Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 induced small fiber neuropathy

Carlyallyn
 Share

Recommended Posts

Carlyallyn Newbie
Carlyallyn
Posted

Hello,

I appreciate any feedback and would appreciate if it could stay on the more positive side of things. I am 3 months gluten free and have seen some improvement in my neuropathy but still have daily tingling/burning/discomfort. For those who have seen resolve of these symptoms, how long did it take to recover? Was it slow? Any feedback about your experience with this is appreciated. 

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted

Welcome to the forum, @Carlyallyn!

I would suggest taking a high potency gluten free B-complex and 5000IU of D3. B-vitamins and D3 are key neurological nutrients.

How long do you believe you lived with celiac disease before you were diagnosed?

Scott Adams Grand Master
Scott Adams
Posted

I agree that supplementation can help.

The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.

Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.

 

 

 

pjrhancock Newbie
pjrhancock
Posted

Thank you so much for this info!  I was diagnosed just a year ago, at age 69, and suffer from similar neuropathy symptoms. I was advised that all I needed to do was to avoid gluten, and take Vitamin D3 and Calcium supplements!

Scott Adams Grand Master
Scott Adams
Posted

I would include a good quality B complex as well because low B12 levels, or issues metabolizing it, can also lead to those symptoms. 

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
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,952
    • Most Online (within 30 mins)
      7,748
    Althea W
    Newest Member
    Althea W
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Mnofsinger
      Facial pain

      By Mnofsinger · Posted

      Hi @CeliacMom502, As always, consult a medical professional on any advice you receive.  I experience have experienced this exact symptoms you're referring to and will receive them, typically after being accidentally glutened. I've recently been researching this (that's how I came across this posting), because I've been trying to nail down how long I've actually had the celiac genes "activated" or if I was just born with it. Now I wasn't diagnosed until 2023 with Celiac Disease, but not all these other health issues I've had previously point to it all connecting. In 2013 I ended up with Bell's Palsy that I had facial paralysis on one side of my face, where I couldn't even get a twitch for six months, but it took almost a year for "full recovery". I have now came to the conclusion that, because of the B12 vitamin deficiency caused by celiac disease (when not following a strict gluten free diet), caused me to have prolonged recovery from this, because the nerves were healing at a much lower rate> I'm not sure if your daughter has ever had Bell's Palsy, but ever since I have, some of my symptoms when I accidentally get glutened (including right now as I type this message 😄) include a migraine that goes across my eyes, and a shooting pain as you have described that will go across my left cheek and upper jaw, in addition to pain behind my left ear, and painful to the touch. Now, I did immediately go on a gluten free diet, and almost all these symptoms vanished after 3-4 months, but that time frame depends upon the "damage" already done previously.  Hope my situation helps even now this is now almost three years later from your message!  
    • Scott Adams
      Celiac-safe home for summer rental in Washington DC

      By Scott Adams · Posted

      It's nice to see celiac-safe options out there for guest homes.
    • Scott Adams
      How many grams is there in one slice of wheat bread?

      By Scott Adams · Posted

      Your situation involves interpreting elevated Deamidated Gliadin Peptide (DGP) IgG levels, which can indeed be confusing without clear symptoms or additional diagnostic tools like a biopsy. Here’s a possible approach to help clarify your next steps: Understanding DGP IgG: DGP IgG is a blood test often used to help diagnose celiac disease, particularly in individuals with IgA deficiency. However, since you’ve confirmed you don’t have IgA deficiency, the focus should shift to other celiac-specific tests, such as tissue transglutaminase IgA (tTG-IgA) and endomysial antibodies (EMA-IgA), which are more specific for celiac disease. Elevated DGP IgG alone is not diagnostic of celiac disease but may indicate gluten-related immune activity. Non-Celiac Gluten Sensitivity (NCGS): You’re correct that NCGS does not typically show abnormalities in blood tests like celiac disease does. NCGS is diagnosed based on symptoms (e.g., bloating, fatigue, brain fog) that improve on a gluten-free diet, after celiac disease and wheat allergy have been ruled out. Since you don’t currently have symptoms, NCGS seems less likely in your case. Possible Next Steps: Monitor Symptoms: If you remain asymptomatic, it’s reasonable to continue eating gluten and retest after some time. This is because celiac disease can develop or become symptomatic later, and ongoing gluten consumption is necessary for accurate testing. Repeat Testing: Consider repeating the tTG-IgA test, as it is the most sensitive and specific for celiac disease. If this is also elevated, it strengthens the case for further investigation. Genetic Testing: If available, HLA-DQ2 and HLA-DQ8 genetic testing can help rule out celiac disease if negative, as nearly all celiac patients carry one or both of these genes. However, a positive result doesn’t confirm celiac disease, as these genes are common in the general population. Dietary Trial: If testing remains inconclusive and you develop symptoms, a supervised gluten-free diet trial might provide clarity. However, this should only be done after thorough testing, as going gluten-free prematurely can interfere with accurate diagnosis. Biopsy Limitation: Since a biopsy is not available in your town, you’ll need to rely on blood tests and clinical judgment. If your tests remain inconclusive but you develop symptoms, you may need to travel to a facility that can perform a biopsy for definitive diagnosis. In summary, if I were in your position, I would continue consuming gluten, monitor for symptoms, and retest with more specific celiac markers (tTG-IgA and EMA-IgA) in a few months. If symptoms develop or tests remain ambiguous, consulting a gastroenterologist for further guidance would be advisable. Always work with a healthcare provider to interpret results and tailor next steps to your specific situation.
    • trents
      What should I do with these test results?

      By trents · Posted

      The fact is, we know very little about the mechanism of NCGS at this point. We know much more about celiac disease. Some experts believe that NCGS can transition into celiac disease. And I do not agree with what you read about NCGS not producing any elevated antibody tests. IMO, and I have no scientific data to support this, it's just a hunch base on reading many, many forum contributor test result reports, elevated igg antibodies may signal a transition from NCGS to celiac disease.  But there are other things besides gluten that can cause elevated dgp igg and ttg igg antibody levels. So, yes. I would continue to monitor the situation if I were you and get regular testing. Not necessarily every 6 months but yearly anyway if you can. In the meantime, if you know gluten causes you unwellness, continue to avoid it.
    • Scott Adams
      Anyone else with very high HDL?

      By Scott Adams · Posted

      Statins are a widely prescribed class of medications used to lower cholesterol levels and reduce the risk of cardiovascular events, such as heart attacks and strokes. Extensive scientific research, including large-scale randomized controlled trials, has demonstrated their efficacy and safety for most individuals. Statins work by inhibiting an enzyme involved in cholesterol production in the liver, thereby reducing low-density lipoprotein (LDL) cholesterol, often referred to as "bad" cholesterol. Importantly, statins do not "remove all fats" from the body, as suggested in your post. They specifically target cholesterol synthesis and do not deplete essential fats, such as those required for brain function, hormone production, or nutrient absorption. The body still maintains its necessary fat reserves, including healthy fats, which are critical for physiological processes. Regarding the claim that statins cause internal bleeding by making blood vessels permeable, this is not supported by scientific evidence. Statins are not known to increase the risk of internal bleeding. However, like all medications, they can have side effects, such as muscle pain or, in rare cases, liver enzyme abnormalities. The benefits of statins in reducing cardiovascular risk generally outweigh the risks for most patients, particularly those with a history of heart disease or high cholesterol. The suggestion to use odorless garlic, magnesium, vitamin K, and calcium for heart health may have some merit, as these supplements can support cardiovascular function in certain contexts. For example, magnesium is involved in muscle and nerve function, while vitamin K plays a role in blood clotting and bone health. However, these should not replace evidence-based treatments like statins when prescribed by a healthcare provider. Always consult a medical professional before making changes to medication or starting new supplements, as individual health needs vary.
×
×
  • Create New...