Re: Help-getting worse not better

[Guest guest]

Try taking him off whole grains, just use the cheap fluffy white bread. Try

taking him off nut stuff too.

Tina M. Hendrix

Cure2000@...

Vice-President, California Coalition

Neuro-Immune Dysfunction Syndromes

Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,

etc.

[Guest guest]

Welcome, Otilia!

Great to see you on here! Hope you get lots of respnses to help you out.

See ya soon.

tina

Tina M. Hendrix

Cure2000@...

Vice-President, California Coalition

Neuro-Immune Dysfunction Syndromes

Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,

etc.

[Guest guest]

Hi

My son has done better when we took off the dairy but did not see a

difference with gluten. I basically don't give him anything that has the

word whole in front of it. He eats 2 slices of white bread a day with

cashew butter on it or an egg. We also use pita bread to make fahitas

with chicken and steak.

Mercy

otilia95404 wrote:

>Hello,

>

>My son is 3 years and 10 months old. We have recently been

>introduced to and have been on a Gluten free/Casein free

>diet for about 4 months. My husband and I noticed a great

>change when we took out the dairy but no change when we took

>out the gluten. We have been consutling with a doctor that

>follows the DAN protocol and have yet to see anything positive

>take place. We have uncovered a lot of abnormalities but not

>helped him significantly. I am on the waitting list to see Dr. G but

>feel like time is slipping by. Today was very agressive

>with his brothers. I noticed that he bit himself when he was mad

>(never happened before today). I have scheduled an

>appointment with Dr. Griffiths (works with Dr. G) and will see her

>next month. Our DAN doc suggested IVGG because of my sons

>immune difficency. Any input? Sorry for the typos, its late and I've

>had it.

>

>Thanks for any help.

>

>

>

>

>Responsibility for the content of this message lies strictly with

>the original author, and is not necessarily endorsed by or the

>opinion of the Research Institute.

>

>

>

[Guest guest]

My son also regressed on the GFCF diet. I have heard Dr. G theorize that

this is due to the whole grains used to replace the wheat. Dr. G recommends

NO whole wheat nor whole grains. Common, cheap white bread is the right

choice with these kids because the wheat has been processed down to nothing.

Good luck,

[Guest guest]

Otilia,

We use Mocha Mix (non-dairy coffee creamer). Tastes great and doesn't offend

our system.

Tina

Tina M. Hendrix

Cure2000@...

Vice-President, California Coalition

Neuro-Immune Dysfunction Syndromes

Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,

etc.

[Guest guest]

I can only give you our experience:

> My son is 3 years and 10 months old. We have recently been

> introduced to and have been on a Gluten free/Casein free

> diet for about 4 months. My husband and I noticed a great

> change when we took out the dairy

We really noticed the removal of casein- in the form of

suddenly talking in sentence and no more ear infection.

We still had other issues (medical) which is why we went to

gluten removal. Of course, our cultural background has a high

rate of lactose intolerance and I , myself, am allergic to

milk so this was logical.

>but no change when we took

> out the gluten.

My first question would be

a.) how gluten free is gluten free? I ask because we

didn't fully remove gluten (ie, gluten in soy sauce,

gluten in soy milk or rice dream, gluten in...) until

much later. It was after 6 months of very very very strict

GF removal that we finally convinced ourselves. How? He

had a gluten cheat. He had bowel issues right away and had

weird stimmy kind of behaviors. It wasn't a " sudden " awakening

upon removal of gluten but a very slow and very gradual thing

that happened over a long period of time (he gained 8lbs in

the first year of gluten removal- not bad for a child who

gained NO weight between 3-4 and lost half a pound during

preschool!) For us, processed versus

whole wheat is not the issue- gluten is. I somewhat suspect

that our child was and is a celiac child. We never did the

biopsy but the weight gain and bowel issues and the low iron

levels should have been warning signs to pediatricians.

Over the course of the year of very strict gluten removal, his

eczema also cleared. By the time I learned about celiacs, our

child had already been very strictly gluten free so any test

would not have uncovered celiacs.

2. ) my second question is how long have you been at it?

I have been told that for some children (no scientific proof

on this one for me to give you) gluten removal must be

strict and over a period of up to 6 months. Some parents claim

that there is a withdrawal period where the child will regress

behaviorally. We didn't experience this but others say that

they have seen it.

If you have any other questions, please feel free to email

me privately. I don't mind sharing what we do.

[Guest guest]

Hi!

I have two kids who are GFCF. My first one showed huge withdrawl signs

for the first five days but made significant improvement after that.

After about a year the eczema began to return and at Dr. Goldberg's

insistence, we also started watching the whole grains. Needless to say,

being gluten and whole grain free is a challenge, but the eczema did

disappear again. I have found one cereal and a few bread mixes that meet

these criteria, so I bake alot for him. If you want the titles to the

recipe books or the names of the cereal and breads, let me know. My

third child is also GFCF and didn't show any immediate behavioral

improvement but the diahrea stopped and she began to gain weight. I

truly believe she is celiac (but I'm not willing to do the biopsy to

prove it - the diet is working just fine and the food is already in the

house). Before giving up on the gluten free diet you might want to be

really sure you are totally gluten free. It took me about 5 months to

completely remove it from my son's diet and we still goof up every now

and then. The website gfcfdiet.com has been wonderful for me. After you

are convinced that gluten free isn't making a difference you can set up a

challenge. If nothing happens then your child may not have a gluten

issue (my second child doesn't). The whole grains definately cause

problems for all three of my kids, so watch those like Dr. Goldberg

suggests (I would imagine he'll say the same thing when you meet with him

- I'm a firm believer in gluten free for my kids but he has had us

challenge it because he has seen most kids do fine with just whole grain

free - that wasn't a healthy week for my kids...).

Hope this helps. Keep us posted on how your son is doing.

On Fri, 28 Dec 2001 06:05:18 -0000 " otilia95404 "

<otiliasullivan@...> writes:

> Hello,

>

> My son is 3 years and 10 months old. We have recently been

> introduced to and have been on a Gluten free/Casein free

> diet for about 4 months. My husband and I noticed a great

> change when we took out the dairy but no change when we took

> out the gluten. We have been consutling with a doctor that

> follows the DAN protocol and have yet to see anything positive

> take place. We have uncovered a lot of abnormalities but not

> helped him significantly. I am on the waitting list to see Dr. G

> but

> feel like time is slipping by. Today was very agressive

> with his brothers. I noticed that he bit himself when he was mad

> (never happened before today). I have scheduled an

> appointment with Dr. Griffiths (works with Dr. G) and will see her

> next month. Our DAN doc suggested IVGG because of my sons

> immune difficency. Any input? Sorry for the typos, its late and

> I've

> had it.

>

> Thanks for any help.

>

>

>

>

[Guest guest]

I'm not really sure what the norm is, but my kids react immediately -

their eyes look sick (red, puffy, glossy) and their eczema behind their

ears shows up within a few days. When I put my second child on the GFCF

diet her behavior became worse and she improved when we added gluten

back. I'm glad your son is doing better! It just goes to show that they

are all so different... I'm jealous that you can go back to a regular

diet I did start my GFCF kids with Cheerios, and Dr. Goldberg said

that may have been too much and to try regular white bread. We are at a

good point now in the treatment and I hate to upset anything - maybe next

summer I'll try again. I'm glad it worked out for you, though!

On Sun, 30 Dec 2001 21:23:03 -0800 Otilia Sullivan

<OtiliaSullivan@...> writes:

> ,

>

> We have been totally gluten free for 4 months. I have removed

> everything

> from my son's diet. We even worked with a consultant that helped

> us

> discover hidden gluten. What was interesting is that I took my son

> off of

> Almond milk per the suggestion of one of the other parents on the

> list

> and his behavior improved. I also let him have breaded chicken

> strips one

> day that were made with white bread crumbs. That child ate like I

> had not

> been him eat in years. I have to tell you it brought tears to my

> eyes. The

> next day he did great and his bowls have been fine. He is talking

> more and

> happier. Finally he go some protien in his body. How soon would I

> see a

> negative reaction if gluten was a problem?

>

> Re: Help-getting worse not better

>

> Hi!

> I have two kids who are GFCF. My first one showed huge withdrawl

> signs

> for the first five days but made significant improvement after that.

>

> After about a year the eczema began to return and at Dr. Goldberg's

> insistence, we also started watching the whole grains. Needless to

> say,

> being gluten and whole grain free is a challenge, but the eczema

> did

> disappear again. I have found one cereal and a few bread mixes

> that

> meet

> these criteria, so I bake alot for him. If you want the titles to

> the

> recipe books or the names of the cereal and breads, let me know.

> My

> third child is also GFCF and didn't show any immediate behavioral

> improvement but the diahrea stopped and she began to gain weight.

> I

> truly believe she is celiac (but I'm not willing to do the biopsy

> to

> prove it - the diet is working just fine and the food is already in

> the

> house). Before giving up on the gluten free diet you might want to

> be

> really sure you are totally gluten free. It took me about 5 months

> to

> completely remove it from my son's diet and we still goof up every

> now

> and then. The website gfcfdiet.com has been wonderful for me.

> After

> you

> are convinced that gluten free isn't making a difference you can set

> up

> a

> challenge. If nothing happens then your child may not have a

> gluten

> issue (my second child doesn't). The whole grains definately cause

> problems for all three of my kids, so watch those like Dr. Goldberg

> suggests (I would imagine he'll say the same thing when you meet

> with

> him

> - I'm a firm believer in gluten free for my kids but he has had us

> challenge it because he has seen most kids do fine with just whole

> grain

> free - that wasn't a healthy week for my kids...).

> Hope this helps. Keep us posted on how your son is doing.

>

>

>

>

> On Fri, 28 Dec 2001 06:05:18 -0000 " otilia95404 "

> <otiliasullivan@...> writes:

> > Hello,

> >

> > My son is 3 years and 10 months old. We have recently been

> > introduced to and have been on a Gluten free/Casein free

> > diet for about 4 months. My husband and I noticed a great

> > change when we took out the dairy but no change when we took

> > out the gluten. We have been consutling with a doctor that

> > follows the DAN protocol and have yet to see anything positive

> > take place. We have uncovered a lot of abnormalities but not

> > helped him significantly. I am on the waitting list to see Dr. G

>

> > but

> > feel like time is slipping by. Today was very agressive

> > with his brothers. I noticed that he bit himself when he was mad

>

> > (never happened before today). I have scheduled an

> > appointment with Dr. Griffiths (works with Dr. G) and will see her

>

> > next month. Our DAN doc suggested IVGG because of my sons

> > immune difficency. Any input? Sorry for the typos, its late and

>

> > I've

> > had it.

> >

> > Thanks for any help.

> >

> >

> >

> >

[Guest guest]

In a message dated 12/31/01 4:22:35 PM Pacific Standard Time,

pappadia@... writes:

> How soon would I

> > see a

> > negative reaction if gluten was a problem?

>

We recently tried a gluten challenge with our 4yo daughter. It took about six

weeks to see really negative effects, though she was slowly becoming more

aggressive over the course of the challenge.

Things started extremely well; she was much more focused and happier to start

with.

Margaret