Gluten Ataxia?

[Keely]

This is confusing.

My 4 year old has severe progressive ataxia (poor walking), and dysarthria (no speech - he signs and is very bright). He has been diagnosed with a mitochondrial disorder and this was what his problems were blamed on.

This spring he had a positive AGA, and went on to get an endoscopy. The endoscopy showed a helicobactor infection, as well as leukocytic infiltrates in the stomach and duodenum, but the villi were fine and celiacs was ruled out for the time being.

We returned for our 6 month appointment and they had more results for us.

Brandon has a positive HLA test, as well as positive TTG, EMA, and AGA.

After doing alot of reading my understanding is gluten ataxia (ataxia and dysarthria mediated by antigluten antibodies attacking the nerves and cerebellum) is a diagnosis that does not require gut involvement.

Does anyone know anything about this diagnosis?

Our GI insists without gut involvement there is no celiacs, however the literature I have found says otherwise.

We are approaching our pediatrician and neurologist about this in the next few days, but im curious if anyone here has any experience.

Thanks in advance,

Keely

www.caringbridge.org/visit/brandonandtyler

[chrissy]

i think that both of these can be caused by celiac------which i would say he definitely has if he had a positive TTG and EMA. your son is pretty young still so the gut symptoms may just not be obvious---but if he has a positive TTG, then he has intestinal damage somewhere. those scopes can only go about 6 feet into the small intestine, which means that there is about 16 more feet that they can't test----and the damage can be patchy, so it can be missed by a biopsy.

hopefully, your son's problems are more celiac than mitochondrial.

[Guest nini]

the biopsies can easily miss damage, and with those specific tests being positive, he does have celiac. and yes it can affect the neurological system instead of the gut, your gi dr. is wrong.

[celiacgirls]

Whatever they call it, it seems your son's problems are at least partly due to gluten. Some doctors won't diagnose celiac without the positive biopsy. Some doctors recognize gluten intolerance as the same thing without the gut damage. Either way, the strict gluten free diet is the answer.

[Sophiekins]

It is often the case with neurological celiac disease that the gut is not involved. Print this article: Open Original Shared Link and take it with you to your pediatrician, neurologist and GI. This is written by THE expert on NCD (he discovered gluten ataxia). If you need more help, try posting something on this site: Open Original Shared Link I am pretty sure that there is a mom on there who has had similar experiences, whose son was recently diagnosed with NCD, and if she's not looking, the rest of them are seriously expert and can point you in the right direction from here.