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. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      3

      New issue

      Nope its just me because they can eat wheat and when we use same pans I found out last year thanks to you guys and the autoimmune website im learning,we are not to share though clean, same with sponge. I just wish doctors understood. I am with new gi and new pcp but im falling apart because blood work is fabulous.Im so ANGERY.I have reached out to my local...
    2. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      My journey is it gluten or fiber?

      If you haven't noticed a difference yet, bump up your Thiamax. Add in another Thiamax with breakfast and lunch. Increase the NeuroMag as well. You can add in another Benfotiamine, too. Thiamine is safe and nontoxic even in high doses. Taking more is fine. I had to bump mine up several times when first starting. It's a matter of finding what...
    3. knitty kitty
      - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      13

      Insomnia help

      Hello, @hjayne19, About half of the people with Celiac disease react to the protein Casein in dairy the same as to gluten with the inflammation and antibodies and all. Reacting to Casein is not the same as lactose intolerance nor a dairy allergy. Damaged villi are incapable of producing lactAse, the enzyme that digests lactOse, the sugar in dairy....
    4. trents
      - trents replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      13

      Insomnia help

      You may be cross reacting to the protein "casein" in dairy, which is structurally similar to gluten. People assume lactose intolerance is the only problem with dairy. It is not, at least for the celiac community.
    5. Scott Adams
      0

      Can Your Gut Microbiome Predict Celiac Disease Years in Advance?

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,101
    • Most Online (within 30 mins)
      7,748
    Steve Olson
    Newest Member
    Steve Olson
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Jmartes71
      New issue

      By Jmartes71 · Posted

      Nope its just me because they can eat wheat and when we use same pans I found out last year thanks to you guys and the autoimmune website im learning,we are not to share though clean, same with sponge. I just wish doctors understood. I am with new gi and new pcp but im falling apart because blood work is fabulous.Im so ANGERY.I have reached out to my local representative, in Stanislaus but its just weekly stuff.Im going to need to physical go down there.Any recommendations on what to say and do because this is absolutely ridiculous. If I didn't have my husband though we are really hurting with one income, I would absolutely be one of the homeless population. Thats alarming begging to be heard about a diagnosis that was given as an adult and dealing with this, medical needs to stick to patients regardless of switching insurance or doctor. 
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      If you haven't noticed a difference yet, bump up your Thiamax.  Add in another Thiamax with breakfast and lunch.  Increase the NeuroMag as well.  You can add in another Benfotiamine, too.   Thiamine is safe and nontoxic even in high doses.  Taking more is fine. I had to bump mine up several times when first starting.  It's a matter of finding what works for you.  Everyone is different.   Stick with it.  Some of the health improvements are very subtle and gradual.   Keep going!  You're doing great!
    • knitty kitty
      Insomnia help

      By knitty kitty · Posted

      Hello, @hjayne19, About half of the people with Celiac disease react to the protein Casein in dairy the same as to gluten with the inflammation and antibodies and all.  Reacting to Casein is not the same as lactose intolerance nor a dairy allergy.  Damaged villi are incapable of producing lactAse, the enzyme that digests lactOse, the sugar in dairy.  When the villi grow back, the villi can resume making lactase again.  I react to casein. Keep in mind that part of the autoimmune response to gluten and casein is the release of histamine.  Histamine causes inflammation, but it is also powerful excitory neurotransmitter, causing heightened mental alertness.  Histamine release is what causes us to wake up in the morning.  Unfortunately, excessive histamine can cause insomnia.  Our bodies can make histamine, but foods we eat contain different amounts of histamine, too.  Our bodies can clear a certain amount of histamine, but if overwhelmed, chronic high histamine levels can keep inflammation going and cause other health problems.   I got very weary of playing Sherlock Holmes trying to deduce what I was reacting to this week, so I adopted the low histamine version of the Autoimmune Protocol diet, a Paleo diet designed by a doctor with Celiac, Dr. Sarah Ballantyne.  Her book, The Paleo Approach, has been most helpful.   The low histamine AIP diet cuts out lots of foods that are known to be irritating to the digestive tract.  After a few weeks, when my system was calmer and healing, I could try adding other foods to my diet.  It was much easier starting with safe foods, adding one thing at a time, and checking for reactions than trying to figure out what I was reacting to with so many variables.  I learned to recognize when I had consumed too much histamine from different combinations of foods.  Everyone is different and can tolerate different amounts of histamine in their food.  B Vitamins help us make enzymes that break down histamine.  Vitamin D helps regulate and calm the immune system.  Supplementing with Thiamine helps prevent mast cells from releasing histamine.  Keeping a food-mood-poo'd journal helps identify problematic foods.   I hope you will consider trying the AIP diet.
    • trents
      Insomnia help

      By trents · Posted

      You may be cross reacting to the protein "casein" in dairy, which is structurally similar to gluten. People assume lactose intolerance is the only problem with dairy. It is not, at least for the celiac community.
    • hjayne19
      Insomnia help

      By hjayne19 · Posted

      Hi @knitty kitty  Just revisiting this to get some help. I found after understanding the extent of my anxiety, my sleep got a little better. Flash forward to a few weeks later I have had a few bad sleeps in a row and I feel desperate for a good nights sleep. I understand worrying about it won’t help but one thing I had tied things too was dairy. Initially when I went gluten free I felt great for the first few weeks then started having some stomach pain. So thought maybe I was lactose intolerant. I started eating lactose free Greek yogurt and that did help take the cramping away I guess. Over the last few months I haven’t eaten it every single day and I went a few weeks without it. The last few nights I did have a small amount with breakfast and noticed that was the only new thing I’ve really added to my diet. I had seen a few other posts about this. Is it possible to still react to lactose free? Would this potentially be a dairy allergy? Or something else. 
×
×
  • 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.