doctor approval of gf/cf diet

[Guest guest]

Just out of curiosity, for those of you whose kids are on the gf/cf diet, do

your doctors believe that it works? I know that most supplementation and

special diets are frowned upon by the medical establishment however it seems

that gf/cf diet are rampant and there are too many parents who sing its

praises. I remember asking our developmental pediatrician about gf/cf and

she said that all " those " diets are bunk and dangerous.

Anyway, I was just curious.

Tricia Morin

North Carolina

[Guest guest]

Hope's pediatrician and her neurologist both said they've seen too many kids

improve on a GF/CF or a straight GF diet for there not to be something to it.

When I brought up the suggestion of starting Hope on a GF/CF diet after her

autism Dx they were both behind it 100%. Her neurologist is the one who

suggested the enzymes and probiotics for her to help with the diet. I didnt

have a problem at all with either of them or her psychologist thinking I was

strange, reading too much or grasping at straws.

Once Hope started telling me about her stomach hurting (you know how that is

with limitied verbal kids. a bunch of yes and no questions and one word

answers), her pediatrician went ahead and ordered blood tests to check her for

celiac. Which came back positive for celiac, but also showed that she shouldnt

have a problem with dairy. So once we had her on the probiotics for a while, we

slowly brought dairy back into her diet and she's doing great. She's feeling a

lot better, she's not having stomach aches like she was, she's more alert, and

we're having a speech explosion. No new words, but the ones she can say are

becoming more clear and she keeps repeating them over and over. she's echoing

what we say a lot more, she's identifying things repeatedly, and she's greeting

people without being prompted now.

Her diet is the only thing that changed, and now I'm getting notes from her

teacher in the ESY program that she has very nice talking. They just met her on

July 6th and her teacher and the 2 assistants can understand her when she asks

for something. Her former developmental therapist who sees Faith even commented

how in the last couple of weeks she's just seen a huge change in Hope with how

she acts and how her speech is. To a lot of people it's little changes, but for

those close to us who have been right here through the whole apraxia and now

autism fight hearing " mom " instead of " ma " is a HUGE. For those who were used

to seeing Hope hold back and maybe smile a little when they came in the house,

seeing her run up yelling " Hi " and waving with a big grin is just amazing.

Toni Wells

http://designs.merlins-avalon.com

[ ] doctor approval of gf/cf diet

Just out of curiosity, for those of you whose kids are on the gf/cf diet, do

your doctors believe that it works? I know that most supplementation and

special diets are frowned upon by the medical establishment however it seems

that gf/cf diet are rampant and there are too many parents who sing its

praises. I remember asking our developmental pediatrician about gf/cf and

she said that all " those " diets are bunk and dangerous.

Anyway, I was just curious.

Tricia Morin

North Carolina

[Guest guest]

I've heard pros and cons on this. I've got a friend who tried this, and of

course little or no improvement, nothing to the point that they wanted to

continue, yet I hear of others who just rave about it, saying their child has

greatly improved. It is, like anything else, all individual.

`k

[ ] doctor approval of gf/cf diet

Just out of curiosity, for those of you whose kids are on the gf/cf diet, do

your doctors believe that it works? I know that most supplementation and

special diets are frowned upon by the medical establishment however it seems

that gf/cf diet are rampant and there are too many parents who sing its

praises. I remember asking our developmental pediatrician about gf/cf and

she said that all " those " diets are bunk and dangerous.

Anyway, I was just curious.

Tricia Morin

North Carolina

[Guest guest]

I have been on this board just about 1 year, my son is almost 6

(7/18), I had been doing everything and anything to figure out what

was wrong with him. Diagnosed w/mild apraxia by one ST not apraxic by

another, dysarthric speech, maybe his tongue tie was the problem, you

know the routine, nothing in stone and always changing. Our nightmare

began,(6/03) when after MMR booster given on the sme day as VARIVAX,

read later a HUGE NO NO. His overall cognition deteriorated,

hypotonia got worse, just not with the program, I could call his name

5-6 times, finally would put his face in my hands to make contact

w/him to get him to hear me.We went to developmental ped, they told

us ST/PT OT, which we started, many many visits to neurologist, told

us she couldn't find anything wrong, two seizures, negative EEG,

negative CAT, I was at pediatrician's office nearly weekly w/him,

nothing wrong I was told, just low tone and deal with it.Meanwhile

got pretty good results w/Proefa, but I wasn't fully convinced that

the oil was the only answer.,stated combing over my old med books, A

TON of internet research and finally took him to an

allergist/immunologist on one of our " typical days " , was in

his zone,(at this time not taking EFA's I wanted MD to see how

disorganized he was) slow verbal response to questions, spinning in

the chair, and DOC said he is typical allergic, caught me by

surprise, as he NEVER showed signs of any allergies, none, this child

never gets ill at all, two days later, he did allergy testing, just

environmental first, dog, cat trees you name it he is allergic. MD

told me chidlren sometimes develop neuro symptoms w/ allergies, not

typical rhinitis, asthmatic symptoms. Put on GF/CF soy egg

preservative free, and within 3 days this kid was totally different.

On the ball, verbal responses appropriate, speech clearer, more

enrergy and above all a PLEASURE to deal with.Now onto the blood

work, he did nearly every blood test under the sun, I think 19 vials

of blood was drawn, his blood was sent to Dr. JIll for a thiol

profile, a blood test done w/autisic children, we started TMG (same

as DMG but methylated), Folinic Acid, A B-Complex called Nu-thera and

magnessium citrate for his chronic constipation and zinc. Well first

to go was the hypotonia, confirmed by the PT that first evaluated him

last December, he has gianed about 2 years maturity wise, he always

acted younger than his age,he stopped chewing his clothing, I have

shirts that buttons were chewed off, and sleeves ripped open from

chewing, learned to ride a two wheel bike in one day of trying,( I

never thought he would ever get that down),this kid refused to sing

at his pre-K moving up last June, now I can't stop him from singing,

and it is music to my ears.His kindergarten teacher a class of NT

kids, said she wished the whole class went on his diet. She was blown

away with his progress from April to June.Now since his blood results

are back we have added Methyl B 12 to the mix and improvements are

continuing, although more subtle as I can't see what more is needed

but seeing improvement daily. So to make an already too long post

short it was with the advice of my son's MD for us to go to the diet

and now we are at the 3 day rotation stage of adding things back and

so far he hasn't reacted to anything, as MD said his gut needed

healing and now it maybe OK to start giving those offenders

again.Another helpful item was the EPsoms salts baths, actually that

was my clue it was something internal going on with him. I just hope

someone may see their child in this and Look Deeper the answer is

there. and maybe they can breath easier like we are now, finally

getting our son they way he was meant to be,

Colleen

> Just out of curiosity, for those of you whose kids are on the gf/cf

diet, do

> your doctors believe that it works? I know that most

supplementation and

> special diets are frowned upon by the medical establishment however

it seems

> that gf/cf diet are rampant and there are too many parents who sing

its

> praises. I remember asking our developmental pediatrician about

gf/cf and

> she said that all " those " diets are bunk and dangerous.

>

> Anyway, I was just curious.

>

> Tricia Morin

> North Carolina

>

>

>

>

[Guest guest]

Tricia -

We don't have Josh on a GFCF diet but there is a young boy in his school

(the next grade up from Josh) who has started it recently. He is on the autism

spectrum, has apraxia, some cognitive delays, and had gross/fine motor delays

along with sensory integration dysfunction. His mom saw changes in her son

within about a month of starting on the diet - he was not quite as hyperactive,

he was a bit more social with looking at people more, and he was a bit more

verbal. She is keeping him on the diet (with her ped neuro's blessings, I might

add) to see what happens - of course I haven't spoken with her since the end of

the school year so I'm anxious to see what happened over the summer months.

Sherry

Morin Family <morinfamily4@...> wrote:

Just out of curiosity, for those of you whose kids are on the gf/cf diet, do

your doctors believe that it works? I know that most supplementation and

special diets are frowned upon by the medical establishment however it seems

that gf/cf diet are rampant and there are too many parents who sing its

praises. I remember asking our developmental pediatrician about gf/cf and

she said that all " those " diets are bunk and dangerous.

Anyway, I was just curious.

Tricia Morin

North Carolina