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B12 And Celiacs


I hate gluten

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I hate gluten Apprentice

Is a b-12 deficiency normal with Celiacs?


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Tallforagirl Rookie
Is a b-12 deficiency normal with Celiacs?

It's not the most common vitamin deficiency amongst celiacs, but mine was on the low end of normal.

Lovey25 Rookie
Is a b-12 deficiency normal with Celiacs?

I don't know, but I'm convinced I have one -- and have been convinced of it for a very long time. I've been taking a vit B complex pill for a few months now to no avail. :(

labbott Newbie

yes, b12 deficiency is very common for us. I had to take sublingual methlycobalamin in order to get my levels up. Just taking sublingual cyanocobalmin didn't help me.

Mother of Jibril Enthusiast
I don't know, but I'm convinced I have one -- and have been convinced of it for a very long time. I've been taking a vit B complex pill for a few months now to no avail. :(

It would really be a good idea to get your level checked and track what happens over the next few months (if you are deficient). People with pernicious anemia... another autoimmune disorder that tends to cluster with celiac disease... are unable to absorb B-12 through their stomach. From what I understand there are two solutions to this: either take it sublingually (letting the B-12 dissolve under your tongue so it goes straight into your bloodstream) or get regular B-12 injections.

If you have PA, even huge doses of regular supplements wouldn't help!

mushroom Proficient

I tried the sublingual B12 because I suspected I was deficient, but had a reaction to something in it. I then had to convince my PCP that I was deficient. I was low normal in September, 10 mos after going gluten free. Just had it rechecked and both my B12 and folate levels have dropped since Sept., B12 barely normal and folate now below, so I am finally going to be getting B12 shots, and a folate prescription, along with a B vitamin supplement. However, the pharmacist just called and can't find any gluten free folate at the levels prescribed. Gluten free meds are a big problem here :( I may just have to take multiple tabs of a lower dose. I am hoping with these three supplements I will start feeling less lethargic :P The good news is that my Vitamin D levels have come up a lot with supplements.

I have to tell my doc everything I need because she doesn't know much about celiac. My next task is to work on her about my thyroid--one thing at a time!!

ravenwoodglass Mentor

The areas in the small intestine that gets damaged by celiac are the same areas that our body needs to absorb and utilize B12. So a B12 deficiency is not uncommon with celiacs. The supplements in pill form that you swallow are not able to be used by the body until we heal. For that reason we need to use sublingual forms to get this vitamin. B12 can cross the mucousal tissues in the mouth and bypassing the gut gets it into the body. B12 is also stored by the body and it can take some time after we stop utilizing it before this will show up in blood work. Taking a supplement with folate can also make the B12 show falsely high levels. It is a vitamin that has no toxic levels and supplementing with the sublinguals will not hurt you. If you are having indications that B12 is needed, commonly nerve issues like tingling in the hands or feet, you would be wise to pick some up.


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I hate gluten Apprentice

I started the celiac diet before testing, I did not care if the test was neg or not. The diet helped tremendously. So I headed to the doc one week later (last week) and gave him a list of blood work i wanted ran. He told me that vit deficiencys only happen in menopause woman and geriatrics. (im 28), Got a phone call today that all my test came back normal not spuprised. But my b12 was so low they did not know how I was walking or not neurologic by now. Scary. So I have to start injections. Asking what could cause it they said it was just diet realated! WHATEVER I told them I am far from a vegatarian and that I crave meat and my diet is very similar to the south beach/ atkins. (supossedly b12 in food relation is from not enough protein, and I sooooo do not have that problem) So I will get the injection today and have my blood monitored from there. Sounds fishy to me, need to do some more research into it any ideas where to start?

Marcydawns Newbie
I started the celiac diet before testing, I did not care if the test was neg or not. The diet helped tremendously. So I headed to the doc one week later (last week) and gave him a list of blood work i wanted ran. He told me that vit deficiencys only happen in menopause woman and geriatrics. (im 28)

I am 28 as well. I have a b-12 deficiency. I had to get injections and now I take a 2500mcg sublingual every day (nature's bounty is the only brand that makes it). I just don't get where some doctors get their ideas from!

I am also severly iron deficient... that is also normal with Celiac.

RiceGuy Collaborator
I started the celiac diet before testing, I did not care if the test was neg or not. The diet helped tremendously. So I headed to the doc one week later (last week) and gave him a list of blood work i wanted ran. He told me that vit deficiencys only happen in menopause woman and geriatrics. (im 28), Got a phone call today that all my test came back normal not spuprised. But my b12 was so low they did not know how I was walking or not neurologic by now. Scary. So I have to start injections. Asking what could cause it they said it was just diet realated! WHATEVER I told them I am far from a vegatarian and that I crave meat and my diet is very similar to the south beach/ atkins. (supossedly b12 in food relation is from not enough protein, and I sooooo do not have that problem) So I will get the injection today and have my blood monitored from there. Sounds fishy to me, need to do some more research into it any ideas where to start?

If you're still healing, it may just take more time for the digestive system to derive enough B12 from food. The shots should help get your levels up much more quickly than they would on their own. From what I've read, the body will rob organs and tissues of B12 in order to keep blood levels up, which it seems may be one reason why many find supplementation helpful even when blood tests say it's in the normal range.

One area to start researching might be Pernicious Anemia. Even if your intestines can do their job, if the stomach can't produce sufficient amounts of what they call Intrinsic Factor, you can't absorb adequate B12 from foods. This condition can develop from a few things, including prolonged antacid use. Supposedly, it is permanent.

Also, look up Apple Cider Vinegar. This can help the stomach, though I'm not sure if Pernicious Anemia can be repaired. Make sure it's Raw, Unpasteurized, and Unfiltered.

Another thing that may help is betaine HCL w/pepsin. If you have poor digestion and heartburn, it can help improve them.

harp1 Apprentice

I have the tingling and numbness in my hands (musician-a problem) so I'm taking B12 shots for that and magnesium shots for my tremor, makes a big difference. My endochrinologist sells the viols for the shots (I'll have a friend help me out). PM me if you want more info. Also taking B12 orally. Susan

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    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
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