Re: Food sensitivities???Mito related???

December 17, 2003

We have dealt with the food sensitivities/allergies too. I've never gotten a doctor to comment either way on their relation to mito, but I can offer sympathy as to the way they alter your life, especially with kids who many times already need all the extra calories you can get in them. I often wonder how they'd like this to take place as they continually remove foods from the diet. Maya's RAST tests for allergies include mild protiens and eggs and her others include fructose, sucrose, and lactose. Fructose basically eliminates all fruits, veggies, and simple sugars as cane sugars are to be eliminated with this diet and lactose requires you eliminate many veggies also. Again, don't know if they are related, but I can relate to the frustration of trying to feed your child with these limitations on their diet. On the flip side, when we've kept to her diet there was a positive change in some of her labs and GI symptoms so we keep plugging along. Good luck.

Holly

December 17, 2003

We have dealt with the food sensitivities/allergies too. I've never gotten a doctor to comment either way on their relation to mito, but I can offer sympathy as to the way they alter your life, especially with kids who many times already need all the extra calories you can get in them. I often wonder how they'd like this to take place as they continually remove foods from the diet. Maya's RAST tests for allergies include mild protiens and eggs and her others include fructose, sucrose, and lactose. Fructose basically eliminates all fruits, veggies, and simple sugars as cane sugars are to be eliminated with this diet and lactose requires you eliminate many veggies also. Again, don't know if they are related, but I can relate to the frustration of trying to feed your child with these limitations on their diet. On the flip side, when we've kept to her diet there was a positive change in some of her labs and GI symptoms so we keep plugging along. Good luck.

Holly

December 17, 2003

.. I am having a

hard time getting her to drink the rice and soy milk.

Have you tried the choc. Silk milk? That is what I drink. Maya can't have it because of the sugar, but I take the plain soy milk and add plain coco powder and equal to make choc soy milk within her restriction. Never could get her to drink rice milk and you can't cook with rice milk either. Soy milk will work in some recipes and will thicken for pudding, etc (if you need to make pudding to give meds, etc).

December 17, 2003

.. I am having a

hard time getting her to drink the rice and soy milk.

Have you tried the choc. Silk milk? That is what I drink. Maya can't have it because of the sugar, but I take the plain soy milk and add plain coco powder and equal to make choc soy milk within her restriction. Never could get her to drink rice milk and you can't cook with rice milk either. Soy milk will work in some recipes and will thicken for pudding, etc (if you need to make pudding to give meds, etc).

December 17, 2003

I would highly recommend going to a health food store or see if an aisle in

your store has an organic aisle. I wish your daughter would like rice milk.

That is all Leah drinks. It's sweet enough for her. We get either the

vanilla or regular enriched rice milk. Does it depend on what brand you

buy? Now is it just peanuts or all nuts? Was wondering because they make an

almond milk that my boys love!!! Especially the chocolate. I think once you

start reading labels it will become second nature as to what to buy. I have

a friend here in Appleton whose son is diabetic and has celiac (sp?)

disease. So she has it quite tough, too. I know she buys her food online

from a store down in Milwaukee, WI. She makes a lot of stuff from scratch

for her son. If you want me to check with her I can. Good luck and take it

one day at a time for weaning her off the food products. That way it will be

easier on you and her. Some times it's hard to go cold turkey on food

elimination. Do what you feel is right and how it will affect your

daughter. Good luck, I know we are all rooting for you.

Nerenhausen

mom to Leah

thefiveofus02@... wrote:

> It seems like every time we go to the doctor, we come out with

> more questions than answers. My youngest, Molly (currently

> undiagnosed) had some blood tests that shows she has sensitivities

> too: Milk, the whole egg, wheat, and peanut. The doctor is not

> calling them allergies, but wants her off of all of these. Oh yeah,

> thats easy. That is every thing! Well I have gone to the store and

> started this diet and we'll see what happens. Now her tests also

> showed she has a riboflavin deficiency as do I. Anyone else with any

> of this? How about an elevated b12? Hers and 's are about

> double the normal. Is this linked to mito? or just more bad luck.

> definately does have hypogammaglobulinemia and we are going to

> see the immuno guy soon to see about IVIG. NOw I have read from many

> mito doc's that this is not connected, then why do so many mito

> people have this?

>

> Any help would be appreciated, and diet ideas too. I am having a

> hard time getting her to drink the rice and soy milk.

>

> Dawn

>

> Please contact mito-owner with any problems or questions.

>

December 17, 2003