I'd actually..kill..(Just kidding)

To have a wave of symptoms..come and go!!

My symptoms are worse than..EVER..

They have progressed..for about 10 years..( I'm 68 now)

I t all started VERY slowly..first I walked..off balance.then like I was drunk.

Anxiety .panic attacks.I thought it was the.lights in stores.or my failing marriage ..so almost.4 years ago after he had enough.he moved out ..I moved back to my home town..

Have had.every test known to man..done..ALL..come back negative..

Then met a nutritionist who works for a high end supplements company.

She said..my symptoms sounded..like gluten ataxia..

So went gluten free

First two weeks felt..slightly.better..more like..different..

However.NOW all symptoms are worse..

From I've read on line..that's normal...(what ever...NORMAL...is)

I reluctantly..have an appointment with my primary..the end of July...

All I can say..I hope he has a lot of...TIME..for..me!!

Searcher and Diana, I have had all of these symptoms since what has been diagnosed my my neurologist as Mild Cerebellum Ataxia and I have been gluten-free and Paleo for several years and do alright with it if I don't cheat at all. There are varied opinions about if gluten problems are curable. I am gluten-sensitive (NCGS) Non-Celiac Gluten Sensitive and am jus tlearning to deal with the Ataxia.

It is scary and I have no idea about how quickly it will progress. I have an appointment with the hea of neurology at the uCLA Ataxia Center in LA in August (had to wait 2 months for the apt.), and will see my 1st neurologist this Friday with a lot of questions..Your symptoms seem much more intense and irregular than mine.

I wish you all the support and expert doctors possible through this challenge.

Dear Searcher, My symptoms are pretty much the same 24/7. Mainly, I have problems with my gait/balance, dexterity (writing/printing/fine motor skills), speech (slurred), swallowing/coughing/choking. Sometimes I have blurred/double vision, mostly in my left eye. Some days are a little better then others (less tired), but I always have ataxia symptoms. My ataxia has progressed. I was diagnosed eleven years ago, although had small symptoms starting about eight years before diagnosis. I'm 60 years young...,ha! ;o)

Check out Episodic Ataxia Type 2 and see if that seems to fit your symptoms at all.

Symptoms in my case seem consistent with some getting worse as time goes by. I have unbalanced gait which is getting progressively worse over last 2 1/2 years, writing --forget it, speech is getting more slurred, constipated, dizzy or woozy when I move a lot, bladder urgency at times, nystagmus in eyes, messy eating--getting worse, fingers turn white and numb when a little cold, recently experienced musle spasms and seem to choke on liquids some where I did not earlier. Think that is all my symptoms except getting tired easily and then again suffering from insomnia. These are pretty much 24 /7 manifestations of the ataxia.

If you have a diagnosis..YOU are fortunate..I've had...teams of neurologists...none know what it is I have..

The last one has given IT a name...senile chorea...but he admitted it's just.a name..why..WHERE..it comes from..my guess is as good as any..

Now..I MIGHT sound..negative..but.I'm NOT unhappy..

You see..I put MY.trust in..GOD...NOT in ...man..

HE IS the..CREATOR..HE knows what I have..and HE knows..WHY too

I may never get my health back.(some never do) .but..I STILL..Will..PRAISE HIM!!!!

JJ, your suggestion about episodic ataxia was very helpful Wikipedia also mentioned a "Dizzy Machine", which is for home use and various home movement treatments. I am being tested for dzziness on Friday and will ask the therapist about it.

Hi, this is for all responding to this thread.
JJ mentioned EA2. I am not diagnosed yet, though I have had diagnoses galore. All of my symptoms, except for my kidney problem and diplopia, come and go all the time. When I was younger I had less symptoms and the progression is mainly in the number of symptoms. The problem with diagnosis is that most diseases start either in middle age or go away by middle age - I have them since I was 11 and still have them at 67. I believe that I have EA1 because it fits my list of symptoms AND starts and goes on when mine did.
About the cause of symptoms that come and go: I know of only three types of diseases that have symptoms like that. Multiple Sclerosis, the episodic ataxias, and Lupus. Look them up and see if there is a fit.

At a recent UK conference on Ataxia I learned that to date over 60 different types
of Ataxia have been identified, that takes some getting your head around :slight_smile:

I don’t know which is worse, symptoms being there all the time and somehow
getting used to coping with them. Or, when they seem to flare up out of the
blue and you have to start from scratch learning how to manage them again.

Planning/making arrangements is largely a thing of the past, I find most things
I do are spur of the moment, and they end up being more enjoyable. If I try
to plan, it causes stress because I start to worry whether when the time comes
I’ll be able to honour the commitment.

Gluten Ataxia has been mentioned here, and I have a comment. My test for
this was negative but… Recently I got fixed braces, I can’t chew and for a
couple of months I’ve had no bread, cake, biscuits etc. I’m having to purée
almost everything.

At first I was feeling my usual awful Ataxia self but gradually it dawned on me,
I think I actually feel ‘better’, there is a change and I wonder if it is actually due
to not eating Gluten?

Years ago, I was actually told I had Candidiasis, this is also attributed to eating
certain foods. It can cause inflammation anywhere in the body and even effect
the brain, symptoms can be similar to Ataxia. This can happen to both men and

So many theories when you can’t get an exact diagnosis :slight_smile: xB

Beryl and All, Thanks so much for all your contributions to this forum. It helps me a lot to share information and feelings.

Gluten avoidance in all forms, including all grains, plays a very large role in my day-to-day health. Do you participate in the gluten ataxia group? I am self-diagnosed gluten-sensitive and both NCGS and celiacs must stay away from gluten 100%. If you decide to follow the gluten-free diet is mandatory not to eat gluten in any form, including dairy and any grains.

As you have read, I write about all this in my soon to be published cookbook-memoir about the dangers of the gluten-free diet fad. I combine modifications of that and Paleo for my best diet.Am in the middle of following up on my next ataxia session with my first neurologist and shared the UCLA Ataxia Center, Dr Perlman, director.

Searcher, This disease is a real test of our patience. As you know, ataxia sufferers are pioneers in the field, and many times must teach our doctors. My most significant task and focus is to track all my symptoms and report everything I learned from this forum so i can inform my neurologist. Even though he is familiar with ataxia, he is ignorant about gluten. I want to stay in the moment and record it all and not dwell on my emotions from symptom to symptom because I get panicky and the stress increases, as does the cortisol to my brain.

Dear Searcher,

My symptoms aren't as many as you have. I won't list them, because it isn't necessary. I have my usual constant symptoms. However, like you, I have those that come and go with time. I wake up in the morning and wonder what the soup du jour is going to be. I have one that has lasted for several years, and now appears to be going away.

I definitely believe this is all related to ataxia.

I am sure it isn't easy for you, and I wish you well dealing with your situation.


Dear Searcher, Can't really say my ataxia symptoms have changed in the eleven years since diagnosis, except they've progressed (gotten worse). For instance, I started using a cane about four years ago to help prevent falls, which I've had many of (before the use of a cane). I now use a quad-cane, as it gives me more stability than a regular one. I also use an Access Active Rollator for pleasure walking outside. My gait/balance, dexterity, speech, vision and swallowing is effected 24/7. It seems sometimes I cough more, or am more fatigued, things like that. Slight but annoying changes...,ha! Yes, my theory is that ataxia symptoms can change to some degree, depending on the type of ataxia one has, but that's just my opinion! My best to you...,;o)