Get email alerts Get E-mail Alerts Sponsor: Sponsor:

Ads by Google:

   Get email alerts  Subscribe to FREE email alerts

Celiac Ataxia Or Dyspraxia ?

7 posts in this topic

My 11 yr old son was dx with dyspraxia a couple of yrs ago due to lack of muscle tone in legs/wobbly gait, clumsy, can't write neatly, speech issues etc but really the only tests they did was catching a ball and walking/standing in certain positions!

I've felt for a while now that maybe it could be celiac ataxia (my son also gets a rash on his shoulders) but gps don't seem to know anything about it.

Yesterday I attended a presentation by a Dr Stuart Currie a neurologist who works with Dr Hadjivassiliou and is doing research on celiac ataxia .... all of my sons symptoms were listed, plus a lady in the audience said her son had the same symptoms but was dx dyspraxia too!

I find it quite worrying if kids are being dx incorrectly and are doing further damage to their bodies.

Ive tried many times to get him blood tested for celiac but he won't do it so I'm going to have to try and make him gluten free as I really don't want further damage/growth and puberty delays.

Has anyone being in a similar position?

Can damage be reversed?

Because gluten ataxia is neurological...can a proper dx be given? (presumably damage won't necessarily show in the intestines?)

I realise without a dx for celiac its going to be difficult getting my son to stick to gluten free as hes a fussy eater (doesnt eat veg and rarely meat) plus he'll get snacks what he wants when I'm not there!

Feeling quite anxious about how best to help it worth me trying to see a neurologist with him?



Share this post

Link to post
Share on other sites

Ads by Google:

Hello Veggiegal,


I was diagnosed with gluten ataxia last year and have done much of the reading on the research material that is available.  I'll try and answer some of your questions.


The current testing for celiac is just for the intestinal and skin manifestations.  Gluten ataxia will not usually be diagnosed through this test as people with gluten ataxia will show normal.  There is a test that is currently being developed that tests for ttg 6 which has been found to be prevalent in gluten ataxia.  Current testing of an antibody resonse against ttg 2 (intestinal) and ttg 3 (dermatitis herpetiformis) will not catch the neurological manifestation (gluten ataxia) so it might be irrelevant in your son's case.


Current research shows that if it's caught early enough, the effects of gluten ataxia will show an improvement.  However, if there is ongoing gluten ingestion the effects are irreversible.  What happens is the antibodies attack the Pukinje cells in the cerebellum and these cells do not regenerate.  Long term damage will show up on an MRI as a shrinkage of the cerebellum.


The only way to diagnose it at present is to prescribe a gluten free diet and see if the person responds to it.  The symptoms usually go away within a year.  Hadjivasilliou strongly recommends a totaly gluten free diet which includes not eating processed gluten free foods as these still can contain up to 20 ppm of gluten.


Share this post

Link to post
Share on other sites

Hi Kamma,

Thanks for your very interesting reply. The presentation I went to was really good but somewhat went over my head in explained it much more clearly.

Yes, thats what I was afraid of that the damage to the cerebellum would be irreversible but its scary to think it could be upto a year before seeing improvement as without a proper dx, I don't want to give up wondering if im doing the right thing by my son. (ive just tried him on some gluten free pasta so its going to be difficult to cut that out too as pasta is his fave dish).

Was you dx by the ttg6? What were your symptoms? did you see any improvement?

Are the ttg2, ttg6 and ttg3 all blood tests?

My son also occasionally has a skin rash and had very bad teeth as a toddler)

Thanks so much for replying.

(modified due to my bad spelling etc!)

..sorry you did say the only way to dx is by going gluten free....i just hope they hurry up with the ttg6 trials


Share this post

Link to post
Share on other sites

I'm sorry, I wasn't as concise as I could be with my wording.  I should have said it can take up to a year for all the issues to resolve.  Some resolve more quickly than others.  In my particular case, the head fog, fatigue and slurring of the speech resolved within months but the balance issues took longer.  With the balance issues you notice small incremental improvements. 


I was tested by the current methods and showed inconclusive.  I took a gluten challenge for seven weeks which should have been longer but the last four weeks of it was spent on the couch in total collapse.  I couldn't move without falling over.  After eliminating gluten I felt better, less fatigue within weeks but it was only by eliminating all gluten (ie. not eating processed gluten free foods) that I really started seeing the results.  I'm almost back to normal.  I do have some issues with balance (clumsy, fall over) occasionally.  Everything else has resolved.


The ttg is an enzyme and autoimmune response against that is what they test for.  They are all blood tests.  Hadjivassillou also found that there is a higher prevalence of IgG antibodies in the brain in post mortem examinations but since these lack specificity (IGg antibody response could be to a number of things so they lack a 'specifity' to a certain autoimmune disease like celiac) it's not used as a marker for gluten ataxia.


I wish I could offer some suggestions in how to help your son make the leap into eating gluten free.  It might be valuable to talk with him and say you want to try doing this for a certain period of time in the hopes that you can see results.  If, in that time, he can also see results it might give him more motivation to push forward. 


Starting a whole foods diet is kind of retraining your body to recognize what is healthy.  If you have used a lot of processed foods in your diet, your taste buds are used to a lot of fat, salt and sugar and your body 'craves' them.  You kind of have to go through a detox period but you come out of it really liking the taste of the foods you now eat.  You can start off making alot of stews (beef and chicken), soups and mashed potatoes (who doesn't like mashed potatoes with tons of butter!) and using herbs (McCormicks seems to be okay) on the vegetables and of course there is always meat.  Beans, chick peas.  You could always go mexican and get the corn tortillas or do gluten free natchos.  You have to be careful with some of the naturally gluten free products as they can be cross contaminated with gluten.  There are some good companies out there that try to ensure minimal contamination right from the farmer to the processing.


Share this post

Link to post
Share on other sites

You've given me alot to think about there. Ive already explained to him I want to try him gluten free which he got upset about and then said "ok as long as its gradual and I don't know about it"...

Because hes not a vegi eater ive been making him smoothies mixed veg/fruit and always a banana for texture and flavour and so far he thinks its just fruit in there :) but I'll try your tips too..and yes he loves mashed potato!

Its very promising to hear you've had a good improvement also :) (he also suffers fatigue and slurred speech plus uncontrolled tones to his voice)

Thanks again and all the best :)


Share this post

Link to post
Share on other sites

I hope going gluten free helps resolve his issues, veggiegal.  That would be wonderful.  Please do keep me posted on how it goes.




Share this post

Link to post
Share on other sites

Oh I hope so too.....I will keep you posted Kamma :)


Share this post

Link to post
Share on other sites

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

  • Forum Statistics

    • Total Topics
    • Total Posts
  • Topics

  • Posts

    • Kidney disease question
      GFR ranges are very strange.  We went through this with my husband.  Did you notice in Icelandgirl's link that there is no range that is considered good and normal?  I just had mine tested and the report said that normal was > 60.  As your report says, your value is only a problem if there is other evidence of kidney damage.
    • Kidney disease question
      Hi Matt I'd love answers to this one too. My own levels have varied since I have been monitored, over the last three or so years.   I asked my GP about this and I seem to recall she said to me that levels of hydration affect this number.  i.e. when my figures were in the 90s it was because I was super-hydrated. When my numbers were in the 70s she wasn't worried, either! I'm hoping someone with a better knowledge of these matters will chime in but the last time I was tested my gastroenterologist was very pleased with my kidney and liver function numbers - so it seems to me that when my own numbers were in the 70s on a couple of occasions I must have been  less well hydrated when I had the test those times? And that these numbers are therefore subject to variation.     
    • New to this gluten-free life
      Kareng is correct.  There are also a number of good reference books on celiacs and gluten free issues.  Also several magazines.  The main thing is to find out the hidden and unusual sources of gluten, and also to be very careful when eating at restaurants.  I got glutened quite a few times at restaurants before I learned to triple check and began to find safe places.  Good luck. 
    • Kidney disease question
      Hi Matt, Since celiac impacts the whole body...I think kidneys are affected.  I have kidney stones and they are super fun(not) and my urologist says that it's fairly common with celiac and malabsorption.  I don't know specifically about kidney disease, but when I was in the hospital passing my stones...prior to passing, my GFR was around 60.  A few weeks later when my doctor did bloodwork it was 87.  Here is some info that may help.
    • Most New Celiac Patients Show Normal Bone Density
      Some doctors recommend that patients with newly diagnosed celiac disease get scanned for bone density. Several researchers recently set out to assess the bone density results in a cohort of patients with celiac disease. View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      Kind Regards,
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it. Thank You,
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
    • Most Online

    Newest Member