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

Ataxia and Celiac question


cmoore

Recommended Posts

cmoore Apprentice

Are there any indications whether or not Gluten related Ataxia can occur outside of a diagnose of Celiac ?


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

I think the answer to your question is still unknown.  The UK seems to be the leading research center in the world for gluten ataxia:

https://www.coeliac.org.uk/healthcare-professionals/diagnosis/spectrum-of-gluten-related-conditions/neurological-conditions/

I think there is a TTG6 antibodies test for gluten ataxia which is different than the TTG2 standard celiac screening test.  Not sure if you have to be on a full gluten diet for 8 to 12 weeks prior to the TTG6 test.  

https://www.verywellhealth.com/gluten-ataxia-symptoms-562398

You have been a forum member for many years.  Is the gluten free diet not helping?  Are you sure you are gluten free?  Consider the Fasano diet for a few months which is basically no processed foods and no eating out.  

https://res.mdpi.com/d_attachment/nutrients/nutrients-09-01129/article_deploy/nutrients-09-01129.pdf

I hope you figure it out.  

  • 4 months later...
catusmc Newbie
On 9/4/2019 at 6:40 PM, cmoore said:

Are there any indications whether or not Gluten related Ataxia can occur outside of a diagnose of Celiac ?

I have symptoms of Ataxia, but I am fine with gluten and it seems to be either rice, casein, or soy causing my neurological symptoms. I was in the hospital last year and had 9 months of little to no symptoms until a week ago I had a very bad cross contamination and I've been ruined all week.

  • 2 months later...
cmoore Apprentice
On 1/19/2020 at 10:04 PM, catusmc said:

I have symptoms of Ataxia, but I am fine with gluten and it seems to be either rice, casein, or soy causing my neurological symptoms. I was in the hospital last year and had 9 months of little to no symptoms until a week ago I had a very bad cross contamination and I've been ruined all week.

Wow!!

Scott Adams Grand Master

Ataxia can also be caused by diabetes, so consider a screening for that.

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

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,791
    • Most Online (within 30 mins)
      7,748

    PamelaMayot
    Newest Member
    PamelaMayot
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Russ H
      There is a predictive model for children on this link. Depends on sex, HLA genes and number of affected close relatives.  The model only goes up to age 12 so it would be interesting to know what the lifetime risk is. https://hputter.shinyapps.io/preventcd/
    • thejayland10
      That is a very good point I do not know if they truly ever went down. With my nutrient levels all being good, CBC, metabolic panel I assumed everything was fine over the years. Now Im worried this is refractory celiac or something else 
    • RMJ
      I don’t know how common it is, but it happens.  Total IgA going up is not necessarily celiac related.  The body can make IgA antibodies against all sort of things.   But if I understand correctly that until recently you haven’t had a celiac blood test since diagnosis, how do you know that your recent blood tests are a mild rise, vs never going down to the normal range? That also can happen, although not too common. Some people with celiac disease do react even to purity protocol certified gluten free oats. Removing oats from your diet for a few months and retesting is probably a good idea.
    • thejayland10
      interesting I did not know that was that common or could take that long.  When I was diagnosed 15 yrs ago I was told just follow gluten-free diet and follow up with primary care doctor (who never checked celiac panel again). I felt way better and all the major symptoms went away. It wasn't until recently at 25 (14 yrs after diagnosis) that I thought to follow up with a gastro doctor who then did a celiac panel and noted those minor elevations 3 months ago then I got them checked again by another doctor the other week and were showing roughly the same thing.  I am very strict with what I eat and dieitican was maybe thinking it could be oat flour. I do eat a fair amount of processed food but I will not touch anything unless it is certified gluten free.  Do you see this pretty commonly with others? Having mild rises in TTG IGA and IGA who have been on gluten-free diet for years? 
    • RMJ
      Do you have any other results from either of the two labs where you’ve been tested recently?  If so, are the newest results from that lab elevated over previous results? It took me 5 years to get all of my antibodies into the normal range. Then 3 years later one went up into the positive range.  I realized that I had started baking with a different brand of gluten free flour.  When I stopped using that flour the level went back to normal.  Has something changed in your diet, environment, activities, medications or other areas where you could possibly be exposed to gluten? 
×
×
  • Create New...