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

Vit B-12 and other serum levels


ShelleyWeiser

Recommended Posts

ShelleyWeiser Newbie

I was diagnosed at age 50, 2 years of Vitamin D megadoses due to vitamin D deficiency and Hyperparathyroidism. Then 2 more years with an endocrinologist, then GI endoscopy and biopsies. My villi were 90% Marsh 4, 10% Marsh 3c. Positive for IgA, DGP-IgA, both have gotten higher, on a gluten-free diet. I  have  two of the HLA-DQ alleles. I have iron deficiency anemia, I get infusions as needed. My absorption is not good. My serum levels of vitamin B-12, are elevated but I don't take supplements. My body has been asymptomatic or the exact opposite symptoms. How do I know if my vit B-12 serum levels are an accurate indicator of my absorption levels? I have elevated calcium and HPTH, due to have surgery next month. My diagnosis was 15 years ago and I have had no improvement. I recently heard about B-12 and Intrinsic Factor and Pernicious anemia. I am exhausted from all the research I have done, since Dr. has not been much help at all. I really really appreciate any advice. Thanx, ShelleyWeiser


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



Celiac.com Sponsor (A8-M):



trents Grand Master

Welcome to the forum, @ShelleyWeiser!

If you had pernicious anemia, you would not have elevated B12 serum levels. By definition, pernicious anemia is caused by an inability to absorb B12.

Are you still consuming dairy products and oats? Do you use NSAIDs regularly? Are you on blood pressure meds?

knitty kitty Grand Master
(edited)

Welcome to the forum, @ShelleyWeiser,

No, serum B12 levels cannot be used as an indicator of absorption.  

Your Marsh scores are a better indicator of poor absorption.  Have you had an endoscopy to check for healing in the intestines recently?   Your high Anti-Gluten antibodies could be a reaction to Casein, the protein in dairy that causes the same reaction as gluten does.  You could be getting glutened from your diet (if you eat outside your home) or medications. 

Have you been checked for nutritional deficiencies?  Poor absorption leads to vitamin and mineral deficiencies.  In Celiac Disease, it's very common to have nutritional deficiencies, even on a gluten free diet.  

B12 can be stored in the liver.  B12 is released in Non Alcoholic Fatty Liver Disease.  NAFLD is common in Celiac Disease.  Thiamine Vitamin B 1 is needed for the liver to function properly and store B12.  Fatty deposits in the liver occur if there's a Thiamine deficiency.

B12 needs Pyridoxine Vitamin B 6, Folate Vitamin B 9, and Riboflavin Vitamin B 2 in order to function and make blood cells.  If there's a Pyridoxine deficiency, B12 cannot be used, so the liver releases more B12. 

There's eight essential B vitamins.  They all are interdependent on each other to function.  In Celiac Disease, it's common to be low in all the B vitamins because they cannot be stored for more than a few weeks (excepting B12 Cobalamine and Pyridoxine B 6).  The B vitamins are water soluble and easily lost in diarrhea, emesis, and constipation.  Some medications can affect absorption of the B vitamins. Some medications can cause deficiencies in certain B vitamins like Thiamine B 1.  

High Calcium levels can occur if there's a deficiency in magnesium.  Has your magnesium level been checked?  Magnesium keeps calcium in the bones.  Low magnesium can cause high serum calcium levels.

Have you been checked for vitamin and mineral deficiencies?  

P. S.  For your research...

https://www.researchgate.net/publication/378102935_The_clinical_significance_of_calciummagnesium_ratio_in_primary_hyperparathyroidism_unveiling_a_clinical_association

And...

Falsely Elevated Serum Vitamin B12Levels Were Associated with the Severity and Prognosis of Chronic Viral Liver Disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5355842/

And...

The Many Faces of Cobalamin (Vitamin B12) Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6543499/

And...

Insufficiency of B vitamins with its possible clinical implication

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7417807/

And...

Association between serum vitamin B6 concentration and risk of osteoporosis in the middle-aged and older people in China: a cross-sectional study

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6615830/

Edited by knitty kitty
Added post script
ShelleyWeiser Newbie

Knitty kitty,
WOW!! You guys have record response times. And you ask questions that I never would have thought to ask. I look forward to having my migraine gone by tomorrow, so I can re-read your reply. Why do the migraines always think they are the BOSS? 
Thanx for your time to reply and help all of us. Shelley 🥰

knitty kitty Grand Master

Riboflavin Vitamin B 2 helps with migraines. 

I had migraines so bad while deficient.  Thiamine B 1 helps with brain fog.

Hope you feel better!

Keep us posted on your progress!  

 

trents Grand Master

knitty kitty, if B12 was not being absorbed, as in pernicious anemia, how could ShellyWesier's serum levels of B12 be elevated? She does not mention getting B12 injections.

GardeningForHealth Enthusiast
15 hours ago, ShelleyWeiser said:

I was diagnosed at age 50, 

What were your lab results?

Quote

Positive for IgA, DGP-IgA, both have gotten higher, on a gluten-free diet.

What were those lab results? Hoping TTG-IgA and TTG-IgG is on there too.


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



Celiac.com Sponsor (A8-M):



knitty kitty Grand Master
(edited)
On 8/21/2024 at 10:30 PM, ShelleyWeiser said:

My diagnosis was 15 years ago and I have had no improvement. I recently heard about B-12 and Intrinsic Factor and Pernicious anemia. I am exhausted from all the research I have done...

 

I interpreted that Shelley was researching Pernicious Anemia and Intrinsic Factor.  I didn't see where she had been diagnosed with it.  If she had been diagnosed with Pernicious Anemia, she would have been given B12 shots.

The liver can store B12 for several years.  So B12 deficiency symptoms may not appear right away.  B12 when released from the liver is in a storage form that needs to be changed (methylated) to become an active form.  The inactivated form may build up in the serum if there's deficiencies in other vitamins needed to methylate the inactivated form of B12.    Pyridoxine B 6, Folate B 9, Riboflavin B 2, and Thiamine B 1 are needed to methylate Cobalamine B12.  

The essential water soluble B vitamins work together.  Supplement all eight together.

P. S.  To make red blood cells, we also need copper and Vitamin A.  

With malabsorption like Celiac Disease causes, it's more likely that malabsorption happens to all the vitamins and minerals, not just one or two.  Fat malabsorption (those yellow floaty stools) results in malabsorption of the fat soluble vitamins, Vitamins A, D, E, and K.  Vitamin A can be stored in stored in the liver, so deficiency symptoms may take awhile to appear.  Too much Vitamin A is a bad thing. Talk to your doctor before supplementing.  

Edited by knitty kitty
Added post script

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • 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 HectorConvector's topic in Related Issues & Disorders
      322

      Terrible Neurological Symptoms

    2. - Known1 replied to Known1's topic in Introduce Yourself / Share Stuff
      20

      Diagnosed Marsh stage 3C in January 2026

    3. - knitty kitty replied to Known1's topic in Introduce Yourself / Share Stuff
      20

      Diagnosed Marsh stage 3C in January 2026

    4. - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      322

      Terrible Neurological Symptoms

    5. - Known1 replied to Known1's topic in Introduce Yourself / Share Stuff
      20

      Diagnosed Marsh stage 3C in January 2026

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

    • Total Members
      133,593
    • Most Online (within 30 mins)
      7,748

    creak
    Newest Member
    creak
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      Thiamine Mononitrate is "shelf stable" and won't break down easily when exposed to heat, light and over time.  This makes it very hard for the body to absorb and utilize it.  Only thirty percent is absorbed, less is utilized because it takes additional thiamine to break it down.   Thiamine Hydrochloride is great.  Benfotiamine is wonderful, too.   Retaining water, edema, is a symptom of low thiamine.  I'd bloat up like a puffer fish.   The ingrown toenail problems I had that I attribute to Niacin deficiency and Vitamin C deficiency.  My toenails curled in and grew thick and yellow, thickened heels.  It was awful.   So glad you're going to give thiamine hydrochloride a try!   Let me know how it goes.  You may feel worse before you feel better, the thiamine paradox, but it does clear up.  It's like a car back firing if it hasn't been run for a while.   Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
    • Known1
      Thanks again, I'll keep pressing on.  🤞
    • knitty kitty
      @Known1, Search for "niacin flush fades the longer you use it" and "Niacin flush worse if deficient".   It takes a couple to three weeks for the body to adjust and you're at that point now, so things should improve. Riboflavin makes the neon color, which glows under black light.  If not absorbed, excreted.  Absorption of riboflavin will improve as the body starts healing the intestinal lining and villi grow back.   You could skip the multivitamin instead.  
    • HectorConvector
      The conversion factor for mg/dl and mmol/L is 18. So 5 = 90, 7 = 126, and so on. In the US, blood sugar regulations now are the same as what we use in the UK except for this difference in units. In terms of how they compare in the past, the numbers today that I quoted are stricter than they used to be. Blood sugar numbers for +1 and +2 hour postprandial are measured from the beginning of a meal in these official numbers. In regards to the thiamin supplement I have: it says it is thiamine mononitrate. I had not until now been aware there were different types (it seems I find that is the case with everything, including the magnesium I take!) and this one I have is the only one available in my local stores. I know it makes my pee smell strong when I take it which would seem to indicate my body is absorbing enough that the remainder gets ejected, but I could be wrong. Of course, I'm willing to try anything reasonable to correct this long standing condition, whatever it might be so I will try and get thiamin hydrochloride. Back on the note of diabetes (potentially) I haven't had the blood test for a while and I did notice ingrown toenail type infections a few times in the last 3 years that kept coming back. I heard that diabetes caused high urination. But eating sugar and elevated blood sugar causes the opposite in me. If I eat a lot of sugar I retain water, like big time. If I ate a bunch o sugar in the afternoon say, I can produce little enough urine that I can go over 12 hours and have nowhere near enough urine to need to void in that time or longer which seems abnormal.       
    • Known1
      @knitty kitty For me, the flushing lasts about 10 hours and not just 60-90 minutes after consuming the vitamins.  I am 10-days into taking this already.  My urine is neon colored around the clock and I drink between 1/2 to 3/4 of a gallon of water per day.  I'll stick with 2 a day for now, but am honestly quite hesitant to do so. I am curious, where are you reading "the worse the flush, the more your body needs the niacin"?  I have been searching for that, but haven't found that anywhere.  
×
×
  • 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.