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Deficiencies

vgoebel
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vgoebel Rookie
vgoebel
Posted

Hello!  I was diagnosed 2 years ago with celiac disease.  I am now being monitored every 3 months for Vitamin D, Iron, and B12 Deficiencies.   I did receive an iron infusion in August and have been getting B12 shots.  Both worked well, but there is no injection for Vitamin D.  I have been increasing the amount of Vitamin D supplements I take.  Knowing that absorption is the issue, my doctor has me up to 7000 IU/ day of Vit D in hopes I will at least absorb some of it.  Even increasing my Vitamin D in November from 4,000 to 5,000 IU did not work and in fact my Vit D numbers went down.  Are there any tips or treatments anyone knows of to get my body to absorb better? It sounded like the iron and B12 supplements I am taking are working very little (ferritin went down) but it is extending the amount of time in between iron infusions and shots of B12 possibly.  Vitamin D is the one that actually went down. 

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cyclinglady Grand Master
cyclinglady
Posted

Hi!  

I remember you!  I think it was because you only had an elevated DGP IgA on the celiac disease panel like me.  How is your daughter?  

If you have been two years on a gluten free diet and are still requiring supplementation, I would think there was something other than celiac disease going on.  My iron-deficiency anemia resolved within a few short months.  My vitamin D was never that low because I live in Sunny California (it does go down in the winter but still stays in range).  I have never been B-12 deficient (am not a vegan) though I do have autoimmune gastritis and that tends to lead to B-12 deficiencies but I am not there yet.  

If your celiac disease is still active (what is your DGP IgA level now?), then you need to either look to your diet for gluten exposures or see a GI for further evaluation.  Refractory celiac disease is very rare, but possible. More often it is hidden gluten exposures. You might trial the Fasano diet and do not eat out until things improve.  

If you can firmly rule out active celiac disease, then your GI should look at other illnesses like Crohn’s or ones that can cause malabsorption.  

Remember my little niece?  I thought for sure she had celiac disease.  She was scoped several times.  A pill camera finally caught her Crohn’s diagnosis.  It was beyond the reach of both scopes.  She is doing well on a biologic medication. 

I hope you figure it out.  

Posterboy Mentor
Posterboy
Posted
On 3/10/2020 at 4:19 PM, vgoebel said:

Hello!  I was diagnosed 2 years ago with celiac disease.  I am now being monitored every 3 months for Vitamin D, Iron, and B12 Deficiencies.   I did receive an iron infusion in August and have been getting B12 shots.  Both worked well, but there is no injection for Vitamin D.  I have been increasing the amount of Vitamin D supplements I take.  Knowing that absorption is the issue, my doctor has me up to 7000 IU/ day of Vit D in hopes I will at least absorb some of it.  Even increasing my Vitamin D in November from 4,000 to 5,000 IU did not work and in fact my Vit D numbers went down.  Are there any tips or treatments anyone knows of to get my body to absorb better? It sounded like the iron and B12 supplements I am taking are working very little (ferritin went down) but it is extending the amount of time in between iron infusions and shots of B12 possibly.  Vitamin D is the one that actually went down. 

Vgoebel,

I have had some similar problems with Vitamin D and B12.....

I am still working on the Vitamin D issues....my latest hunch is Selenium....  https://www.celiac.com/forums/topic/133160-hemachromatosis-and-low-vitamin-d/?tab=comments#comment-1033313

For the B12 take a B-complex....they (B-Vitamins works synergistically) and works best 2/day.....taking B-2 helped my B12 levels...here is a a link about the B-2/B-12 association.....

https://jeffreydachmd.com/2015/11/riboflavin-hypertension-mthfr/

Also try taking Magnesium Glycinate at least twice a day....we (our bodies) can't convert Vitamin D to the bio-available form without Magnesium... Here is the research on Magnesium link to Vitamin D....

https://www.ncbi.nlm.nih.gov/pubmed/29480918

https://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-11-229

And if they (that) doesn't work ....I am stumped...here is a nice article on how Vitamins work synergistically (cofactor's for absorption)...that might help you....think lock and deadbolt...you have to unlock both before your body opens the door to health....or they stay "locked" up in the body...unusable...to the cells' etc...

https://www.deannaminich.com/vitamin-and-mineral-interactions-the-complex-relationship-of-essential-nutrients/    .....  the body is very complex....and you can't always figure it out at first....but these are things that helped me.

I hope this is helpful but it is not medical advice.

Posterboy,

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    • trents
      My Adult daughter is blaming me for her "possible" Celiac disease.

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