I am new to this site, and just found it today. I am also newly diagnosed with gluten ataxia. My biggest issue has been learning to live without the function of my vestibular nerve which is over 90% damaged, and will not get better. I have a hard time balancing, and suffer from migraines, vertigo, oscillopsia, etc. I have other symptoms as well, but not as severe. Does anyone else suffer from these types of symptoms with their ataxia?
I do not know anyone with ataxia of any kind. There are no support groups in my area for any kind of ataxia. I would really like to get to know others with similar symptoms. It seems from what I can tell that my symptoms are rare...
I worry mostly because I am starting to realize that I am isolating myself more and more. Even my husband has started to notice. It isn't a deliberate thing, but mostly because I can't handle a lot of stimulation. Any opinions on whether it is better to keep calm and de-stressed to minimize symptoms or to push oneself and risk getting worse?
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!
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.
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.
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.
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!
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.
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?
My sister in law was diagnosed with cancer in the summer and given two years.She has been dairy free for months and the latest scan showed the tumours had shrunk a lot.She puts it down to dairy free.My husband also has very bad Irritable Bowel Syndrome which I am convinced is dairy .Interesting to see what works.Some things seem to work really well for some.My neurosurgeon said to try anything to help me feel better.I heard that the wi fit is very good for exercise. i got one for xmas and can't wait to try it but have just had a virus leaving me feeling a bit weak.
THE WORST COMBINATION DIZZINESS + NEUROPHATY + VERTIGO
MissCake2 said:
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?
So if you don't have any dairy, how do you get enough calcium in your diet? I know a few veggies have calcium but I don't really know what is needed to make sure you get enough calcium.
MissCake2 said:
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?
Do you know what she eats in place of dairy? I love yogurt. I eat 8oz each morning that I'd have to change. I don't know what I would put in place of it for breakfast. Any idea's?
Marie Turner said:
My sister in law was diagnosed with cancer in the summer and given two years.She has been dairy free for months and the latest scan showed the tumours had shrunk a lot.She puts it down to dairy free.My husband also has very bad Irritable Bowel Syndrome which I am convinced is dairy .Interesting to see what works.Some things seem to work really well for some.My neurosurgeon said to try anything to help me feel better.I heard that the wi fit is very good for exercise. i got one for xmas and can't wait to try it but have just had a virus leaving me feeling a bit weak.
Iwill ask her what she eats . I know she has soya milk . I made pineapple for her at xmas but she even had to make her own sauce. I forgot it had butter in the sauce.And I thought I was being clever. She made custard with her soya milk which she brought with her.
I have very bad reactions to milk, yogurt, etc, but I do okay with hard cheeses. I've heard it has to do with how they are processed. So to answer your question I still eat cheese once in awhile which helps. I also substitute vanilla soy milk on my cereal or for drinking. It takes awhile, but you do get used to the flavor. To me it tastes like real milk now - I can't remember what the 'real' stuff tastes like. I also use coconut milk in my baking or cooking. It has a wonderful creamy texture that gives soups and chowders a rich flavor. I used canned coconut milk though - not the ready to drink stuff in the fridge. To use alternative milks regularly you really have to find one that is good for you. Many of the soy and alternative milks have calcium added to them to help supplement.
I have tried every kind of alternative milk out there. I always come back to vanilla soy milk. It has a sweeter flavor which helps you get used to the 'nutty' after taste. My daughter, who is also allergic to milk, seems to like just about anything you put in front of her. Her favorite I think is rice milk though - which I don't buy very often because it does not have a lot of nutritional qualities.
Also making sure to eat a lot of greens - broccoli, and spinach have a lot of calcium. Salmon also has a lot of calcium, and almonds.
Jeannie Ball said:
So if you don't have any dairy, how do you get enough calcium in your diet? I know a few veggies have calcium but I don't really know what is needed to make sure you get enough calcium.
MissCake2 said:
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?
I actually have an exercise ball - not exactly, but similar to that one. I haven't had it out in years, and forgot about it. I will have to try it again. Thinks for the advice! I definitely need to do some exercising!
Michael Ward said:
The Bolsu Ball. It comes with video. There are many YOUTUBE videos on line you can watch.
My wife does this with me. CORE, CORE, CORE did I say CORE?
So, hope it is okay to ask and not meant to offend... do any of you use a cane? Do you find it helps? I have the hardest time making myself use one in front of others. I am 37 - still young, and most people can't tell there is anything wrong just by looking at me. If you watch me walk or try to walk next to me then you realize how I can't walk a straight line or can't look at what is going on around me because I have to look at the ground where my feet go to keep my balance (without my eyes I have no sense of balance). I think sometimes I get pretty good at looking like nothing is wrong because other people don't realize how hard I am working at trying to look 'normal'. Even my family sometimes doesn't realize how tired I get from the effort. It is part of the reason that I don't like to go out in public as much. Too exhausting... I know it sounds bad when I write it down, and I guess I DO have a hard time accepting some of it - but I also am afraid to accept it because then if things get too comfortable I feel like I've given up somehow. Does that make sense?
Oh yes - they also have soy yogurt and coconut yogurt out there now - both are delicious! I even buy 'mock' sour cream and cream cheese. Both are very good - made from tofu. I don't know if they taste good to someone who isn't used to soy milk though, lol.
Jeannie Ball said:
Do you know what she eats in place of dairy? I love yogurt. I eat 8oz each morning that I'd have to change. I don't know what I would put in place of it for breakfast. Any idea's?
Marie Turner said:
My sister in law was diagnosed with cancer in the summer and given two years.She has been dairy free for months and the latest scan showed the tumours had shrunk a lot.She puts it down to dairy free.My husband also has very bad Irritable Bowel Syndrome which I am convinced is dairy .Interesting to see what works.Some things seem to work really well for some.My neurosurgeon said to try anything to help me feel better.I heard that the wi fit is very good for exercise. i got one for xmas and can't wait to try it but have just had a virus leaving me feeling a bit weak.
Gone straight to a rollator outside but feel old staggering along with a cane. The rollator is good for balance and a good indication something is wrong.Everyone gets out of my way,Lurch and furniture walk around the house without a cane.
Marie
ps got a quad cane for the car as can't get over kerbs while walking/lurching outside.Also can't do slopes or hills.