New to the diet

[Guest guest]

Alice,

We are newbies ourselves but I'll see if I can help. We've been casein free

since May and Gluten free since June (my daughter will be 5 in Sept.) We've

also decided to go GFCF first then worry about the yeast. We chose not to test

just to jump right in because we've heard some testing is not reliable and we

figured the diet wouldn't hurt her.

Don't feel guilty about waiting. We waited a long time after knowing about the

diet too. My daughter didn't have the red cheeks, diarrhea etc. We just were

hoping for better attention, more language and dare we dream it --- maybe a

peaceful nights sleep.

When she would tantrum and before sleep & after waking we always gave her a

cup of warm milk. I never thought I was a bad thing to do. But about two

weeks after we started the diet it was mothers day and she had some ice cream

cake and part of a grilled cheese sandwich and she was up all night just like

always pre-diet.

The first month or so of the diet can be he**. If the shopping, label reading

and trying to track down a product you need doesn't drive you nuts, your child's

reaction to the new foods(or lack of his usual foods) and withdrawal will. It

does get easier!! Hang in there through the tough times.

I did the same as you and I cleaned out the cabinet my daughter always goes to

and replaced her old stuff with all Ok items. You should have seen her face the

first few days!

1. How long do you go gf/cf before you see effects? Keep in mind my son's

digestion seems to be doing just fine, no diarrhea, no apple cheeks from

allergies (they were only from age 2-4, or when he has a cold), no cramps,

etc) so I'm looking for the behavioral changes, mostly attention span and

language (conversations). I don't know what to be on the lookout for, or

how long it might take- I think I've seen a few subtle changes in just this

short timeframe and we are going to get a test tomorrow with reintroduction

with pizza (sorry, its the end of summer school and I PROMISED him pizza at

the local overstimulate yourself with video games place called Chuck E

Cheese before I knew about the peptide test....) I guess I'm looking for

encouragement- how early on the diet do you see effects, what is a good

waiting period before taking the next step (2 months? 6 months?...)

Seeing a change can take a long time. Casein is supposed to leave your system

within several days but I understand gluten can take up to a year and there can

still be small amounts in the system. ( We've committed to at least a yr. GF to

be sure if she's sensitive or not) We went CF first and then GF 2 or 3 weeks

later. Our daughter began sleeping through the night after becoming CF. The

gluten has been more subtle but still there. She has a greater awareness about

her, she has new words and is enunciating her old words better. She has

increased her interaction with her big sister.

I have heard that the older the child is the longer it may take for the gluten

to leave the system because they have had more time for it to build up. On the

negative side you may have to wait a little longer to see the improvements but

on the PLUS side I've heard, in that case, the withdrawal stage is more gradual

and less intense.

2. Is there a low casein margarine? I mean besides Spectrum. One in the

grocery store. Has any one looked into which national brand has the least

casein? My son does not use a lot of margarine, I use some in cooking. And

what about butter? I read somewhere since its all fat it doesn't have

casein, but I've also seen it listed as a no-no, so what gives? Can you use

butter or not?

Fleischmann's Unsalted sticks or Light sticks are OK. Just double check the

label and make sure whet is not an ingredient. One of the Fleischmann's tub

margarine is OK too, but I don't like it as much you can't cook with it well. I

think it just seems more " fake. " It doesn't contain any casein. No amount is

acceptable on the diet. You should try to stay as clean as possible to get the

best result. Butter is a no-no. What you may be referring to is " Ghee " what

is left after butter is clarified. I think some people may use ghee on the

diet. If you're interested do a search on this site. I know there was detailed

discussion of this a while back. I don't use it because it is not very healthy

-- its all fat.

3. What about going to school? I know he'll have to pack lunch. I'm

trying to get him used to the diet and then explain to him what he can and

can't eat, I don't know how well he'll understand. How have other parents

handled this? How coopertive has the schools been (keep in mind, I've

gotten the impression at times that they don't think his " Handicap " is that

severe, that he's got more of an attention or willingness issue (bulls..t)

(this is due to his inconsistency...)- on the other hand they also tell me

he's not ready for prime time (full inclusion)) Will I need to put things

in his IEP to enforce his diet? How do you handle class parties? Food is

such a large part of our social life, how do you tell a 7 year old he can't

have cupcakes, or do you let him have one once a week?

Getting him used to the new foods at home first is a great idea. Then pack

whatever he seems to be enjoying for lunch. Our daughters lunch can look kind

of weird. i.e. peanut butter sandwich on GF crackers. My pizza creation on a

GF crust with no cheese. I remember seeing a kid in my daughter's class with

some strange kind of waffle sandwich and wondering what the heck it was before

we were GFCF savvy.

Things that work for us: cheesless GF meatball pizza on homemade crust.

Homemade chicken nuggets (I use crushed potato chips instead of bread crumbs)

and Ore Ida French fries, peanut butter sandwiches, Tostitos corn chips and

Pamela's Chunky Choc. chip cookies. My daughter doesn't eat pasta but quinoa

pasta is very good I think the brand I bought at the HFS was Ancient Harvest.

Our school doesn't know much about the diet but the haven't given me any trouble

about it either. If they do I will have to put it in her IEP for now it doesn't

seem necessary. You should probably write a letter and briefly explain the

diet, ask them not to give your son anything you don't send and if there is a

party/special event ask for advance notice so you can send a suitable

substitute.

I baked a whole GFCF cake with frosting and sprinkles cut in into slices and

froze the slices individually so when there's a party I bring my own slice. You

can do the same with cupcakes and try to make the as close to the ones he

usually likes.

Finally, if you're still with me, I've gone on so long, some of my survival

tips. Go to GFCFdiet.com for list of acceptable foods many of which you can buy

at the local supermarket. They also list no-nos and health & beauty items.

Find a few good recipes to work with for things you can't find or that are too

expensive. For example, I bake all her bread some of the same dough I shape

like bagels. I also make & keep pizza crusts and chicken nuggets in the

freezer. I thought the breads at the stores were gross and they were also

really expensive $ 4.59 for a very small loaf. I found a good HFS in my area

and everything else I get from www.missroben.com in a big once in a while order

to save on shipping.

Best of luck,

Ann