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 Limit Question


katrina500

Recommended Posts

katrina500 Rookie

Hello, my earlier post explained that I had accidentally had gluten about a week ago. My symptoms are also telling me that my B12 is also low.

My blood tests always come back as normal but just within the normal range. I also drink too much alcohol about three or four nights of the week and I know that, coupled with celiac disease, hinders absorption. My Doctor won't give me B12 injections because of my blood results.

I have B12 supplements which are 1,000 mcg per tablet. Do you think it would be okay if I took 3 or 4 of these a day? It recommends one on the packet. I haven't taken them for about 5 months.

Thank you. ?


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

There are sublingual tablets that go as high as 5000. I don't think it would do any harm to take a couple daily for a bit. B12 is a water soluable vitamin so you would simply excrete the excess.

mamaw Community Regular

Some people can't get enough B-12 via pill or under the tongue. It just doesn't work for some of us....I had been taking B-12 for years to no avail. Wasting money trying to find one that would help me. My blood levels were always within range , after years of problems & a B-12 level of around 450 ( in reference range) I fought to get my B-12 levels to around 1000...I started out with monthly injections for over a year, my level would go up to around 500 or so. I fought again & went to weekly injections. It took me a year before I ever reached 1000... I have just started bi_monthly injections to see if I'm able to keep my levels at 1000, too soon to tell as yet... But the doc now agrees I don't absorb properly so he is willing & wants my level at 1000 & a constant 1000..

another thing is to check your vit D level...And cut down on the booze.....

Most of us at same time has had to fight with our doctor......

foam Apprentice

Some people can't get enough B-12 via pill or under the tongue. It just doesn't work for some of us....I had been taking B-12 for years to no avail. Wasting money trying to find one that would help me. My blood levels were always within range , after years of problems & a B-12 level of around 450 ( in reference range) I fought to get my B-12 levels to around 1000...I started out with monthly injections for over a year, my level would go up to around 500 or so. I fought again & went to weekly injections. It took me a year before I ever reached 1000... I have just started bi_monthly injections to see if I'm able to keep my levels at 1000, too soon to tell as yet... But the doc now agrees I don't absorb properly so he is willing & wants my level at 1000 & a constant 1000..

another thing is to check your vit D level...And cut down on the booze.....

Most of us at same time has had to fight with our doctor......

I've been having the injections of and on for a few years, 3 or 4 injection per year and my B12 level has gone from effectively nothing (measured ~110) to between 900-1000 which is the level my Doctor and I are happy with. It helped me out a bit in the short term (I feel great for a week or two after the injections) but it was the Vitamin D deficiency which caused most of my problems and it's the Vitamin D that is really leading my recovery. With Vitamin D I've been taking 50,000 IU each two weeks for nearly a year and I'm still quite low in Vitamin D (last test a couple months ago was 74) but I'm hoping to be over 100 on this weeks test), we are aiming to hold around 150 on the Vitamin D for several years while I recover. Most people don't need nearly that much Vit D to recover there Vitamin D level if they are simply lacking in Vitamin D.

My eosinophil level was 38% after being Gluten free a few months and 32% a few weeks after starting on the Vitamin D, who knows what it was like while still eating Gluten... it's been very high for a very long time and has caused me to have a tumour develop in my neck. I wasn't far from dying before I stopped eating gluten it so I guess pretty high. I'm hoping my eosinophil count will be lower than 30% on the latest tet I've had since I haven't had one for about 6 months and my health has been steadily improving and my diet has been damm near perfect the last 6 months, 99% unprocessed foods. This can be a very slow and long process to fix your gut... I'm well into my 2nd year gluten free, maybe 3 years already? and still have a long way to go to be perfectly healthy.

frieze Community Regular

I've been having the injections of and on for a few years, 3 or 4 injection per year and my B12 level has gone from effectively nothing (measured ~110) to between 900-1000 which is the level my Doctor and I are happy with. It helped me out a bit in the short term (I feel great for a week or two after the injections) but it was the Vitamin D deficiency which caused most of my problems and it's the Vitamin D that is really leading my recovery. With Vitamin D I've been taking 50,000 IU each two weeks for nearly a year and I'm still quite low in Vitamin D (last test a couple months ago was 74) but I'm hoping to be over 100 on this weeks test), we are aiming to hold around 150 on the Vitamin D for several years while I recover. Most people don't need nearly that much Vit D to recover there Vitamin D level if they are simply lacking in Vitamin D.

My eosinophil level was 38% after being Gluten free a few months and 32% a few weeks after starting on the Vitamin D, who knows what it was like while still eating Gluten... it's been very high for a very long time and has caused me to have a tumour develop in my neck. I wasn't far from dying before I stopped eating gluten it so I guess pretty high. I'm hoping my eosinophil count will be lower than 30% on the latest tet I've had since I haven't had one for about 6 months and my health has been steadily improving and my diet has been damm near perfect the last 6 months, 99% unprocessed foods. This can be a very slow and long process to fix your gut... I'm well into my 2nd year gluten free, maybe 3 years already? and still have a long way to go to be perfectly healthy.

If you are taking prescription Vitamin D, you would be better served going to the health food store, or event supermarket, and getting D3. The script version is D2, unless otherwise stated. good luck

foam Apprentice

Hi no, I'm on 50,000 IU D3 capsules, I live in a fairly dark windy and cold place so the majority of the population are on D3 supplements, the capsules are made locally. Usually 4 capsules brings most peoples level up to 100, just hasn't worked as quickly for me.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,017
    • Most Online (within 30 mins)
      7,748

    Sjcucinotta
    Newest Member
    Sjcucinotta
    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

    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
    • knitty kitty
      Please do more research before you settle on nicotine. Dr. Paul New house is a psychiatrist.  His latest study involves the effect of nicotine patches on Late Life Depression which has reached no long term conclusions about the benefits.   Effects of open-label transdermal nicotine antidepressant augmentation on affective symptoms and executive function in late-life depression https://pubmed.ncbi.nlm.nih.gov/39009312/   I'm approaching the subject from the Microbiologist's point of view which shows nicotine blocks Thiamine B1 uptake and usage:   Chronic Nicotine Exposure In Vivo and In Vitro Inhibits Vitamin B1 (Thiamin) Uptake by Pancreatic Acinar Cells https://pubmed.ncbi.nlm.nih.gov/26633299/   While supplementation with thiamine in the form Benfotiamine can protect from damage done by  nicotine: Benfotiamine attenuates nicotine and uric acid-induced vascular endothelial dysfunction in the rat https://pubmed.ncbi.nlm.nih.gov/18951979/   I suggest you study the beneficial effects of Thiamine (Benfotiamine and TTFD) on the body and mental health done by Dr. Derrick Lonsdale and Dr. Chandler Marrs.  Dr. Lonsdale had studied thiamine over fifty years.   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ I suggest you read their book Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition.     Celiac Disease is a disease of malabsorption causing malnutrition.  Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
    • sleuth
      Thanks for your response.  Everything you mentioned he is and has been doing.  Tobacco is not the same as nicotine.  Nicotine, in the form of a patch, does not cause gastrointestinal irritation.  Smoking does. He is not smoking.  Please do your research before stating false information. Dr. Paul Newhouse has been doing research on nicotine the last 40 years at Vanderbilt University Medical Center.  
    • Jmartes71
      Im so frustrated and still getting the run around trying to reprove my celiac disease which my past primary ignored for 25 years.I understand that theres a ray of medical that doctors are limited too but not listening and telling the patient ( me) that im not as sensitive as I think and NOT celiac!Correction Mr white coat its not what I think but for cause and affect and past test that are not sticking in my medical records.I get sick violently with foods consumed, not eating the foods will show Im fabulous. After many blood draws and going through doctors I have the HLA- DQ2 positive which I read in a study that Iran conducted that the severity in celiac is in that gene.Im glutenfree and dealing with related issues which core issue of celiac isn't addressed. My skin, right eye, left leg diagestive issues affected. I have high blood pressure because im in pain.Im waisting my time on trying to reprove that Im celiac which is not a disease I want, but unfortunately have.It  has taken over my life personally and professionally. How do I stop getting medically gaslight and get the help needed to bounce back if I ever do bounce back to normal? I thought I was in good care with " celiac specialist " but in her eyes Im good.Im NOT.Sibo positive, IBS, Chronic Fatigue just to name a few and its all related to what I like to call a ghost disease ( celiac) since doctors don't seem to take it seriously. 
    • trents
      @Martha Mitchell, your reaction to the lens implant with gluten sounds like it could be an allergic reaction rather than a celiac reaction. It is possible for a celiac to be also allergic to gluten as it is a protein component in wheat, barley and rye.
×
×
  • 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.