Gluten ataxia symptoms

[Coranne]

Approximately how long does it take for gluten ataxia symptoms to subside after going on a gluten-free diet? I’m probably NCGS. Thanks.

[trents]

Welcome to the forum, Coranne!

It will vary significantly from person to person and depends in large part on how much damage has been done to you neurologically. And some people never get complete resolution because the damage has progressed too far. But, you will help the healing process along significantly if you deploy some good, gluten-free supplements: B-complex, B12, D3 Magnesium glycinate or Magnesium citrate and zinc. Multiple vitamins don't contain these in concentrations high enough to help very much so add these thing in additionally.

[Coranne]

Thanks so much for your reply. I was wondering whether it is common to have ataxia symptoms for a few hours one day and feel fine for a few days after that. Im noticing symptoms like mild  lack of coordination while walking. They seem to come and go. I haven’t been glutened for a week now. Thanks.

[trents]

What you describe seems normal to me. And you are very early in your gluten free journey. I would expect the bouts of ataxia to become less frequent as you continue to distance yourself from gluten and progress in your healing. You stated you are probably NCGS. Have you been formally tested for celiac disease?

Edited October 27, 2023 by trents

[Coranne]

Celiac blood test done last month came negative.  B12 level was normal. I’m now on a gluten-free diet since i have GI symptoms that interfere with my daily routine when I eat gluten. A brain mri done last year showed no ataxia but im having ataxia symptoms  again right now after a year of not having them. So I’ll go back to the neurologist. Suggestions of anxiety or dehydration have been made by some doctors. However it doesn’t feel like any of those to me. Thanks so much.

[trents]

Achieving a truly gluten free lifestyle is much more difficult than most think when they first start. Gluten is present in so many places in the food industry that you would never expect to find it and can be hidden by terminology such as "malt flavoring" found in many breakfast cereals. And then there is the issue we call "cross contamination" where non gluten food get contaminated with gluten through agricultural and manufacturing processes and handling. I offer this for your review: 

 

Edited October 27, 2023 by trents

[Scott Adams]

I believe that some of my ataxia/nerve issues lingered for a couple of decades, not because I wasn't gluten-free, but because I wasn't supplementing properly.  After including magnesium citrate and other supplements around five years ago, most of the issues I had, including tingling and numbness in my feet, have subsided. 

[Coranne]

3 hours ago, trents said:

Achieving a truly gluten free lifestyle is much more difficult than most think when they first start. Gluten is present in so many places in the food industry that you would never expect to find it and can be hidden by terminology such as "malt flavoring" found in many breakfast cereals. And then there is the issue we call "cross contamination" where non gluten food get contaminated with gluten through agricultural and manufacturing processes and handling. I offer this for your review: 

 

Thanks so much! Very helpful!

[Coranne]

41 minutes ago, Scott Adams said:

I believe that some of my ataxia/nerve issues lingered for a couple of decades, not because I wasn't gluten-free, but because I wasn't supplementing properly.  After including magnesium citrate and other supplements around five years ago, most of the issues I had, including tingling and numbness in my feet, have subsided. 

Thanks for your suggestions. I’m so glad I came across this forum! 😊