Re: Made Worse by the Diet

[Guest guest]

,

Wow, you sound really scared. Do you have a DAN Dr.? It does sound like

the diet has uncovered another issue. Have you done any of the testing and

is your son on any supplements?

I don't think you have hurt your son by putting him on the diet, I just

think you may be getting closer to some answers.

Jenn

Made Worse by the Diet

Has anyone known of a child who became worse since being on the diet?

I am starting to think I have only hurt my son by putting him on the GFCF

diet.

My son was on an upward climb before he began the diet. He was making gains

in every way, language and socially before the diet.

The reason I wanted to try this diet for him was because of his stimming

behaviors and his attention problems. They have not improved AT ALL since

starting this diet 3 months ago. In fact, some of his behaviors have even

worsened and some have surfaced that were never there to begin with!

I am really confused and scared right now and don't know what to do. I can

honestly say that my son has made NO gains since starting this diet. He has

been on a constant gradual recovery since first starting ABA when he was 4

1/2 (he is now going on 8). This is not to say that since being on the diet

he hasn't taken steps forward, but as I said, he has been taking steps

forward SINCE I have begun trying to recover him.

BUT since being on the diet, he has done MANY things to frighten me with his

behavior. Things he never did before! For example, he has had problems

with rolling his eyes back in a very odd and frightening way. Now he has a

weird almost facial tic that he does - imagine having an itch on your nose

and you can't scratch it so you pull your jaw down and stretch out your face

and look up into the air. He does these things and more. I have yet to

figure out a pattern or connect it with any food, etc.

I am at my wits end. I am so frustrated and confused and don't know where

to turn.

Should I give him gluten and casein and see if it causes worse reactions

then we are all ready seeing?

Could it be that because of the diet change, I am worsening some underlying

problem that is causing the behaviors? Could the diet have brought on

Tourettes or God knows what?

Please help, you people are my only hope of helping my son!!

[Guest guest]

My guess would be to reintroduce gluten. I have heard this a few times and

the reintroduction of gluten improved them. I would NOT reintroduce casein,

ever. Human bodies do not need cow products. Try a challenge, give him

dairy free toast or cereal with CF milk and see what happens. The other

theory would be to have his food allergies tested and make sure he is off

all salicylates, dyes and preservatives. Sorry I don't have a scientific

answer but I have seen this a few times and putting the gluten back in

helped.

Holly

----- Original Message -----

> Has anyone known of a child who became worse since being on the diet?

>

> I am starting to think I have only hurt my son by putting him on the GFCF

diet.

>

> My son was on an upward climb before he began the diet. He was making

gains in every way, language and socially before the diet.

>

> The reason I wanted to try this diet for him was because of his stimming

behaviors and his attention problems. They have not improved AT ALL since

starting this diet 3 months ago. In fact, some of his behaviors have even

worsened and some have surfaced that were never there to begin with!

>

> I am really confused and scared right now and don't know what to do. I

can honestly say that my son has made NO gains since starting this diet. He

has been on a constant gradual recovery since first starting ABA when he was

4 1/2 (he is now going on 8). This is not to say that since being on the

diet he hasn't taken steps forward, but as I said, he has been taking steps

forward SINCE I have begun trying to recover him.

>

> BUT since being on the diet, he has done MANY things to frighten me with

his behavior. Things he never did before! For example, he has had problems

with rolling his eyes back in a very odd and frightening way. Now he has a

weird almost facial tic that he does - imagine having an itch on your nose

and you can't scratch it so you pull your jaw down and stretch out your face

and look up into the air. He does these things and more. I have yet to

figure out a pattern or connect it with any food, etc.

>

> I am at my wits end. I am so frustrated and confused and don't know where

to turn.

>

> Should I give him gluten and casein and see if it causes worse reactions

then we are all ready seeing?

>

> Could it be that because of the diet change, I am worsening some

underlying problem that is causing the behaviors? Could the diet have

brought on Tourettes or God knows what?

>

> Please help, you people are my only hope of helping my son!!

>

>

>

[Guest guest]

Try giving her some TUMS. They're a good tasting calcium supplement and

are GF/CF.

Jo (South Carolina)

[Guest guest]

Try giving her some TUMS. They're a good tasting calcium supplement and

are GF/CF.

Jo (South Carolina)

[Guest guest]

Try giving her some TUMS. They're a good tasting calcium supplement and

are GF/CF.

Jo (South Carolina)

[Guest guest]

,

the face thing you describe sounds familiar, I taped my daughter at 13-15

months when she was opening her mouth, her head would tilt side ways and her

shoulder would raise, she would shake, like when you tighten your muscles

really hard. Resembling a tourettes tick, she had no control and acted like

she didnt know it happened. It lasted about 3-5 seconds, she would do that

about 5 times and be done for awhile. I recorded it but taped over it after

the ped told me it was " nothing " (what I would do to have it back!!!)

During this time she had an undetected rectal strep infection (she took 4

rounds of antibiotics to fix it)

The tics appeared suddenly and over the course of a month or so disappeared

gradually.

MONTHS later i did a lot of research when she got worse and found some

interesting info. Step is just one bacteria, imagine how many others have

not been studied. untreated strep infections can cause P.A.N.D.A.S. This is

the link to the PANDAS site

http://intramural.nimh.nih.gov/research/pdn/web.htm

PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric

Disorders Associated with Steptococcal Infections. The term is used to

describe a subset of children who have Obsessive Compulsive Disorder(OCD)

and/or tic disorders such as Tourette's Syndrome, and in whom symptoms

worsen following strep. infections such as " Strep throat " ...

I also saw a link to a theory (although not studied) about strep and autism,

I can not seem to find it right now, will post it if I do.

I would think if it were the diet alone, more people would post with similar

experience. Keep searching and many prayers

[Guest guest]

,

the face thing you describe sounds familiar, I taped my daughter at 13-15

months when she was opening her mouth, her head would tilt side ways and her

shoulder would raise, she would shake, like when you tighten your muscles

really hard. Resembling a tourettes tick, she had no control and acted like

she didnt know it happened. It lasted about 3-5 seconds, she would do that

about 5 times and be done for awhile. I recorded it but taped over it after

the ped told me it was " nothing " (what I would do to have it back!!!)

During this time she had an undetected rectal strep infection (she took 4

rounds of antibiotics to fix it)

The tics appeared suddenly and over the course of a month or so disappeared

gradually.

MONTHS later i did a lot of research when she got worse and found some

interesting info. Step is just one bacteria, imagine how many others have

not been studied. untreated strep infections can cause P.A.N.D.A.S. This is

the link to the PANDAS site

http://intramural.nimh.nih.gov/research/pdn/web.htm

PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric

Disorders Associated with Steptococcal Infections. The term is used to

describe a subset of children who have Obsessive Compulsive Disorder(OCD)

and/or tic disorders such as Tourette's Syndrome, and in whom symptoms

worsen following strep. infections such as " Strep throat " ...

I also saw a link to a theory (although not studied) about strep and autism,

I can not seem to find it right now, will post it if I do.

I would think if it were the diet alone, more people would post with similar

experience. Keep searching and many prayers

[Guest guest]

Hi ,

I remember that you were looking into the yeast issue, but I have no idea

how much other food you have eliminated in addition to the gluten and the

casein. I can't imagine that adding back gluten would really help. It

might mask what ever problems have been surfacing, but I don't think it

would be a true solution to the problem. (Holly--can you explain the gluten

reintroduction thing?) Since gluten is not some important vitamin or

mineral, why would the body need it for anything? Entire cultures exist

without gluten. In fact, they are the cultures that have virtually no

schizophrenia in their population. When the gluten is introduced, the

schizophrenia rates rise.

However, if you see no effect (positive or negative) from the diet, then you

may want to reintroduce the gluten, just because it is so hard to maintain a

gluten free diet. But you are seeing troubling things, which would mean to

me that there is more yet to uncover. (as others have previously posted.)

Things that have been a disaster for my son have been: high yeast, sorbitol,

certain berry flavored suppliments, chocolate, apples, bananas, citrus

fruits, the partially hydrogenated oils in snacks--like the ener-G

pretzles, Almond Breeze, and soy and corn (to a lesser extent). But even if

you have a really clean diet, if there is a big yeast issue, along with

possibly parasites and bacteria, you've got a ton of toxins in his system

that could be causing all sorts of problems.

I wouldn't say that the diet has worsened some underlying problems, but

rather that the diet has revealed an underlying problem.

I know that it feels terrible to be in this place where there are only

questions and concerns and no real answer in sight, but maybe you are closer

than you think. If only you could get to a DAN doctor--or maybe even talk

to one on the phone.... I know you have been having trouble with your

pediatrician and getting Nystatin. Since DAN doctors all have their

specialties, it might be worth a search to find one to talk to who deals

with Tourettes and related disorders. Maybe someone out there has had luck

with one?

Also, three months is not very long for a 7 going on 8 year old. It may

take a while to get everything out of his system. He may just be in the

beginning stages.

My heart is with you.

East Hampton, NY