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Keely

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  1. 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
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