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

By bny06
in Coping with Celiac Disease

Recommended Posts

bny06 Apprentice
bny06
Posted

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
sandsurfgirl
Posted

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
bny06
Posted
  • Author

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
sandsurfgirl
Posted

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.

Go to topic listing

  • 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. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,335
    • Most Online (within 30 mins)
      7,748
    johnfreirefr
    Newest Member
    johnfreirefr
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.