Re: Is it possible to only be sensitive to the casein??

[Guest guest]

Hi Trina,

My daughter is the same way. Dr. Goldberg has allowed gluten in her

diet but no " whole'' unprocessed grains. She eats white bread, tortillas,

etc. She stays away from Whole wheat, rye, etc. Even brown rice is a " NO

NO " . She does extremely well with this diet and did worse when these items

were removed for a time

Tina

[Guest guest]

Hello,I just wanted to remark on your question.Cody my son who is 7yrs old

has been on a gluten-free diet for 2yrs.We saw very good results within a

couple of weeks.We do have celiacs disease in our family so naturally I

thought it could be this.Anyway there a noticable differances when he gets

gluten not only behavior wise but also physical symtoms,the norms are

unprossessed food in stool,upper GI symtoms vomiting, balching and gas.This

is the weird part he gets itchy blistery rashes . Any way the family member

with celiac said this was very normal its called dematitis herpaformis-it

looks chicken pox but its is not contagous.Every child is differant maybe it

is just the casein for your child.I thought it was just the gluten with

Cody,but Monday he is going on milk free for a month and we will see how it

goes.Take care

[Guest guest]

I had my son off of gluten for 18 months. We did not notice any changes

when we reintroduced gluten, except oats seemed to make him a bit spacey.

He has been off of casein for 5 years. We saw a few improvements when

taking our son off of dairy, mostly because he was so much healthier and

his ear infections went away.

Loretta

On Thu, 20 Jan 2000 10:07:42 -0600 " Montgomery " <mont@...>

writes:

>From: " Montgomery " <mont@...>

>

>Hi again,

>

>Sorry, but I tend to ask lots of questions in spurts. Here is another

>one.

>

>This is concerning the GF/CF diet. My son has been casein free for

>over three years. I saw an immediate improvement when we did that.

>Not so dramatic that he was cured, but yet still an improvement. He

>did not go gluten free until Oct of 98. We stayed on the GF diet for

>over a year. I must admit that I never saw any change in him with the

>switch. He has never been the diarrhea type. He does have some weird

>looking stools (some undigested food present), but not the diarrhea

>mentioned by others. I attributed this undigested food appearance to

>the fact that he chews with his front teeth due to sensory issues and

>it just didn't get processed well enough. Anyway, over Christmas we

>decided to try to reintroduce the gluten some. Again, no change was

>noticed. If anything, he is a little bit more talkative. He also may

>be a little bit more stimmy. Is he more talkative because he is high

>on opiates from the gluten?? Or is it really possible that he really

>is not affected by the gluten and is only affected by the casein??

>

>Anyone else feel their child is like this too?? I keep reading these

>testimonials of people who take their child off gluten and see

>dramatic results immediately. I do not know what to do.

>

>Trina

>

>

>

[Guest guest]

Trina,

I don't know if this helps but our experience with our son like this.

He's been on a GF diet for about 1 year and CF for about 9 months. This

Christmas he got his hands on and ate some pasta. For about 2 weeks after we

have had sleepless nights and temper tantrums (similar to a year ago). Now

he seems to have de-toxed and is sleeping as he was, prior to the gluten

feed.

A theory

We live in the UK and have had his urine tested by Wakefield at

Sunderland University. He showed the typical markers for peptides in his

system. It is my understanding that if we tested our family we would find

similar pattern in some of us. Perhaps by reducing these peaks with the diet

we are making their world more tolerable. We watch his behaviour and have

noted that even a GF CF food like peanut butter will kick him off so really

we belong in the try it and see camp.

But to answer your question more accurately we think that a CF diet has

little effect on our son but... we have a lack of conviction in this to put

this food category back in.

We are seeing an immunologist next week we hope this will give us some

clues.

I hope this helps. Any advice from anybody in a similar vein would be

appreciated.

Good luck and God bless.

Franco

[Guest guest]

My experience with your traditionally trained immunologists so far (after

dealing with this for 5 years) is that if they don't see a classic " allergic "

reaction, they don't think a food or other allergen is a problem for your

child. But maybe there is an enlightened allergist out there...

[Guest guest]

My son's allergist checked him for food allergies but he came up negative for

gluten and casein, but told me if I could see a difference when he was on the

diet to continue it and he has been very supportive.

Re: Is it possible to only be sensitive to the casein??

From: Kkscharste@...

My experience with your traditionally trained immunologists so far (after

dealing with this for 5 years) is that if they don't see a classic

" allergic "

reaction, they don't think a food or other allergen is a problem for your

child. But maybe there is an enlightened allergist out there...

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[Guest guest]

We took my daughter completely off casein and gluten for 6 months. We saw no

improvement. We know from allergy testing that she is highly allergic to

milk, so we have stuck with the casein-free diet, which hasn't been too hard

for her. We have re-introduced wheat products slowly with no change in her

behavior. Maybe she is one of the kids that may improve slightly with diet,

but it is not a dramatic difference, just like you are seeing with your son.

We saw a much more dramatic difference when we were able to get more protein

in her diet. We started her on a protein shake 3 times a day. Shortly after

we started this, she was calmer and more aware of her surrondings and,

unbelievably, actually hungry! At the time we started the protein, she was

about 25 pounds. Now, about 10 months later, she is about 40 pounds - she

is so much healthier.

Hope this helps.

Bonnie

[Guest guest]

Franco,

You're remark about peanut butter caught my eye - your child may well show

immune allergic responses as may a number of other foods - like they do in

our son Chris. The gluten/casein problem seems to operate at two levels -

one in the formation of peptides through incomplete metabolism of these

proteins, and the other in an immune allergy response (beef and lamb can do

this as can peanuts, but not hazlenuts, almonds, turkey, chicken or fish as

in Chris's case). Immune allergy responses keep the immune system fired up

and also contribute to adverse behaviour we think.

all the best,

Re: Is it possible to only be sensitive to the casein??

From: " Franco Cargius " <franco.fiona@...>

Trina,

I don't know if this helps but our experience with our son like this.

He's been on a GF diet for about 1 year and CF for about 9 months. This

Christmas he got his hands on and ate some pasta. For about 2 weeks after we

have had sleepless nights and temper tantrums (similar to a year ago). Now

he seems to have de-toxed and is sleeping as he was, prior to the gluten

feed.

A theory

We live in the UK and have had his urine tested by Wakefield at

Sunderland University. He showed the typical markers for peptides in his

system. It is my understanding that if we tested our family we would find

similar pattern in some of us. Perhaps by reducing these peaks with the diet

we are making their world more tolerable. We watch his behaviour and have

noted that even a GF CF food like peanut butter will kick him off so really

we belong in the try it and see camp.

But to answer your question more accurately we think that a CF diet has

little effect on our son but... we have a lack of conviction in this to put

this food category back in.

We are seeing an immunologist next week we hope this will give us some

clues.

I hope this helps. Any advice from anybody in a similar vein would be

appreciated.

Good luck and God bless.

Franco

---------------------------

[Guest guest]

There are. There is an entire academy of environmental allergists and a few

in every state. Two of the best known are Sherry , MD, Doris Rapp, MD.

both have websites. I went to Dr. Rapp and what she does is great but you

have to take it a step further for some children and treat the immune system.

that is why we go to Dr. Goldberg. Kathy

[Guest guest]

Immune reactions are not static they are dynamic. Food and other allergen

response could well change as the erratic immune system fluctuates. this is a

well known dynamic in allergy. We say " grew out of his milk allergy but

he is now allergic to wheat. " We have to constantly monitor our children's

responses to allergens because they may not necessarily remain the same. This

is true whether you have a spectrum disorder or not. Kathy

[Guest guest]

<Or is it really possible that he really is not affected by the gluten and is

only affected by the casein??>

Trina,

It's possible that casein is your son's only problem. A fellow on GFCFKids as a

site that discusses in detail his positive

experience with gluten and casein removal. His experience is that it takes 1-2

months to see a gluten-caused regression. Click his

site: www.advimoss.no/GFCF_results.htm

Our daughter did dramatically improve (hyperactivity, 'brain icky-ness') when

gluten grains were removed. She ate about six graham

crackers this summer and I saw no effect (after being gluten-free for over 2

years).

Digestive enzymes have helped my daughter's stool formation and I assume her

absorption a lot. Her appetite and willingness to eat

protein (little tender meat balls) improved significantly. Have you tried any?

K.