Hello, need advice re: CF diet

[Guest guest]

Hi, I have put my 2.5 year old son on the CF diet, will probably initiate the GF part soon. I have two questions, though. I have been giving him rice milk and he is fine with that. He also has been eating a lot of bread and he's had a cold. Okay, the first question is - does rice milk really fill them up a lot, more so than regular cows milk? It may just be a 2 year old thing but he hasn't been eating much at all lately. The other thing is, his past 2 bm's have been "blond" and that is bothering me. I'd appreciate it if anyone can give me some insight!~

Thanks.

Diane

[Guest guest]

Diane,

Rice milk has a lot of sugar. A lot of the brands also contain gluten. I know Pacific rice milk doesn't have gluten in it. What kind of bread has he been eating? When you say a lot, what do you mean? If he is only eating bread then I would try and give him some protein with it, like peanut or almond butter. He is getting sugar from the rice milk and carbos from the bread, which also turns into a sugar. It almost sounds like he is digging the "high" from the carbos and sugar. Try to get some more protein in him. When we took away the gluten after 6 mos of being cf, my son quit eating. He is just now after 1 yr cf and 6 1/2 mos of being gf eating different proteins. He would only eat chicken nuggets, mac and cheese, grilled cheese, milk, peanut butter, hotdogs and now he is starting to eat other forms of protein, like a piece of chicken. He was also a major milk junkie, 48 + ounces of milk a day. And heaven help you if you were late getting it! And a major sugar/carbo kid. He still is but we try to balance it out.

Anyway, good luck with the cf. It is a learning process and the www.gfcfdiet.com is a great web page resource.

Jenn

-----Original Message-----From: Diane Atsma Sent: Sunday, October 22, 2000 8:17 PMTo: Mosaic-List (AT) eSubject: Hello, need advice re: CF diet

Hi, I have put my 2.5 year old son on the CF diet, will probably initiate the GF part soon. I have two questions, though. I have been giving him rice milk and he is fine with that. He also has been eating a lot of bread and he's had a cold. Okay, the first question is - does rice milk really fill them up a lot, more so than regular cows milk? It may just be a 2 year old thing but he hasn't been eating much at all lately. The other thing is, his past 2 bm's have been "blond" and that is bothering me. I'd appreciate it if anyone can give me some insight!~

Thanks.Mosaic meets the 2nd Thursday morning and the 3rd Wednesday evening of every month.http://www.egroups.com/community/MosaicMoms

[Guest guest]

Hi, thanks for responding. He's drinking "harmony farms" brand rice milk; do any of these ingredients mean gluten? [filtered water, rice syrup solids (from partially milled brown rice), rice protein, natural flavor (??), sea salt, carrageenan, natural color added (??) guar bean gum, xanthan gum.] I still have to buy the special diets book to implement the gf diet.

He loves bagels. You can't have a bagel in his sight without him begging for it. I give him raisin bread with peanut butter for bfast, I buy low-fat (he's 44 lbs. and 40 inches tall - way off the charts for a 30 month old) 7 grain bread for pb & j for lunch usually. He really only will eat pb & j, chicken nuggets, fish sticks, pizza, grapes, nectarines, bananas, raisins/raisin bread, cheese/grilled cheese, and pasta. (he gags on regular chicken, fish) He will not eat ANY veggies. He loves milk but I limit him to 24-27 oz. a day. Yesterday, he ate raisin bread with peanut butter for bfast, wouldn't eat lunch, and only would eat some french bread for dinner and 2 bites of a banana. Today, no bfast, bagel for lunch, 3 fish sticks and grapes for dinner. He's driving me crazy! And with these past 2 bm's being so pale I'm starting to really get concerned.

What did you do when you son stopped eating? I can see doing that! But at the same time, I feel like rather than just give him bread to eat, let him starve until he'll eat anything - including veggies! But my husband can't see him go hungry. Hopefully he'll back me up on the GF part of the diet.

I guess I'll call his ped tomorrow to ask about the bm's. Oh, by the way, my ped was sweet enough to see my copy of Seroussi's book and got himself a copy, and has decided to try house calls for certain kids - like my son, who completely freaks at the ped's office, I mean completely. He's not a DAN dr. but he's wonderful and willing to try anything, do anything he can to help out parents.

Thanks for your help.

Diane

RE: Hello, need advice re: CF diet

Diane,

Rice milk has a lot of sugar. A lot of the brands also contain gluten. I know Pacific rice milk doesn't have gluten in it. What kind of bread has he been eating? When you say a lot, what do you mean? If he is only eating bread then I would try and give him some protein with it, like peanut or almond butter. He is getting sugar from the rice milk and carbos from the bread, which also turns into a sugar. It almost sounds like he is digging the "high" from the carbos and sugar. Try to get some more protein in him. When we took away the gluten after 6 mos of being cf, my son quit eating. He is just now after 1 yr cf and 6 1/2 mos of being gf eating different proteins. He would only eat chicken nuggets, mac and cheese, grilled cheese, milk, peanut butter, hotdogs and now he is starting to eat other forms of protein, like a piece of chicken. He was also a major milk junkie, 48 + ounces of milk a day. And heaven help you if you were late getting it! And a major sugar/carbo kid. He still is but we try to balance it out.

Anyway, good luck with the cf. It is a learning process and the www.gfcfdiet.com is a great web page resource.

Jenn

-----Original Message-----From: Diane Atsma Sent: Sunday, October 22, 2000 8:17 PMTo: Mosaic-List (AT) eSubject: Hello, need advice re: CF diet

Hi, I have put my 2.5 year old son on the CF diet, will probably initiate the GF part soon. I have two questions, though. I have been giving him rice milk and he is fine with that. He also has been eating a lot of bread and he's had a cold. Okay, the first question is - does rice milk really fill them up a lot, more so than regular cows milk? It may just be a 2 year old thing but he hasn't been eating much at all lately. The other thing is, his past 2 bm's have been "blond" and that is bothering me. I'd appreciate it if anyone can give me some insight!~

Thanks.Mosaic meets the 2nd Thursday morning and the 3rd Wednesday evening of every month.http://www.egroups.com/community/MosaicMoms Mosaic meets the 2nd Thursday morning and the 3rd Wednesday evening of every month.http://www.egroups.com/community/MosaicMoms

[Guest guest]

Diane,

One thing I found insightful was looking at the yeast issue for my son. As

far as rice milk I personally would recommend Pacifica NO FAT Rice Milk Plain.

My next advance will be in cutting my sons rice milk intake with the new

knowlegde of what has been brought forth on this forum. Not completely but as

he is getting closer to five I notice most children his age do not drink

milk.

Steamed Chicken and Brocolli with no sauces from the chinese restaraunt makes

cooking easier for this dad. Good taste brand bacon is a winner.. s

bakery makes great english muffin type buns but remember there is a yeast

consequence..Tastes very good.. and I use it to give vitamins after he eats

bread. Yeast can be controlled with niostatitin (60 day dose) and elimination

of most high solicalite fruits.

Ie. grapes raisins..leaning more towards dried mango and papaya from

Healthway on riveredge road in Tenafly. It is my sons sweet...Pears are ok

too..IMHO.

Good luck to you. I wish you the best.

JB

[Guest guest]

In a message dated 10/22/00 8:15:37 PM Eastern Daylight Time,

ats792@... writes:

<< Hi, I have put my 2.5 year old son on the CF diet, will probably

initiate the GF part soon. I have two questions, though. I have been giving

him rice milk and he is fine with that. He also has been eating a lot of

bread and he's had a cold. Okay, the first question is - does rice milk

really fill them up a lot, more so than regular cows milk? It may just be a

2 year old thing but he hasn't been eating much at all lately. The other

thing is, his past 2 bm's have been " blond " and that is bothering me. I'd

appreciate it if anyone can give me some insight!~

Thanks.

Diane

>>

Diane:

Hello, and welcome to the list. If your son has or has recently had a

cold, then his appetite is probably down because of that alone. I see that

has given you some good insights. I believe soy milk *may* be a

better alternative for a child who isn't getting much protein. But, as Jenn

mentioned, the milk must be gluten-free, which means no " chocolate " or

" vanilla " flavorings.

Many kids with GI problems have BMs that are tan-colored, and sometimes

loose, rather than formed. This isn't normal, and it could be indicative of

some form of die-off reaction from the diet or malabsorption, or intestinal

permeability (also known as " leaky gut " ). Wait another week and see what

develops. If the BMs are consistently tan and loose, or not quite right, you

may want to consider getting some stool testing done.

Are you seeing a DAN! doctor with your son, or would you be interested in

a referral from members of this list?

List Moderator

[Guest guest]

Diane,

That is great news about your ped. Have you thought about getting him a copy of the DAN protocol and having him become a DAN doc?

My husband had a hard time with the initial part of the diet where went on a hunger strike. I tried to feed him for a little while without my dh around. It helped because by the time we had things under way, he was eating some things and my dh was able to see that he was eating. used to be off the charts also and he lost 7 lbs on the gfcf diet mostly on the gluten part. He now weighs 38lbs and is about 39 or 40 inches tall.

Two things on the rice milk. Go for the Pacific, (you could call Harmony farms and ask them if they are gluten and casein free and if it does have gluten in it, I would cut it out even though you haven't gone gf yet) either the low fat or the vanilla enriched. They both (as far as I can tell) have a lot of sugar in them so cut back and water them down. The enriched has acidophilus (sp) and vitamins. Also, I would start limiting his rice milk slowly down to a couple of cups a day. If he has a yeast issue, it is just feeding the yeast.

I would also recommend getting some of the preliminary DAN testing done. Like the urine peptide test or the IGg allergy test. The peptide test will tell you the level of peptides in the urine and will serve as a basis for further tests. I wish I had done that right away. The IGg will tell you what other food intolerances your son may have. Once he is off of casein and gluten for a while these levels will fall.

I think it is a very good idea that you are taking this slow. There are little things you can do along they way that will help you once you get to the gluten part. Good luck and stay in touch!

[Guest guest]

In a message dated 10/23/00 9:24:40 PM Eastern Daylight Time, liamm@...

writes:

<<

Not all vanilla flavored drinks have gluten. We use Pacific vanilla almond

milk and it is GFCF. Also, for chocolate flavoring you can safely add

Nestles' NesQuick chocolate syrup.

Kathy

>>

Kathy:

Thanks for correcting me. This sounds yummy.

[Guest guest]

.. >mentioned, the milk must be gluten-free, which means no " chocolate " or

> " vanilla " flavorings.

Not all vanilla flavored drinks have gluten. We use Pacific vanilla almond

milk and it is GFCF. Also, for chocolate flavoring you can safely add

Nestles' NesQuick chocolate syrup.

Kathy