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

Replies to This Discussion

Permalink Reply by Michael Ward on Tuesday

Charlie:

Keep your courage!

My daughter is 15 and things are going on with her.

2nd Neurologist today.

My wife is on the same diet as I am to make cooking easier.

She looks amazing and so fit. (If anything the GF diet as helped her)

To get my daughter to give up bread is a battle. (work in progress)

Gluten Free everything else has been easier for her.

ATAXIA is major work and I wish you much success in your journey.

Kind regards,

michael

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Permalink Reply by Charmaine on Tuesday

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

• ▶ Reply

Permalink Reply by Michael Ward on Tuesday

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

Charmaine said:

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

• ▶ Reply

Permalink Reply by Brian Kanto on Wednesday

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).

• ▶ Reply

Permalink Reply by Julie Hahn on Wednesday

Michael,

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

• ▶ Reply

Permalink Reply by Charmaine on Thursday

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

• ▶ Reply

Permalink Reply by Marie Turner on Thursday

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

• ▶ Reply

Permalink Reply by Charmaine on Thursday

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

• ▶ Reply

Permalink Reply by Lori on Thursday

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.

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