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Vit B-12 and other serum levels

ShelleyWeiser
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ShelleyWeiser Newbie
ShelleyWeiser
Posted

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

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trents Grand Master
trents
Posted

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
knitty kitty
Posted
(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
ShelleyWeiser
Posted
  • Author

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
knitty kitty
Posted

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
trents
Posted

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
GardeningForHealth
Posted
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.

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knitty kitty Grand Master
knitty kitty
Posted
(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

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      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
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      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

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    • knitty kitty
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    • lizzie42
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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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