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

Celiac, raynauds, b6 toxity, copper Deficiency


Sassyred

Recommended Posts

Sassyred Newbie

Hello I have celiac, now raynauds, b6 toxity, and copper Deficiency, malnutrition disorder anyone else get these problems after being diagnosed with celiac disease? I have other issues as well graves, hashimotos, syncope, bradycardia/tachycardia,  fibromyaligia, neuropathy, chronic pain syndrome, etc. My main concern is b6 toxcity I can't get my levels down. I need help. I don't take vitamins or any b6 supplements. Nerologist says it's due to my celiac disease. I'm scared my levels are very high. Any advice would be greatly appreciated.  


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



Celiac.com Sponsor (A8-M):



trents Grand Master

I have never heard of B6 toxicity. Generally, people with celiac disease are low in B vitamins.

Looked up B6 toxicity, there is such a a thing but it is always caused by extreme over dosage in supplementation and does not have other etiologies:

"All cases of vitamin B6 toxicity are from supratherapeutic dosing, either iatrogenic or laypersons self-treating with over-the-counter supplements. Daily dietary intake will not provide enough pyridoxine to cause toxicity. The daily dietary intake of vitamin B6 is approximately 1.9 mg/day in the United States.[2] Additionally, typical pyridoxine doses used for co-treatment with isoniazid are 10 to 25 mg/day. Pyridoxine toxicity typically manifests as neurologic symptoms, including paresthesias in the extremities and, in severe cases, difficulty with ambulation. This sensory neuropathy usually develops at doses of pyridoxine above 1000 mg per day. There are some case reports of sensory neuropathies at doses of less than 500 mg per day in patients taking supplements for months. However, none of the studies had sensory nerve damage at a daily intake below 200 mg pyridoxine per day."

https://www.ncbi.nlm.nih.gov/books/NBK554500/

Did the neurologist run any tests to determine if you have B6 toxicity or just assuming that? IMO, if not test have been run to confirm B6 toxicity then your symptoms suggest just the opposite, especially since you are not taking any supplements. The B vitamin group is especially important in healthy neurology and the malnutrition that typically accompanies long-term undiagnosed or untreated celiac disease is often the cause of various neuropathologies.

Sassyred Newbie
18 minutes ago, trents said:

I have never heard of B6 toxicity. Generally, people with celiac disease are low in B vitamins.

Looked up B6 toxicity, there is such a a thing but it is always caused by extreme over dosage in supplementation and does not have other etiologies:

"All cases of vitamin B6 toxicity are from supratherapeutic dosing, either iatrogenic or laypersons self-treating with over-the-counter supplements. Daily dietary intake will not provide enough pyridoxine to cause toxicity. The daily dietary intake of vitamin B6 is approximately 1.9 mg/day in the United States.[2] Additionally, typical pyridoxine doses used for co-treatment with isoniazid are 10 to 25 mg/day. Pyridoxine toxicity typically manifests as neurologic symptoms, including paresthesias in the extremities and, in severe cases, difficulty with ambulation. This sensory neuropathy usually develops at doses of pyridoxine above 1000 mg per day. There are some case reports of sensory neuropathies at doses of less than 500 mg per day in patients taking supplements for months. However, none of the studies had sensory nerve damage at a daily intake below 200 mg pyridoxine per day."

https://www.ncbi.nlm.nih.gov/books/NBK554500/

Did the neurologist run any tests to determine if you have B6 toxicity or just assuming that? IMO, if not test have been run to confirm B6 toxicity then your symptoms suggest just the opposite, especially since you are not taking any supplements. The B vitamin group is especially important in healthy neurology and the malnutrition that typically accompanies long-term undiagnosed or untreated celiac disease is often the cause of various neuropathologies.

Yes he ran tests that's how I found out. I didn't know such a thing about b6 toxcity.  I do not take vitamins but I do eat alot of foods high in b6 but have been cutting back. He doesn't think I'm absorbing my food right I have a lot of gi problems the doctors are working on it. I hope next week for another check up on b6 levels I'm hoping for good news. It's like I didn't know copper Deficiency went with celiac disease either and I have that also. Through blood test and 24hr urine test but that's easier to fix. I will update after more testing because this so confuses me on why it's happening. I also have appointment set up with a nutrition counselor so hopefully they can help me. I'm also low on b12 and b1 and iron. Can we post pictures on this page? I could post my levels if so. 

Darcy Martinez Apprentice

I had b6 toxicity when I was diagnosed and I wasn't taking any vitamins.   I was low in everything else.

trents Grand Master
(edited)

Yes, you can post pictures. The attachment tool is under "edit" in the three horizontal dots upper right corner just above each post window. Choose edit from the menu and then you have access to the attachment tool. You have only 15 minutes to edit a post once it is submitted so if you want to add a picture after that then make a new post.

How were you diagnosed with celiac disease? Blood antibody tests? Endoscopy with biopsy or both? Can you share your antibody test numbers?

According to the article I linked you, it is impossible to get B6 toxicity from dietary consumption. So, I wonder if you have some metabolic issue going on.

Edited by trents
trents Grand Master
16 minutes ago, Darcy Martinez said:

I had b6 toxicity when I was diagnosed and I wasn't taking any vitamins.   I was low in everything else.

So, what happened with that? Is there a therapy to correct it? Is it still a problem?

Russ H Community Regular
3 hours ago, Sassyred said:

Yes he ran tests that's how I found out. I didn't know such a thing about b6 toxcity.  I do not take vitamins but I do eat alot of foods high in b6 but have been cutting back. He doesn't think I'm absorbing my food right I have a lot of gi problems the doctors are working on it. I hope next week for another check up on b6 levels I'm hoping for good news. It's like I didn't know copper Deficiency went with celiac disease either and I have that also. Through blood test and 24hr urine test but that's easier to fix. I will update after more testing because this so confuses me on why it's happening. I also have appointment set up with a nutrition counselor so hopefully they can help me. I'm also low on b12 and b1 and iron. Can we post pictures on this page? I could post my levels if so. 

What B6 food were you eating? The safe upper limit is 100 mg a day, which equates to 21 pounds of beef liver. If you are eating more than this amount of liver every day, I raise my hat to you.


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



Celiac.com Sponsor (A8-M):



knitty kitty Grand Master

@Sassyred

Welcome to the forum!  We're glad to help! 

What sort of medications have you been taking?  Which medications were you given for your Hashimotos?  Have you been treated for parasites or cancer? Any antibiotics?  

Certain antibiotics, chemo drugs and drugs for Hashimotos can induce B6 toxicity and copper deficiency.

Certain genetic mutations can cause B6 toxicity, but those are extremely rare, and would have been noticed much earlier in life.  

 

8 hours ago, Sassyred said:

Hello I have celiac, now raynauds, b6 toxity, and copper Deficiency, malnutrition disorder anyone else get these problems after being diagnosed with celiac disease? I have other issues as well graves, hashimotos, syncope, bradycardia/tachycardia,  fibromyaligia, neuropathy, chronic pain syndrome, etc. My main concern is b6 toxcity I can't get my levels down. I need help. I don't take vitamins or any b6 supplements. Nerologist says it's due to my celiac disease. I'm scared my levels are very high. Any advice would be greatly appreciated.  

 

Wheatwacked Veteran
15 hours ago, Sassyred said:

Nuerologist says it's due to my celiac disease.

It is his polite way of passing the buck.

Once you stop eating gluten your small intestine heals and nutrient absorption returns to normal, usually in 6 to 24 months. From then on it is more about the deficiencies in your diet than malabsorption. A good nutritionist familiar with the Gluten Free Diet might be helpful. 

16 hours ago, Sassyred said:

I have other issues as well graves, hashimotos, syncope, bradycardia/tachycardia,  fibromyaligia, neuropathy, chronic pain syndrome, etc.

The Graves and Hashimotos could be iodine deficiency. Iodine is absorbed in the small intestine. See if 1 to 3 sheets of Nori (=40 to 120 mcg iodine) a day helps. RDA is 150mcg(100%RDA) to 1100 mcg (upper limit RDA) per day. It takes 72 hours to start because of the Wolff-Chaikoff Effect. Get certified organic to avoid heavy metal contamination. Or three glasses of milk. If you want a test, urine is the only way to tell if you are ingesting enough. "The iodine urine test helps diagnose iodine deficiency or excess, as well as iodine-induced hypothyroidism (underactive thyroid) and hyperthyroidism (overactive thyroid). It is also useful in the diagnosis of autoimmune thyroid diseases, including Hashimoto's thyroiditis and Graves' disease.   https://www.walkinlab.com/products/view/iodine-random-urine-test"

The Standard American Diet has many vitamin and mineral deficiencies and the Gluten free version of it is worse. 

See an endocrinologist to see if you have secondary adrenal insufficiency. It would explain your pains.

I have been on prednisone since 2012 for what you describe as "fibromyalgia, neuropathy, chronic pain syndrome" and if I skip doses 5mg/day for too long or I get stressed the symptoms return. It actually started in 1984 but doctors could not find anything, so I just suffered. I wonder if I had been tested then? I am going to increase to 10 mg for a week to see if it helps my cold feet. I'll let you know. Since I reduced to 5 I haven't been sleeping well because of them but never made the connection until I read your post and it got me thinking.

 

Regarding the B6, it is likely a medication you were prescribed.  

Quote

These factors have wide-reaching adverse effects and may be triggering a toxic reaction in certain susceptible individuals: Past history or current use of certain medications like benzodiazepines, gabapentin, Lyrica, BCP, SSRIs, fluroquinolone antibiotics, PPIs, diabetes medications, statins, blood pressure medications etc.?   https://www.everywomanover29.com/blog/why-is-vitamin-b6-toxic-for-some-and-why-dont-symptoms-resolve-when-vitamin-b6-is-stopped/

Delayed onset of symptoms of Cipro and similar antibiotic toxicity.   https://www.hormonesmatter.com/fluoroquinolone-time-bomb-mitochondria-damage/

Wheatwacked Veteran

No need to wait. I took the extra 5 mg prednisolone last night and woke up four hours later with most of my "tells" improved. 1)when I flex my leg muscles while seated, they feel crunchy and creaky 2) toenails are sensitive 3) general achiness and pains like the flue, but I haven't had the flu or a cold since 2004 thanks to Cold-Eezz (zinc gluconate lozenges).

More on B6:  My lay person conclusion Perhaps supplementation with 840 mg Phosphatidyl Choline and 1000 mg Thiamine (or Benfotiamine may be quicker) will help. Cheap and safe. Almost half the US population does not consume enough choline anyway.   https://ods.od.nih.gov/factsheets/Choline-HealthProfessional/

Quote

the thyroid and thiamine share a reciprocal relationship. When the thyroid is suffering, mitochondrial damage is common and thiamine is low and vice versa.   https://www.hormonesmatter.com/question-doctor-lessons-learned-floxed-cipro/

This is hard to pin down but apparently B6 is used by the mitochondria to break down Lactate. Assumption: damaged mitochodria use less B6 leading to an excess.

Quote

Phosphatidylcholine (PC) is the most abundant phospholipid of the mitochondrial membranes    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5009247/

There has been some research for new drugs called Lipid Replacement Therapy to repair mitochondrial damage but "It should be clear that additional clinical studies are needed"   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6941554/    so don't expect any doctor to jump on that bandwagon.

Perhaps supplementation with 840 mg Phosphatidyl Choline and 1000 mg Thiamine (or Benfotiamine may be quicker) will help. Cheap and safe. Almost half the US population does not consume enough choline anyway.   https://ods.od.nih.gov/factsheets/Choline-HealthProfessional/

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

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,753
    • Most Online (within 30 mins)
      7,748

    Jay Heying
    Newest Member
    Jay Heying
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      If a Celiac person is successful in following a gluten-free diet, they can go into remission.   They may not have a reaction to gluten without a precipitating event like an injury or infection or even emotional or mental stress.   Following a strict gluten-free diet at home, then indulging in gluten containing products abroad without a reaction can be explained by this remission.  
    • Scott Adams
      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.  
    • Beverage
      I order tea from https://www.republicoftea.com/ All gluten free. Sign up for the newsletter and they send discounts regularly. 
    • Gigi2025
      Hi Theresa,  A few of my friends have your same story. You may be right about barley, etc.  18 years ago at a football game while clapping, suddenly my 4th finger was in agony.  It looked like a vein had burst. It was blue for a couple hours, then disappeared.  Finally realized it happened every time when drinking beer.  It's occurred several times over the years when opening a jar, lifting something that was a bit heavy, holding on to tight to something.  Immediate icing stops the pain and discoloration.  Now avoiding wheat in the US, it rarely happens.  Thanks for the reminder.  Will have Entero Labs run another test. Unfortunately they've relocated to Switzerland/Greece.
    • Russ H
      The EMA test is an old and less sensitive test for anti-tTG2 antibodies. It relies on a technician using a microscope to check for fluorescence of a labelled substrate (typically monkey oesophagus or human umbilicus), giving a simple positive/negative result. It is similar to running a standard anti-tTG2 test but with a high cut-off, making it more specific but less sensitive. Transient rises in tTG2 can be caused by e.g. viral infections and inflammation. Very high levels of anti-tTG2 (>x10 standard range) are almost certainly coeliac disease but moderately raised levels can have several causes apart from coeliac disease. Other food allergies can cause villi blunting but that is much rarer than coeliac disease or other non-coeliac causes. Not All That Flattens Villi Is Celiac Disease: A Review of Enteropathies
×
×
  • 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.