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Gluten Ataxia confusion...

Mermaid's Mom

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Feeneyja Collaborator
Feeneyja
Posted

I think this site may be useful in finding ataxia specialists for diagnosis and monitoring. 

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Feeneyja Collaborator
Feeneyja
Posted

I am wondering if the other moms posting here had success finding a doctor?  My daughter had another accidental exposure (she made a mistake at a gathering with friends) and lost use of her foot again, had heaviness of her right arm, and minor uncontrollable tremors.  Lasted two days. And that was it for me. 

I have been contacting doctors and sending emails all over.  I'm hoping I have hit on some success. Dr. Bushara at University of Minnesota's Ataxia Center has info specifically on gluten related Ataxia. I called and spoke to his nurse, she spoke to him and called me back. She said he would definitely see my daughter but also gave me the name of a doctor in the Chicago area. Dr. Puneet Opal at Northwestern. I emailed him and he is going to see my daughter, has experience diagnosing gluten ataxia and knows that they need to be looking for different antibodies (i.e. Not positive for celiac disease does not rule it out...that's what I keep getting from doctors).

Also, I keep sending this paper to all of my daughter's doctors. It's very helpful;

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