• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

B12 Confusion
0

8 posts in this topic

Hello, I've been gluten free for around 12 months after an endoscopy and blood test. My initial symptoms were never gastro, but dizziness, fatigue and headaches. Those symptoms now come and go still (apart from the headaches which have happily gone for good it seems).

However, I still get very debilitating fatigue. My B12 levels have always come back as okay, apart from a couple of times when they had to retest. I take B12 supplements, though I'm quite a big social drinker as well and after a heavy night on the tiles, the B12 levels go down and I feel dizzy again for some weeks.

My questions are this:

1. Event when my B12 levels are said to be okay by my GP, should I still insist on B12 injections as I understand there is no toxicity level with this vitamin and you can't have too much of it.

2. When my B12 levels are low (no doubt as a result of too much drinking), how long does it take to get them back up by taking supplements? The supplements I take are 1,000% of RDA and I take two, though today I took four.

Thank you so much, look forward to any insight.

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


From your description, it doesn't sound as though your B12 is a problem at this time. However, social drinking can cause low folic acid and potassium levels. Perhaps you should have the levels of these nutrients tested (?). Also, has your thyroid been tested? A failing thyroid can cause extreme fatigue, and Hashimoto's Thyroiditis is very common in celiacs. I developed Hashimoto's two years after going gluten free.

0

Share this post


Link to post
Share on other sites

I do hope you realize that many alcoholic beverages are not gluten-free. So not only is the alcohol not good for the body, but you may be getting glutened by it too.

However, I will not lecture you on alcohol consumption. I'm sure you know better without it being pointed out to you.

As for B12, whether or not to get injections, and how long it takes to bring levels back into the normal range if you allow them to drop, there is no single answer for everyone. It all depends. It depends on how low your level goes, how much the body has stored up, how much you supplement per day, what type of supplement you take, how well your body absorbs the supplement, etc. From what I've read, the methylcobalamin form of sublingual can be as effective as the shots. It is true that there is no known level of overdose for B12, so you can safely take as much as you wish. Studies in which huge, mega-doses of B12 have been administered show that even 60mg per day can be helpful. I expect that you'd end up ingesting too much of whatever other ingredients are in the supplement before experiencing any negative effects from the B12 itself.

When you say 1000% of the RDA, do you mean 3mg? Some studies seem to show that the body can assimilate about 5-6mg per day, which I suppose is why many B12 supplements are available up to about 5mg in potency. There are a few which are higher, though very few. But depending upon how well you body is able to absorb, assimilate and utilize the B12 supplement, you may benefit from a somewhat higher dose. Experimentation with varying amounts is probably the best way to determine how much is optimal for you.

1

Share this post


Link to post
Share on other sites

From your description, it doesn't sound as though your B12 is a problem at this time. However, social drinking can cause low folic acid and potassium levels. Perhaps you should have the levels of these nutrients tested (?). Also, has your thyroid been tested? A failing thyroid can cause extreme fatigue, and Hashimoto's Thyroiditis is very common in celiacs. I developed Hashimoto's two years after going gluten free.

Thanks for your reply, I've had all the thyroid tests and I'm actually hugely underweight which, as I understand it, is not something associated with thyroid issues. I'm 5'9" and only weigh 9 stone. I was average before diagnosis and then of course, the cakes and buns went, so I lost weight, but am trying to put it back on. I'll ask my GP for further tests though. It's the "B12 under and B12 okay" results that confuse me.

0

Share this post


Link to post
Share on other sites

I do hope you realize that many alcoholic beverages are not gluten-free. So not only is the alcohol not good for the body, but you may be getting glutened by it too.

However, I will not lecture you on alcohol consumption. I'm sure you know better without it being pointed out to you.

As for B12, whether or not to get injections, and how long it takes to bring levels back into the normal range if you allow them to drop, there is no single answer for everyone. It all depends. It depends on how low your level goes, how much the body has stored up, how much you supplement per day, what type of supplement you take, how well your body absorbs the supplement, etc. From what I've read, the methylcobalamin form of sublingual can be as effective as the shots. It is true that there is no known level of overdose for B12, so you can safely take as much as you wish. Studies in which huge, mega-doses of B12 have been administered show that even 60mg per day can be helpful. I expect that you'd end up ingesting too much of whatever other ingredients are in the supplement before experiencing any negative effects from the B12 itself.

When you say 1000% of the RDA, do you mean 3mg? Some studies seem to show that the body can assimilate about 5-6mg per day, which I suppose is why many B12 supplements are available up to about 5mg in potency. There are a few which are higher, though very few. But depending upon how well you body is able to absorb, assimilate and utilize the B12 supplement, you may benefit from a somewhat higher dose. Experimentation with varying amounts is probably the best way to determine how much is optimal for you.

Thanks so much for your comprehensive response and the trouble to do so. I'm not sure where you live, but I'm in Ireland and they don't say mgs, but a percentage of your recommended daily allowance (RDA). I only drink wine and the occasional spirit, I don't drink beer or Guiness unfortunately. I'll up the supplements I think, but I just get confused as to why sometimes the results are okay and other times not, so times it's getting through and then it doesn't and wondered if that was contributing to the extreme fatigue that I get about once every six weeks.

Thanks again, I'm off to have a B12 dinner!

0

Share this post


Link to post
Share on other sites
Ads by Google:


I agree with Rosetapper. It doesn't sound like B12 is your issue. It would be malpractice for your GP to inject you with B12 when you are not deficient, and it wouldn't contribute anything to your health. B vitamins work together and mega-dosing one just gives you expensive pee. You may be low on folate or vitamin D (or even unable to convert and require methylfolate), or you may have a health problem like hypothyroidism.

Alcohol depletes magnesium, zinc, folate, and really all the B vitamins. It also irritates the gastric lining to where you don't absorb nutrients as well. Toxic metabolites deplete antioxidants like glutathione and vitamin C. You don't feel ill after a drinking binge because you're low on one specific nutrient' there is a lot going on.

You can't just take a bunch of supplements to counteract drinking too much. I find I feel much better if I simply limit alcohol to one drink in an evening. If you find it hard to control the drinking to where you can limit yourself to a drink or two, you might consider abstaining entirely. People always love a designated driver and you won't have two weeks of misery after the evening with your friends.

0

Share this post


Link to post
Share on other sites

I am thinking a period of abstinence is in order, for testing purposes. Are you taking methyl B12, or cyano? have you had your MMA tested? some Persons of Irish ethnicity do have trouble with B12 .....but I don't think that its lack is what is giving you your "morning after" that goes on for such an extended period of time.....good luck

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,778
    • Total Posts
      932,367
  • Member Statistics

    • Total Members
      64,252
    • Most Online
      3,093

    Newest Member
    cmatott
    Joined
  • Popular Now

  • Topics

  • Posts

    • This is really tough.  There is still a lot of research needed in diagnosing (or dismissing) celiac disease.  It shouldn't be months/years of misery and uncertainty. A couple of years ago Dr. Marsh (THE Dr. Marsh of the Marsh biopsy rating system) criticized the US celiac community for not recognizing an increase in IELs as early celiac disease. He asked if these doctors would like to be responsible for the oseoperosis or lymphoma of the undiagnosed patients.  I have also seen that it can take months for antibodies to rise.  There was a paper (2015) that looked at gluten challenges in diagnosed celiac patients.  These are folks with confirmed celiac  and for some it took over 3 months for blood tests to show anything. I hope the strict gluten-free diet works for you. I hope to hear you report back in a couple of months.  I'm undergoing my gluten challenge right now. Week 2. It's just really tough. 
    • My 13 and 7 year old have Celiac Disease and my 4 year old has the genes.  I have a double dose of the genes so no matter what my children will get a gene that could develop into the disease.  I hope that my youngest son doesn't ever develop the disease, but his dr said it could activate later in life.  My kids are thriving, they have normal lives, they are smart and have gained knowledge about food that they can carry with them throughout their life.   They really don't let anything stop them from living a normal life.  I think you'll have the upper hand if you choose to have kids.  You'll have the knowledge of what to do to keep them safe if they do have Celiac Disease.  You'll be able to relate since you were young when you were diagnosed.  How was it for you growing up? 
    • My 7 year old son has this happen.  I too get highly angry, like could flip a vehicle kind of angry.  It's hard for the little ones to understand what is going on at the time, only knowing that they can't control themselves....  The glazed crazy look in his eye are always a tell.  Sleep helps, along with lots of water the following day.  The next day we talk about everything and try to figure out what could have glutened him.  We've had talks with our school and teachers letting them know that our son is to not eat anything unless we bring it.  I think the last time this happened to him was from using shared supplies after a treat party.  Now he's very cautious of putting his hands to his lips or mouth.    Now as far as chips, my kids stick with Kettle Brand Chips.  They are certified.  Potatoes aren't my friend so I can't really say if they taste great.     
    • Exactly!! Scuff, are you doing the gluten challenge?  How far along are you?  
    • Wow - those are some really high numbers. Something definitely has to be going on. It will be interesting to see if the numbers are still high. My  7 year old has one positive celiac test - the TTG IGA and it's just barely positive (20-24 is weak positive and over 25 is positive - she is 27).  Her GI appt isn't til September but I hope the doctor will re-run the bloodwork and then if it's still positive, we will do the endoscopy. I am tempted to run her bloodwork sooner because September is a long wait. I understand that some doctors will diagnose children without endoscopy if you meet 4 out of 5 criteria: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.    
  • Upcoming Events