to talk about a lot of things. She has always had chronic health problems very similar to mine, so I have a lot of fear I am headed towards dementia eventually.

When I was told of her deficiency and had read up on it a little, I started supplementing for a couple of weeks with methylcobalamine. I was also in touch with a hematologist for some mild anemia issues and asked to be tested. I went off the B12 and about three weeks later had a B12 level done by my hematologist which he said came back normal at 520. I am reading that a lot of holistic people and even other countries like to see the level about 500, so even in that scope I am considered normal. I have some neurologic issues. I am wondering if the methylcobalamine I took in that two week period could have bumped me up, and how much?

Thanks for any help.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

bump ... Sorry, I don't have the answers, but I know there are people here who know a lot about the B12 issues.

trents Grand Master

How much were you taking? People who have B12 deficiencies usually have absorption problems (as in pernicious anemia) or are vegetarians and unless mega oral does are used (say 4 mg) so it might not impact your levels.

elaine33 Apprentice

I was taking very high doses (my sister has MS and she takes it this way). Averaging, I think I took 500 mcg every three days for about two weeks, so about 2000 to 2500 mcg?

Here is a link to what I was taking - don't know how mcg converts to mg ?

Open Original Shared Link

trents Grand Master

To convert mcg to mg divide by 1000. Thus, 500 mcg is .5 mg. You really weren't taking very much.

Are you a celiac?

Steve

Rusla Enthusiast

First; you need to know how low her B-12 is, if it is pernicious anemia it is very dangerous. She could be in the stages where she does not remember phone numbers etc. She may have prickles in her feet and hands that without B-12 will get considerably worse. She can be come paralyed with Pernicious anemia, I was two points away from that. After paralysis is irreversible brain damage which also starts on the way to paralysis.

There are still things I can't remember and I know when it is dropping because I get prickles in hands and feet and can't remember much.

She should be on shots to start with, if it is very bad then she may need iron infusions. As I did not want to take shots for the rest of my life because mine was that bad I would have to we tried normal pills but I could not absorb normal B-12 (should have been a clue to the dope GI I had at that time). I take sublingual B-12, they will go right into the blood stream, no swallowing they dissolve under the tongue, they taste good.

georgie Enthusiast

Rusla, What does this mean ? What level were you when dx ? I was 148 when dx and have had pins and needles in my feet for 15 years. I came very close to being permanently paralysed.

She can be come paralyed with Pernicious anemia, I was two points away from that.

Elaine, 500 isn't really a good score for B12. Near 1000 is better. And if you have neuro issues you may need a very high number ( ie over range ) to feel good. Keep taking the sublinguals but keep an eye on your B12 .


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



darlindeb25 Collaborator

I take 2400 mcg daily and I still have pins and needles in my feet, I am diagnosed with periphreal neuropathy in nearly my whole body, my hands and fingers go numb, and I get dizzy. For a person with neuropathy, normal levels are not anywhere near normal. I have a malabsorption problem with many vitamins, still after 5 yrs. I have been told that I may need to take more daily than I already do. I use liquid sublingual cyanacobalamin, for some reason the methylcobalamine gives me headaches. As I said--normal levels are not high enough for people who suffer B12 deficiencies. This is a very good forum for reading about B12 and neuropathy: Open Original Shared Link

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Dakota01 commented on Scott Adams's article in Winter 2026 Issue
      1

      Are Gluten-Free Processed Foods Making You Sick? (+Video)

    2. 0

      NCA Tennessee/Vanderbilt – Parents & Caregivers of Children with Celiac Virtual Meeting

    3. 0

      NCA Tennessee/Vanderbilt – Parents & Caregivers of Children with Celiac Virtual Meeting

    4. 0

      NCA Tennessee/Vanderbilt – Parents & Caregivers of Children with Celiac Virtual Meeting


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,455
    • Most Online (within 30 mins)
      7,748

    Suelle
    Newest Member
    Suelle
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • JoJo0611
      I have had my endoscopy this morning with biopsies. My consultant said that it looked like I did have coeliac disease from what he could see. I now have to wait 3 weeks for the biopsy results. Do I continue eating gluten till my follow appointment in three weeks.  
    • cristiana
      Hi @emzie and welcome to the forum. Perhaps could be residual inflammation and bloating that is causing sensitivity in that area.  I was diagnosed with coeliac disease in 2013 and I remember some years ago my sister telling me around that time that she had a lady in her church, also a coeliac, who  had real pain when she turned her torso in a certain direction whilst doing exercises, but otherwise was responding well to the gluten-free diet. As far as I know is still the picture of health. I often end up with pain in various parts of my gut if I eat too much rich food or certain types of fibre (for some reasons walnuts make my gut hurt, and rice cakes!) and and as a rule, the pain usually hangs around for a number of days, maybe up to a week.   When I bend over or turn, I can feel it.  I think this is actually due to my other diagnosis of IBS, for years I thought I had a rumbling appendix but I think it must have just been IBS.  Reading the experiences of other sufferers, it seems quite typical.  Sensitized gut, build up of gas - it stands to reason that the extra pressure of turning can increase the pain. When I am glutened I get a burning, gnawing pain in my stomach on and off for some days - it isn't constant, but it can take up a few hours of the day.  I believe this to be gastritis, but it seems to hurt irrespective of movement.   Anyway, you are doing the right thing to seek a professional opinion, though, so do let us know how you get on.   Meanwhile, might I suggest you drink peppermint tea, or try slices of fresh ginger in hot water? A lot of IBS sufferers say the former is very helpful in relieving cramps, etc, and the latter is very soothing on the stomach. Cristiana
    • emzie
      Hi! One of the usual symptoms I have with a gluten flare up has deviated a bit and I thought I'd search for advice/opinions here. Also to see if anyone goes through similar stuff. Monday all of a sudden I got really bad pain in my stomach (centre, right under the chest, where the duodenum would be located). I ended up having to throw up for 2 hours, my body was trying to get rid of something from all sides and it was just horrible. Since then I havent been nauseous anymore at all, but the pain has stayed and it always worsens the moment i start moving. The more I move the more it hurts, and when i rest longer it seems to dissapear (no movement). I've had this before, but years ago I think around when I first got diagnosed with coeliac, where each time I moved, my stomach would hurt, to the point where I went to the ER because doctors got freaked out. That only lasted 1 night though, and Now it's already wednesday, so 3 days since then, but the pain persists and remains leveled. it doesn't get crazy intense, but it's still uncomfortable to the point I cant really go out because Im afraid itll turn into a giant flare up again. I couldn't think of where I could possibly have been glutened at this bad of a level and why it hasn't passed yet. I went to the GP, and as long as I have no fever and the pain isnt insane then its fine which I havent had yet. Tomorrow im also seeing a gastroenterologist specialized in IBS and coeliac for the first time finally in years, but I thought I'd ask on here anyway because it still hasnt dissapeared. It also hurts when someone presses on it. Maybe it's just really inflamed/irritated. I'm just frustrated because I'm missing out on my uni lectures and I do a sports bachelor, so I can't get behind on stuff & next to that i'm also going to go to the beach with my boyfriend's family this weekend: ( 
    • Flash1970
      Hi. So sorry to hear about your shingles. There is a lidocaine cream that you can get at Walmart that will help numb the pain.  That's what I used for mine. It can't be put near your eyes or in your ears. I hope your doctor gave you valacyclovir which is an antiviral.  It does lessen the symptoms. If it is in your eyes,  see an ophthalmologist.  They have an antiviral eye drop that can be prescribed.  Shingles in the eye could cause blindness.  I was unsure whether you have celiac or not.  If you do,  follow the diet.  I believe that extra stress on your body does affect everything. Shingles can recur. If you start getting the warning signs of nerves tingling,  see the dr and start taking the valacyclovir to prevent a breakout. If I sound technical,  I am a retired pharmacist. 
    • Scott Adams
      You are right to be proactive, as research does indicate that individuals with celiac disease can have a higher predisposition to enamel defects, cavities, and periodontal issues, even with excellent oral hygiene. While many people with celiac successfully undergo orthodontic treatment without complication, your caution is valid. It may be beneficial to seek a consultation with an orthodontist who is familiar with managing patients with autoimmune conditions or who is willing to collaborate with your daughter's gastroenterologist or a periodontist. They can perform a thorough assessment of her current oral health, discuss your specific concerns about recession and decay, and create a tailored hygiene plan. This second opinion could provide a clearer risk-benefit analysis, helping you decide if addressing the cosmetic concern of the lower teeth is worth the potential risks for your daughter, especially if they are not currently affecting function or her confidence. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.