Looking for others with gluten ataxia or problems with vestibular balance and vertigo.

Replies to This Discussion

Permalink Reply by John "JC" Colyer on January 2, 2012 at 4:07pm

I went to an Ear, Nose and throat Doctor that tested me because I have vertigo, they gave me no answers , its frustrating! Wish we could get relief, we must stay strong!

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Permalink Reply by cristian ugarte on January 2, 2012 at 5:11pm

HI

I AM, CHILEAN, MALE, 59 WITH SCA3 SINCE YEAR 2004 AND HAVE THE SAME SYMTHOMPS YOU DESCRIBE.

PERYSPHERAL NEUROPATHY & PAINLESS  WICH SEEM TO BE INSOLATING MYSELF SPECIALLY AFTERNOONS.

THE OTHER SYMPTHOM IS DIZZINESS, EXTREM VERTIGO THAT CANNOT WALK.

SORRY MY ENGLISH. YOU CAN MAIL ME TO paisajista@hotmail.com

best regards & HAPPIEST NEW YEAR.

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Permalink Reply by Michael Ward on January 2, 2012 at 5:52pm

MissCake2:

I spent over $10,000 with vestibular doctors. They are crooks!
My cerebellum is shrinking! It can not be fixed there is no cure to date.
I have the same symptoms and a couple more.
Exericise and strict diet are the only things that help me to manage.
To do nothing I would be in a wheel chair.
With my program I walk on my own.
Stay social be positive!
It will help people to be comfortable around you.
I can not eat gluten at all.
My speech is much clearer by going gluten free.
For balance only core training works.
Of course we are all different and what works for me may not work for someone else.
I have spinal cerebellar ataxia. Late on set.

Lucky for me to have a caring family.
To not have any support would make it harder.

Kind regards,
Michael

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Permalink Reply by Jeannie Ball on January 2, 2012 at 10:40pm

Hi MissCake2,

It sounds as if I have allot of the same symptoms, or did have anyway. I have been off Gluten for a little over 5 years now but I wasn't diagnosed having gluten sensitivity. I had a blood test but I came out on the normal range. My Dr. suggested I try it anyway.I find it helps! At first I found it hard to go without gluten/bread but when I gave up all flour's it seemed so much easier for me instead of trying to substitute other foods.

I have Sporatic SCA. Meaning they don't know which one I have. When I let go of the combination of flour and refined sugars somehow together they help me with my symtoms with my gait etc. I've become much more steady reaching for things, balancing etc.

I was really good about doing the Wii fit plus on the Nintendo for a few years I stoped a few months back because I was doing so well walking etc I thought I was almost cured and I didn't need to anymore. Wrong! I really have noticed a real diffrence in my gait etc. So I guess this was good to find out! I have started back  it using it cause it helped so much.

 Do you exersize? I find even though I hate exersize for the sake of exersize, using the Wii fit plus tricks my brain. I play balancing games etc., that help my brain (cognative thinking). Not only that but I love feeling that my body is more in control of the way it moves and how it reacts to things but it actuall helps my mood too! To me that's huge!

I think we all tend to issolate having Ataxia. I tend to also, but force myself to reach out on a regular basis. I have been working with my foods and schedualing my life now so I don't have to take meds right now. I'm really working on keeping it that way as long as I can! :-)

I find also that since I have Quiet time every morning that really grounds me and helps my mood though out my day. I can tell when I don't make that time. I started with only 5 mins. It verys daily but most of the time I'm doing 40 mins now. I love it!

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Permalink Reply by Marie Turner on January 3, 2012 at 5:58am

I had the tests and I rather hoped there was something I could do but I have Cerebellar Ataxia and is more of an acceptance that things will get worse.Having said that I am quite happy with my lot and am grateful for the things I still have like my husband, a grown up family who are independent,my eyes that can see lovely landscapes etc.Yes life is not as easy and there are challenges but I would rather be handicapped through disability than through my mind. Good luck with a diet .I believe it can work wonders.

Marie

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Permalink Reply by MissCake2 on January 3, 2012 at 1:57pm

Thank you for responding!  I'm curious - if you don't mind sharing, what is your exercise program that you do?  I know I need to find something that works for me, but it is difficult to figure out what is most important to work on.  I used to run, and do a lot of walking but now I am unable to run.  Walking is okay, but I run into things a lot and get too embarrassed to use a cane.  I definitely cannot use a treadmill...  So then I try to think of things I can do at home.

Michael Ward said:

MissCake2:

I spent over $10,000 with vestibular doctors. They are crooks!
My cerebellum is shrinking! It can not be fixed there is no cure to date.
I have the same symptoms and a couple more.
Exericise and strict diet are the only things that help me to manage.
To do nothing I would be in a wheel chair.
With my program I walk on my own.
Stay social be positive!
It will help people to be comfortable around you.
I can not eat gluten at all.
My speech is much clearer by going gluten free.
For balance only core training works.
Of course we are all different and what works for me may not work for someone else.
I have spinal cerebellar ataxia. Late on set.

Lucky for me to have a caring family.
To not have any support would make it harder.

Kind regards,
Michael

• ▶ Reply

Permalink Reply by MissCake2 on January 3, 2012 at 2:06pm

Thank you to all of you for taking the time to reply!  I am feeling better already just knowing that there are others out there with my symptoms.  I had almost given up finding anyone.  Everyone with ataxia I spoke with before didn't have the vertigo or gluten problems.

I probably should clarify that I was diagnosed with Celiac Disease in 2003.  I have been gluten free for almost nine years.  I am very strict with my diet.  Now with being diagnosed with gluten ataxia, the doctors do not understand why I am still having damage to other areas even after gluten free.  They cannot find any other cause so this is still their diagnosis.  It is hard though when I am not sure what is causing it all.  I know that my triggers for a bad 'attack' are stress and fatigue or lights.  So I do what I can to stay away from those.  Like I said before though, it is causing me to become more isolated and I am not sure that is healthy.  

I am fortunate that I can still get around pretty good especially at home on my good days.  I also have my very supportive family and husband.  I am thankful for that.  Mostly it is hard because I don't want to always complain to them or tell them my worries and scare them.  I am a very private person, and counseling seems hard too.  

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Permalink Reply by MissCake2 on January 3, 2012 at 2:10pm

I have not been exercising for the last year.  Between doctor appointments, stress, and all of my symptoms this last year has been exhausting.  I DO have a WII fit, and I used to use it.  That is an excellent idea to start it up again!

Jeannie Ball said:

Hi MissCake2,

It sounds as if I have allot of the same symptoms, or did have anyway. I have been off Gluten for a little over 5 years now but I wasn't diagnosed having gluten sensitivity. I had a blood test but I came out on the normal range. My Dr. suggested I try it anyway.I find it helps! At first I found it hard to go without gluten/bread but when I gave up all flour's it seemed so much easier for me instead of trying to substitute other foods.

I have Sporatic SCA. Meaning they don't know which one I have. When I let go of the combination of flour and refined sugars somehow together they help me with my symtoms with my gait etc. I've become much more steady reaching for things, balancing etc.

I was really good about doing the Wii fit plus on the Nintendo for a few years I stoped a few months back because I was doing so well walking etc I thought I was almost cured and I didn't need to anymore. Wrong! I really have noticed a real diffrence in my gait etc. So I guess this was good to find out! I have started back  it using it cause it helped so much.

 Do you exersize? I find even though I hate exersize for the sake of exersize, using the Wii fit plus tricks my brain. I play balancing games etc., that help my brain (cognative thinking). Not only that but I love feeling that my body is more in control of the way it moves and how it reacts to things but it actuall helps my mood too! To me that's huge!

I think we all tend to issolate having Ataxia. I tend to also, but force myself to reach out on a regular basis. I have been working with my foods and schedualing my life now so I don't have to take meds right now. I'm really working on keeping it that way as long as I can! :-)

I find also that since I have Quiet time every morning that really grounds me and helps my mood though out my day. I can tell when I don't make that time. I started with only 5 mins. It verys daily but most of the time I'm doing 40 mins now. I love it!

• ▶ Reply

Permalink Reply by John "JC" Colyer on January 3, 2012 at 2:10pm

You can always vent here, stay strong!

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ModeratorPermalink Reply by Alan Thomas on January 3, 2012 at 2:31pm

Sorry CA = Cerrebelar Ataxia

Alan

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Permalink Reply by Jeannie Ball on January 3, 2012 at 2:37pm

Hi MissCakes2,

 I am just been reading allot and hearing allot about letting go of dairy too. I've been thinking about it but it's another mind set to have to get into for me. I'm willing to try mostly anything to help out my symptoms though, so I might. I'm still in the thinking stage! :-)

I saw this video on Ted (you tube) that a women was in a wheel chair having MS. She used to be a Dr. She did allot of reschearch about foods and she started eating 3 cups of salad before each meal and made sure she had protein with it. No dairy, and not including potatoes. I thought maybe I could give this a try for 30days to see if I wanted to continue. Do you have any thoughts about it?

Being Gluten free isn't bad huh? Wow, that's great you have been doing it for 9 yrs now!

So are you clasified as Gluten Ataxia or is there a number too to go along with it?

MissCake2 said:

Thank you to all of you for taking the time to reply!  I am feeling better already just knowing that there are others out there with my symptoms.  I had almost given up finding anyone.  Everyone with ataxia I spoke with before didn't have the vertigo or gluten problems.

I probably should clarify that I was diagnosed with Celiac Disease in 2003.  I have been gluten free for almost nine years.  I am very strict with my diet.  Now with being diagnosed with gluten ataxia, the doctors do not understand why I am still having damage to other areas even after gluten free.  They cannot find any other cause so this is still their diagnosis.  It is hard though when I am not sure what is causing it all.  I know that my triggers for a bad 'attack' are stress and fatigue or lights.  So I do what I can to stay away from those.  Like I said before though, it is causing me to become more isolated and I am not sure that is healthy.  

I am fortunate that I can still get around pretty good especially at home on my good days.  I also have my very supportive family and husband.  I am thankful for that.  Mostly it is hard because I don't want to always complain to them or tell them my worries and scare them.  I am a very private person, and counseling seems hard too.  

• ▶ Reply

Permalink Reply by MissCake2 on January 3, 2012 at 2:51pm

I am only classified as Gluten Ataxia.  No number...  It is frustrating because all of the tests they ran would come back negative or inconclusive.  They know from the damage to the vestibular area and my symptoms that something is definitely causing it, and I guess Gluten Ataxia is the only thing left that doesn't have a definitive test.  I DID test very positive on the ANA which shows antibody inflammation, but it doesn't show what causes the inflammation. 

I also am dairy free since I am allergic to dairy.  Often the two go hand in hand.  I will say that YES most definitely it can help a lot when you need it.  Everyone is different, and you do have to find what helps your body diet-wise.  I know that for me I do SO much better when I am sugar-free as well, but I have a horrible sweet tooth and with all of my other diet restrictions I find it hard to turn my back on sugar.  I have also seen people that did not need the diet try to go on them.  It can have some negative aspects as well since sometimes your body needs those nutrients.  If it feels good then it is probably good for you!  I really admire people who take the initiative to at least try.  If you don't notice a difference or don't feel better then you can always go back.  No harm in trying, and what a benefit if it DOES help!  

My son has type 1 diabetes, and I also tried going low-carb with him for awhile.  I am finding that it doesn't really help me.  I try not to eat a lot of rice or potatoes (usually I eat sweet potatoes - the miracle food!), but I mostly find that I try to stick with a balanced meal now and don't worry about the carbs.  A little bit of everything.  

Jeannie Ball said:

Hi MissCakes2,

 I am just been reading allot and hearing allot about letting go of dairy too. I've been thinking about it but it's another mind set to have to get into for me. I'm willing to try mostly anything to help out my symptoms though, so I might. I'm still in the thinking stage! :-)

I saw this video on Ted (you tube) that a women was in a wheel chair having MS. She used to be a Dr. She did allot of reschearch about foods and she started eating 3 cups of salad before each meal and made sure she had protein with it. No dairy, and not including potatoes. I thought maybe I could give this a try for 30days to see if I wanted to continue. Do you have any thoughts about it?

Being Gluten free isn't bad huh? Wow, that's great you have been doing it for 9 yrs now!

So are you clasified as Gluten Ataxia or is there a number too to go along with it?

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