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

Peripheral neuropathy

artistsl

Recommended Posts

artistsl Enthusiast
artistsl
Posted

What is peripheral neuropathy? I have had total numbness at the tips of my toes for maybe twelve years now. It's accompanied with other strange symptoms such as symmetrical rash, joint pain, fatigue and brain fog. The doctor told me that I probably stubbed my toes or injured them by wearing uncomfortable shoes. I'm wondering if it could be peripheral neuropathy caused by gluten. It doesn't hurt. I just have no feeling at the very tip of my toes. Now that I know that my other symptoms are tied to gluten I'm wondering whether my toes are really "injured" like the doc says or if it's caused by my gluten intolerance and if so, is there a chance it will go away over time?

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

Celiac.com Sponsor (A8-M):


Ennis-TX Grand Master
Ennis-TX
Posted
4 hours ago, artistsl said:

What is peripheral neuropathy? I have had total numbness at the tips of my toes for maybe twelve years now. It's accompanied with other strange symptoms such as symmetrical rash, joint pain, fatigue and brain fog. The doctor told me that I probably stubbed my toes or injured them by wearing uncomfortable shoes. I'm wondering if it could be peripheral neuropathy caused by gluten. It doesn't hurt. I just have no feeling at the very tip of my toes. Now that I know that my other symptoms are tied to gluten I'm wondering whether my toes are really "injured" like the doc says or if it's caused by my gluten intolerance and if so, is there a chance it will go away over time?

Yeah sounds like my gluten ataxia induced peripheral neuropathy, It can be just another issues with celiac disease, in my case my immune system also attacks my nervous system, and brain with gluten exposure, not just the gut. Goes away over time, yes but it takes a long time, and in my experience sticks around the most after a gluten exposure and is MUCH more sensitive to gluten then my gut. ANY kind of even residue exposure and I find myself able to pick stuff out of the oven no feeling of burning, dropping stuff all the time, seems even inhaled does this,  I notice it can take over a week before I start getting heat sensitivity back to some degree in my hands. NOW I have not had any type of gluten exposure it seems in a few months, and after over 4 years of gluten free diet I am finding some feelings I used to not have in my hands and feet coming back. Not much but I can actually feel a burn on the back of my hand from the over rack I got a few days ago dull but it is there which is odd. Starting to notice some other areas of my body more sensitive to touch, then they used to be.

plumbago Experienced
plumbago
Posted
8 hours ago, artistsl said:

What is peripheral neuropathy? I have had total numbness at the tips of my toes for maybe twelve years now. It's accompanied with other strange symptoms such as symmetrical rash, joint pain, fatigue and brain fog. The doctor told me that I probably stubbed my toes or injured them by wearing uncomfortable shoes. I'm wondering if it could be peripheral neuropathy caused by gluten. It doesn't hurt. I just have no feeling at the very tip of my toes. Now that I know that my other symptoms are tied to gluten I'm wondering whether my toes are really "injured" like the doc says or if it's caused by my gluten intolerance and if so, is there a chance it will go away over time?

Hi,

I belong to a diabetes forum (I don’t have diabetes, I just like to learn) and came across this recent post on the four kinds of neuropathy. The poster says you can get a nerve conduction test, EMG.

Open Original Shared Link

Yes, I’ve heard gluten can damage nerves, but I don’t know much else about it. It may be other things instead or as well. I would keep plugging away!

Plumbago

 

ETA:

Here is what Medscape has to say:

“Neuropathies occur in 2 forms: an isolated deficiency (usually of a B vitamin) or a complex deficiency resulting from several concurrent metabolic disorders (usually including malabsorption).

“Gluten-sensitivity neuropathy (celiac disease)

“Antibodies to gluten in wheat, barley, and oats in susceptible individuals also attack Purkinje cells and other neurons, leading to cerebellar ataxia, myoclonus, neuropathy, and neurologic symptoms. Adhering to a strict gluten-free diet may stabilize neurologic symptoms.”

Nutritional Neuropathy (medscape)
Open Original Shared Link

knitty kitty Grand Master
knitty kitty
Posted

Open Original Shared Link

Nutritional neuropathies are discussed in this paper.  I find it amusing Celiac Disease was not specifically mentioned as a cause of nutritional deficiencies.  Celiac Disease causes malabsorption which results in malnutrition.  Deficiencies in several B vitamins and some minerals can cause neuropathy, sometimes rather quickly.  

I've had peripheral neuropathy that has resolved with vitamin supplementation.  I hope this article can help you, too.

 

artistsl Enthusiast
artistsl
Posted
  • Author

Thanks guys. I used to get really bad spells of dizziness which has seemed to have gone away since going gluten free. I never would have connected the two issues together. I used to work in a bakery for Kellogg which was when I ended up going to the hospital for what they diagnosed as vertigo. But I'm kind of starting to think that my dizziness could have been from breathing in the flour from the silos. It got to a point where it was difficult for me to stand up. But you mention nutritional neuropathy and I do seem to feel really great when I take vitamin B12. Sounds like I need to find a new doctor who would be willing to run some tests.

artistsl Enthusiast
artistsl
Posted
  • Author

Also, does anyone know whether there is a specific gene associated with dermatitis herpetiformis and/or gluten ataxia or is it the same genes expressed in those who suffer from intestinal issues?

knitty kitty Grand Master
knitty kitty
Posted

Just recently found this article about a woman suffering from neuropathy which was caused by copper deficiency caused by Celiac Disease.

Open Original Shared Link

Copper deficiency myeloneuropathy due to occult celiac disease.

"...the authors suggest that some cases of ataxia associated with celiac disease are likely due to copper deficiency myeloneuropathy."

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

Celiac.com Sponsor (A8-M):


Hellodee2 Explorer
Hellodee2
Posted

I have neuropathy. Mine is worse with cold. My hands and toes get so bad I cry. I don't know what to do to make it better but just wanted you to know you aren't alone. I hate feeling alone with this disease.

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 klmgarland's topic in Dermatitis Herpetiformis
      1

      Help I’m cross contaminating myself,

      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 ...
    2. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

      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...
    3. Scott Adams
      - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?

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

      I think I am gluten intolerant

      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS). 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. Your situation is a classic p...
    5. klmgarland
      - klmgarland posted a topic in Dermatitis Herpetiformis
      1

      Help I’m cross contaminating myself,

      It took three years and several doctors and many tests, and lots of steroids and other bad medicine that didn’t do anything to finally find a competent doctor to get diagnosed with dermatitis herpetiformis. I am meticulous about a completely gluten free diet now for more than a year and things were finally getting better until they weren’t. Who knew tha...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,905
    • Most Online (within 30 mins)
      7,748
    Croissantl0v3r
    Newest Member
    Croissantl0v3r
    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

    • 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.
    • Scott Adams
      I think I am gluten intolerant

      By Scott Adams · Posted

      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  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.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      It took three years and several doctors and many tests, and lots of steroids and other bad medicine that didn’t do anything to finally find a competent doctor to get diagnosed with dermatitis herpetiformis.  I am meticulous about a completely gluten free diet now for more than a year and things were finally getting better until they weren’t.  Who knew that if I fed my dear invalid cousin a hamburger and used the same hand to eat a couple of her gluten free fries that I was cross contaminating myself.  Who knew that if my husband makes a sandwich and leaves crumbs on the counter which I sweep away with a dish towel then wash my hands and dry them on this same dish towel and then touch my lips that I potentially cross contaminated myself.  Who knew that just wiping off the table crumbs could still leave gluten on the table that has to be washed off with soap and water.  Who knew when my husband heats a tortilla by draping it over the toaster that gluten residue is possibly left behind.   Who knew that if my husband eats a gluten product and I kiss him on the lips that I was cross contaminating myself.  Who knew that if I should walk into the bakery to get my gluten free cupcake if they have been mixing up a batch of flour batter and there could be flour particles in the air I could inhale and contaminate myself.  Who knew I needed to be careful that my grand baby shouldn’t put there fingers in my mouth because they just ate a biscuit and I was cross contaminating myself.   Eating gluten free is the easy part.  But know one tells me how to live in the real world filled with gluten contamination just waiting to happen!   There I feel better getting all that off my chest but I feel isolated and alone in this journey. I sleep with a back scratcher, stand in my freezing cold pool, glob on tons of triamcinolone for the rash on my knees, back, bottom, elbows and ankles.  I use bottles of Scalpicine for the extensive rash on my scalp.  All my make up, medications, soaps, shampoos, cleaners, detergents are all gluten free.  But I still have a rash and I fear I will gouge and claw holes in my head and body before I can’t figure out how I am exposing myself to gluten.  I don’t even want to leave the house anymore.  I never eat any food or drink offered me at anyone’s home ever.  I can drink wine and eat potato chips!  Hurray for me, I finally agreed to try Dapsone even though I read it’s hard on your body but if I don’t get some relief am going to have a nervous breakdown from lack of sleep and high anxiety. Can anyone point me in the right direction? Thank you,  Helpless but Hopeful
×
×
  • 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.