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. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      32

      My journey is it gluten or fiber?

    2. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      32

      My journey is it gluten or fiber?

    3. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      High TTG-IgG and Normal TTG-IgA

    4. - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      High TTG-IgG and Normal TTG-IgA

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,844
    • Most Online (within 30 mins)
      7,748

    donnawebb265
    Newest Member
    donnawebb265
    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

    • xxnonamexx
      I made it through the holiday w/o being glutened. I had my brother cook with gluten-free breadcrumbs and I didn't get sick. I baked cookies with gluten-free flour and had dry ingredients for cookies in ziplock bag. I also made gluten cookies as well and guess I did good washing to avoid CC. My wife also went to a french bakery and bought a gluten-free flourless chocolate cake dedicated gluten-free it was out of this world. 
    • xxnonamexx
      What do you mean it would not allow any celiac to eat gluten again. I think if this helps cross contamination when eating out at a non dedicated gluten-free restaurant this would be nice not to encounter the pains. But is their a daily enzyme to take to help strengthen the digestive system? 
    • SamAlvi
      Hi, thank you for the reply. Unfortunately, no other antibody tests were ordered. I am a 32-year-old male. About two months ago, I ate pancakes and then developed severe diarrhea that lasted the entire day. At night, I became unconscious due to fluid loss and was admitted to the ER, where I received IV fluids. Two days later, I ate bread again and once more developed severe diarrhea. I ended up in the ER again and received IV fluids. In my country, Pakistan, doctors are unfortunately not very thorough, so they treated me for a stomach infection. I visited three or four doctors, including a gastroenterologist, but it seemed like they just wanted to keep me on medications and IV fluids. Eventually, I did some digging myself and started connecting the dots. For years, I’ve had excessive gas buildup and frequent loose stools, but I never paid much attention to it. I also cannot easily digest dairy products. Two years ago, I had a CBC test that showed iron deficiency. My doctor told me to eat more meat and said it was nothing serious. However, for the past five years, I’ve also had severe motion sickness, which I never experienced before. Whenever I get on a bus or in a car, I sometimes lose consciousness for 10–20 seconds and wake up sweaty, and occasionally I feel the need to vomit. After more research on the internet, I came across gluten and celiac disease, so I got two related tests (TTG-IgA & TTG IgG) done along with a stool test and another CBC. The stool test showed weakly positive blood. Ever since eating those pancakes and bread, I’ve had a burning sensation in my gut. My doctor reviewed my tests, he told me to completely stop eating gluten and started me on IV fluids for 20 days, saying that I had severe inflammation in my gut. It has now been two months since I quit gluten, and I’m still not sure whether this is celiac disease or gluten intolerance. I don’t really trust doctors in Pakistan, so I thought I might get some help here.
    • trents
      Welcome to the celiac.com community, @SamAlvi! Were there any other antibody tests ordered? Particularly, was there a "total IGA" test ordered to check for IGA deficiency. When people are IGA deficient, celiac panel IGA test scores, such as the TTG-IGA, are likely not valid. If a total IGA test was not ordered, I would request such to be done. Note: "Total IGA" goes by other names as well. I will include a primer on celiac disease antibody testing which does a good job in covering the nomenclature variations connected with the various tests. Elevated IGG scores can certainly indicate celiac disease but they are more likely than elevated IGA tests to be caused by something else.  
    • GlorietaKaro
      Thank you— yes, valid and essential— The issue either doctors is that every one I have tried to talk to about this has essentially rolled their eyes and dismissed me as a hypochondriac, which gets discouraging. I believe a diagnosis would help me to be taken seriously by doctors as well as being validating, but can carry on without it.    There are many, probably most people in my area of my age and gender, who avoid gluten, but many just avoid it casually— eating the occasional plate of wheat pasta or a delicious-looking dessert, or baking cookies with wheat flour for gatherings.  That is not an option for me. I don’t eat other people’s cooking or go to restaurants that do not have strict cross- contamination procedures. It can be boring and lonely, and people do look at me as if I am being a bit dramatic but weeks of symptoms after a single small exposure has taught me to respect my experience.    Thank you very much for your response— sometimes I just need to hear that I am not crazy—
×
×
  • 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.