RE: Re: Not being able to have wheat products

[Guest guest]

,

I was told to talk Maya off all wheat products and since she can not have fructose, sucrose, or lactose either this greatly limits her diet. She loves rice though, so I buy rice everything. She drinks rice milk, eats rice cakes, etc. She is also tube fed though so all of her nutrition and calories come from her feedings. The food is just a bonus. I can sympathize with the lack of food available when they limit certian foods from the diet. The first time I went to the grocery after we started all of this I spent three and a half hours and left with rice cakes (no salt, no nothing), plain rice, and Lay's potato chips (have only potatoes, salt, and oil in them). Sorry I don't have any advice, but I do sympathize.

Holly

[Guest guest]

,

I was told to talk Maya off all wheat products and since she can not have fructose, sucrose, or lactose either this greatly limits her diet. She loves rice though, so I buy rice everything. She drinks rice milk, eats rice cakes, etc. She is also tube fed though so all of her nutrition and calories come from her feedings. The food is just a bonus. I can sympathize with the lack of food available when they limit certian foods from the diet. The first time I went to the grocery after we started all of this I spent three and a half hours and left with rice cakes (no salt, no nothing), plain rice, and Lay's potato chips (have only potatoes, salt, and oil in them). Sorry I don't have any advice, but I do sympathize.

Holly

[Guest guest]

,

I was told to talk Maya off all wheat products and since she can not have fructose, sucrose, or lactose either this greatly limits her diet. She loves rice though, so I buy rice everything. She drinks rice milk, eats rice cakes, etc. She is also tube fed though so all of her nutrition and calories come from her feedings. The food is just a bonus. I can sympathize with the lack of food available when they limit certian foods from the diet. The first time I went to the grocery after we started all of this I spent three and a half hours and left with rice cakes (no salt, no nothing), plain rice, and Lay's potato chips (have only potatoes, salt, and oil in them). Sorry I don't have any advice, but I do sympathize.

Holly

[Guest guest]

I missed the original message so I guess this goes to , but

pardon me if I have it wrong.

My son's GI suggested that he could have celiac's disease, an

intolerance or allergy to gluten which is the element in most people

hope to avoid in wheat, so we both got tested and went on a gluten free

diet. It is do-able but takes an organized approach.

We got in touch with a Celiac's association and found resources in their

newsletter. I think some areas have support group meetings.

We went to Whole Food's, a health food chain and found the staff there

really good at finding items without gluten (a friend of mine calls it

Whole Paycheck but they do have good selection of speciality stuff).

We made contact with a lady who had an ad that she made gluten free

deserts and catered gluten free. We somehow swung an invitation to

Thanksgiving dinner and, **wow**, can she cook.

There are books on gluten free cooking.

You can try all these and it will give you hope. However, a word of

warning: we found the breads horrible and baked goods pretty bleak. My

son refers to the sand cookies and stuff that tasted like Norwegian goat

cheese. I bet you will have a diet heavy in fruits, veggies, and meats.

You can email me privately and I'll look for info on those books again

but you can also do a google search (at www.google.com and put " celiacs

association " or some variation on that). In the end, it turns out that

we don't have any sensitivity to gluten but it was a very good exercise

in finding resources.

Sue Ellen

[Guest guest]

I missed the original message so I guess this goes to , but

pardon me if I have it wrong.

My son's GI suggested that he could have celiac's disease, an

intolerance or allergy to gluten which is the element in most people

hope to avoid in wheat, so we both got tested and went on a gluten free

diet. It is do-able but takes an organized approach.

We got in touch with a Celiac's association and found resources in their

newsletter. I think some areas have support group meetings.

We went to Whole Food's, a health food chain and found the staff there

really good at finding items without gluten (a friend of mine calls it

Whole Paycheck but they do have good selection of speciality stuff).

We made contact with a lady who had an ad that she made gluten free

deserts and catered gluten free. We somehow swung an invitation to

Thanksgiving dinner and, **wow**, can she cook.

There are books on gluten free cooking.

You can try all these and it will give you hope. However, a word of

warning: we found the breads horrible and baked goods pretty bleak. My

son refers to the sand cookies and stuff that tasted like Norwegian goat

cheese. I bet you will have a diet heavy in fruits, veggies, and meats.

You can email me privately and I'll look for info on those books again

but you can also do a google search (at www.google.com and put " celiacs

association " or some variation on that). In the end, it turns out that

we don't have any sensitivity to gluten but it was a very good exercise

in finding resources.

Sue Ellen

[Guest guest]

I missed the original message so I guess this goes to , but

pardon me if I have it wrong.

My son's GI suggested that he could have celiac's disease, an

intolerance or allergy to gluten which is the element in most people

hope to avoid in wheat, so we both got tested and went on a gluten free

diet. It is do-able but takes an organized approach.

We got in touch with a Celiac's association and found resources in their

newsletter. I think some areas have support group meetings.

We went to Whole Food's, a health food chain and found the staff there

really good at finding items without gluten (a friend of mine calls it

Whole Paycheck but they do have good selection of speciality stuff).

We made contact with a lady who had an ad that she made gluten free

deserts and catered gluten free. We somehow swung an invitation to

Thanksgiving dinner and, **wow**, can she cook.

There are books on gluten free cooking.

You can try all these and it will give you hope. However, a word of

warning: we found the breads horrible and baked goods pretty bleak. My

son refers to the sand cookies and stuff that tasted like Norwegian goat

cheese. I bet you will have a diet heavy in fruits, veggies, and meats.

You can email me privately and I'll look for info on those books again

but you can also do a google search (at www.google.com and put " celiacs

association " or some variation on that). In the end, it turns out that

we don't have any sensitivity to gluten but it was a very good exercise

in finding resources.

Sue Ellen

[Guest guest]

My mother-in-law has severe wheat allergy. Wheat seems to be in everything (licorice too, would you believe, that one got me). Anyway, I can sympathize because I cook holiday dinners, where I do include some things she can not eat, but generally when she comes to dinner we have rice, meat, fish, or poultry, salad (croutons on the side:) ) and a veggie. She is thrilled when she can eat the whole meal. Try rye products too. There are rye krisp crackers in nice flavors and some rye breads that are wheat free and not bad. Also she found a darn good wheat free pancake mix. Try your local health food store or co-op.

Hope that is some comfort and help,

Riley

-----Original Message-----From: Hollyorn@... Sent: Thursday, December 12, 2002 9:00 PMTo: Mito Subject: Re: Re: Not being able to have wheat products,I was told to talk Maya off all wheat products and since she can not have fructose, sucrose, or lactose either this greatly limits her diet. She loves rice though, so I buy rice everything. She drinks rice milk, eats rice cakes, etc. She is also tube fed though so all of her nutrition and calories come from her feedings. The food is just a bonus. I can sympathize with the lack of food available when they limit certian foods from the diet. The first time I went to the grocery after we started all of this I spent three and a half hours and left with rice cakes (no salt, no nothing), plain rice, and Lay's potato chips (have only potatoes, salt, and oil in them). Sorry I don't have any advice, but I do sympathize.Holly Please contact mito-owner with any problems or questions.

[Guest guest]

My mother-in-law has severe wheat allergy. Wheat seems to be in everything (licorice too, would you believe, that one got me). Anyway, I can sympathize because I cook holiday dinners, where I do include some things she can not eat, but generally when she comes to dinner we have rice, meat, fish, or poultry, salad (croutons on the side:) ) and a veggie. She is thrilled when she can eat the whole meal. Try rye products too. There are rye krisp crackers in nice flavors and some rye breads that are wheat free and not bad. Also she found a darn good wheat free pancake mix. Try your local health food store or co-op.

Hope that is some comfort and help,

Riley

-----Original Message-----From: Hollyorn@... Sent: Thursday, December 12, 2002 9:00 PMTo: Mito Subject: Re: Re: Not being able to have wheat products,I was told to talk Maya off all wheat products and since she can not have fructose, sucrose, or lactose either this greatly limits her diet. She loves rice though, so I buy rice everything. She drinks rice milk, eats rice cakes, etc. She is also tube fed though so all of her nutrition and calories come from her feedings. The food is just a bonus. I can sympathize with the lack of food available when they limit certian foods from the diet. The first time I went to the grocery after we started all of this I spent three and a half hours and left with rice cakes (no salt, no nothing), plain rice, and Lay's potato chips (have only potatoes, salt, and oil in them). Sorry I don't have any advice, but I do sympathize.Holly Please contact mito-owner with any problems or questions.

[Guest guest]

My mother-in-law has severe wheat allergy. Wheat seems to be in everything (licorice too, would you believe, that one got me). Anyway, I can sympathize because I cook holiday dinners, where I do include some things she can not eat, but generally when she comes to dinner we have rice, meat, fish, or poultry, salad (croutons on the side:) ) and a veggie. She is thrilled when she can eat the whole meal. Try rye products too. There are rye krisp crackers in nice flavors and some rye breads that are wheat free and not bad. Also she found a darn good wheat free pancake mix. Try your local health food store or co-op.

Hope that is some comfort and help,

Riley

-----Original Message-----From: Hollyorn@... Sent: Thursday, December 12, 2002 9:00 PMTo: Mito Subject: Re: Re: Not being able to have wheat products,I was told to talk Maya off all wheat products and since she can not have fructose, sucrose, or lactose either this greatly limits her diet. She loves rice though, so I buy rice everything. She drinks rice milk, eats rice cakes, etc. She is also tube fed though so all of her nutrition and calories come from her feedings. The food is just a bonus. I can sympathize with the lack of food available when they limit certian foods from the diet. The first time I went to the grocery after we started all of this I spent three and a half hours and left with rice cakes (no salt, no nothing), plain rice, and Lay's potato chips (have only potatoes, salt, and oil in them). Sorry I don't have any advice, but I do sympathize.Holly Please contact mito-owner with any problems or questions.

[Guest guest]

Hi , Here is where I can be of some help for you. In 2001, my allergies got so bad, I was literally a walking rash and snot factory, not to mention utterly miserable! I began seeking alternatives in my diet, particularly with wheat and dairy, which I ate an overabundance of. It took some searching, but I have found a few good resources.

Some books:

Freedom From Allergy Cookbook; 4th ed.; by Greenberg, MD & Nori; Blue Poppy Press, 2000

This book lists alternatives for just about anything you want to avoid, wheat, meat, dairy, eggs, yeast. It also has some great basic recipes for alternative milks, muffins, crackers, etc.

There is also a series of books by a woman who calls herself the Gluten-Free Gourmet, Bette Hagman. I have the one entitled Living Well Without Wheat, rev. ed. Henry Holt & Co., 1990 & 2000. This has recipes for everything from appetizers to bread to pasta. I will reprint the past recipe, since Hailee likes it so much!

Homemade Pasta

1/3 cup tapioca flour

2 tablespoons potato starch(flour)

1/3 cup cornstarch

1/2 teaspoon salt

1 tablespoon Xanthan gum

2 large eggs

1 tablespoon vegatable oil

Combine flours, cornstarch, salt, & xanthan gum. Beat eggs lightly and add oil. Pour egg into flour mixture and stir. This will fell much like pastry dough. Work together in a firm ball and knead a minute or two. Place ball on baord dusted with cornstarch and roll as thin as possible. Cut into desired width strips. The pasta is ready to cook or freeze.

Now, the book says to cook 10 minutes. The first time I made this, I cooked it that long and it was mush. The pasta really only needs to be cooked a minute or two. It is yellowish raw, but turns white once cooked, if that helps any. I also use a pasta maker, except when I use it for lasagna, then I just roll it out by hand. The dough is pretty pliable and workable.

I find most of my alternative products at the health food store. Sometimes, I luck out and the grocery store will have one or two items, usually more expensive. Bob's Red Mill has good, organic products. They can be found online at www.bobsredmill.com

I also use NOW!, Country Life, and Arrowhead Mills products. I hope this is helpful, please feel free to ask me anything else! Is Hailee home from the hospital? (I sure hope so!)

e, Chelsea's mom(nonspecific mito)

[Guest guest]

Hi , Here is where I can be of some help for you. In 2001, my allergies got so bad, I was literally a walking rash and snot factory, not to mention utterly miserable! I began seeking alternatives in my diet, particularly with wheat and dairy, which I ate an overabundance of. It took some searching, but I have found a few good resources.

Some books:

Freedom From Allergy Cookbook; 4th ed.; by Greenberg, MD & Nori; Blue Poppy Press, 2000

This book lists alternatives for just about anything you want to avoid, wheat, meat, dairy, eggs, yeast. It also has some great basic recipes for alternative milks, muffins, crackers, etc.

There is also a series of books by a woman who calls herself the Gluten-Free Gourmet, Bette Hagman. I have the one entitled Living Well Without Wheat, rev. ed. Henry Holt & Co., 1990 & 2000. This has recipes for everything from appetizers to bread to pasta. I will reprint the past recipe, since Hailee likes it so much!

Homemade Pasta

1/3 cup tapioca flour

2 tablespoons potato starch(flour)

1/3 cup cornstarch

1/2 teaspoon salt

1 tablespoon Xanthan gum

2 large eggs

1 tablespoon vegatable oil

Combine flours, cornstarch, salt, & xanthan gum. Beat eggs lightly and add oil. Pour egg into flour mixture and stir. This will fell much like pastry dough. Work together in a firm ball and knead a minute or two. Place ball on baord dusted with cornstarch and roll as thin as possible. Cut into desired width strips. The pasta is ready to cook or freeze.

Now, the book says to cook 10 minutes. The first time I made this, I cooked it that long and it was mush. The pasta really only needs to be cooked a minute or two. It is yellowish raw, but turns white once cooked, if that helps any. I also use a pasta maker, except when I use it for lasagna, then I just roll it out by hand. The dough is pretty pliable and workable.

I find most of my alternative products at the health food store. Sometimes, I luck out and the grocery store will have one or two items, usually more expensive. Bob's Red Mill has good, organic products. They can be found online at www.bobsredmill.com

I also use NOW!, Country Life, and Arrowhead Mills products. I hope this is helpful, please feel free to ask me anything else! Is Hailee home from the hospital? (I sure hope so!)

e, Chelsea's mom(nonspecific mito)

[Guest guest]

Hi , Here is where I can be of some help for you. In 2001, my allergies got so bad, I was literally a walking rash and snot factory, not to mention utterly miserable! I began seeking alternatives in my diet, particularly with wheat and dairy, which I ate an overabundance of. It took some searching, but I have found a few good resources.

Some books:

Freedom From Allergy Cookbook; 4th ed.; by Greenberg, MD & Nori; Blue Poppy Press, 2000

This book lists alternatives for just about anything you want to avoid, wheat, meat, dairy, eggs, yeast. It also has some great basic recipes for alternative milks, muffins, crackers, etc.

There is also a series of books by a woman who calls herself the Gluten-Free Gourmet, Bette Hagman. I have the one entitled Living Well Without Wheat, rev. ed. Henry Holt & Co., 1990 & 2000. This has recipes for everything from appetizers to bread to pasta. I will reprint the past recipe, since Hailee likes it so much!

Homemade Pasta

1/3 cup tapioca flour

2 tablespoons potato starch(flour)

1/3 cup cornstarch

1/2 teaspoon salt

1 tablespoon Xanthan gum

2 large eggs

1 tablespoon vegatable oil

Combine flours, cornstarch, salt, & xanthan gum. Beat eggs lightly and add oil. Pour egg into flour mixture and stir. This will fell much like pastry dough. Work together in a firm ball and knead a minute or two. Place ball on baord dusted with cornstarch and roll as thin as possible. Cut into desired width strips. The pasta is ready to cook or freeze.

Now, the book says to cook 10 minutes. The first time I made this, I cooked it that long and it was mush. The pasta really only needs to be cooked a minute or two. It is yellowish raw, but turns white once cooked, if that helps any. I also use a pasta maker, except when I use it for lasagna, then I just roll it out by hand. The dough is pretty pliable and workable.

I find most of my alternative products at the health food store. Sometimes, I luck out and the grocery store will have one or two items, usually more expensive. Bob's Red Mill has good, organic products. They can be found online at www.bobsredmill.com

I also use NOW!, Country Life, and Arrowhead Mills products. I hope this is helpful, please feel free to ask me anything else! Is Hailee home from the hospital? (I sure hope so!)

e, Chelsea's mom(nonspecific mito)

[Guest guest]

Hi :

They do make noodles from rice. You would find that in the section

of your grocery store that sells Aisan food products. There is a

mom here in Appleton that her son was just diagnosed with not being able

to handle wheat products. May be I can get some information from

her. She is having a tough time dealing with it at the moment.

She found a store down in Milwaukee, WI that sells a lot of wheat free

products. You can cook with rice flour and how about oatmeal?

If you want me to contact her, let me know.

Nerenhausen mom to Leah

Angels4hailee@... wrote:

I post before

but hailee was in the hospital and i dont think i got/saw any responses.

Does anyone else have a child that cant eat food with wheat in it, which

most pasta and breads do contain unless its organic. Our drs our

thinking hailee is allergic to wheat products and we were wondering were

to turn, the only food she will eat is pasta in a can from chef boyrdy.

This is so frustrating. We are also still having problems with her

bs, bouncing from highs to low and no one has the ansers. We are

finally getting in to see a local dr who specializes in mito kids we have

an appointment next tue hopefully we get some ideas.

Hailee is still having sleeping spells

off an on for no apparent reason, yesterday and today she took 5 hour naps

but was fine for the rest of the time, maybe a little more clingy than

usually but nothing else out of the ordianary that i can think of.

Oh i hate this not knowing.

Well im off to walk the puppy

Please contact mito-owner

with any problems or questions.

[Guest guest]

Hi :

They do make noodles from rice. You would find that in the section

of your grocery store that sells Aisan food products. There is a

mom here in Appleton that her son was just diagnosed with not being able

to handle wheat products. May be I can get some information from

her. She is having a tough time dealing with it at the moment.

She found a store down in Milwaukee, WI that sells a lot of wheat free

products. You can cook with rice flour and how about oatmeal?

If you want me to contact her, let me know.

Nerenhausen mom to Leah

Angels4hailee@... wrote:

I post before

but hailee was in the hospital and i dont think i got/saw any responses.

Does anyone else have a child that cant eat food with wheat in it, which

most pasta and breads do contain unless its organic. Our drs our

thinking hailee is allergic to wheat products and we were wondering were

to turn, the only food she will eat is pasta in a can from chef boyrdy.

This is so frustrating. We are also still having problems with her

bs, bouncing from highs to low and no one has the ansers. We are

finally getting in to see a local dr who specializes in mito kids we have

an appointment next tue hopefully we get some ideas.

Hailee is still having sleeping spells

off an on for no apparent reason, yesterday and today she took 5 hour naps

but was fine for the rest of the time, maybe a little more clingy than

usually but nothing else out of the ordianary that i can think of.

Oh i hate this not knowing.

Well im off to walk the puppy

Please contact mito-owner

with any problems or questions.

[Guest guest]

Hi :

They do make noodles from rice. You would find that in the section

of your grocery store that sells Aisan food products. There is a

mom here in Appleton that her son was just diagnosed with not being able

to handle wheat products. May be I can get some information from

her. She is having a tough time dealing with it at the moment.

She found a store down in Milwaukee, WI that sells a lot of wheat free

products. You can cook with rice flour and how about oatmeal?

If you want me to contact her, let me know.

Nerenhausen mom to Leah

Angels4hailee@... wrote:

I post before

but hailee was in the hospital and i dont think i got/saw any responses.

Does anyone else have a child that cant eat food with wheat in it, which

most pasta and breads do contain unless its organic. Our drs our

thinking hailee is allergic to wheat products and we were wondering were

to turn, the only food she will eat is pasta in a can from chef boyrdy.

This is so frustrating. We are also still having problems with her

bs, bouncing from highs to low and no one has the ansers. We are

finally getting in to see a local dr who specializes in mito kids we have

an appointment next tue hopefully we get some ideas.

Hailee is still having sleeping spells

off an on for no apparent reason, yesterday and today she took 5 hour naps

but was fine for the rest of the time, maybe a little more clingy than

usually but nothing else out of the ordianary that i can think of.

Oh i hate this not knowing.

Well im off to walk the puppy

Please contact mito-owner

with any problems or questions.

[Guest guest]

, both my children, one with mito, only eat organic products. We make our own bread at home. I am not sure the problem is with non-organic wheat so much, as it is all the other additives in store bought bread. Mine also have problems with other foods unless they are the organic form, so I am sure it is the pesticides, synthetic colors, etc. We have not used these things for years. Accidents are very easy to see - irritability, emotional ups and downs, etc., as well as bowel troubles and rashes. And after we got the mito diagnosis, Mayo Clinic told us it is important to avoid all the additives and such.

My son with mito was wheat and milk free for 4 years. He now eats those things with no problems. Wheat is organic. Milk we just make sure it is small amounts at a time of ice cream and cheese. He is not drinking milk, just getting it in those foods.

cara

-----Original Message-----From: Angels4hailee@... Sent: Thursday, December 12, 2002 8:50 PMTo: Mito Subject: Re: Not being able to have wheat productsI post before but hailee was in the hospital and i dont think i got/saw any responses. Does anyone else have a child that cant eat food with wheat in it, which most pasta and breads do contain unless its organic. Our drs our thinking hailee is allergic to wheat products and we were wondering were to turn, the only food she will eat is pasta in a can from chef boyrdy. This is so frustrating. We are also still having problems with her bs, bouncing from highs to low and no one has the ansers. We are finally getting in to see a local dr who specializes in mito kids we have an appointment next tue hopefully we get some ideas.Hailee is still having sleeping spells off an on for no apparent reason, yesterday and today she took 5 hour naps but was fine for the rest of the time, maybe a little more clingy than usually but nothing else out of the ordianary that i can think of. Oh i hate this not knowing.Well im off to walk the puppy Please contact mito-owner with any problems or questions.

[Guest guest]

, both my children, one with mito, only eat organic products. We make our own bread at home. I am not sure the problem is with non-organic wheat so much, as it is all the other additives in store bought bread. Mine also have problems with other foods unless they are the organic form, so I am sure it is the pesticides, synthetic colors, etc. We have not used these things for years. Accidents are very easy to see - irritability, emotional ups and downs, etc., as well as bowel troubles and rashes. And after we got the mito diagnosis, Mayo Clinic told us it is important to avoid all the additives and such.

My son with mito was wheat and milk free for 4 years. He now eats those things with no problems. Wheat is organic. Milk we just make sure it is small amounts at a time of ice cream and cheese. He is not drinking milk, just getting it in those foods.

cara

-----Original Message-----From: Angels4hailee@... Sent: Thursday, December 12, 2002 8:50 PMTo: Mito Subject: Re: Not being able to have wheat productsI post before but hailee was in the hospital and i dont think i got/saw any responses. Does anyone else have a child that cant eat food with wheat in it, which most pasta and breads do contain unless its organic. Our drs our thinking hailee is allergic to wheat products and we were wondering were to turn, the only food she will eat is pasta in a can from chef boyrdy. This is so frustrating. We are also still having problems with her bs, bouncing from highs to low and no one has the ansers. We are finally getting in to see a local dr who specializes in mito kids we have an appointment next tue hopefully we get some ideas.Hailee is still having sleeping spells off an on for no apparent reason, yesterday and today she took 5 hour naps but was fine for the rest of the time, maybe a little more clingy than usually but nothing else out of the ordianary that i can think of. Oh i hate this not knowing.Well im off to walk the puppy Please contact mito-owner with any problems or questions.

[Guest guest]

, both my children, one with mito, only eat organic products. We make our own bread at home. I am not sure the problem is with non-organic wheat so much, as it is all the other additives in store bought bread. Mine also have problems with other foods unless they are the organic form, so I am sure it is the pesticides, synthetic colors, etc. We have not used these things for years. Accidents are very easy to see - irritability, emotional ups and downs, etc., as well as bowel troubles and rashes. And after we got the mito diagnosis, Mayo Clinic told us it is important to avoid all the additives and such.

My son with mito was wheat and milk free for 4 years. He now eats those things with no problems. Wheat is organic. Milk we just make sure it is small amounts at a time of ice cream and cheese. He is not drinking milk, just getting it in those foods.

cara

-----Original Message-----From: Angels4hailee@... Sent: Thursday, December 12, 2002 8:50 PMTo: Mito Subject: Re: Not being able to have wheat productsI post before but hailee was in the hospital and i dont think i got/saw any responses. Does anyone else have a child that cant eat food with wheat in it, which most pasta and breads do contain unless its organic. Our drs our thinking hailee is allergic to wheat products and we were wondering were to turn, the only food she will eat is pasta in a can from chef boyrdy. This is so frustrating. We are also still having problems with her bs, bouncing from highs to low and no one has the ansers. We are finally getting in to see a local dr who specializes in mito kids we have an appointment next tue hopefully we get some ideas.Hailee is still having sleeping spells off an on for no apparent reason, yesterday and today she took 5 hour naps but was fine for the rest of the time, maybe a little more clingy than usually but nothing else out of the ordianary that i can think of. Oh i hate this not knowing.Well im off to walk the puppy Please contact mito-owner with any problems or questions.

[Guest guest]

Cara,

I should go back to more natural foods. We had less problems when I shopped the co-op. But I have slacked off to the point that we have small lunch size bags of chips and tons of processed crackers in the cupboard. Oh, it just seem s like one more chore to go into town to the health food store change menus etc. Maybe, I will start back slowly.

Thanks for the post it was inspiring/\.

Riley

-----Original Message-----From: C. Waller Sent: Friday, December 13, 2002 8:04 AMTo: Mito Subject: RE: Re: Not being able to have wheat products

, both my children, one with mito, only eat organic products. We make our own bread at home. I am not sure the problem is with non-organic wheat so much, as it is all the other additives in store bought bread. Mine also have problems with other foods unless they are the organic form, so I am sure it is the pesticides, synthetic colors, etc. We have not used these things for years. Accidents are very easy to see - irritability, emotional ups and downs, etc., as well as bowel troubles and rashes. And after we got the mito diagnosis, Mayo Clinic told us it is important to avoid all the additives and such.

My son with mito was wheat and milk free for 4 years. He now eats those things with no problems. Wheat is organic. Milk we just make sure it is small amounts at a time of ice cream and cheese. He is not drinking milk, just getting it in those foods.

cara

-----Original Message-----From: Angels4hailee@... Sent: Thursday, December 12, 2002 8:50 PMTo: Mito Subject: Re: Not being able to have wheat productsI post before but hailee was in the hospital and i dont think i got/saw any responses. Does anyone else have a child that cant eat food with wheat in it, which most pasta and breads do contain unless its organic. Our drs our thinking hailee is allergic to wheat products and we were wondering were to turn, the only food she will eat is pasta in a can from chef boyrdy. This is so frustrating. We are also still having problems with her bs, bouncing from highs to low and no one has the ansers. We are finally getting in to see a local dr who specializes in mito kids we have an appointment next tue hopefully we get some ideas.Hailee is still having sleeping spells off an on for no apparent reason, yesterday and today she took 5 hour naps but was fine for the rest of the time, maybe a little more clingy than usually but nothing else out of the ordianary that i can think of. Oh i hate this not knowing.Well im off to walk the puppy Please contact mito-owner with any problems or questions.

[Guest guest]

Cara,

I should go back to more natural foods. We had less problems when I shopped the co-op. But I have slacked off to the point that we have small lunch size bags of chips and tons of processed crackers in the cupboard. Oh, it just seem s like one more chore to go into town to the health food store change menus etc. Maybe, I will start back slowly.

Thanks for the post it was inspiring/\.

Riley

-----Original Message-----From: C. Waller Sent: Friday, December 13, 2002 8:04 AMTo: Mito Subject: RE: Re: Not being able to have wheat products

, both my children, one with mito, only eat organic products. We make our own bread at home. I am not sure the problem is with non-organic wheat so much, as it is all the other additives in store bought bread. Mine also have problems with other foods unless they are the organic form, so I am sure it is the pesticides, synthetic colors, etc. We have not used these things for years. Accidents are very easy to see - irritability, emotional ups and downs, etc., as well as bowel troubles and rashes. And after we got the mito diagnosis, Mayo Clinic told us it is important to avoid all the additives and such.

My son with mito was wheat and milk free for 4 years. He now eats those things with no problems. Wheat is organic. Milk we just make sure it is small amounts at a time of ice cream and cheese. He is not drinking milk, just getting it in those foods.

cara

-----Original Message-----From: Angels4hailee@... Sent: Thursday, December 12, 2002 8:50 PMTo: Mito Subject: Re: Not being able to have wheat productsI post before but hailee was in the hospital and i dont think i got/saw any responses. Does anyone else have a child that cant eat food with wheat in it, which most pasta and breads do contain unless its organic. Our drs our thinking hailee is allergic to wheat products and we were wondering were to turn, the only food she will eat is pasta in a can from chef boyrdy. This is so frustrating. We are also still having problems with her bs, bouncing from highs to low and no one has the ansers. We are finally getting in to see a local dr who specializes in mito kids we have an appointment next tue hopefully we get some ideas.Hailee is still having sleeping spells off an on for no apparent reason, yesterday and today she took 5 hour naps but was fine for the rest of the time, maybe a little more clingy than usually but nothing else out of the ordianary that i can think of. Oh i hate this not knowing.Well im off to walk the puppy Please contact mito-owner with any problems or questions.

[Guest guest]

Cara,

I should go back to more natural foods. We had less problems when I shopped the co-op. But I have slacked off to the point that we have small lunch size bags of chips and tons of processed crackers in the cupboard. Oh, it just seem s like one more chore to go into town to the health food store change menus etc. Maybe, I will start back slowly.

Thanks for the post it was inspiring/\.

Riley

-----Original Message-----From: C. Waller Sent: Friday, December 13, 2002 8:04 AMTo: Mito Subject: RE: Re: Not being able to have wheat products

, both my children, one with mito, only eat organic products. We make our own bread at home. I am not sure the problem is with non-organic wheat so much, as it is all the other additives in store bought bread. Mine also have problems with other foods unless they are the organic form, so I am sure it is the pesticides, synthetic colors, etc. We have not used these things for years. Accidents are very easy to see - irritability, emotional ups and downs, etc., as well as bowel troubles and rashes. And after we got the mito diagnosis, Mayo Clinic told us it is important to avoid all the additives and such.

My son with mito was wheat and milk free for 4 years. He now eats those things with no problems. Wheat is organic. Milk we just make sure it is small amounts at a time of ice cream and cheese. He is not drinking milk, just getting it in those foods.

cara

-----Original Message-----From: Angels4hailee@... Sent: Thursday, December 12, 2002 8:50 PMTo: Mito Subject: Re: Not being able to have wheat productsI post before but hailee was in the hospital and i dont think i got/saw any responses. Does anyone else have a child that cant eat food with wheat in it, which most pasta and breads do contain unless its organic. Our drs our thinking hailee is allergic to wheat products and we were wondering were to turn, the only food she will eat is pasta in a can from chef boyrdy. This is so frustrating. We are also still having problems with her bs, bouncing from highs to low and no one has the ansers. We are finally getting in to see a local dr who specializes in mito kids we have an appointment next tue hopefully we get some ideas.Hailee is still having sleeping spells off an on for no apparent reason, yesterday and today she took 5 hour naps but was fine for the rest of the time, maybe a little more clingy than usually but nothing else out of the ordianary that i can think of. Oh i hate this not knowing.Well im off to walk the puppy Please contact mito-owner with any problems or questions.

[Guest guest]

,

I just remembered corn starch is great to thicken things and use instead of flour in many cases. Wheat free pasta is not bad. You have to experiment some are good some are not. Try buying in bulk if your co-op/health food store has it. You can buy small quantities and try them to see what will work for you.

-----Original Message-----From: Sorensen Sent: Friday, December 13, 2002 6:59 AMTo: Mito Subject: Re: Re: Not being able to have wheat productsHi : They do make noodles from rice. You would find that in the section of your grocery store that sells Aisan food products. There is a mom here in Appleton that her son was just diagnosed with not being able to handle wheat products. May be I can get some information from her. She is having a tough time dealing with it at the moment. She found a store down in Milwaukee, WI that sells a lot of wheat free products. You can cook with rice flour and how about oatmeal? If you want me to contact her, let me know. Nerenhausen mom to Leah Angels4hailee@... wrote: I post before but hailee was in the hospital and i dont think i got/saw any responses. Does anyone else have a child that cant eat food with wheat in it, which most pasta and breads do contain unless its organic. Our drs our thinking hailee is allergic to wheat products and we were wondering were to turn, the only food she will eat is pasta in a can from chef boyrdy. This is so frustrating. We are also still having problems with her bs, bouncing from highs to low and no one has the ansers. We are finally getting in to see a local dr who specializes in mito kids we have an appointment next tue hopefully we get some ideas. Hailee is still having sleeping spells off an on for no apparent reason, yesterday and today she took 5 hour naps but was fine for the rest of the time, maybe a little more clingy than usually but nothing else out of the ordianary that i can think of. Oh i hate this not knowing. Well im off to walk the puppy Please contact mito-owner with any problems or questions.

[Guest guest]

,

I just remembered corn starch is great to thicken things and use instead of flour in many cases. Wheat free pasta is not bad. You have to experiment some are good some are not. Try buying in bulk if your co-op/health food store has it. You can buy small quantities and try them to see what will work for you.

-----Original Message-----From: Sorensen Sent: Friday, December 13, 2002 6:59 AMTo: Mito Subject: Re: Re: Not being able to have wheat productsHi : They do make noodles from rice. You would find that in the section of your grocery store that sells Aisan food products. There is a mom here in Appleton that her son was just diagnosed with not being able to handle wheat products. May be I can get some information from her. She is having a tough time dealing with it at the moment. She found a store down in Milwaukee, WI that sells a lot of wheat free products. You can cook with rice flour and how about oatmeal? If you want me to contact her, let me know. Nerenhausen mom to Leah Angels4hailee@... wrote: I post before but hailee was in the hospital and i dont think i got/saw any responses. Does anyone else have a child that cant eat food with wheat in it, which most pasta and breads do contain unless its organic. Our drs our thinking hailee is allergic to wheat products and we were wondering were to turn, the only food she will eat is pasta in a can from chef boyrdy. This is so frustrating. We are also still having problems with her bs, bouncing from highs to low and no one has the ansers. We are finally getting in to see a local dr who specializes in mito kids we have an appointment next tue hopefully we get some ideas. Hailee is still having sleeping spells off an on for no apparent reason, yesterday and today she took 5 hour naps but was fine for the rest of the time, maybe a little more clingy than usually but nothing else out of the ordianary that i can think of. Oh i hate this not knowing. Well im off to walk the puppy Please contact mito-owner with any problems or questions.

[Guest guest]

,

I just remembered corn starch is great to thicken things and use instead of flour in many cases. Wheat free pasta is not bad. You have to experiment some are good some are not. Try buying in bulk if your co-op/health food store has it. You can buy small quantities and try them to see what will work for you.

-----Original Message-----From: Sorensen Sent: Friday, December 13, 2002 6:59 AMTo: Mito Subject: Re: Re: Not being able to have wheat productsHi : They do make noodles from rice. You would find that in the section of your grocery store that sells Aisan food products. There is a mom here in Appleton that her son was just diagnosed with not being able to handle wheat products. May be I can get some information from her. She is having a tough time dealing with it at the moment. She found a store down in Milwaukee, WI that sells a lot of wheat free products. You can cook with rice flour and how about oatmeal? If you want me to contact her, let me know. Nerenhausen mom to Leah Angels4hailee@... wrote: I post before but hailee was in the hospital and i dont think i got/saw any responses. Does anyone else have a child that cant eat food with wheat in it, which most pasta and breads do contain unless its organic. Our drs our thinking hailee is allergic to wheat products and we were wondering were to turn, the only food she will eat is pasta in a can from chef boyrdy. This is so frustrating. We are also still having problems with her bs, bouncing from highs to low and no one has the ansers. We are finally getting in to see a local dr who specializes in mito kids we have an appointment next tue hopefully we get some ideas. Hailee is still having sleeping spells off an on for no apparent reason, yesterday and today she took 5 hour naps but was fine for the rest of the time, maybe a little more clingy than usually but nothing else out of the ordianary that i can think of. Oh i hate this not knowing. Well im off to walk the puppy Please contact mito-owner with any problems or questions.

[Guest guest]

, no hailee does have a g tube, but we finally got her to eat close to 65 percent of all meals (for the time being, she tends to fluctuate, she eats good for a month or two than refuses to eat for a month or two), but the only food she will eat is chef byordy and cheese quesidillas. Guess im gonna have to look into other foods. i wonder if her formula has wheat in it,g uess i should go look.

thanks