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Ataxia Support

Does Anyone know of Doctors who are familiar with Gluten Ataxia in the Philadelphia, Delaware, New Jersey, New York Area or Maryland Area?

PLEASE, IF ANYONE KNOWS OF DOCTORS WHO CAN HELP MY DAUGHTER WITH HER ATAXIA, WHICH WE FEEL WAS CAUSED BY DAMAGE TO HER CHIARI MALFORMATION BY GLUTEN ANTIBODIES WHEN SHE DEVELOPED GLUTEN INTOLERANCE, PLEASE LET ME KNOW.

NONE OF THE DOCTORS (NEUROLOGISTS) THAT SHE HAS SEEN SINCE 2009 HAS HAD ANY SIGNIFICANT KNOWLEDGE OF GLUTEN ATAXIA, SPORADIC GLUTEN ATAXIA, ETC, AND WE ARE SO FRUSTRATED.

THANK YOU FOR YOUR ASSISTANCE IN THIS MATTER.

Columbia University Medical Center, NY NY is familiar with gluten ataxia

You can contact the ataxia foundation at http://www.ataxia.org/contact/contact-form.aspx

Good luck to you and best wishes

Thank You Michael and Cicina

Cicina, I found a doctor on ataxia.org, tried to make an appointment with him but could no longer practiced where listed so made appt with another "Ataxia" doctor, drove an hour to Dover, Delaware to get a doctor that spent 5 minutes with us, said he was not familiar with Gluten Ataxia, agreed with the doctor who suggested I get a second opinion because he also was not familiar with Gluten Ataxia. This is the TOPPER. On his way out of the exam room, he smuggly said, "When you find out more about this, let me know." I replied, "You are the doctor, isn't it the doctor's job to research for their patients?" Bad experience and waste of time.

But Thank You for your suggestion. I will check out Michael's suggestion.

So sorry about your bad experience, Lisa. Check Michael’s suggestion by all means. Good luck to you!

Although not in US
Prof. Mario’s Hadjivasilou at Sheffield Hospital, UK
is very well known for his knowledge and papers on Gluten Ataxia

Alan Thomas

ATAXIA Cymru Wales

Thank You Alan Thomas,

I know about Dr. Hadjivassilou, I have read much of his information and given copies of his articles to doctors I have seen in Delaware--But that is not helping me and I can not go live in Europe.

The doctors in US need to get on the ball, Gluten and other problems resulting from the genetic modification of our food is not going away, just going to get worse so they need to learn about the issue and then learn how to help their patients. . . SMH, FRUSTRATED- My daughter and other children need help with this,