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

Vitamin B6 Toxicity


bny06

Recommended Posts

bny06 Apprentice

So I am new to all of this - 7 weeks or so gluten free after losing a ton of weight lots of GI issues etc.. When I went gluten free I started manifesting some wierd neuro sypmtoms and my dr thinks it was related to B6 toxicity now.. anyone else had this? There isn't a lot online that I can find.

My neuro symptoms started when I went gluten free the same week my intestines started to heal (aka going from up to 20 bowel movements a day down to less than 5 or so). I also stopped breastfeeding (I was about 7 months post partum- after landing in the hospital for malnutrition figured my baby wasn't getting a lot of benefit anymore and I surely wasn't either) and switched to a gluten free multivitamin and took an additional B complex.

You excrete vitamin B6 in breastmilk, and I had mentioned to my husband I thought it was strange I was urinating so much when I wasn't really drinking that many fluids (you of course also excrete B6 through your urine). Anyhow I had "dead legs and arms"/numbness tingling and weakness of hands.

I had my B12 level come back in the 1000's and we started scratching our heads.. I have been on a B6 supplement (100mg) for 4 years (I have a blood clotting disorder MTHFR where you are supposed to supplement) the only option over the counter was 100mg.. so add that to the 100mg of B6 in my new multivitamin I was taking, along with a B complex (i think only 3mg of B6) and all my B6 drinks along with no longer excreting it in breastmilk= neurotoxic B6 (that's what my Gi dr is saying anyhow)

We had my levels checked about 2 weeks after I had stopped my B6 and they were still double the upper limit of normal.. apparently this can take 6 months or more to resolve, if ever!

Anyhow kind of crazy! B12 seems to be very safe, but when it comes to B6 I guess that's another story!


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



Celiac.com Sponsor (A8-M):



sandsurfgirl Collaborator

I had those same symptoms recently and it ended up being my hormones. My aldosterone and rennin were very low. I was actually hospitalized for 10 days because I was peeing out so much fluid and not able to take enough in.

Have them test your hormones too. They should also test you for diabetes incipitus, the water diabetes. It's a lack of anti diuretic hormone. Keep an eye on your blood pressure. Maybe get a blood pressure monitor from a pharmacy or Costco. I got sicker and sicker over the course of a month until I was collapsing.

I hope you get better soon. Please insist on those hormone tests. They need to consider adrenal insufficiency too, low cortisol and other hormones.

The neuro symptoms can be due to severe dehydration. Please keep us updated and please don't let them blow off the frequent urinating. It can be very serious. Not to scare you but I just dealt with this recently and I had to go to the ER 5 times before they admitted me. I switched docs because mine wasn't taking it seriously and my new doc sent me to the ER with a note to put me in the hospital the 5th time.

bny06 Apprentice

thanks so much for your reply!! When that was happening (the frequent urination) I defintely had Addisons disease etc on my mind.. but wasn't really lightheaded when standindg toooo much at that time - though that did follow.. the urinating frequently stopped about a week ago (about three weeks after stopping B6) now I don't have to urinate often. I did have to go to the ER once during all of this mess since I was so dehydrated/lightheaded and my heart rate woudln't go below 130 even while just sleeping/laying there!! Ended up getting admitted into the hospital for dehydration/malnutrition a week later from my dr's office. I wonder if I could have had an issue then but it has resolved itself... or if it was all malnutrition related.

But it's still a good idea to get those things checked I think.. I'll add that to the new blood work I'm scheduled to get - I think I'd like to add Lyme in there too..

It's crazy I know I didn't realize how sick I was - i was too busy going on with kids, work life etc.. then one day realized something was VERY much wrong.. I'm lucky to have gluten issues diagnosed fairly quickly, however if these neuro symptoms and other wierd things would start improving my sanity would soon follow i'm sure :) Thanks again!

sandsurfgirl Collaborator

The kids do make you just keep going. I went to Disneyland during all that stuff before I was hospitalized! I had this awful episode while I was there where I got dizzy, weak, shaking, etc. I drank a big Gatorade and then stayed for hours running around with friends even though I felt so bad.

I'm glad you know about Addison's and all of that and you are on top of it. Mine is Cushings which is the opposite of Addison's, but I do have the low aldosterone and rennin. Sometimes with Cushings you get weird things like that.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    2. - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    3. 0

      Celiac Friendly Sports Camps - Academy Camps - Virtual Open House

    4. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Low iron and vitamin d

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,216
    • Most Online (within 30 mins)
      7,748

    jan ohlson
    Newest Member
    jan ohlson
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • cristiana
    • trents
      Cristiana, that sounds like a great approach and I will be looking forward to the results. I am in the same boat as you. I don't experience overt symptoms with minor, cross contamination level exposures so I sometimes will indulge in those "processed on equipment that also processes wheat . . ." or items that don't specifically claim to be gluten free but do not list gluten containing grains in their ingredient list. But I always wonder if I am still experiencing sub acute inflammatory reactions. I haven't had any celiac antibody blood work done since my diagnosis almost 25 years ago so I don't really have any data to go by.   
    • cristiana
      I've been reflecting on this further. The lowest TTG I've ever managed was 4.5 (normal lab reading under 10).  Since then it has gone up to 10.   I am not happy with that.  I can only explain this by the fact that I am eating out more these days and that's where I'm being 'glutened', but such small amounts that I only occasionally react. I know some of it is also to do with eating products labelled 'may contain gluten' by mistake - which in the UK means it probably does! It stands to reason that as I am a coeliac any trace of gluten will cause a response in the gut.  My villi are healed and look healthy, but those lymphocytes are present because of the occasional trace amounts of gluten sneaking into my diet.   I am going to try not to eat out now until my next blood test in the autumn and read labels properly to avoid the may contain gluten products, and will then report back to see if it has helped!
    • lizzie42
      Hi, I posted before about my son's legs shaking after gluten. I did end up starting him on vit b and happily he actually started sleeping better and longer.  Back to my 4 year old. She had gone back to meltdowns, early wakes, and exhaustion. We tested everything again and her ferritin was lowish again (16) and vit d was low. After a couple weeks on supplements she is cheerful, sleeping better and looks better. The red rimmed eyes and dark circles are much better.   AND her Ttg was a 3!!!!!! So, we are crushing the gluten-free diet which is great. But WHY are her iron and vit d low if she's not getting any gluten????  She's on 30mg of iron per day and also a multivitamin and vit d supplement (per her dr). That helped her feel better quickly. But will she need supplements her whole life?? Or is there some other reason she's not absorbing iron? We eat very healthy with minimal processed food. Beef maybe 1x per week but plenty of other protein including eggs daily.  She also says her tummy hurts every single morning. That was before the iron (do not likely a side effect). Is that common with celiac? 
    • Scott Adams
      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
×
×
  • 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.