Re: Update - GFCF diet help?

[Guest guest]

Kerri,

If you haven't already purchased it...read the book the The Starving

Brains...I'm not sure if that's the accurate title, but it will advise you

how to go about this specific diet.

Myra

" Jeff "

<kerripat@...>

Sent by: cc:

@yaho Subject:

[ ] Update - GFCF diet help?

ogroups.com

01/18/2006 08:52 AM

Please respond to

Hi All,

I haven't been keeping up with this board for quite a while now.

For those of you who remember me and my three-year-old daughter Meg,

here's a quick update. Previously, Meg's therapists had not been

able to diagnose apraxia because she had a very limited vocabulary,

but now they say they're certain she does. Not the best news, but

it's good that we know for certain now. Since starting fish oils

and carnaware, she's had an explosion in her vocabulary, and

attempts to say just about everything. She has a great grasp of

language, but terrible articulation and many speech errors,

especially in long utterances. For example, she can say " Kate " (her

sister's name), but " Come here, Kate " would sound like " co ere tate "

(or she would say what's easier for her, " Come Baby! " . We love

Meg's preschool, even though I'm not thrilled with the quality of

therapy she receives there. She gets private therapy (speech 30

minutes twice a week, OT 45 minutes once a week) as well as therapy

at preschool (speech 20 minutes twice a week, OT 20 minutes once a

week) and is making great progress in all areas. All in all, we're

much improved from a few months ago, even with a serious diagnosis.

I've been considering a trial run of the gfcf diet for Meg for a

couple of months, but have had trouble commiting. Meg doesn't have

GI problems except for some GERD, and besides the dark circles under

her eyes we've never notices any signs of allergy. But we did some

IgG allergy testing and just got the results back yesterday, and

guess what? Highly reactive (like off the charts) to all dairy/milk

products and moderately reactive to wheat, gliadin, gluten, smelt,

and almonds! I was blown away looking at those results - it

couldn't be clearer to me what I need to do now.

I know that there are a few people on this board who follow the gfcf

diet. Could someone please recommend a good gfcf multivitamin, as

well as a good gfcf calcium supplement (and any other supplement I

might need)? I'm trying to educate myself as quickly as possible on

these matters, but I'm also trying to remove dairy ASAP and would

appreciate any advice you can give me.

Thanks so much!

Kerri

[Guest guest]

Kerri,

Well, at least you found a probable reason for your childs speech

problems. Honestly, more should really look into this as being an

issue(I believe WAY MORE common than is realized)The GERD is clue

number one, or a reddish looking throat that food intolerances are at

play, that and constipation on its own, or bloated belly. Also keep

in mind if intolerance to dairy/wheat you might as well add soy to

the list. Chemically soy and dairy are almost identical in their

protein structure. So the best thing is to avoid soy as well at least

at the start, to save yourself backtracking. We went cold turkey from

day one, and had a few days of crankiness, but after those days were

behind us, we had major improvements in all areas, energy, muscle

tone, speech intelligibility and overall awareness. Motor skills were

improved immensly. A friends child toilet trained in 1 day after

removing wheat and dairy in her 3 year old.Here is a great starting

page, although on an autism website, it will give you tons of info,

name brands of store bought foods, etc., even a list of gf/cf candy,

cookies, etc.,

http://www.tacanow.com/dietinfo.htm

Good luck

>

> Hi All,

>

> I haven't been keeping up with this board for quite a while now.

> For those of you who remember me and my three-year-old daughter

Meg,

> here's a quick update. Previously, Meg's therapists had not been

> able to diagnose apraxia because she had a very limited vocabulary,

> but now they say they're certain she does. Not the best news, but

> it's good that we know for certain now. Since starting fish oils

> and carnaware, she's had an explosion in her vocabulary, and

> attempts to say just about everything. She has a great grasp of

> language, but terrible articulation and many speech errors,

> especially in long utterances. For example, she can say " Kate "

(her

> sister's name), but " Come here, Kate " would sound like " co ere

tate "

> (or she would say what's easier for her, " Come Baby! " . We love

> Meg's preschool, even though I'm not thrilled with the quality of

> therapy she receives there. She gets private therapy (speech 30

> minutes twice a week, OT 45 minutes once a week) as well as therapy

> at preschool (speech 20 minutes twice a week, OT 20 minutes once a

> week) and is making great progress in all areas. All in all, we're

> much improved from a few months ago, even with a serious diagnosis.

>

> I've been considering a trial run of the gfcf diet for Meg for a

> couple of months, but have had trouble commiting. Meg doesn't have

> GI problems except for some GERD, and besides the dark circles

under

> her eyes we've never notices any signs of allergy. But we did some

> IgG allergy testing and just got the results back yesterday, and

> guess what? Highly reactive (like off the charts) to all

dairy/milk

> products and moderately reactive to wheat, gliadin, gluten, smelt,

> and almonds! I was blown away looking at those results - it

> couldn't be clearer to me what I need to do now.

>

> I know that there are a few people on this board who follow the

gfcf

> diet. Could someone please recommend a good gfcf multivitamin, as

> well as a good gfcf calcium supplement (and any other supplement I

> might need)? I'm trying to educate myself as quickly as possible

on

> these matters, but I'm also trying to remove dairy ASAP and would

> appreciate any advice you can give me.

>

> Thanks so much!

>

> Kerri

>

[Guest guest]

" Reflux " is often a result of food allergy, particularly in the older kids

(ie typical in babies). I suspect the reflux will get much better if not go

away completely. Did your daughter react to soy? (Up to 30 % of dairy

intolerance also are allergic to soy). But soy is a great alternative for

calcium, baking etc. Great soy ice creams and the cheese does melt

(somewhat).

Rice and tapioca flour mixtures are best for cooking. (Unfortunately my son

developed a rice allergy soon after I got good at using these products).

These days you can find gluten-free flour in most regular stores like

Safeway, in addition to the health food stores. Bob's Redmill flours are

decent. You will need to learn how to read food labels as well. Milk and

gluten are in so many products. In fact gluten is used as a preservative -

so often not even on the label - although that is improving. Milk and gluten

are injected into cold cuts. Check out that thanksgiving turkey and you'd be

shocked at what is now on the label. Gluten is often a hidden ingredient in

spices (keeps it from clumping). Finally it is out of children's tylenol and

motrin. You even have to check toothpaste if your child is swallowing it.

(My son got sick from a visit to the dentist - my husband forgot to ask for

the gluten-free cleaner).

Rice milk is also a good alternative for calcium, but it lacks protein that

kids usually get from milk or soy, so need to make it up elsewhere. There

are some excellent gluten-free products on-line or in health food stores.

Check out

Celiac.com Store

New 24/7 Order Line: (800) 962-3026

or google celiac disease and you will come up with a bunch of them. When

you say your child is reacting to gluten...did they do a celiac panel? Is it

celiac disease? This is a very different issue than food intolerances that

might be outgrown, and you will want to connect with a good GI doctor or

allergist who deals with celiac disease. Many kids do not have classic

symptoms - but it takes its toll long-term, and the GF diet is really key to

a healthy life. Also if celiac - you might want other kids/family members

tested. (It occurs in 1/125 of european background - so very common). But

you want to get in to see someone with celiac experience before you go

gluten free since the testing is difficult once you've eliminated gluten.

Since you would need to follow a life-long course - you really need to find

out for sure. Your GI doc would probably want to also do endoscopy with a

biopsy if there are concerns for celiac. My son's allergies are due to

eosinophilic gastroenteritis - allergic gut basically, and not celiac...but

it took a bit of investigation to rule this out. Sometimes its hard to tell

the difference from celiac and food allergy if wheat is an allergen. But

they are not the same thing. Its also very difficult to put your child back

on gluten to make a diagnosis once on the gf diet - especially if it makes

them ill. So best to deal with it now. Removing dairy won't have an impact

on the diagnosis, so you can get started on that - but ask to see a

specialist. Chances are you general pediatrician does not know much about

celiac disease. (Most don't, and many kids go unrecognized).

Flinstones vitamins are actually gluten, dairy, soy etc free. For calcium

there are Calcium gummy bears (by Lil Critters). You can pick them up at

costco or go on-line and possibly order them.

The upside is that there are so many more products out there. This may seem

overwhelming at first, but it isn't that bad once you get used to it...and

everyone tends to eat healthier. Gluten is in most processed foods so they

get eliminated. -

[ ] Update - GFCF diet help?

Hi All,

I haven't been keeping up with this board for quite a while now.

For those of you who remember me and my three-year-old daughter Meg,

here's a quick update. Previously, Meg's therapists had not been

able to diagnose apraxia because she had a very limited vocabulary,

but now they say they're certain she does. Not the best news, but

it's good that we know for certain now. Since starting fish oils

and carnaware, she's had an explosion in her vocabulary, and

attempts to say just about everything. She has a great grasp of

language, but terrible articulation and many speech errors,

especially in long utterances. For example, she can say " Kate " (her

sister's name), but " Come here, Kate " would sound like " co ere tate "

(or she would say what's easier for her, " Come Baby! " . We love

Meg's preschool, even though I'm not thrilled with the quality of

therapy she receives there. She gets private therapy (speech 30

minutes twice a week, OT 45 minutes once a week) as well as therapy

at preschool (speech 20 minutes twice a week, OT 20 minutes once a

week) and is making great progress in all areas. All in all, we're

much improved from a few months ago, even with a serious diagnosis.

I've been considering a trial run of the gfcf diet for Meg for a

couple of months, but have had trouble commiting. Meg doesn't have

GI problems except for some GERD, and besides the dark circles under

her eyes we've never notices any signs of allergy. But we did some

IgG allergy testing and just got the results back yesterday, and

guess what? Highly reactive (like off the charts) to all dairy/milk

products and moderately reactive to wheat, gliadin, gluten, smelt,

and almonds! I was blown away looking at those results - it

couldn't be clearer to me what I need to do now.

I know that there are a few people on this board who follow the gfcf

diet. Could someone please recommend a good gfcf multivitamin, as

well as a good gfcf calcium supplement (and any other supplement I

might need)? I'm trying to educate myself as quickly as possible on

these matters, but I'm also trying to remove dairy ASAP and would

appreciate any advice you can give me.

Thanks so much!

Kerri

[Guest guest]

Thanks Myra,

I have read the book - it's Children with Starving Brains - and you

reminded me to pull it off the shelf again!

Kerri

>

> Kerri,

> If you haven't already purchased it...read the book the The

Starving

> Brains...I'm not sure if that's the accurate title, but it will

advise you

> how to go about this specific diet.

>

> Myra

[Guest guest]

Thanks for the info ,

Soy was also part of the test, and she had no reaction to it. (By

the way, the test is from York and has 96 foods - awesome!) But I

know I've heard that before, about most kids having problems with

both. The information that came with the test results says to try

not to rely too heavily on any new foods as replacements, because

then you can easily develop a sensitivity to those foods too. So I

was thinking about trying some soy yogurt just once every 3-4 days

to see how that goes. Do you think that's okay, or should I just

avoid it entirely?

Meg eats a LOT of dairy - drinks a few glasses of milk each day,

usually has a few pieces of cheese and a yogurt or two too. I'm

just confused about how to do dairy-free right. I want to make sure

she continues to get enough calcium and protein. Now the

gluten/wheat thing, I'm trying not to think about that for the time

being, except that I'm reading labels to make sure any new foods we

try will work on the gluten-free diet too! We're very much a

convenience food family (for no good reason, I'm just a little lazy

about it) so that will be HARD, HARD, HARD!

But what you say about toilet training should be enough to see us

through!

Kerri

[Guest guest]

,

Thanks for your response. Meg did grow out of her reflux - at least

that's what we thought, but she does wake up in the night and vomit

sometimes so maybe she's still being affected. As I said in my

response to , she was tested for soy and had no response, but

I'm hesitant to try too much. What do you think?

Meg hasn't been tested for celiac disease. I was the one who

ordered the 96-food IgG panel, because my doctor looked at me like I

was crazy when I asked if allergies could be causing her problems.

Her results stated that she had a moderate reaction to gluten,

gliadin, whole wheat, smelt, rye, and almonds and a high reaction to

all the dairy items (I think there were 9 of them). So I know that

means that she doesn't just have a problem with wheat but also all

the gluten-containing grains, like oats. Would this be indicative

of celiac disease? Would further testing be needed? I really hope

it's just an intolerance!

Funny, our Flintstones are NOT milk or wheat-free, but maybe because

they're the gummies. I'll have to check out the traditional ones at

the store. Thanks for the advice on the calcium supplement too!

Kerri

>

> " Reflux " is often a result of food allergy, particularly in the

older kids

> (ie typical in babies). I suspect the reflux will get much better

if not go

> away completely. Did your daughter react to soy? (Up to 30 % of

dairy

> intolerance also are allergic to soy). But soy is a great

alternative for

> calcium, baking etc. Great soy ice creams and the cheese does melt

> (somewhat).

>

> Rice and tapioca flour mixtures are best for cooking.

(Unfortunately my son

> developed a rice allergy soon after I got good at using these

products).

> These days you can find gluten-free flour in most regular stores

like

> Safeway, in addition to the health food stores. Bob's Redmill

flours are

> decent. You will need to learn how to read food labels as well.

Milk and

> gluten are in so many products. In fact gluten is used as a

preservative -

> so often not even on the label - although that is improving. Milk

and gluten

> are injected into cold cuts. Check out that thanksgiving turkey

and you'd be

> shocked at what is now on the label. Gluten is often a hidden

ingredient in

> spices (keeps it from clumping). Finally it is out of children's

tylenol and

> motrin. You even have to check toothpaste if your child is

swallowing it.

> (My son got sick from a visit to the dentist - my husband forgot

to ask for

> the gluten-free cleaner).

>

> Rice milk is also a good alternative for calcium, but it lacks

protein that

> kids usually get from milk or soy, so need to make it up

elsewhere. There

> are some excellent gluten-free products on-line or in health food

stores.

> Check out

>

> Celiac.com Store

> New 24/7 Order Line: (800) 962-3026

>

> or google celiac disease and you will come up with a bunch of

them. When

> you say your child is reacting to gluten...did they do a celiac

panel? Is it

> celiac disease? This is a very different issue than food

intolerances that

> might be outgrown, and you will want to connect with a good GI

doctor or

> allergist who deals with celiac disease. Many kids do not have

classic

> symptoms - but it takes its toll long-term, and the GF diet is

really key to

> a healthy life. Also if celiac - you might want other kids/family

members

> tested. (It occurs in 1/125 of european background - so very

common). But

> you want to get in to see someone with celiac experience before

you go

> gluten free since the testing is difficult once you've eliminated

gluten.

> Since you would need to follow a life-long course - you really

need to find

> out for sure. Your GI doc would probably want to also do

endoscopy with a

> biopsy if there are concerns for celiac. My son's allergies are

due to

> eosinophilic gastroenteritis - allergic gut basically, and not

celiac...but

> it took a bit of investigation to rule this out. Sometimes its

hard to tell

> the difference from celiac and food allergy if wheat is an

allergen. But

> they are not the same thing. Its also very difficult to put your

child back

> on gluten to make a diagnosis once on the gf diet - especially if

it makes

> them ill. So best to deal with it now. Removing dairy won't have

an impact

> on the diagnosis, so you can get started on that - but ask to see a

> specialist. Chances are you general pediatrician does not know

much about

> celiac disease. (Most don't, and many kids go unrecognized).

>

> Flinstones vitamins are actually gluten, dairy, soy etc free. For

calcium

> there are Calcium gummy bears (by Lil Critters). You can pick

them up at

> costco or go on-line and possibly order them.

>

> The upside is that there are so many more products out there. This

may seem

> overwhelming at first, but it isn't that bad once you get used to

it...and

> everyone tends to eat healthier. Gluten is in most processed foods

so they

> get eliminated. -

>

>

> [ ] Update - GFCF diet help?

>

>

> Hi All,

>

> I haven't been keeping up with this board for quite a while now.

> For those of you who remember me and my three-year-old daughter

Meg,

> here's a quick update. Previously, Meg's therapists had not been

> able to diagnose apraxia because she had a very limited vocabulary,

> but now they say they're certain she does. Not the best news, but

> it's good that we know for certain now. Since starting fish oils

> and carnaware, she's had an explosion in her vocabulary, and

> attempts to say just about everything. She has a great grasp of

> language, but terrible articulation and many speech errors,

> especially in long utterances. For example, she can say " Kate "

(her

> sister's name), but " Come here, Kate " would sound like " co ere

tate "

> (or she would say what's easier for her, " Come Baby! " . We love

> Meg's preschool, even though I'm not thrilled with the quality of

> therapy she receives there. She gets private therapy (speech 30

> minutes twice a week, OT 45 minutes once a week) as well as therapy

> at preschool (speech 20 minutes twice a week, OT 20 minutes once a

> week) and is making great progress in all areas. All in all, we're

> much improved from a few months ago, even with a serious diagnosis.

>

> I've been considering a trial run of the gfcf diet for Meg for a

> couple of months, but have had trouble commiting. Meg doesn't have

> GI problems except for some GERD, and besides the dark circles

under

> her eyes we've never notices any signs of allergy. But we did some

> IgG allergy testing and just got the results back yesterday, and

> guess what? Highly reactive (like off the charts) to all

dairy/milk

> products and moderately reactive to wheat, gliadin, gluten, smelt,

> and almonds! I was blown away looking at those results - it

> couldn't be clearer to me what I need to do now.

>

> I know that there are a few people on this board who follow the

gfcf

> diet. Could someone please recommend a good gfcf multivitamin, as

> well as a good gfcf calcium supplement (and any other supplement I

> might need)? I'm trying to educate myself as quickly as possible

on

> these matters, but I'm also trying to remove dairy ASAP and would

> appreciate any advice you can give me.

>

> Thanks so much!

>

> Kerri

>

>

>

>

>

>

>

>

>

[Guest guest]

Kerri,

As far as soy is concerned, I would be careful of it, first off, soy

is not a great replacement, many studies over the past few years on

how it interupts endocirne function in children, more so in boys I

believe than girls, so just an FYI. Dairy in an gf/cf diet also means

casein, as that is the protein that is the problem, so reading labels

and familiarizing yourself of the MANY hidden psuedonyms for casein,

will keep you from going nuts. I will see if I have the

casein " other " names it goes by list in my files, there are many.Here

is a page on soy and casein:

http://www.newstarget.com/003217.html

As far as calcium, , she will get enough calcium if you can get

vegetables that have a high content, broccoli,etc., almonds are a

good source of calcium, and perhaps a multi with some calcium. A

child 1-3 needs 500mg and 3-8 is 800mg I believe. One cup of milk has

about 400mg , so she was getting plenty of calcium before, one cup of

calcium fortified orange juice is 300mg.

Protein requirements are not that high for a child,and are easily

met,

0.5 grams of protein per pound of body weight.

1 chicken drumstick has about 14 grams of protein, each ounce of

lean meat contains 7 grams of protein.

The best advice I could give, is do not try to replace a food item

with a food item as the allowed version will not taste the same, and

initially the tastes are so ingrained in their minds, that it makes

it harder to transition. There is an almond " milk " that is chocolate

flavored, if she is allowed chocolate that is decent, Almond breeze I

believe the name is.

http://www.bluediamond.com/retail/breeze/index.cfm

Your best bet for food is Whole Foods market, they have a huge

selection of what you need. For the start, find one or two breakfast

items she will eat, same for lunch, and dinner is the easiest. As her

taste buds change, then you can add more. There are some great

tasting kid friendly foods out there, it just takes some time, and

label reading. Overwhelming at first, but when you see the IMMEDIATE

(I mean within a few days) improvement in all areas, it keeps you

going looking for more improvements.

Breakfast Cereal brands that are good(kid friendly)

Enviro Kids, (some are gluten/casein free, some are not)

Erewhon Rice Twice jsut like rice crispies

' All natural breakfast sausage (yes the one from way back when)

Whole foods has gf/cf preservative free/nitrate free hot dogs/buns,

bacon,

They carry a bread crumbs for cutlets called Gillians, a ton of gf/cf

baking products, pancake/wafffle flour mixes. So just from the list

above, you could get started. Vans makes a toaster waffle, does have

soy in it, probably minimal in amount. Stick with the pure maple

syrup, less garbage in it like the cheap stuff. Corn syrup/high

fructose corn syrup has a ton of sulfites in it, that is also very

neuro stimulating to young brains, so another tidbit of info to keep

an eye out on food labels. Good luck its a piece of cake(excuse the

pun)

>

> Thanks for the info ,

>

> Soy was also part of the test, and she had no reaction to it. (By

> the way, the test is from York and has 96 foods - awesome!) But I

> know I've heard that before, about most kids having problems with

> both. The information that came with the test results says to try

> not to rely too heavily on any new foods as replacements, because

> then you can easily develop a sensitivity to those foods too. So I

> was thinking about trying some soy yogurt just once every 3-4 days

> to see how that goes. Do you think that's okay, or should I just

> avoid it entirely?

>

> Meg eats a LOT of dairy - drinks a few glasses of milk each day,

> usually has a few pieces of cheese and a yogurt or two too. I'm

> just confused about how to do dairy-free right. I want to make

sure

> she continues to get enough calcium and protein. Now the

> gluten/wheat thing, I'm trying not to think about that for the time

> being, except that I'm reading labels to make sure any new foods we

> try will work on the gluten-free diet too! We're very much a

> convenience food family (for no good reason, I'm just a little lazy

> about it) so that will be HARD, HARD, HARD!

>

> But what you say about toilet training should be enough to see us

> through!

>

> Kerri

>

[Guest guest]

Even for people with celiac disease, the disease has to be fairly

advanced in order to have a positive biopsy result. The biopsy is

looking for flattened villi, and by the time your villi are flat, you

will have other health problems as a result of long-term malabsorption

of nutrients. If your child reacts to a lot of gluten containing foods

on a food panel and you want to feed gluten, I would recommend getting

a genetic test to see if your child has a predisposition to celiac or

gluten intolerance. I believe EnteroLabs does a full celiac panel that

produces pretty reliable results without a biopsy.

We saw great improvement when we took our children, particularly our 3

year old, off gluten and dairy. Even if your child is " only " gluten

intolerant, consuming gluten is harmful. celiac.com is a helpful website.

[Guest guest]

Just catching myself up on this thread...

Thank you all for your help and suggestions. I did make an

appointment for both my girls with an allergist for the beginning of

February, and I will ask him to run a celiac panel on Meg. We're

doing pretty well so far...this is the first totally casein-free day

for the girls, and my husband and I are almost there too (just

finishing off the expensive food items). I think that we'll wait

until after the allergist appointment (Feb 8th) to remove gluten so

that we can get a good celiac panel.

Went to Whole Foods yesterday to get some trials of new GFCF foods

and supplements. Unfortunately, Meg has hated 3 out of 4 of the new

things we've tried - but her sister has scarfed down her own plus

her sister's, so at least we have one fan! Meg has major issues

with food texture (I don't blame her, I have to admit that I do too)

and I think it may take us awhile to find the right new foods. By

the way, I decided that Meg definitely needs a supplement for

calcium! Looking at the list you have below, she is not supposed to

have almonds (IgG reaction), orange juice irritates her reflux, and

she hasn't consumed a vegetable since babyfood jars. So alas, we

will have to rely on fortified white grape juice, small amounts of

rice milk, and the Yummi Bears calcium supplement I found at Whole

Foods (which both of the girls have already fallen in love with!).

I decided NOT to use soy as a replacement, but to allow foods with

small amounts of soy in them. I also picked up a probiotic and was

thinking about starting them on a VERY SMALL amount of it - like one

quarter of the recommended dose (1/8 tsp). Meg in particular has

had yeast diaper issues, and consuming 2 yogurts a day was keeping

the problem at bay. Do you all think this is okay? Maybe I should

wait to ask her doctor, but then again he had somewhat of a problem

with me using fish oils for her and will certainly not be supportive

of the new diet.

Well, thanks again everyone!

Kerri