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Low Vitamin B12/d...6+ Years Post-Diag?


canadave

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canadave Apprentice

Hi,

 

I was diagnosed with celiac (with biopsy) and went on the gluten-free diet in 2008 (when I was 37 years old).  I just had some blood work done, and it shows I have low vitamin B12 and vitamin D levels, both of which my GP told me were likely related to my celiac disease.  And, I have indeed read that low levels of these vitamins can be caused by celiac disease.

 

I guess my question is whether that is true of people who have UNTREATED celiac disease, rather than people who have celiac but have been following a strictly gluten-free diet for years.  I thought that years of being on a gluten-free diet would've allowed my insides to "heal", and thus I thought these kinds of issues wouldn't necessarily crop up.  If that's true, then my concern obviously is that maybe things haven't healed, and these vitamin deficiencies are due to this lack of healing, even after so many years of the diet.

 

Can anyone shed some light on whether celiac-related vitamin deficiencies like this are typical, even for celiacs who have been on the gluten-free diet for years and who have, assumedly, fully healed?  Or am I just completely misinformed as to the way intestinal healing works for celiacs, even those who've been gluten-free for a while?


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bartfull Rising Star

Well, from what I've read even folks who never had celiac can be deficient in these, especially as we get older. I am taking about 5,000 units of D3 a day and I have 1,000mcg B12 sublingual tablets that I take four times a day. That's a lot, but I have had no ill effects.

 

My Mom had undiagnosed celiac all her life and had to take monthly B12 shots. I think she had permanent damage. She wasn't diagnosed until she was in her mid-fifties.

cap6 Enthusiast

I have been g.f. almost five years - faithfully so!   I am on s high dose of iron supps and b12.  I have tried to correct my levels with diet but the dr says this is one of the issues with celiac and I will prob always have this issue.  I did b12 shots for awhile which really helped "jump start" the levels and now seem ok with just supplements.  Guess it's just one of those little issues we have to put up with.

kareng Grand Master

I have read that many people, not just Celiacs, are vitamin D deficient. B12 deficiency could be from the Celiac - it is the one thing that can linger. I don't have time to look this stuff up for the link right now. Google vitamin D deficiencies and pernicious anemia from some reputable sites like Mayo or webmd.

sunny2012 Rookie

I have been gluten-free for nearly 20 years. I am still vit D deficient. I wonder if that part of the intestines is less able to heal for some reason.

frieze Community Regular

do you take any acid reducing drugs?  these will interfere with B12 absorbtion.  D is not a dietary element so much, we are designed to obtain that from the sun.  we supplement because either that is not working, or we don't get enough sun.  good luck.

Gemini Experienced

If you live in a northern climate, you most likely will be deficient in Vitamin D, Celiac or not.  If you wear sunscreen all the time, you most likely will be deficient in Vitamin D.

It is also a fat soluable vitamin and people with Celiac can have trouble absorbing fats for life......I do.  It is much improved since going gluten-free but my body still does not like high fat meals...which no one needs to eat anyway....unless you are strictly eating good fats only.  As we age, the GI tract doesn't work as well as it did in our youth so all of these can combine to make obtaining good levels difficult.

 

Vitamin B12 absorption can be difficult in the absence of intrinsic factor in the stomach.  You might want to read up on that.  You may need injections for a while to get your levels up and then maintain that with vitamin supplements.  Vitamin deficiencies can be tough to change in older celiacs and they can be improved but it might take some work to find the way that works for you.


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      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
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