RE: Diet / older kids

[Guest guest]

I would like to hear from parents who have started the diet with an older

child. My daughter is 10 and we were on the diet for 3 months.

Unfortuneately, my husband wanted to challenge it so now she is off

completely. I'm going to have some testing done and hopefully can convince

him that autism has many biological and nutritional factors and is not just a

neurological-in-a-vacuum condition.

As far a results...there was less head-banging and sib, but not totally

gone. Most noteably, her attention span (which is extremely short) increased.

I about fell over the first time she sat for 1/2 hour at my other daughter's

volleyball game. (She gets dragged to a lot of sporting events, which are

not her happiest times). Her teachers were very supportive and careful with

the diet, although they felt all these things were alread " emerging " before

the diet. She did have some bad days. I have read how a three month

regression often happens...so maybe i hadn't breached the diet, or it wasn't

ears, or the Christmas rush, or winter SAD...there are so many factors.

Plus, I had started using some rice flour from the farmer's market. The

owner seemed sympathetic to my situation and was sure there was no

cross-contamination in the preparation of the flour, but I have my doubts.

When we initially put her back on regular food, there was a slight

increase in sib, but in some ways she seemed thrilled to be eating normal

again. Strangely enough, she started sleeping at night here and there BUT

she was also on antibiotics at the time we took her off the diet. If there

was a yeast flare-up, that might explain the sleep problems....or it may be

the longer daylight hours and less rush since the holidays are over. This is

the only time in her life that I had her on anti-biotics and she did not

sleep through the nite as the ears cleared. The laughter everyone is taking

as pleasure...but I suspect it is the phenols which I had been limiting, esp.

bananas.

I love all that I've been learning from all you gfcf subscribers.

April in SE Pa., Simona's mom

[Guest guest]

> Date: Sat, 10 Feb 2001 01:55:27 -0000

>

> Subject: just a few questions...

> I see that almost all the parents posting have young

> children on this diet. Does this mean that it's not really helpful

> for older kids, teens, adults?

Not at all; just a couple weeks ago on this list some with teens or young

adults were saying this diet had helped them and they were glad they'd

learned of it.

My son is 9, been gfcf 6 yrs. His autistic symptoms are now so subtle

that people who know of his diagnosis think he was misdiagnosed :-)

Others don't know of his diagnosis so just think he's spoiled or a little

dense as he has trouble following directions. I have noticed the ones

who start young have the best results. But I've heard moms say that even

though their son was a teenager, and it was harder to keep him from

sabotaging his diet, they saw benefits from doing it.

> Does this mean that eventually people throw in the

> towel with the diet because they think it is not worth it or they

> get so

> tired of it? Or that once kids get older it is impossible to get

> them to stick to it?

If you can help your child realize this diet helps them feel better, they

will be less prone to stray from it as adolescents. They'll be miserable

enough to not stray once they've done so, usually. My son gets explosive

bowels from slight cross contamination of foods with gluten.

Actually the first few months are the toughest. After awhile it's second

nature and you don't even think about the fact you are the only one in

your neighborhood who makes bread all the time. You learn to keep some

snacks and milk substitute in the car at all times so your child Always

has something to eat when needed. Traveling is a bit tough dragging

cartons of soy milk and a cooler with frozen breads, etc along but even

that gets less of a problem the more you do it. There's only a couple

isles in a regular grocery store to shop in so the time spent preparing

their special foods we get at health food store or via mailorder is saved

in not going down every isle of the grocery store when you do your weekly

shopping.

> Alternatively, does it mean that eventually the system is repaired

> and people can go back to eating " normal " foods? HOPE SO!

Actually these are nutritious, good foods and in a matter of months they

will seem normal to you, too. It would be nice if they were easier to

obtain. I understand that celiacs can travel and eat out with ease in

Europe because it's so common there. Possibly as more thousands of kids

go gfcf, more safe foods will be available in grocery stores. I would

not want to put my son back on gluten or casein as I've read in the ANDI

newsletter that some parents have done so who were gfcf for a couple

years and even though the child seemed to not be bothered negatively

initially, some have gone into schizophrenia as these kids' systems

cannot take the insult of gluten and casein, which affect them like

opiate drugs. Before we knew our son was autistic, I attended some

celiac meetings and heard that some celiacs " seem " to have their gluten

intolerance go into " remission " during their teen years but those who do

ingest a lot of gluten during the teens do pay for it later and are

sorry. We need to help our kids face the fact this is lifelong, just

like insulin dependent diabetics, and when they are on their own they

will know the consequences of not adhereing to the diet are serious. If

they are not gfcf, the sad fact is, they are far less likely to be able

to live on their own as adults.

Because a certain relative often harps about this diet, my son does ask

if he will be able to eat normal food when he grows up. I tell him that

he won't want to eat gluten and milk but that maybe he'll be able to eat

apples and oranges and some of the things that he really misses once we

get his insides healed up. That helps him be willing to take his

supplements :-)

Carol in Oregon

[Guest guest]

In a message dated 2/10/2001 5:41:14 PM Eastern Standard Time, nulani@...

writes:

I agree very much, 3 months is nothing into this diet. I have seen alot

of people give this up since I joined this group and it is too bad . They

gave up too soon , it took at least a good 8 months for STEADY gains.. I

was seeing positives in the beginning, but it is nothing to how he is now (

almost a year ) He is so much better lately that he seems almost recovered

at times. I know that he still has a way to go though, cause he did not get

this way overnight . I wish everyone gave it at least a year to really see

the changes I have seen. The UNbelievers are now believers . I was not sure

if this would help at all in the beginning, but it was my only hope and boy

I am glad I stuck it out.

kelly

> When people really understand the need to get the opioids out of the

> diet, it's easier to follow the diet strictly. Three months is not a

> long time, especially for an older child. You may have been

> encountering gluten withdrawal, not regression, or a different food

> problem was surfacing because the opioids were no longer clouding it.

>

> Also, even as the mind clears, there are still years of stunted

> development and learned behavior to be addressed. The diet, even if

> 100% successful, doesn't place the child where she would have been

> but for the ASD. Like a healed broken leg, there is still therapy to

> be done to restore normal functioning.

>

>

[Guest guest]

Hi,

This topic comes up a lot. There's a general belief that results

decrease as the age goes up. However, some of us started our kids on

the diet later (after age 8), one listmate started her 30-something

son on it, and we've all had positive behaviour changes. Some of us

have had great success by any measure. Search the archives for many

very inspiring stories.

When people really understand the need to get the opioids out of the

diet, it's easier to follow the diet strictly. Three months is not a

long time, especially for an older child. You may have been

encountering gluten withdrawal, not regression, or a different food

problem was surfacing because the opioids were no longer clouding it.

Also, even as the mind clears, there are still years of stunted

development and learned behavior to be addressed. The diet, even if

100% successful, doesn't place the child where she would have been

but for the ASD. Like a healed broken leg, there is still therapy to

be done to restore normal functioning.

Good luck with gaining family support. There are some helpful links

to research papers at www.gfcfdiet.com. The biological aspects of

austism are not crazy talk or supposition. Often we moms have to be

the ones to uncover this information and teach our doctors and

significant others.

> I would like to hear from parents who have started the diet

with an older

> child. My daughter is 10 and we were on the diet for 3 months.

> Unfortuneately, my husband wanted to challenge it so now she is off

> completely. I'm going to have some testing done and hopefully can

convince

> him that autism has many biological and nutritional factors and is

not just a

> neurological-in-a-vacuum condition.

[Guest guest]

April,

I started (he'll be 10 next month) last summer. It took about a year

to phase out a few foods at a time(due to husband not being as sure about

this as I am) and we got started last summer. He had a few infringements

over the holidays and I purposely gave him wheat 3 weeks ago and I WILL

NEVER DO THAT AGAIN! His ATEC(on the Autism Research Institute's web site)

score was 37 before the wheat and then went up to 58(the lower the score, the

better). He has come down some since then but is not where he was. As I

write this, he is screaming like a banshee (for fun, I guess). Before the

diet, he was hyper, screamed all the time(for no reason), and had a short

attention span. His hyperactivity and the screaming went away, which alone

is reason enough to do it and his attention increased.

It was very overwhelming at first, but once you know what you can and can't

buy-the thought of the diet for the rest of our lives or for a few or a

number of years isn't so scary.

Keep on keeping on.....

Ann

[Guest guest]

Thanks , and others for the encouragement. I am definately

going to get some testing done so there is a more objective standard for

doubting hubby and others. Interesting enough, my 14 and 12 year old today

said they thought Simona was calmer on the diet (So it's not just wishful

thinking on my part). " But she still had bad days " I countered. " But she

was still calmer " they told me. I really think that after a couple of weeks

off of the diet, the initial happiness as worn off and her behavior is

getting quite edgy again. Was it who said the diet kept your child out

of an institution. Was this due to behavior?

Thanks again

April in SE Pa.

[Guest guest]

Thanks , and others for the encouragement. I am definately

going to get some testing done so there is a more objective standard for

doubting hubby and others. Interesting enough, my 14 and 12 year old today

said they thought Simona was calmer on the diet (So it's not just wishful

thinking on my part). " But she still had bad days " I countered. " But she

was still calmer " they told me. I really think that after a couple of weeks

off of the diet, the initial happiness as worn off and her behavior is

getting quite edgy again. Was it who said the diet kept your child out

of an institution. Was this due to behavior?

Thanks again

April in SE Pa.

[Guest guest]

just a few questions...

>

> > I see that almost all the parents posting have young

> > children on this diet. Does this mean that it's not really helpful

> > for older kids, teens, adults?

>

>

My son is 18, has been gluten-free since age 5, casein-free since age 12!!

Love, Becky from OR