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Celiac Ataxia Or Dyspraxia ?
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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 him...is it worth me trying to see a neurologist with him?

Thanks

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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.

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Hi Kamma,

Thanks for your very interesting reply. The presentation I went to was really good but somewhat went over my head in parts...you 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

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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.

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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 :)

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

 

:)

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

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