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

B12 Deficiency In Untreated Celiac?


9na

Recommended Posts

9na Rookie

I was diagnosed vitamin D deficient about 6 months ago, and have been on supplements since. Two months ago I had great levels of D - I'm still on supplements, though.

I'm having a biopsy, probably in about a month.

Now, some of my symptoms could very well fit the description of B12 deficiency. I understand that this, just like Vitamin D deficinecy, is pretty common for celiacs/gluten intolerant.

B12 is suppose to be stored in the body for a long time, right. Well, I felt some improvement when I took quite large doses of B12, but two days ago I ran out, and today I feel several of the same symptoms. Is it possible that my body is unable to store the B12 as it is now? That I need to take them every day in large doses, until I can go gluten free?


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



Celiac.com Sponsor (A8-M):



Diane-in-FL Explorer

If you are still eating gluten, you probably are not absorbing the B12. Try the sublingual kind....they will get into your system better.

9na Rookie

If you are still eating gluten, you probably are not absorbing the B12. Try the sublingual kind....they will get into your system better.

I am still eating gluten - I have to until the biopsy is done.

The pills I've been taking are sublingual, and I'll be getting some more of those next week. Just wondering if it is possible that I need to take them every single day.

ravenwoodglass Mentor

I am still eating gluten - I have to until the biopsy is done.

The pills I've been taking are sublingual, and I'll be getting some more of those next week. Just wondering if it is possible that I need to take them every single day.

Yes take them every day until you have been gluten free long enough to heal and to be able to absorb and utilize the B12 from regular supplements and your food. That may take awhile even after you stop eating gluten.

frieze Community Regular

is it cyano or methyl? and if you are over 40 you may need to supplement in perpituity,

9na Rookie

is it cyano or methyl? and if you are over 40 you may need to supplement in perpituity,

They are methylcobalamin. And I'm not over 40 for another 9 years ;)

Judy3 Contributor

I have to take my sublingual B12 everyday. If I miss a day, I get the sores on the corners of my mouth INSTANTLY. I've just resolved to take one every day from now on... and yes I'm over 40!!


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



Celiac.com Sponsor (A8-M):



modiddly16 Enthusiast

I don' think that b12 deficiancy's really depend on whether you're eating gluten or not. I've been a celiac for 7 years and am very strict about my diet and I was just diagnosed with a b12 deficiancy a few months ago. "Normal" range is 200-900 and I was under 150, which the doctor called freakishly low...however, I was given no explaination as to why I was b12 deficiant or for how long I have been. I'm currently getting shots every 3 weeks before I get started on the pills.

9na Rookie

I don' think that b12 deficiancy's really depend on whether you're eating gluten or not. I've been a celiac for 7 years and am very strict about my diet and I was just diagnosed with a b12 deficiancy a few months ago. "Normal" range is 200-900 and I was under 150, which the doctor called freakishly low...however, I was given no explaination as to why I was b12 deficiant or for how long I have been. I'm currently getting shots every 3 weeks before I get started on the pills.

Of course one could be vitamin deficient without any celiac problem, but malnutrition often results in vitamin and mineral deficiencies, as far as I know.

My B12 level hasn't been checked as far as I know, but I have also read that that is not necessary - it takes a loooong time of deficiency for it to show on a blood test, and also there is no harm in taking B12 even if one shouldn't need it.

ravenwoodglass Mentor

I don' think that b12 deficiancy's really depend on whether you're eating gluten or not. I've been a celiac for 7 years and am very strict about my diet and I was just diagnosed with a b12 deficiancy a few months ago. "Normal" range is 200-900 and I was under 150, which the doctor called freakishly low...however, I was given no explaination as to why I was b12 deficiant or for how long I have been. I'm currently getting shots every 3 weeks before I get started on the pills.

There are some people that have something called pernicious (sp) anemia independant of celiac. For them their bodies don't make something called intrinsic factor. That factor is needed to be able to utilize B12 from food or supplements. They usually need supplementation by shots and/or sublinguals for life. Recent studies are showing that the lower level should be around 500. People are often symtomatic at under the 500 level.

You must have been feeling really off with levels that low. Glad your doctor caught it.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,742
    • Most Online (within 30 mins)
      7,748

    MistyMoon
    Newest Member
    MistyMoon
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Theresa2407
      Maybe you have a low  intolerance to Wheat.   Rye, Barley and Malt are the gluten in Celiac disease.  It has always been stated Wheat and Gluten, not just a Wheat intolerance.  Barley will keep me in bed for (2) weeks.  Gut, Migrains, Brain fog, Diahrea.  It is miserable.  And when I was a toddler the doctor would give me a malt medicine because I always had Anemia and did not grow.  Boy was he off.  But at that time the US didn't know anyone about Celiac.  This was the 1940s and 50s.  I had my first episode at 9 months and did not get a diagnosis until I was 50.  My immune system was so shot before being diagnoised, so now I live with the consequences of it. I was so upset when Manufacturers didn't want to label their products so they added barley to the product.  It was mostly the cereal industry.  3 of my favorite cereals were excluded because of this. Malt gives me a bad Gut reaction.
    • Gigi2025
      Thanks much Scott.  Well said, and heeded.   I don't have Celiac, which is fortunate.
    • Scott Adams
      Do you have the results of your endoscopy? Did you do a celiac disease blood panel before that?  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      It is odd that your Tissue Transglutaminase (TTG) IgA level has bounced from the "inconclusive" range (7.9, 9.8) down to a negative level (5.3), only to climb back up near the positive threshold. This inconsistency, coupled with your ongoing symptoms of malabsorption and specific nutrient deficiencies, is a strong clinical indicator that warrants a more thorough investigation than a simple "satisfactory" sign-off. A negative blood test does not definitively rule out celiac disease, especially with such variable numbers and a classic symptomatic picture. You are absolutely right to seek a second opinion and push for a referral to a gastroenterologist. A biopsy remains the gold standard for a reason, and advocating for one is the most direct path to getting the answers you need to finally address the root cause of your suffering. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      There is a distinction between gluten itself and the other chemicals and processing methods involved in modern food production. Your experience in Italy and Greece, contrasted with your reactions in the U.S., provides powerful anecdotal evidence that the problem, for some people, may not be the wheat, but the additives like potassium bromate and the industrial processing it undergoes here. The point about bromines displacing iodine and disrupting thyroid function is a significant one, explaining a potential biological mechanism for why such additives could cause systemic health issues that mimic gluten sensitivity. It's both alarming and insightful to consider that the very "watchdog" agencies meant to protect us are allowing practices banned in many other developed countries. Seeking out European flour and your caution about the high-carb, potentially diabeticgenic nature of many gluten-free products are excellent practical takeaways from your research, but I just want to mention--if you have celiac disease you need to avoid all wheat, including all wheat and gluten in Europe.
×
×
  • 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.