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 Questions

mindyandy420

Recommended Posts

mindyandy420 Apprentice
mindyandy420
Posted

B12 levels according to the labs are from 200-900. Why is it so wide of a range? Well I have not had mine tested lately but my level before was 453...normal. My vitamin D was 17 :( I think it has gone up since. My ferritin level was 43. Not to low but could be better.

I was wondering what your B12 levels were and how did you feel?

Thanks guys!

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

Celiac.com Sponsor (A8-M):


leadmeastray88 Contributor
leadmeastray88
Posted

Before I went gluten-free, my B12 level was at 80. One doc told me I should be on shots, another that I should just be on sublingual supplements. I stuck with the supplements.

After going gluten-free and supplementing for about 6 months, my B12 was up to 800.

As for how I felt, I started both the diet and the supplements around the same time so I can't say which worked faster! Before I was extremely tired even after 10 hours of sleep, now I don't have that problem anymore..

I hope that helps!

Sparkle1988 Rookie
Sparkle1988
Posted

I have not been diagnosed with Celiac but am currently getting tested for it.

My B12 was at 86 around a year ago so I went on B12 vitamins for around 6months. When I went back to get my levels tested again it was up to 370. I have no idea what level I am at now though but even when it went up to 370 I still felt so tired.

darlindeb25 Collaborator
darlindeb25
Posted

As is true of the majority of celiac/gluten intolerants, doctors didn't believe me, or thought I was just nuts. I researched and researched. I started taking B12 9 months or so before a doctor tested my B12. I was taking 1000mcg daily then, and my level came back 1237. Over the years I increased my B12 to 3000mcg, then to 5000mcg. Last summer my neuro tested my level and after taking 5000mcg daily for several months, my level was 1015, a drop of over 200 points.

Finally, after nearly 5 years of B12, my neuropathy is showing improvement. My neuro told me to continue with the dose I am taking.

My Vitamin D is 26, or was. I have been taking 2000IU's for nearly a year, will have it tested again at the end of August. My ferritin level is 22, I am also taking iron.

Archived

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

Go to topic listing

  • 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
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      1

      New issue

      @Jmartes71, Sorry you've been feeling so poorly. Are you taking any medication to treat the SIBO? Are you taking any Benfotiamine? Benfotiamine will help get control of the SIBO. Thiamine deficiency has symptoms in common with MS. Have you had your gas appliances checked for gas leaks and exhaust fume leaks? Carbon Monoxide poisoning...
    2. knitty kitty
      - knitty kitty replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Blood Test for Celiac wheat type matters?

      European wheat is often a "soft wheat" variety which contains less gluten than "hard wheat" varieties found in the States. In European countries, different cooking methods and longer fermentation (rising or proofing) times allow for further breakdown of gluten peptides. Wheat in the States is a blend of hard and soft wheat. Gluten content can...
    3. trents
      - trents replied to Charlie1946's topic in Related Issues & Disorders
      38

      Severe severe mouth pain

      From my own experience and that of others who have tried to discontinue PPI use, I think your taper down plan is much too aggressive. It took me months of very incremental tapering to get to the point where I felt I was succeeding and even then I had to rely some days on TUMS to squelch flareups. After about a year I felt I had finally won the battle. Rebound...
    4. knitty kitty
      - knitty kitty replied to Charlie1946's topic in Related Issues & Disorders
      38

      Severe severe mouth pain

      Talk to your doctor about switching to an antihistamine, and supplementing essential vitamins and minerals. Dietary changes (low carb/paleo) may be beneficial for you. Have you talked to a dietician or nutritionist about a nutrient dense gluten free diet? It's harder to get all the vitamins needed from a gluten free diet. Gluten containing products are...
    5. Caligirl57
      - Caligirl57 replied to Charlie1946's topic in Related Issues & Disorders
      38

      Severe severe mouth pain

      I’m pretty sure they do. I have been on myfortic, tacrolimus since 2021 for my liver transplant and added prednisone after kidney transplant. I’m going to try to cut back omeprazole to 20 mg a day and then after a week try to stop altogether. Thank you for your help.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,084
    • Most Online (within 30 mins)
      7,748
    BlueIcyRose
    Newest Member
    BlueIcyRose
    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

    • knitty kitty
      New issue

      By knitty kitty · Posted

      @Jmartes71, Sorry you've been feeling so poorly.   Are you taking any medication to treat the SIBO?   Are you taking any Benfotiamine?  Benfotiamine will help get control of the SIBO.  Thiamine deficiency has symptoms in common with MS. Have you had your gas appliances checked for gas leaks and exhaust fume leaks?  Carbon Monoxide poisoning can cause the same symptoms as the flu and glutening.  Doctors have to check venous blood (not arterial) for carbon monoxide.  Are other inhabitants sick, or just you?  Do they leave the house and get fresh air which relieves their symptoms?  
    • knitty kitty
      Blood Test for Celiac wheat type matters?

      By knitty kitty · Posted

      European wheat is often a "soft wheat" variety which contains less gluten than "hard wheat" varieties found in the States.   In European countries, different cooking methods and longer  fermentation (rising or proofing) times allow for further breakdown of gluten peptides. Wheat in the States is a blend of hard and soft wheat.  Gluten content can vary according to where the wheat was grown, growing conditions, when harvested, and local preference, so a blend of both hard and soft wheat is used to make a uniform product.   I moved around quite a bit as a child in a military family.  I had different reactions to gluten in different areas of the country every time we moved.  I believe some wheat breeds and blends are able to provoke a worse immune response than others.   Since European soft wheat doesn't contain as much gluten as American wheat, you may try increasing your intake of your soft wheat products.  A minimum of ten grams of gluten is required to get a sufficient immunological response so that the anti-gluten antibodies leave the intestines and enter the bloodstream where they can be measured by the tTg IgA test.  Your whole wheat bread may only have a gram of gluten per slice, so be prepared...  
    • trents
      Severe severe mouth pain

      By trents · Posted

      From my own experience and that of others who have tried to discontinue PPI use, I think your taper down plan is much too aggressive. It took me months of very incremental tapering to get to the point where I felt I was succeeding and even then I had to rely some days on TUMS to squelch flareups. After about a year I felt I had finally won the battle. Rebound is real. If I were you I would aim at cutting back in weekly increments for two weeks at a time rather than daily increments. So, for instance, if you have been taking 2x20mg per day, the first week cut that down to 2x20mg for six days and 1x20 mg for the other day. Do that for two weeks and then cut down to 2x20mg for five days and 1x20 for two days. On the third week, go 20x2 for four days and 20x1 for 3 days. Give yourself a week to adjust for the reduced dosage rather than reducing it more each week. I hope this makes sense. 
    • knitty kitty
      Severe severe mouth pain

      By knitty kitty · Posted

      Talk to your doctor about switching to an antihistamine, and supplementing essential vitamins and minerals.  Dietary changes (low carb/paleo) may be beneficial for you.  Have you talked to a dietician or nutritionist about a nutrient dense gluten free diet?   It's harder to get all the vitamins needed from a gluten free diet.  Gluten containing products are required to be enriched or fortified with vitamins and minerals lost in processing.  Gluten free facsimile processed foods are not required to be enriched nor fortified.  So we have to buy our own vitamin supplements.   Glad to be of help.  Keep us posted on your progress!
    • Caligirl57
      Severe severe mouth pain

      By Caligirl57 · Posted

      I’m pretty sure they do. I have been on myfortic, tacrolimus since 2021 for my liver transplant and added prednisone after kidney transplant.  I’m going to try to cut back omeprazole to 20 mg a day and then after a week try to stop altogether. Thank you for your help.
×
×
  • 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.