I am in the (hopefully) final stages of diagnosis. My neurologist is focused on immune mediated cerebellar ataxia after more testing than I knew existed! Immune because I have Celiac and have been gluten free for over 10 years. And yes it’s 100%. If it’s not, my reactions are quick and severe so my body doesn’t give me a choice. LOL. Right now she has me on IVIg treatment with minimal results, but it’s at least slowed the rapid progression I have been having.
The next step is to go to the UCLA Ataxia Center because they are specialists. My question is:
- What was your experience as a patient?
- What tests did they run and how long for results?
- Were you happy you went?
- Did you keep going? Or did you go back to your local neuro for long-term care?
Thanks. I’m extremely nervous and looking for input. Don’t be afraid to ask me anything. I am an open book kind of person. LOL
Spritedarter
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Does your Neurologist suspect Gluten Ataxia, just wondering. 
xB
Hi,
Exactly what slowed the progression?..I have cerebellar ataxia…Does my being gluten sensitive have any neg effects on my condition? Avoiding gluten is so difficult…
Should I contact UCLA ataxia center?
Thank you,
Michael PS I am 65… and quickly losing my ability to walk…
Yes the current thought is gluten Ataxia. The only catch is that I am gluten free and gluten ataxia is usually with undiagnosed celiacs. But my symptoms have come on out of nowhere and progressed so quickly that it doesn’t act like gluten Ataxia either. My case has everyone scratching their heads!
IVIg slowed the progression. It was cool! Gluten Ataxia is a specific type of immune mediated ataxia. It is related to having Celiac disease. I wouldn’t go gluten free unless you have celiac. It’s a massive pain! LOL. Your doctor can run a celiac blood panel for preliminary answers. If those are positive, then an endoscopy is the way you get a diagnosis. Even then it’s not guaranteed to be causing the ataxia. They just think it can be a cause because it’s the immune system.
UCLA requires a referral from your current neurologist. If you have cerebellar Ataxia, it wouldn’t hurt to go and get some answers. They are the experts!
What is lVlg? not familiar…
Michael
IVIg stands for Intravenous Immunoglobulin. Immunoglobulin is part of your blood’s plasma. It has antibodies in it to fight germs or disease. When people donate blood, this part can be separated out. Then it can be given to people with Ataxia through a vein in their arm, or IV. It helps make their immune system stronger in cases of Ataxia that are caused by immune reactions.
I am willing to try ANYTHING to slow the progression…
Sincerely,
Michael
I see Dr Perlman there and consider her the top specialist in the country. She knows a great deal about gluten Ataxia. I go as often as I can afford and haven’t found a local neurologist for follow up care who knows much. Go see Dr Perlman and take someone with you to remember the info you forget. It will be worth your time.
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Thank you so much! That makes me feel so good to hear. They are calling me this week to make my first appointment so I still don’t know what doctor I will be seeing. I’ll ask for Dr Pearlman 
Good luck. Be pro-active! Sounds like you are.
Mary Englund
Love Dr Perlman she is in charge of the clinical studies my daughter participates in. The best place you can go too! Good luck. 
First impressions have me frustrated. I was told to call after a week of sending files so I can schedule appt. I did and they said no one reviewed the file and that was strange to them. They sent a message directly to the doctor about my files and told me to call back 3 days later. I did and was told the same exact thing! I just want to schedule an appointment. Sorry for venting. I am just progressing so fast and only want to schedule an appointment. So frustrated.
This sounds like crossed wires somewhere. Can you ask anyone to act as an advocate, and pursue this enquiry on your behalf xB
I don’t have any connections there. Hoping they will have it reviewed by this Tuesday. Fingers tremoring, and crossed!