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      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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

B12 Confusion
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katrina500    1

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.

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rosetapper23    236

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.

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RiceGuy    55

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.

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katrina500    1

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.

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katrina500    1

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!

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Skylark    935

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.

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frieze    114

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

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