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. - trents replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

    2. - Scott Adams replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

    3. - Wheatwacked replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

    4. - jenniber replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      5

      Celiac support is hard to find

    5. - RMJ replied to TheDHhurts's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      need help understanding testing result for Naked Nutrition Creatine please

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

    • Total Members
      133,113
    • Most Online (within 30 mins)
      7,748

    Lisasla
    Newest Member
    Lisasla
    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

    • trents
      Wheatwacked, are you speaking of the use of potassium bromide and and azodicarbonamide as dough modifiers being controlling factor for what? Do you refer to celiac reactions to gluten or thyroid disease, kidney disease, GI cancers? 
    • Scott Adams
      Excess iodine supplements can cause significant health issues, primarily disrupting thyroid function. My daughter has issues with even small amounts of dietary iodine. While iodine is essential for thyroid hormone production, consistently consuming amounts far above the tolerable upper limit (1,100 mcg/day for adults) from high-dose supplements can trigger both hyperthyroidism or hypothyroidism, worsen autoimmune thyroid diseases like Hashimoto's, and lead to goiter. Other side effects include gastrointestinal distress. The risk is highest for individuals with pre-existing thyroid conditions, and while dietary iodine rarely reaches toxic levels, unsupervised high-dose supplementation is dangerous and should only be undertaken with medical guidance to avoid serious complications. It's best to check with your doctor before supplementing iodine.
    • Wheatwacked
      In Europe they have banned several dough modifiers potassium bromide and and azodicarbonamide.  Both linked to cancers.  Studies have linked potassium bromide to kidney, thyroid, and gastrointestinal cancers.  A ban on it in goes into effect in California in 2027. I suspect this, more than a specific strain of wheat to be controlling factor.  Sourdough natural fermentation conditions the dough without chemicals. Iodine was used in the US as a dough modifier until the 1970s. Since then iodine intake in the US dropped 50%.  Iodine is essential for thyroid hormones.  Thyroid hormone use for hypothyroidism has doubled in the United States from 1997 to 2016.   Clinical Thyroidology® for the Public In the UK, incidently, prescriptions for the thyroid hormone levothyroxine have increased by more than 12 million in a decade.  The Royal Pharmaceutical Society's official journal Standard thyroid tests will not show insufficient iodine intake.  Iodine 24 Hour Urine Test measures iodine excretion over a full day to evaluate iodine status and thyroid health. 75 year old male.  I tried adding seaweed into my diet and did get improvement in healing, muscle tone, skin; but in was not enough and I could not sustain it in my diet at the level intake I needed.  So I supplement 600 mcg Liquid Iodine (RDA 150 to 1000 mcg) per day.  It has turbocharged my recovery from 63 years of undiagnosed celiac disease.  Improvement in healing a non-healing sebaceous cyst. brain fog, vision, hair, skin, nails. Some with dermatitis herpetiformis celiac disease experience exacerbation of the rash with iodine. The Wolff-Chaikoff Effect Crying Wolf?
    • jenniber
      same! how amazing you have a friend who has celiac disease. i find myself wishing i had someone to talk about it with other than my partner (who has been so supportive regardless)
    • RMJ
      They don’t give a sample size (serving size is different from sample size) so it is hard to tell just what the result means.  However, the way the result is presented  does look like it is below the limit of what their test can measure, so that is good.
×
×
  • 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.