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. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

    2. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

    3. - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

    4. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      2

      Heat intolerant... Yikes


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,152
    • Most Online (within 30 mins)
      7,748

    denise.milillo
    Newest Member
    denise.milillo
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
    • Scott Adams
      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
×
×
  • 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.