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

Gluten Ataxia Questions

suziq0805

By suziq0805
in Related Issues & Disorders

Recommended Posts

suziq0805 Enthusiast
suziq0805
Posted

I have heard of gluten ataxia but thought it just applied to people that struggled with balance. I just stumbled on a couple of internet articles that also suggested gluten ataxia symptoms can include trouble moving muscles. I am a musician and had struggled being able to move my muscles fast enough to play up to the level I knew I was capable of. It wasn't that my fingers wouldn't move, but it was so hard to get them to. Could this be gluten ataxia or did I find a couple of inaccurate articles? I tried googling a bit but wasn't having any luck coming up with articles that I could be totally sure were from credible sources.

Is it possible to have gluten ataxia without celiac? Bloodwork and biopsy were negative but I've been diagnosed with non-celiac gluten sensitivity.

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

Celiac.com Sponsor (A8-M):


AVR1962 Collaborator
AVR1962
Posted

I have heard of gluten ataxia but thought it just applied to people that struggled with balance. I just stumbled on a couple of internet articles that also suggested gluten ataxia symptoms can include trouble moving muscles. I am a musician and had struggled being able to move my muscles fast enough to play up to the level I knew I was capable of. It wasn't that my fingers wouldn't move, but it was so hard to get them to. Could this be gluten ataxia or did I find a couple of inaccurate articles? I tried googling a bit but wasn't having any luck coming up with articles that I could be totally sure were from credible sources.

Is it possible to have gluten ataxia without celiac? Bloodwork and biopsy were negative but I've been diagnosed with non-celiac gluten sensitivity.

Tough questions and I am not expert but I have dealt with gluten ataxia for 9 months, and amazing as this may seem I am a piano instructor. The part of the gluten ataxia that I feel the article may be indicating was how the muscle for balance are affected. I would walk into a room and hit my shoulders on the doorjams. Or I would get out of bed and try to walk turning right and my body would be tracking left. Muscles were definately not cooperating in this way. As far as speed and keeping up, perhaps it could be to the ataxia, I blamed it on my foggy brain and just my general ability to maintian my thought processes.

In your case being diagnosed non-celiac with gluten ataxia is makes me again wonder about the testing process. The ataxia was one of the hardest symptoms to deal with and one of the last to leave. You have to be so so so careful and completely free yourself of any possible contact for the ataxia to leave. It's not just a matter of being sensitive. I was on a gluten-free diet for 6 months, had an accidental crumb or two here and there that got me which just kept the ataxia going. For me, I had to get past 4 weeks without CC or glutening before mine went away which is not easy. I went thru my kitchen, changed my make-up, took no chances with spices.

You said you are having trouble getting your fingers to move? Do they feel frozen kind of in a way? Cramping going on in your hands? Any vision issues, eyes jumping on the page of music? It would be my guess that your fingers are moving as fast because the brain still isn't clicking (circuits in the brain) quite as fast as it should be. However, if the muscles feel like they are hardening and cramping, think of a couple options. I will get this hard feeling in my msucles sometimes and my leg won't want to move right or my hands will have trouble functioning properly. I have found a burpless Omega 3,6,9 works very well. If the hands are troubled by cramps potassium and/or magnesium might be able to ease that.

ravenwoodglass Mentor
ravenwoodglass
Posted

If you have gluten ataxia you can still have negative tests for celiac. False negatives are more common than what many doctors think.

It can affect muscle movement as well as balance, at least it did with me. I even had difficulty swallowing by the time I was diagnosed.

If you have had all celiac testing done then it wouldn't hurt to try the diet strictly but do be aware that nerve issues can take a while to resolve.

Takala Enthusiast
Takala
Posted

This is one of the reasons I stopped playing music decades ago, but I also had cervical spine damage and the combination was doing me in, along with some chronic (it's a feature w/ me, not a bug) tendonitis.

I don't have a formal celiac diagnosis, but had enough damage to fill a book, that the Neurologist from Hell

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. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Fermented foods, Kefir, Kombucha?

      very interesting thanks for the info
    2. Florence Lillian
      - Florence Lillian replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

      More cookie recipes ...thanks so much for the heads-up Scott. One can never have too many. Cheers, Florence.
    3. Russ H
      - Russ H replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting...
    4. cristiana
      - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

      Hi @Charlie1946 You are very welcome. I agree wholeheartedly with @knitty kitty: "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis. I noticed it after standing in cold wind, affecting...
    5. Scott Adams
      - Scott Adams replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,911
    • Most Online (within 30 mins)
      7,748
    AngieMcK24
    Newest Member
    AngieMcK24
    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

    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Severe severe mouth pain

      By Russ H · Posted

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
    • cristiana
      Severe severe mouth pain

      By cristiana · Posted

      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
    • Scott Adams
      gluten free cookie recipes

      By Scott Adams · Posted

      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
×
×
  • 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.