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

General
61

Michael,

Thanks very much for the detailed explanation.

May I ask one more question? Carbohydrates is the source of energy. If a diet excluded Pizza, Pastas, Cookies, Pastries, Cakes, Sandwiches, Burritos, what kind of food will you arrange to resolve the energy issue? What come up my mind is fruit and vegetables ....

When we eat so much food for years, there are a lot of poisonous residue remain in the intestinal.

Such poisonous residue could be the source of general illness, make us allergic or affect digestion.

Recently, I have learned a way to clear the poisonous residue in i A simple method.

Drinking 500 ml water (with 1 teaspoon salt) within 1-2 mins x 3 - 4 glasses

= 1,500 ml - 2,000 ml in total

After drinking each glass of salty water, do some exercises that will stretch the i

I have tried once and it works. It helps to get rid of the poisonous residue and makes the inner body

Michael,

Don't worry. I always respect your attitude of life and the way you fight with the disease.

Maybe you don't believe it. When I learn your perspectives on life, family, food, exercise, Q10.... etc.,

I am influenced by you in a positive and constructive way.

You remind me that I'm not alone. And I start to tell myself that this is a long term fighting, Michael is doing well and maybe I could do it well too.

Just don't know why, I start to have a little courage and desire to fight back.

Maybe this is the effect of supporting each other and inspire each other to live better.

You are an important catalyst to us.

May God consider your effort and bless your daughter with ataxia free - best wishes from the deepest of my heart.

Kind regards,

Charmaine


Michael Ward said:

Gluten is non water soluble protein. Organic or non Organic. Doesn't matter Gluten is Protein.

At the time of Christ wheat had low levels of Gluten.

With modern baking and trying to feed the masses we found processing Flour based products easier with high protein wheat. There are two types of wheat protein in the wheat kernel that flour millers look at: Today our wheat is yielding 12% or higher Gluten forming protein levels. As consumers we eat gluten with every meal. Pizza, Pastas, Cookies, Pastries, Cakes, Sandwiches, Burritos. All so fun to eat for sure however we are eating way too much Gluten (It's not water soluble) not all people but a few more than we could imagine have trouble with digestion because the stuff we call gluten blocks our small intestines from adsorbing the proper nutrients to feed our brain stem and other parts of the body. This is why a Gluten Free Diet benefits many people with neurological illnesses. You can have a healthy diet with out Gluten Base Foods.

I don't care about what some out of shape doctor may say about Nutrition.

Go by what works for you.

If you can eat Gluten with no effects on your neurological health then keep eating it.

If a modified diet helps manage better then by golly fix your diet.

Charmaine I know I'm pretty vocal about this stuff however I have to fight like heck to maintain some kind of life.

Kind regards,

michael

62

Gluten ataxia, as I understand it, is where the immune system gets confused and attacks parts of the cerebellum. This may be because neurons there resemble intestinal cells.

I have also read that gluten can cause a generalized inflammatory process in the body. This process may explain some of the benefits to other types of ataxia also, I would give an unqualified guess to.. I can assure you my terrible allergies almost became non-existent after going gluten free, upon my Celiac diagnosis. Now what do I prefer, cats or pizza ( just kidding).

63

Michael,

I requested prayer for your daughter on American Ataxia/Prayers. I hope that's ok. Praying brother!

64

Hi Michael,

I'm sorry to hear about what happens to your daughter.

I will keep her in my prayer.

Understand that words can't express how's your feelings now, but please be strong.

Please promise to take care yourself well as usual, it will maintain your energy to help your daughter.

She needs you. She will do better if you help her.

Remember in the old days, you have to take care of yourself and fight with the disease.

Now your daughter has you as her back up, to certain extend, she feels more secure.

This is her gift. Your gift to her.

Be strong. You are not alone.

We will pray for you and your family.

In Christ

Charmaine



Michael Ward said:

Charmaine sorry to keep ranting however this helps me so consider it my way of dealing with this thing.

My daughter is seeing a specialist as I write.(2nd one in 5 days.)

Her teachers are reaching out to her by emails.

I emptied her locker with tears in my eyes.

The hurt is deep and long.

I don't care about myself anymore.

My thoughts are for her.

15 years old - bright- in the prime of her life.

What is next?

To watch her bed ridden then up she appears to be OK?

Then a fare up?

Scary times!

She's not OK? - She's OK? - She's not OK?

I have to be strong and support those who I love.

Diet and Exercise are the only things that will keep me going.

I pray sometime however never enough.

I'm fighting for my life.

Just like most of us here on this site.

We are fighting to maintain some kind of order as it can effect those around us.

Kind regards,

michael

65

I echo what Charmaine says.Its verydifficult to watch a loved one have any disease and our imaginations play havoc with us.What we see as suffering may make someone else stronger spiritually.That is probably a good thing for somone with a Christian perpeective like me but I am aware that others might think and feel differently.As a parent myself I want the very best for my daughter but I will be the first to admit I don't always know what that is so I am glad just to be there when I am needed like you are for your daughter.

Marie

66

Hi Marie

You remind me one important point for Michael....

Hi Michael

Don't forget to take care of your wife - her feelings, thinking...etc.

A mother has a special connection with her children, 10 months pregnant and the pain to deliver her babies.

She is the one who has to accept what happens on her husband and her daughter, must be difficult.

But from the way you have mentioned your wife, I have a feeling that, to certain extend, she is a strong woman.

When a family is facing changes, please always bear in mind that you are not alone.

You and your wife are facing the changes hand in hand.

Don't lose faith, don't lose direction.

God bless you and your family.

In Christ

Charmaine


Marie Turner said:

I echo what Charmaine says.Its verydifficult to watch a loved one have any disease and our imaginations play havoc with us.What we see as suffering may make someone else stronger spiritually.That is probably a good thing for somone with a Christian perpeective like me but I am aware that others might think and feel differently.As a parent myself I want the very best for my daughter but I will be the first to admit I don't always know what that is so I am glad just to be there when I am needed like you are for your daughter.

Marie

67

I really do not know how I would handle it if my children get this disability. I did find out yesterday at the hospital their are 5 Ataxia's that are treatable. So of course I was tested for those since insurance wont cover genetic test. The doctors were not hopeful but its something. I just get so frustrated their is nothing to cure this.

68

Hello all those with Gluten Ataxia

I have Cerebellar Ataxia but I thought I would try Gluten Free as I believe someone on this site,Michael I think said it helped general neurological conditions.I have been on it for about two weeks and my Ataxia seems worse.I am fed up with looking at labels and explaining it to all I eat with that I am GF.I did a home test and I did not have any antibodies but I am going to persist.How long did it take to feel better.Two weeks may be laughable but it seems like an eternity.The larder is now full of GF products.How long do I need to do it and when do you know if it is working or if it will.I am skeptical and need some encouragement .

Marie

PS I would kill for a doughnut.

69


Hi Marie,

I can understand how your feeling about going GF. It's not for everyone. I went GF in 2005 and found when I was trying to substitute food items GF it wasn't as easy as I think it is now from what I see on the selves. But resteraunts off GF now too I see. So I ended up just giving up all flours so I wouldn't have to worry about it anymore really. I too found if I tryed to substute GF breads etc they weren't that great (I guess it's like anything you can get used to it :0) ) so I started making my own breads, cakes etc, and they were just ok. Since I don't do any sauses or two or more spices in one jar so I don't worry about it anymore. I was tested for Guten ataxia and my test came out on the normal end meaning I didn't have it but my Dr (GP) suggested to go off for a few weeks just to see how I felt. If after a few weeks it helped stay off if it didn't go back. Simple! For me when I went off after 2 weeks I only felt a very very slight change(slighly noticable but since I had Gluten for so many years I had to give it lots of time to really test it) so I wanted to see if I could get more resultse with more time. After a few months I did.I was encurraged only because I was so clean I could feel it. So I continued and after each year I'm really starting to really feel what they talk about not having Gluten. That's a shame it hasen't helped you at all. But that's great that you have tried it for a few weeks though.:0)

What I've been doing is having as much raw foods as possible and it's helped my fatigue a lot. I started feeling it after a few days. But see everyone is really diffrent. I Sporatic Spinal Cerebeller ataxia is that what you have?


Marie Turner said:

Hello all those with Gluten Ataxia

I have Cerebellar Ataxia but I thought I would try Gluten Free as I believe someone on this site,Michael I think said it helped general neurological conditions.I have been on it for about two weeks and my Ataxia seems worse.I am fed up with looking at labels and explaining it to all I eat with that I am GF.I did a home test and I did not have any antibodies but I am going to persist.How long did it take to feel better.Two weeks may be laughable but it seems like an eternity.The larder is now full of GF products.How long do I need to do it and when do you know if it is working or if it will.I am skeptical and need some encouragement .

Marie

PS I would kill for a doughnut.

70

Marie,

I laughed at your "I would kill for a doughnut". Me too...but I'd rather just eat gluten free so I can walk again.

To answer you question; it took me six months to feel about 80% better. I was in my 50's when I was diagnosed and was a mess. I was bed bound most of 2008. and with no gut symptoms I was told I had Celiac Disease. I said, "HUH?" and what's that got to do with not being able to walk?

But I was desperate and gave it a shot. It did take what felt like a long time for feel better and my understanding is the younger you are and depending on how long you've been sick, that affects how long it takes to get better.

Of course the real answer is, it's different for everyone. Two weeks is probably not very realistic. I totally understand your finding it a pain to tell folks what and why your eating this way. I have to believe that when you do get well (assuming it what's causing your ataxia) then you friends should be overjoyed....but they may not be. My extended family will never accept my gluten ataxia diagnosis, but I know I have my life back and I don't care what they think.

I would suggest buying a gluten free shopping guide (book or app) to make shopping easier. Keep in mind gluten can be hidden in cosmetics (lipstick & foundation) and medications. The pharmacies don't know even though they think they do. www.glutenfreedrugs.com can help you with that part.

Many people have gluten ataxia without having the anti-bodies. Read Dr Marios Hadjivassiliou research.

Hang in there and give it a real try. It's certainly worth trying to get your health back...Yes? I'm not really even remotely tempted because all I have to do is remember that it will make me have ataxia again.

Please let us know how you're doing in 3 months and then again in 6 months.

Julie

Marie Turner said:

Hello all those with Gluten Ataxia

I have Cerebellar Ataxia but I thought I would try Gluten Free as I believe someone on this site,Michael I think said it helped general neurological conditions.I have been on it for about two weeks and my Ataxia seems worse.I am fed up with looking at labels and explaining it to all I eat with that I am GF.I did a home test and I did not have any antibodies but I am going to persist.How long did it take to feel better.Two weeks may be laughable but it seems like an eternity.The larder is now full of GF products.How long do I need to do it and when do you know if it is working or if it will.I am skeptical and need some encouragement .

Marie

PS I would kill for a doughnut.

71

Hi Marie,

I have the same Ataxia as you. Except mine is heredity. I just went to the doctor for a check up last week. And to .get the gluten Ataxia test because insurance covers that test. The test came back normal. So I asked her about being GF. She said it wouldn't help me with the kind of Ataxia I have. We should eat healthy like everyone should. I just thought I would pass that on. Because you might be waiting for something that may never come. Its great that you are doing it

Lori

Marie Turner said:

Hello all those with Gluten Ataxia

I have Cerebellar Ataxia but I thought I would try Gluten Free as I believe someone on this site,Michael I think said it helped general neurological conditions.I have been on it for about two weeks and my Ataxia seems worse.I am fed up with looking at labels and explaining it to all I eat with that I am GF.I did a home test and I did not have any antibodies but I am going to persist.How long did it take to feel better.Two weeks may be laughable but it seems like an eternity.The larder is now full of GF products.How long do I need to do it and when do you know if it is working or if it will.I am skeptical and need some encouragement .

Marie

PS I would kill for a doughnut.

72

I just furniture walk inside;cant walk outside.Can move so is balance thats the problem.Can just about talk but not fluently anymore.Would try anything to get speech back.Only two weeks into a gluten free diet so epecting results too early.Will persist with GF for a couple of months or more.Have an aggressive form of Cerebellar Ataxia of no known cause.Rapid deterioration but no automatic symptoms yet.Puzzled. Have had the main genetic tests.Neurologist doesnt know what has caused it.Dont want to know but would love to think I could do something.Not very good at acceptiing it when most of my old hobbies involved some sort of movement.Trying to be postive but it is hard.Loss of speech is the pits.Can cope with loss of movement better...

Marie

73

i hear you loud and clear! my speech is going also. And I hate not being able to tell a story. And I will try anything that will make me better. I wasnt saying anything bad about you going GF. Not at all! We will do anything to make us better. I give you hands up for doing this. Gluten is bad stuff .Keep being strong!

74

HI Michael

Glad to hear your enthusiasm for the GF diet.I haveeaten healthily since my early 20 s and took an interested part in Nutrition.I always made good wholesome dinners so feel a bit cheated now.All that effort.I did eat quite a few cakes and biscuits though and have cut them out. My waist line is better but the speech and mobility are worse.

Mind you I have just been through the emotional trauma ofmy daughters wedding.Perhaps I was stressed without realising it.I certainly couldnt do much and let it all happen around me.it was emotinally taxing though.Have been to the dr his am to do some breathing tests at my consultants request.Maybe its breathing AND talking I can;t do.My speech is not slurred but it is staccatto and difficult.Perhaps its the co-ordination.Perhaps the GF will work.There again Pigs migt fly!!Glad to ear your views and experieces though.

Marie

75

I'm with you Michael! It DOES NOT have to be boring. I have been gluten free, dairy free for nine years now. It was really tough at first - you think of the many things you think you can't have. When I first went gluten free there was hardly any gluten free products on the market, and no restaurants with gluten free menus. I had to learn the hard way, and slowly learned to cook gluten free. It was very difficult at first. Gluten free flour does not fry the same way regular flour does, and certainly doesn't bake like regular flour. I had to mix my own combinations, and trust me I had some flops LOL! But, I kept at it and learned, just as Michael is saying, that things aren't boring. There are plenty of alternatives for almost anything you can think of. AND, truly I can say that it gets much easier with time, plus as your body adjusts going gluten free you start to think that is what normal taste like. Sometimes I will have something gluten free and tell my husband it tastes just like the real thing! He will taste it and remind me that perhaps just my 'tastes' have changed because he doesn't think it tastes anything like it. I love my diet now. Of course, when eating any other way makes you feel awful it isn't hard to love. Just don't give up until you have given it a solid try.

Michael Ward said:

Hi Marie:

I know we are all different so please don't think of me as preaching.

In my case I slurred so bad in the middle of the afternoon people looked at me funny!

I went gluten free March 2011. Now my wife is on it and also my daughter.

Physically my wife looks amazing.

With my Daughter it better taste amazing or she's not on the program.

Lately we have been making different Gourmet Meals every night so we don't get bored.

The flavors are amazing. Food prepared in a holistic fashion taste the way food should taste.

Food can be so addicting maybe more than cigarettes?

PIZZA Delivered so convenient however I can make a gluten free pizza in the time it takes to order one and have it delivered.

It actually taste better and is cheaper comparatively.

My wife and I emptied out the refrigerator and pantry of all processed foods.

There is more and more cases of sick people with varying diseases.

Talk about dumb-ing down America?

I think the whole world as been dumb-ed down.

Nutrition is a valid science so why don't people learn more about it?

For me it was easy I changed my diet and I can talk all day long.

If I was eating like I was before I would be worse.

It's all or nothing with this type of diet.

No compromise.

No more Ice cream for me which I love but doesn't love me.

Last night I made gluten free chocolate chip cookies with pecans served with a cold glass of almond milk.

Warm cookies and cold milk. WOW!

Going gluten free doesn't mean boring.

The benefits in my case are worth it!



Marie Turner said:

I just furniture walk inside;cant walk outside.Can move so is balance thats the problem.Can just about talk but not fluently anymore.Would try anything to get speech back.Only two weeks into a gluten free diet so epecting results too early.Will persist with GF for a couple of months or more.Have an aggressive form of Cerebellar Ataxia of no known cause.Rapid deterioration but no automatic symptoms yet.Puzzled. Have had the main genetic tests.Neurologist doesnt know what has caused it.Dont want to know but would love to think I could do something.Not very good at acceptiing it when most of my old hobbies involved some sort of movement.Trying to be postive but it is hard.Loss of speech is the pits.Can cope with loss of movement better...

Marie

76

Hi Marie,

I understand stress of diffrent cituations can really, really effect an kind of ataxia also.I have to work on keeping my stress low or it effects me a lot even little things. One thing that seems to help me is meditation/prayer starting off my day. If I skip a day the day actually my day is a lousy one.

Do you know about Dr. Tom Clouses website? He just seems to tell it like it is. I like that he's straight forward, it seems like he doesn't pull any punches (he has ataxia also and is a Dr., so he gets us on a diffrent level. He knows how our brains work or should I say don't work :0) ). Here is his website that has really helped me a lot and maybe, you will find something helpful there too! http://walkingwithataxia.com/INHERENT%20PROBLEMS%20AND%20ISSUES.htm

I am really excited and have been working for a few months now to have more endurance so when I get to work with him (this Sept) when he comes to SF. In getting my endurance higher I hoping to get to last longer to learn more from him about how I can move better!! I've been doing a few things on his cite that have made huge diffrence for me.

Keep up the good work and please don't get discurraged and just give up or in! :0) I find for me if and when I do even for one day I have more symtoms than if I work at not having so many. It works if you work it! Good luck with your journey through this ataxia. :0) I don't find it fun, but I tell ya I'm doing what I have to do (I think we all do) just to try to be as normal as I can (and that's not quite normal as other people! :0)
Marie Turner said:

HI Michael

Glad to hear your enthusiasm for the GF diet.I haveeaten healthily since my early 20 s and took an interested part in Nutrition.I always made good wholesome dinners so feel a bit cheated now.All that effort.I did eat quite a few cakes and biscuits though and have cut them out. My waist line is better but the speech and mobility are worse.

Mind you I have just been through the emotional trauma ofmy daughters wedding.Perhaps I was stressed without realising it.I certainly couldnt do much and let it all happen around me.it was emotinally taxing though.Have been to the dr his am to do some breathing tests at my consultants request.Maybe its breathing AND talking I can;t do.My speech is not slurred but it is staccatto and difficult.Perhaps its the co-ordination.Perhaps the GF will work.There again Pigs migt fly!!Glad to ear your views and experieces though.

Marie

77

Hi Jeannie

I read the website.I have got into some habits and sometimes take the easy way out.I do shuffle along lately.I think its because I am frightened to take a leg up for fear of being unstable.I need both feet planted firmly on the ground in case i fall over.I know what he is saying.I think we have to get the balance right.

I do enjoy some of the things disability brings but its not through choice.It was a case of adapting.I walked unaided for years,then for two years used my rollator.I was getting the exercise but the real joy has been my road scooter.I bomb about enjoying myself lopoking at the flowers in the hedgerows.It is the easy way out but i feel almost normal on my scooter.I don;t have to talk to anyone and it is my treat to myself.Doggy enjoys it as well..My walking has become worse but my mental health has improved.It seems like swings and roundabouts.That's what I meanabout getting a balance and we are all different.

I used to be a very emotional person but have calmed down lately.My faith has been with me from 1975.I derive great comfort from that and for me it gives meaning to my illness.so I know what you mean .I am persisting with the GF diet and Michael is right .There are some lovely GF foods but i don;t want to do it needlessly and be a pain to others.

Marie

Thanks for the encouragement about the GF diet and the website.Much food for thought.

78

Your welcome! We are all on a journey, so I understand. :0)

79



Julie Hahn said:

Marie,

I laughed at your "I would kill for a doughnut". Me too...but I'd rather just eat gluten free so I can walk again.

To answer you question; it took me six months to feel about 80% better. I was in my 50's when I was diagnosed and was a mess. I was bed bound most of 2008. and with no gut symptoms I was told I had Celiac Disease. I said, "HUH?" and what's that got to do with not being able to walk?

But I was desperate and gave it a shot. It did take what felt like a long time for feel better and my understanding is the younger you are and depending on how long you've been sick, that affects how long it takes to get better.

Of course the real answer is, it's different for everyone. Two weeks is probably not very realistic. I totally understand your finding it a pain to tell folks what and why your eating this way. I have to believe that when you do get well (assuming it what's causing your ataxia) then you friends should be overjoyed....but they may not be. My extended family will never accept my gluten ataxia diagnosis, but I know I have my life back and I don't care what they think.

I would suggest buying a gluten free shopping guide (book or app) to make shopping easier. Keep in mind gluten can be hidden in cosmetics (lipstick & foundation) and medications. The pharmacies don't know even though they think they do. www.glutenfreedrugs.com can help you with that part.

Many people have gluten ataxia without having the anti-bodies. Read Dr Marios Hadjivassiliou research.

Hang in there and give it a real try. It's certainly worth trying to get your health back...Yes? I'm not really even remotely tempted because all I have to do is remember that it will make me have ataxia again.

Please let us know how you're doing in 3 months and then again in 6 months.

Julie

Marie Turner said:

Hello all those with Gluten Ataxia

I have Cerebellar Ataxia but I thought I would try Gluten Free as I believe someone on this site,Michael I think said it helped general neurological conditions.I have been on it for about two weeks and my Ataxia seems worse.I am fed up with looking at labels and explaining it to all I eat with that I am GF.I did a home test and I did not have any antibodies but I am going to persist.How long did it take to feel better.Two weeks may be laughable but it seems like an eternity.The larder is now full of GF products.How long do I need to do it and when do you know if it is working or if it will.I am skeptical and need some encouragement .

Marie

PS I would kill for a doughnut.

80

Hi Marie,

I've just joined this website and was reading your thread. I don't know if this will help but its definitely worth continuing with the gluten free diet, from my experience it has to be very very strict to have any results. I had very bad symptoms of ataxia about 10 years ago. Luckily for me a doctor made a connection between gluten and neurological symptoms and I've been on a strict diet since. I am now pretty much well. I do have blips and if I try to challenge myself with gluten (as much as a biscuit) go back to furniture walking, slurred speech etc. Any contamination will cause symptoms and they take a while to go. I was very lucky as I'd only had the ataxia for 6 months before going on a diet and damage was limited. So please don't give up.

Fran