Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Beware B Vitamin Toxicity!
0

52 posts in this topic

Celiacs out there who are feeling dizzy, bloated, having seizures, constipated, or having diarrhea: you may be experiencing b complex toxicity. A lot of us celiacs are prescribed/recommended/self medicate with vitamin b supplements and assume that they're 'safe'. It's not true. A lot of these supplements have mega doses of the daily requirements of these vitamins that can be extremely dangerous if taken over a long period of time. I have been taking huge doses of b vitamins and have been having these weird symptoms for a while. the worst would have to be vitamin b6 which had caused me a lot of central nervous system problems such as convulsions. A lot of the other vitamin can cause kidney problems, sugar/protein metabolism problems and GI problems to name a few. I thought I was getting Glutened all the time, but that's really hard in my case because I don't eat grains or legumes that are cc'd. Plus, I felt like complete crap yesterday after taking my b complex supplements. Check with your doctors or if you think the b complexes may be causing your problems STOP taking them. There are b vitamins in a lot of foods. The only one that's relatively safe is b12 and you still have to be careful with commercial mega doses. I hope this helps some people.

0

Share this post


Link to post
Share on other sites


Ads by Google:

Thank you for posting this.

I have been saying this on threads for a while, but no one wants to hear it. :) Everyone says "but they are water-soluble". :rolleyes: ...meaning they are not stored in the body. That's true, but that also means it is important to provide an adequate supply through a balanced diet.

That does not mean they are not CIRCULATING in your system.

B-complexes often cause nausea and stomach pain.

You can become toxic from too many vitamins, minerals and herbal supplements, despite what people say about "It's no problem, you are just peeing them out".

Unless you have a real deficiency, you may be doing more harm than good by mega-dosing on your own.IMHO

You should only take higher doses of vitamins if you are severely deficient and your levels should be monitored closely via blood work and under a doctor's care.

And mega-doses of Bs are not the only danger.

Too much A, E, zinc --really, too much of anything can cause problems.

Unless you have a B-12 deficiency, there is no need to take this vitamin in excess either.

Instead of helping with parasthesia, mega-doses of B6 and/or B-12 can can cause it.

The Bs work synergistically in the body. Too much of one can unbalance the others. That is why they are marketed in B-COMPLEXES.

It happened to me. It was suggested (by one doctor and a ND) that I take B6 for nerve pain, B5 for adrenal support, Biotin (B7) for hair loss and I was already taking a B complex (200 mg) on my own; then, my PC doctor told me to take Folic acid (B9) by prescription (for anemia) and high doses of sublingual B-12 (for anemia) and soon, I had INCREASED burning nerve pain (the very thing I was trying to resolve because I BURNED with neuropathy for 3 years)and I felt sick to my stomach constantly. :blink:

My new GI doctor took one look at the list of supplements I was taking, saw my recent blood work with very high B-12 and Folate levels and said "Stop taking all those things!! You're toxic!"

It took a few months to get the levels back to within normal range and all that excess burning and nausea stopped.

In the case of SELF -mega-dosing vitamins, MORE is not necessarily better.

IMHO

1

Share this post


Link to post
Share on other sites

Vitainims & minerals can be toxic as well as drugs. I don't believe in mega dosing anything..unless it is a life & death situation....then I may try anything!

I had a reaction to B-6 was not taking extra just what was in a multi I was taking..Small amount but my body just didn't need it so the body rebelled...I find taking the individual supplements works best for me & not multi's..This way I can control ...

As they say" everything in moderation" & that means everything...Some people think or feel a little is good but more is better!

1

Share this post


Link to post
Share on other sites

Personally, I really HATE reading posts like this because they could actually harm someone if they actually have vitamin deficiencies and read the original post and just stop taking their supplements. Since you are not a medical professional, it may have been better to add that supplementing vitamins should be done with your doctor's knowledge and blood tests to monitor vitamin levels rather than to suggest that someone discontinue a supplement they are taking. Especially if they are taking it because they were instructed to by a doctor for an actual deficiency. Because those mega doses of b12 that you are so hard on are the only thing thing that is keeping me from becoming anemic and stops the neuropathy due to the deficiency.

1

Share this post


Link to post
Share on other sites

Wow! I think once the GI tract heals, one starts absorbing these vitamins from foods and you don't need the supplements. Just eating enough whole foods should be enough.

2

Share this post


Link to post
Share on other sites




Personally, I really HATE reading posts like this because they could actually harm someone if they actually have vitamin deficiencies and read the original post and just stop taking their supplements..

Really? You really think anyone would suddenly stop taking a medically- prescribed supplement based on this thread? :blink:

No one is "being hard on B-12." Not at all-- You did not read what I said very carefully. IMHO

I had a B-12 deficiency for YEARS. Now, I do not. I am HIGH in B-12. Too high. Why? Absorption returned and I did not need it. I was toxic from continuing the dosage --and I was taking it upon the advice of a doctor!

I think we all stated pretty clearly that we were relaying :

our experiences

and that even under a doctors' supervision, this still happened

and in no way did anyone say "Stop taking all your supplements right now!"

We said: Be careful.

We suggested: Don't SELF mega-dose unnecessarily.

And the OP also said "check with your doctors".

I said: If you have a deficiency proven from blood work...etc.

No one is playing doctor.

No one should suddenly stop doing anything that has been medically prescribed.

I do not know how you interpreted anything else out of these posts. That was not my intention at all!

I'll say it again:

If you have PROVEN B-12 anemia, you should take an appropriate dosage of this vitamin as prescribed by your doctor.

And have follow up blood work done to monitor the levels.

I only suggested people do NOT mega-dose this vitamin --or any vitamin--without careful monitoring.

IMHO

0

Share this post


Link to post
Share on other sites

Personally, I really HATE reading posts like this because they could actually harm someone if they actually have vitamin deficiencies and read the original post and just stop taking their supplements. Since you are not a medical professional, it may have been better to add that supplementing vitamins should be done with your doctor's knowledge and blood tests to monitor vitamin levels rather than to suggest that someone discontinue a supplement they are taking. Especially if they are taking it because they were instructed to by a doctor for an actual deficiency. Because those mega doses of b12 that you are so hard on are the only thing thing that is keeping me from becoming anemic and stops the neuropathy due to the deficiency.

I never claimed to be a medical professional. I just say for those of us who are still having problems after going gluten-free for a while some supplements may be to blame. I don't disagree with the fact that some people are severely malnourished and do need very high doses of supplements, but some of us with healing guts may no need them. Depends on the individual's needs. I personally had to self prescribe b vitamins because upon being diagnosed by my first GI doctor I was given a list of foods and sent packing. No advice on how to get my health back, etc. The supplements helped at first, but then became toxic as my gut healed. That was MY personal experience and I was just putting it out there to see if anyone could relate to it.

0

Share this post


Link to post
Share on other sites

Disclaimer: do ask your doctor before stopping any supplements prescribed by him/her. Is everyone happy now?!

However, do listen to ur body if you don't feel well and do bring it to the doctor's attention. Most doctors don't ask the amounts (milligrams) that you're taking. Nobody asked me. A lot of doctors don't care or are not educated in the dangers of vitamin overdose. Everyone is different. If you feel that the supplements help, then take them by all means.

0

Share this post


Link to post
Share on other sites

I too believe in getting all your vitamins & minerals from a balanced diet & have always felt that way. In fact my mom taught us that. However, for right now, until my gut heals & I can get the benefit from my food; I need & feel much better from taking supplements. I am going to stop them as soon as it's safe to do so. I'm looking forward to that day.

0

Share this post


Link to post
Share on other sites

Disclaimer: do ask your doctor before stopping any supplements prescribed by him/her. Is everyone happy now?!

However, do listen to ur body if you don't feel well and do bring it to the doctor's attention. Most doctors don't ask the amounts (milligrams) that you're taking. Nobody asked me. A lot of doctors don't care or are not educated in the dangers of vitamin overdose. .

It happened to me, too--and I WAS under two doctor's supervision.

I think you have been very clear about your good intentions in this thread, hon--no need to keep defending it. You said nothing wrong that I can see! FWIW :)

It's all good! ;)

1

Share this post


Link to post
Share on other sites

I may just point out that the serum B12 test is not the best at identifying a B12 deficiency. Most of the ranges (in the U.S.) are too low given that many people with higher LEVELS still have the symptoms of a deficiency. So, while having testing done should be helpful... make sure it's the right kind because not all doctors are clued in on vitamins and minerals. :)

Thanks for making us aware of this.

1

Share this post


Link to post
Share on other sites

I too believe in getting all your vitamins & minerals from a balanced diet & have always felt that way. In fact my mom taught us that. However, for right now, until my gut heals & I can get the benefit from my food; I need & feel much better from taking supplements. I am going to stop them as soon as it's safe to do so. I'm looking forward to that day.

smart chickie! ;)

0

Share this post


Link to post
Share on other sites

I may just point out that the serum B12 test is not the best at identifying a B12 deficiency. Most of the ranges (in the U.S.) are too low given that many people with higher LEVELS still have the symptoms of a deficiency.

I am not doubting your statement--or you, hon--but where did you read this?

I would like to know --for my own knowledge. Thanks.

0

Share this post


Link to post
Share on other sites

Could It Be B12 – An Epidemic of Misdiagnoses - 2nd Edition by Sally M. Pacholok, R.N., B.S.N. Jeffrey J. Stuart, D.O.

I should add: the serum b12 test ALONE is not the best.

0

Share this post


Link to post
Share on other sites

Could It Be B12 – An Epidemic of Misdiagnoses - 2nd Edition by Sally M. Pacholok, R.N., B.S.N. Jeffrey J. Stuart, D.O.

I should add: the serum b12 test ALONE is not the best.

I see, so what additional tests ARE recommended, then? or how do they determine if it is NOT pernicious anemia? and what is their research based on--do they say?? thanks! you've got my attention...

0

Share this post


Link to post
Share on other sites

I too believe in getting all your vitamins & minerals from a balanced diet & have always felt that way. In fact my mom taught us that. However, for right now, until my gut heals & I can get the benefit from my food; I need & feel much better from taking supplements. I am going to stop them as soon as it's safe to do so. I'm looking forward to that day.

Best of luck to you!!!! It's a long road for all of us but with education and experience we can all have a healthy boy again!!!

0

Share this post


Link to post
Share on other sites

From what I remember they suggested the serum b12, urinary MMA and homocysteine... I'll have to go back and look as I think I might be forgetting one. They identified people whose serum b12 levels fall under 500 as in the "gray zone." They spoke a lot about the symptoms - levels connection and found that people whose levels fall under 500 (particularly levels under 450) could benefit from supplementation. There are lists of references usually 2-3 pages long after every chapter. I could go through and type them all out if you'd like, but that would be a little tedious. :lol:

Oh - I will have to go back and look at the pernicious anemia bit as I do not want to relay the wrong info.

0

Share this post


Link to post
Share on other sites

I may just point out that the serum B12 test is not the best at identifying a B12 deficiency. Most of the ranges (in the U.S.) are too low given that many people with higher LEVELS still have the symptoms of a deficiency. So, while having testing done should be helpful... make sure it's the right kind because not all doctors are clued in on vitamins and minerals. :)

Thanks for making us aware of this.

Good to know! I'm still taking the b12 supplement until I feel like I don't need it anymore. The one I've definitely stopped is the b6 because I was having those convulsions. I'm waiting to pee it out now. Been to the bathroom like 5 times today and it's only 11 am here lol. Thanks for the info. I love these forums because you guys have more info than any doctor. Seriously, my first GI doctor told me to go online and that's what I did. Saved my life.

0

Share this post


Link to post
Share on other sites

From what I remember they suggested the serum b12, urinary MMA and homocysteine... I'll have to go back and look as I think I might be forgetting one. They identified people whose serum b12 levels fall under 500 as in the "gray zone." They spoke a lot about the symptoms - levels connection and found that people whose levels fall under 500 (particularly levels under 450) could benefit from supplementation. There are lists of references usually 2-3 pages long after every chapter. I could go through and type them all out if you'd like, but that would be a little tedious. :lol:

Oh - I will have to go back and look at the pernicious anemia bit as I do not want to relay the wrong info.

Do you have a scanner? You could scan it & then upload it here???????? Save an awful lot of typing.

0

Share this post


Link to post
Share on other sites

Smart thinking, there. B)

Our old one doesn't work and I'm not entirely sure where the scanner is located in our new one... but my stomach is rumbling and telling me it's time for breakfast. I will figure it out though! :)

0

Share this post


Link to post
Share on other sites

There's wonderful safe vitamin guidelines on the Internet. I know some docs have prescribed large amounts to patients who are struggling to absorb. Many of us really do need these vits to help us regain our health but like the original post says we do all have to be careful with certain vitamins but that should not scare off anyone in need.

B vits have wonderful benefits, not just for people who are deficient. Not long ago I was in a doc's office here in Germany getting a treatment for my back. One of the things the German doc told me is that they use B and C vitamins for numbness and tingling for nerve pain. They put a whole IV of vits thru me and I felt wonderful!

Diabetics, HIV suffers, MS patients, etc find relief from nerve pain using specially formulated b complexes. I think you have to read the labels and stay within the limits provided unless you are under a doc's care for anything higher. If you are supplementing I think it is a good idea to have regular blood tests to check your levels.

I was a bit shocked at my last doc appt when he told me my D was slightly elevated. I didn't even know how but that is something I have to be careful with because I have problems with kidney stones. And me the sun worshipper!

0

Share this post


Link to post
Share on other sites

From what I remember they suggested the serum b12, urinary MMA and homocysteine... I'll have to go back and look as I think I might be forgetting one. They identified people whose serum b12 levels fall under 500 as in the "gray zone." They spoke a lot about the symptoms - levels connection and found that people whose levels fall under 500 (particularly levels under 450) could benefit from supplementation. There are lists of references usually 2-3 pages long after every chapter. I could go through and type them all out if you'd like, but that would be a little tedious. :lol:

Oh - I will have to go back and look at the pernicious anemia bit as I do not want to relay the wrong info.

Pernicious anemia is a decrease in red blood cells that occurs when your intestines cannot properly absorb vitamin B12.

No need to do all that typing or scanning! Too much work. I just wanted to know HOW she came up with the additional tests that she says should be used IN connection with the serum B-12 test ?

I am just curious!

Elevated homocysteine levels can occur for a variety of reasons (post-menopausal women for example can have elevated levels)

but in essence, what you are saying is,

if a doctor suspects a B-12 def and the B-12 levels are "within normal range" and the patient still has B-12 symptoms (which mimic everything from a stroke to Alzheimer's), there are other tests that may help determine a B-12 def?

0

Share this post


Link to post
Share on other sites

.... but with education and experience we can all have a healthy boy again!!!

I know this is just a typo--but it cracked me up. :lol:

I pictured this young, good looking guy who.....

but I digress! :)

1

Share this post


Link to post
Share on other sites

One of the things the German doc told me is that they use B and C vitamins for numbness and tingling for nerve pain. They put a whole IV of vits thru me and I felt wonderful!Diabetics, HIV suffers, MS patients, etc find relief from nerve pain using specially formulated b complexes. I think you have to read the labels and stay within the limits provided unless you are under a doc's care for anything higher. If you are supplementing I think it is a good idea to have regular blood tests to check your levels.

Yes and

I think it is very important to note that neuropathy is caused by many medical conditions, like MS and diabetes and shingles, etc. ---not just a B-12 deficiency.

So whenever a new person comes on here and says "I have numbness and tingling", many members say "Take B-12!" ...but,

that is not necessarily wise because we do not know the CAUSE of that person's neuropathic pain.

What if it's something else and the member just blindly supps with mega-doses of B-12??

Yes, it is probably from the celiac--but what if it is something ELSE? Also, someone could throw all the vitamin B-12 in the world down there, but if the person does not determine the CAUSE of those symptoms, what good does it do?

I have high levels of B-12 now ---and I still have neuropathic pain, for example.

IMHO

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
      104,642
    • Total Posts
      921,566
  • Topics

  • Posts

    • Hello I'm happy to join, any help is greatly appreciated as it can be difficult by times for sure. Unfortunately, I have been told my doctor has definitely not been doing anything correctly and very backwards about Alot of things. I live in canada, and there are celiac support groups I have found but I am about 2 hours away from any. I live in a pretty rural area. Although,  I have still received some help from them , they prefer a diagnosis before helping out to much. My doctor has me on a waiting list to see a gastrointestinal specialist but whenever I called her office to inquire about an appointment time I was told there was a very long wait and that I was considered to be a non emergency. So I am waiting to get an appointment. I have seen a dermatoligist for some of my rashes and she said it was dermatitis and gave me different creams for them.  It is frustrating because I don't know how to go about getting a actual diagnosis besides this biopsy. I was told to request a different specialist, but supposedly there is a waiting period for most in our area. 
    • Thanks for all of the replies. I've just found out I'm not getting to see a dietician because of not having a definite diagnosis which is another blow. I've had loads of bloods done but they just say they're all normal. I did have low vitamin D and high parathyroid but it's sorted itself out after a course of high dose vitamin D and they're not checking it again for a year. No chance of getting referred to endocrinology, gastro won't do it and neither will my gp. I've tried giving up coffee and all fizzy juice and it hasn't made a difference. I'm exhausted and scared and still have no clue what to do next. My gp has zero experience dealing with this type of thing - last time I was there she said it could be because I've restricted my diet too much and I should eat more gluten-free replacement products - everything I've read online says this is the worst thing to do! I'm asking for a copy of the last blood results this week so I can go through them myself but other than that I'm pretty stuck. 
    • I really am iffy on talking about this side of my gluten issues, I think I am about to ruin my reputation on this forum coming about as some extreme crazy guy saying this but I wanted to get this off my chest and perhaps see if anyone else might share a similar trauma. I get emotional recalling it, this side of my reactions, as it is most ingrained and very traumatizing experience, and I am not proud of it as the mentality I have now disgust me but I am going to come out about it. One of the scariest things in this world is when your own mind turns against you, when you can not think about what you want to think about, when you can not do what you know you should be able to do. When I got glutened really bad these where things I felt with my own mind would start looping, and thoughts would not come together. I would loose comprehension, feel like I know I should be able to think about something but my mind was not working. The same thing looped over and over and over like a broken record, This led to anger, anxiety, depression, panic, top it off with loss of feeling in my hands and feet, and the pains in the gut......it was a nightmare. I would go as far as beating my head against walls and punching them out of frustration as to why my own body and mind where not working, I just wanted it to end the pain to stop. I still have scars on my fist from punching into a nail in a stud once and kept going.....I scared everyone and myself distanced my self from loved ones. And started running a bucket list accepting that I was going to die soon. Hell to this day parts of the brain damage seem to be permanent as I can no longer do computer programing or some forms of math, they just no longer make any sense or connect. Then we learned what was causing it, and once the symptoms started to fade, I would get very angry if someone in the shared house did something stupid and got me sick again. The fear of going back to that caused violent and drastic actions to get away from what was making me sick. The sheer fear of my own mind turning on me led me to drastic actions to prevent it, throwing everything away I thought could make me sick, making sure no one else used that kitchen, used freezer paper and gloves when fixing my foods and working in there. I really destroyed and burned all bridges I had then and alienated myself from others. In the end it motivated me to learn how to cook, to get and renovate my own apartment in a building downtown, and start a business to pay for my new diet, by selling safe food to others with this issues locally at farmer markets. But it changed me on a very deep level, that traumatic experience to this day I have a issue looking at others and dealing with other humans who eat that stuff.......the stuff that breaks my mind and body so horrifically. If I have to compare it to something its like watching aliens drinking antifreeze and eating poison.....it causes a subconscious level of disgust and slight envy. I really can not even look at the stuff without recall what it does and feeling a twitch. I know I am the alien here, but it feels vise versa, and I look down on the normal people as odd creatures.  I go to the store and find myself overly avoiding contamination, keeping stuff in my own bags, asking the cashier to scan and bag it as I pass it not letting it touch that flour I see on the belt. I am hyper sensitive to the stuff I know and that fear semi dominates my mind as crazy as it sounds.  I am recovering and am forcing myself to try to mingle with other humans overlooking that one thing, but that deep rooted trauma still flares up as a protective measure especially around foods.  I could talk on and on about the other side effects but this one is the hardest to talk about it, and I feel others might be able to relate to it.    
    • Time.  You need time to heal.  Yeah, I am like a broken record!  😄 So...Lycra is your best friend for now (that and old baggy sweats!).  Hang in there!  Hugs!     
    • So far dairy seems to be OK, as are eggs. I like canned chickpeas so will carry on with those. Beans I had ruled out at one point with the doctor's recommendation to go with the low FODMAPs diet but will reintroduce those now I know it probably wasn't that causing the problems.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,647
    • Most Online
      3,093

    Newest Member
    iFitCeliac
    Joined