I was diagnosed with Gluten Ataxia Disease 2 years ago. I went to every specialist and checked myself into the hospital for tests. I had a brain MRI. Every doctor said I was fine. I was so dizzy 24/7. But no doctor helped me. They said to take anxiety meds. Then I went to a holistic doctor. She diagnosed me with Gluten Ataxia. I have been gluten free for 2 years but am still very dizzy. I did research and The Mayo Clinic has docs who specialize in AC. I completed an application for an appointment but they turned me down. Sooo disappointed. Don’t know what to do. My life has been hell. Dizziness has taken over my entire life.
When Were You Diagnosed? Which Type (If Known)?
April 2022. Gluten Ataxia Disease.
How Has Ataxia Impacted Your Life?
Horrible. Dizzy ALL THE TIME.
What is One Thing You’d Like the People to Know About Ataxia?
That there is no help. None of my docs could help.
Disclaimer: The views and opinions expressed in this story are those of the individual member and do not necessarily reflect the views of the National Ataxia Foundation (NAF). Any medical information shared in this story is based on personal experience and has not been reviewed or endorsed by NAF or a medical professional. Always consult with your own physician or qualified healthcare provider before making any changes to your care or treatment plan.
What is Your Ataxia Story?
As an organization dedicated to improving the lives of those affected by Ataxia, we believe that each story has the power to inspire, connect, and empower others. We invite you to share your personal Ataxia journey with us.
Are you here to read the personal stories, but haven’t yet joined as a member? We hope you find comfort in reading about the experiences of others on their Ataxia journey. We invite you to join as a member to receive a new member story each month. It’s free, and you’ll be kept up-to-date on the latest developments in the Ataxia community.
Recent Member Stories
J.C. Myers
Ataxia comes as a dominant gene through my great grandfather, Ernest, my grandmother, Ernestine, and my mother, Leslie. My mother’s brother died young and we Read More…
Susan Harding
I’ve been living with a genetically acquired Ataxia since birth but was only clinically diagnosed in 1992. My mother was diagnosed in 1976. Her brother Read More…
Keith Heiken
I am 62 years young. I was diagnosed with SCA8 when I was 24. Dr. Byrd took a skin sample to help with other types Read More…
Sarah Altis
It started about 12 years ago. My dad was diagnosed with Ataxia. I wasn’t really sure what that meant, but I spent the next several Read More…
Bella
I’m Bella and from China, thanks to this platform so I could share my story here. My diagnosis was very easy, not that complicating. I Read More…
Michal
Hello Everyone, I’m a pharmacist and have been living for half a century. I learned about my wife’s Ataxia in October of this year. I Read More…
