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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,912
    • Most Online (within 30 mins)
      7,748
    westman3d
    Newest Member
    westman3d
    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

    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • 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.