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

Peripherial Neuropathy

Jill0711

Recommended Posts

Jill0711 Rookie
Jill0711
Posted

I know that peripherial neuropathy can be related to Celiac; however, in my case, the numbness and tingling didn't start until after I was gluten-free. I have no history of having it except about two years ago I had it as a side effect of a medication. My next thought was vitamin or nutrient difficiency. I thought it was B-12 related so I started eating eggs everyday and it seemed to help. Now it is back. I did have a lot of vitamins and minerals tested, but am waiting on the results. By the way, I didn't start eating the eggs until after I had the blood drawn.

Anyone have peripherial neuropathy as a result of the gluten-free diet? Any advice on how to make it better?

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

Celiac.com Sponsor (A8-M):


cahill Collaborator
cahill
Posted

I know that peripherial neuropathy can be related to Celiac; however, in my case, the numbness and tingling didn't start until after I was gluten-free. I have no history of having it except about two years ago I had it as a side effect of a medication. My next thought was vitamin or nutrient difficiency. I thought it was B-12 related so I started eating eggs everyday and it seemed to help. Now it is back. I did have a lot of vitamins and minerals tested, but am waiting on the results. By the way, I didn't start eating the eggs until after I had the blood drawn.

Anyone have peripherial neuropathy as a result of the gluten-free diet? Any advice on how to make it better?

do you have any blood sugar issues ??

the B vitamin deficiencies and blood sugar issues are the first two things I am considering as possible reasons this is occurring for me. I didnt notice it until after being gluten free, but to be honest I was so ill before going gluten free I might not have singled it out from everything else going on.

rosetapper23 Explorer
rosetapper23
Posted

I recently read an article that said that iron anemia can also cause peripheral neuropathy because of lack of oxygen to the cells. Could that be a possibility?

I've had peripheral neuropathy since I was 15 from celiac and it worsened during chemo when I was 50, but it's a lot better now--still there, but better.

IrishHeart Veteran
IrishHeart
Posted

Anemia---iron deficiency, B-12 deficiency or Folate (B9) deficiency--can all cause neuropathy. Since it is quite common amongst us, it is wise to have all those checked. All are remedied by certain foods and/or supplementation if necessary.

Hope you find the reason!!

It's maddening , isn't it?? I burn and tingle and go numb everywhere---like crazy.

I am hoping that it resolves as I have just begun supps. for the folate deficiency I just discovered after I requested the testing. I knew my B-12 was fine, glucose normal and thyroid perfect...then, I read about folate levels in celiac.....go figure. It was B9!!

We have to be detectives..... :blink:

  • 7 months later...
twe0708 Community Regular
twe0708
Posted

So from what I have read so far, you need to make sure your iron, b12 and folate levels are where they should be. Does anyone know if ther are certain foods or drinks we should avoid if you have this? In the last two months I have experienced a burning feeling on my calf. as if i scrapped my skin or have a sunburn No other symptoms and it goes away within 24 to 48 hours. I was experiencing a few months ago that my legs would feel like they were going to give out if I was on them too long, which was weird bc I hadn't felt like I had been on them that long but now I know. I also experience a slight tingling/ numb feeling when I rub lotion on my ankle and top of my feet in the morning, but other than that I don't feel it unless putting on lotion or rubbing my hand over the area. Is it necessary to see a doctor or do we just need to lead a healthy life? I'm tired of doctors!

  • 2 weeks later...
Jamie15 Newbie
Jamie15
Posted

I was diagnosed with small fiber neuropathy they believe was caused by the gluten and vitamin deficiencies I had. Going gluten free and taking D helped quite a bit and gave me a lot of my mobility back. I also take monthly B12 injections to help with the tingling. After still having some pain(burning, tingling), I decided to look into other food intolerances and took a test. Cutting out several other foods I reacted to helped enough for me to get off my pain medicine I was taking daily. I do still communicate with the doctor that diagnosed me but she is across the country so I do not see her. I am hoping my neuropathy was caught early enough for a possible reversal once I get my diet right. I know how frustrating the neuropathy is and hope you find some relief soon.

AVR1962 Collaborator
AVR1962
Posted

I know that peripherial neuropathy can be related to Celiac; however, in my case, the numbness and tingling didn't start until after I was gluten-free. I have no history of having it except about two years ago I had it as a side effect of a medication. My next thought was vitamin or nutrient difficiency. I thought it was B-12 related so I started eating eggs everyday and it seemed to help. Now it is back. I did have a lot of vitamins and minerals tested, but am waiting on the results. By the way, I didn't start eating the eggs until after I had the blood drawn.

Anyone have peripherial neuropathy as a result of the gluten-free diet? Any advice on how to make it better?

Numbness and tingling in the hands and feet? Are these the only neuro issues you are having? Any burning or pins and needles poking feeling?

I'll attempt to answer this from my experiences. I was having a pins and needles poking feeling between my toes, between my fingers and in my eyes off and on for 2 years before my symptoms came to a head. I went to the eye doc, I mentioned this to my doc, no one had an answer. It wasn't all the time, just occasionally.

When I finally got real sick the pain in my feet was bad, at this point I was still on gluten. My feet were burning, I was having tingling and numbing, the pins and needles poking in my feet were constant. I have been off gluten now for 7 months and while the ataxia did go away, I can only keep all the other symptoms away by supplementing with a fair amount of B complex and L-carnitine.

The ataxia I related directly to the glutens. I think though the neuro issues are related to a deficiency. My labs showed very low marks before I started supplements, and doc wants me to keep doing what I am doing as it does work.

What I have questioned though, and maybe this will help you too, is am I having this because my system became so wrecked that my body was no longer absorbing nutrients OR have the nerves been damaged from something else. I honestly felt I was going to be diagnosed with MS, read about how an MRI can show stroke or MS by the location of lesions on the brain. Patients with MS and diabetes have many of the same symptoms due to nerve damage as well but I am assuming their issues are not due to a deficiency. The complex I take is recommended for people with problems with MS and diabetes. I have been tested for diabetes and nothing in my MRI to be concerned about.

I have had plenty of questions myself. I odered a book about neuropathy and another book on diet for nueropathy and I am hoping to learn more.

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

Celiac.com Sponsor (A8-M):


Lori2 Contributor
Lori2
Posted

I have had plenty of questions myself. I odered a book about neuropathy and another book on diet for nueropathy and I am hoping to learn more.

Please keep us posted on what you learn. I'm just on the verge of asking for something to help with the burning at night. Still hoping that the nerve damage will heal and wondering what I can do to speed it along.

AVR1962 Collaborator
AVR1962
Posted

Please keep us posted on what you learn. I'm just on the verge of asking for something to help with the burning at night. Still hoping that the nerve damage will heal and wondering what I can do to speed it along.

Will do!

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. Scott Adams
      - Scott Adams replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      23

      Pain in the right side of abdomen

      Vitamin B9 (Folate): The UL for Folic Acid is set at 1,000 mcg (1 mg) per day for adults. This limit primarily applies to synthetic folic acid found in supplements and fortified foods, not naturally occurring folate in food. High intake of folic acid can mask the symptoms of Vitamin B12 deficiency, which can lead to neurological damage if left untreated....
    2. Heatherisle
      - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      23

      Pain in the right side of abdomen

      Hasn’t been given folic acid as GP says vit b and folic acid can’t be given together which I find strange cos any time I did venepunctures B12 and folate were always grouped together? Her folate level was 2.2, just below the normal level
    3. Heatherisle
      - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      23

      Pain in the right side of abdomen

      Hi Thanks for your input. Don’t know which exact medication she’s on, keep asking but she keeps forgetting!!! I still think her Vitamin D levels might be low cos she had the back pain and tingling last year( around March /April) and levels were low so she had 3 month course then and it helped. She’s coming home next week (as in to ours) for a long weeke...
    4. knitty kitty
      0

      Dairy and Celiac: studies

    5. Scott Adams
      - Scott Adams replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      how long does it take for the genetic blood test for celiac to come back?

      Genetic testing for celiac disease (the HLA-DQ2 and HLA-DQ8 genes) usually takes about 3–10 days to come back, depending on the lab your doctor uses, though some places may take up to two weeks. The test itself doesn’t diagnose celiac disease—it only shows whether you carry the genes that make celiac possible. About 30–40% of people have one of these genes, ...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,668
    • Most Online (within 30 mins)
      7,748
    Hope Durbin
    Newest Member
    Hope Durbin
    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

    • Scott Adams
      Pain in the right side of abdomen

      By Scott Adams · Posted

      Vitamin B9 (Folate): The UL for Folic Acid is set at 1,000 mcg (1 mg) per day for adults. This limit primarily applies to synthetic folic acid found in supplements and fortified foods, not naturally occurring folate in food. High intake of folic acid can mask the symptoms of Vitamin B12 deficiency, which can lead to neurological damage if left untreated. This is because folic acid supplementation can correct anemia caused by B12 deficiency without addressing the underlying neurological damage. Some studies suggest that excessive folic acid intake might increase the risk of certain cancers, such as colorectal cancer, particularly in individuals who have precancerous lesions.
    • Heatherisle
      Pain in the right side of abdomen

      By Heatherisle · Posted

      Hasn’t been given folic acid as GP says vit b and folic acid can’t be given together which I find strange cos any time I did venepunctures B12 and folate were always grouped together? Her folate level was 2.2, just below the normal level
    • Heatherisle
      Pain in the right side of abdomen

      By Heatherisle · Posted

      Hi Thanks for your input. Don’t know which exact medication she’s on, keep asking but she keeps forgetting!!! I still think her Vitamin D levels might be low cos she had the back pain and tingling last year( around March /April) and levels were low so she had 3 month course then and it helped. She’s coming home next week (as in to ours) for a long weekend so hopefully some TLC from mum and dad will help!!!    
    • Scott Adams
      how long does it take for the genetic blood test for celiac to come back?

      By Scott Adams · Posted

      Genetic testing for celiac disease (the HLA-DQ2 and HLA-DQ8 genes) usually takes about 3–10 days to come back, depending on the lab your doctor uses, though some places may take up to two weeks. The test itself doesn’t diagnose celiac disease—it only shows whether you carry the genes that make celiac possible. About 30–40% of people have one of these genes, but only a small percentage actually develop celiac disease. However, if the test is negative for both genes, celiac disease becomes extremely unlikely, which is why your doctor mentioned possibly canceling the endoscopy if the result is negative. If it’s positive, it just means celiac remains a possibility and further testing, like a gluten challenge followed by endoscopy, helps confirm it. Since you have an identical twin, it’s definitely useful information to share if the genes are present, because twins share the same genetic risk. It sounds like you found a very thorough GI doctor, which is great, especially since she’s also monitoring nutrients and looking at the whole picture.
    • knitty kitty
      Pain in the right side of abdomen

      By knitty kitty · Posted

      @Heatherisle, You're not a bother at all.   What "Vitamin B medication" is she taking?  Is it just B12 and folate?   All eight B vitamins, Vitamin D and other vitamins and minerals need to be supplemented because the malabsorption of Celiac disease affects all the nutrients.  All the B vitamins work together.  Just supplementing one or two can throw the other B vitamins out of balance causing worsening deficiencies in other B vitamins.  Doctors are undereducated about nutrition.  Heavy sigh. This is worrisome.  These are all symptoms of Gastrointestinal Beriberi caused by Thiamine deficiency.   An Erythrocyte Transketolace Activity Assay needs too be done to check her Thiamine level.  But because this test is so expensive and takes so long for the results to come back, it's much simpler to administer 500 mg Thiamine Hydrochloride several times a day for several days and look for health improvement (WHO recommendation).  Doctors can administer Thiamine Hydrochloride by IV along with a "banana bag" with all the B vitamins in it.  (Riboflavin gives it the yellow color.).  I've experienced vitamin deficiencies which my doctors didn't recognize.  When thiamine and B12 deficiencies started affecting my brain function, my doctors wrote me off as a depressed hypochondriac.  I had Gastrointestinal Beriberi myself.  I took over the counter thiamine hydrochloride at home and had health improvement within an hour.  High doses (500 mg) of Thiamine are needed to "jump start" the body into proper functioning.   Apologies if I was curt.  I get very frustrated because the nutritional deficiencies that occur with Celiac disease are not addressed properly.  All I can do is tell people about what I learned on my Celiac journey.  Have you visited my blog?  Tap on my name, look for pull down menu Activities and go to blog.   I do hope your daughter can get the nutritional support she needs.  I'm very worried.  Please keep us updated!
×
×
  • 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.