Re: Andy, indications for the GFCF diet?

[Guest guest]

> Andy,

>

> I noticed on a recent post, you asked a parent if there was any

> legitimate indication for their doctor recommending the GFCF diet?

> I had always thought that the presence of urine peptides

This test as usually performed is not accurate and not a real

indication. I realize most DAN! doctors do use it (and thus waste

millions of parent years of labor) because it is available from a lab

they are used to dealing with.

> and/or high IgG responses to gluten and casein

This would be a legitimate indication.

Also high secretory IgA to either is a legitimate indication.

> were the indications for this

> diet. In addition, many people say that lab tests for the urine

> peptides could be false negative, so everyone on the autism spectrum

> should at least try the diet...

I realize some people have a religious need to waste billions of

parent years of labor, but all this demonstrates is that the test in

question isn't the right way to figure it out.

>

> Could you please share your view on what would be a legitimate

> indication for this diet?

Elevated secretory IgA to either substance. If total secretory IgA is

low, then the test can provide a false normal and needs to be

re-checked after doing things to get sIgA up. Also serum IgG at

significant levels (more than a 1+ on an allergy panel) to these.

Given the extreme difficulty of a therapeutic trial of the diet (7+

months) and the dramatic improvements other supportive therapies with

clear indications can provide in much less time I think that this diet

should be prescribed only after careful thought and evaluation.

Factors that predispose people towards sensitivity are low IgA levels,

inflammatory disease of the small intestine, leaky bowel, and

irish/northern german/scandinavian ancestry.

>

> Thank

[Guest guest]

> Given the extreme difficulty of a therapeutic trial of the diet (7+

> months) and the dramatic improvements other supportive therapies with

> clear indications can provide in much less time I think that this diet

> should be prescribed only after careful thought and evaluation.

>

> Factors that predispose people towards sensitivity are low IgA levels,

> inflammatory disease of the small intestine, leaky bowel, and

> irish/northern german/scandinavian ancestry.

Andy, I disagree here, on a number of points. I think that if an autistic

child has chronic diarrhea, that alone would be enough to warrant a trial of

the diet. As well, I've personally watched the kid under my care (okay a

survey of one. I know, highly scientific) move onto the casein free portion

and make great strides in just two weeks. Yes, the gluten free portion takes

6-7 months to have an effect but many parents have reported positive change

there as well.

Also, I have to disagree with your assessment that the diet is extremely

difficult. The first couple of weeks I was on it, I thought it was

dreadfully difficult (and I'm sure the fact that I was having every opiate

withdrawal symptom you could list didn't help make it any easier) but then I

figured out my substitutions, got used to new habits and learned quick

things to fix and freeze. There is a huge, well established system out there

to assist one with this diet. Apparently, Celiac Sprue is also becoming

epidemic (hmmm). It is still more work than popping down to Mcs but is

much easier than I ever could have imagined. I am in the fifth month of the

diet and it's mostly autopilot now.

Not every metal poisoned child has the same cluster of symptoms but I have a

strong suspicion that the subset that Wakefield looks at, the one's

who have the measles colonizing their guts are the ones who should be on the

GF/CF diet and you can tell those one's by the ones who have chronic

diarrhea or intractable constipation and who severely self limit their foods

to high gluten/high casein foods. Those kids have leaky guts and they are

self medicating with the casomorphines and glutomorphines. D.A.R.E. takes

on a whole new meaning, eh?

I agree that the fancy/dancy expensive and time consuming urine peptide

tests are unnecessary. I think people should behave around the GF/CF diet

the same way you feel they should around chelation. Try it. See if your kid

gets better on it. Stick with it if it works, try something else if it

doesn't. I really do wish our autistic kids were homogeneous and all

responded the same (and well) to treatments but they don't, so I hope people

won't throw out one treatment in favor of another.

I do support Andy's contention that chelation should be first in the arsenal

and that it shouldn't be discontinued until GF/CF has been established or

discontinued until the gut bugs are under control. There isn't any time to

waste. Deal with them concurrently or if you can only handle one, choose

chelation. It is the best and brightest of the treatments in my opinion.

(Aside to Andy)

BTW, Andy, is there any chance that you take Paypal for your chelation

class. I so suck at sending checks but I'm really, really good at Paypal. If

you don't take it, I will make myself find my check book (I know it's got to

be here somewhere) and find an envelope (I know I have some somewhere) and

find a stamp (uh-oh. I don't think I have any of those). I just realized I

have to send you the registration form anyway, I guess I should just send

the check with it.

(Aside to eveyone else)

Yes, that was a shameless, comedic, and wholly unsolicited advertisement for

Andy's chelation class which you can find information about at

http://www.noamalgam.com/courseflier.html . I have found his book extremely

helpful and expect that the class will be even more so.

Terri

[Guest guest]

> > Given the extreme difficulty of a therapeutic trial of the diet

(7+

> > months) and the dramatic improvements other supportive therapies

with

> > clear indications can provide in much less time I think that this

diet

> > should be prescribed only after careful thought and evaluation.

> >

> > Factors that predispose people towards sensitivity are low IgA

levels,

> > inflammatory disease of the small intestine, leaky bowel, and

> > irish/northern german/scandinavian ancestry.

>

> Andy, I disagree here, on a number of points. I think that if an

autistic

> child has chronic diarrhea, that alone would be enough to warrant a

trial of

> the diet.

In my opinion, after failing therapeutic trials of a lot of other

things (or start it and try all the other stuff too if you are

willing, then if the diarrhoea resolves, reintroduce something and see

what happens). Most other things don't take months to see if they

work.

>As well, I've personally watched the kid under my care (okay a

> survey of one. I know, highly scientific) move onto the casein free

portion

> and make great strides in just two weeks.

Which could be because they have a casein problem or could be they

have a thiol/cysteine problem.

Another problem with the diet is that it (and most other diets) change

a LOT of stuff and it is important to know what is going on so as to

change it for the better.

>Yes, the gluten free portion takes

> 6-7 months to have an effect but many parents have reported positive

change

> there as well.

>

> Also, I have to disagree with your assessment that the diet is

extremely

> difficult.

Most of the parents who I talk to who have done it for a long time do

say it is difficult. I have done other equally restrictive diets for

myself and for others and they are difficult.

>The first couple of weeks I was on it, I thought it was

> dreadfully difficult (and I'm sure the fact that I was having every

opiate

> withdrawal symptom you could list didn't help make it any easier)

but then I

> figured out my substitutions, got used to new habits and learned

quick

> things to fix and freeze. There is a huge, well established system

out there

> to assist one with this diet. Apparently, Celiac Sprue is also

becoming

> epidemic (hmmm).

Yes. Hmmmmmm....... Lots of things that used to be rare are now

common. Hmmmm....... Lots of things that used to be pathology are

now considered simply signs of aging. Hmmmmmm.......

>It is still more work than popping down to Mcs

Someplace that goes off limits on most of the common dietary

restrictions. Unfortunately. It is convenient and kids love it. I

remember how fun it was to dip those hydrogenated fat laden french

fries in that red dye and chemical concoction called a strawberry milk

shake.

> but is

> much easier than I ever could have imagined. I am in the fifth month

of the

> diet and it's mostly autopilot now.

>

> Not every metal poisoned child has the same cluster of symptoms but

I have a

> strong suspicion that the subset that Wakefield looks at, the

one's

> who have the measles colonizing their guts are the ones who should

be on the

> GF/CF diet and you can tell those one's by the ones who have chronic

> diarrhea or intractable constipation and who severely self limit

their foods

> to high gluten/high casein foods.

Thank you very very very VERY very VERY much for a concise statement

of the clinical indications for the diet!

I'm amenable to anyone prescribing it based on some kind of indication

as above that is reasonable and doesn't identify all of the kids as

needing it, since some of them don't benefit from it.

> Those kids have leaky guts and they are

> self medicating with the casomorphines and glutomorphines.

This makes some sense.

> D.A.R.E. takes on a whole new meaning, eh?

I thought it meant Drugs Are Really Excellent. Do you DARE to think

for yourself instead of thinking what the secret state police in the

spiffy black uniforms tell you to think?

> I agree that the fancy/dancy expensive and time consuming urine

peptide

> tests are unnecessary.

Inaccurate, too.

> I think people should behave around the GF/CF diet

> the same way you feel they should around chelation. Try it. See if

your kid

> gets better on it. Stick with it if it works, try something else if

it

> doesn't.

My ONLY objection to it is that many say it takes a year long trial to

find out if it helps. That is just too expensive in terms of time and

effort compared to a lot of other things that are easy to check and

also help a lot. E. g. chelation. You usually know after one cycle.

Certainly if you did 5 and nothing happened, it isn't likely to be the

answer.

> I really do wish our autistic kids were homogeneous and all

> responded the same (and well) to treatments but they don't, so I

hope people

> won't throw out one treatment in favor of another.

Yes. My main complaint about, e. g. DAN! doctors isn't even their

psychoticallly inappropriate chelation protocol, but their one size

fits all protocol for autism without any real attempt to diagnose what

is wrong with each individual kid.

> I do support Andy's contention that chelation should be first in the

arsenal

Presuming a positive hair test, or other strongly suggestive stuff, or

a positive response to a trial of it. Chelation shouldn't be done for

month after month if it isn't working either.

> and that it shouldn't be discontinued until GF/CF has been

established or

> discontinued until the gut bugs are under control. There isn't any

time to

> waste. Deal with them concurrently or if you can only handle one,

choose

> chelation. It is the best and brightest of the treatments in my

opinion.

>

> (Aside to Andy)

>

> BTW, Andy, is there any chance that you take Paypal for your

chelation

> class.

Yup.

>I so suck at sending checks but I'm really, really good at Paypal. If

> you don't take it, I will make myself find my check book (I know

it's got to

> be here somewhere) and find an envelope (I know I have some

somewhere) and

> find a stamp (uh-oh. I don't think I have any of those). I just

realized I

> have to send you the registration form anyway, I guess I should just

send

> the check with it.

>

> (Aside to eveyone else)

>

> Yes, that was a shameless, comedic, and wholly unsolicited

advertisement for

> Andy's chelation class

which is well appreciated ;-)

> which you can find information about at

> http://www.noamalgam.com/courseflier.html . I have found his book

extremely

> helpful and expect that the class will be even

[Guest guest]

>

Andy said...

>

> Given the extreme difficulty of a therapeutic trial of the diet (7+

> months) and the dramatic improvements other supportive therapies with

> clear indications can provide in much less time I think that this diet

> should be prescribed only after careful thought and evaluation.

And I just wanted to say that with MY son, the difference from removing

casein only took 5 days to make a difference, gluten about a month. I think

it varies from child to child, but from the other parents that do this diet

here, everyone says the same about casein, especially if the child suffers

from ear infections and/or sinus problems, they clear up really fast!!

With my son chelation is going slowly and I'm glad he's gf/cf in the mean

time.

[Guest guest]

-- I have heard comments like this so many times---

that a particular kid got MUCH better really quite soon. Like in a

week or two. Some have less clear results, maybe a little bit

of change. The cases where it makes a big difference, well,

like you said, this makes it easy to choose (to continue).

Moria

> >

>

> Andy said...

>

> >

> > Given the extreme difficulty of a therapeutic trial of the diet

(7+

> > months) and the dramatic improvements other supportive therapies

with

> > clear indications can provide in much less time I think that this

diet

> > should be prescribed only after careful thought and evaluation.

>

> And I just wanted to say that with MY son, the difference from

removing

> casein only took 5 days to make a difference, gluten about a month.

I think

> it varies from child to child, but from the other parents that do

this diet

> here, everyone says the same about casein, especially if the child

suffers

> from ear infections and/or sinus problems, they clear up really

fast!!

>

> With my son chelation is going slowly and I'm glad he's gf/cf in the

mean

> time.

>

>

[Guest guest]

I put little on gfcf diet and we noticed changes in two

weeks. He wasnt constipated and wasnt poking his eyes, he even

stopped toe-walking. I also started giving him vitamin/mineral

supplements at the same time. So mabey it was a combination? We

can't afford the tests, they're not covered on our insurance, the

doctors office is disinterested. So the diet was something that I

could easily do without medical intervention.

Interestingly, is Irish descent. I am also wheat and dairy

intolerant and I am scandinavian descent. Like Andy mentioned in his

post. There must be something to genetic dispositions.

Kalzangluv

> > >

> >

> > Andy said...

> >

> > >

> > > Given the extreme difficulty of a therapeutic trial of the diet

> (7+

> > > months) and the dramatic improvements other supportive

therapies

> with

> > > clear indications can provide in much less time I think that

this

> diet

> > > should be prescribed only after careful thought and evaluation.

> >

> > And I just wanted to say that with MY son, the difference from

> removing

> > casein only took 5 days to make a difference, gluten about a

month.

> I think

> > it varies from child to child, but from the other parents that do

> this diet

> > here, everyone says the same about casein, especially if the

child

> suffers

> > from ear infections and/or sinus problems, they clear up really

> fast!!

> >

> > With my son chelation is going slowly and I'm glad he's gf/cf in

the

> mean

> > time.

> >

> >

[Guest guest]

Again, we have the dichotomy between what the doctors say and what the

parents say. If you see a response in a week or two that makes it a

reasonable thing to try. It does also make me wonder how much of the

casein response is not actually casein but thiol/sulfur restriction

response.

Andy . . . .. . . . . . . . . . . .

>

> >

> > Given the extreme difficulty of a therapeutic trial of the diet

(7+

> > months) and the dramatic improvements other supportive therapies

with

> > clear indications can provide in much less time I think that this

diet

> > should be prescribed only after careful thought and evaluation.

>

> And I just wanted to say that with MY son, the difference from

removing

> casein only took 5 days to make a difference, gluten about a month.

I think

> it varies from child to child, but from the other parents that do

this diet

> here, everyone says the same about casein, especially if the child

suffers

> from ear infections and/or sinus problems, they clear up really

fast!!

>

> With my son chelation is going slowly and I'm glad he's gf/cf in the

mean

> time.

[Guest guest]

At 00:00 14-1-2003, you wrote:

>It does also make me wonder how much of the

>casein response is not actually casein but thiol/sulfur restriction

>response.

If restriction helped quickly and cleared up sinusproblems (as quoted

below) it could be allergy.

>I think

> > it varies from child to child, but from the other parents that do

>this diet

> > here, everyone says the same about casein, especially if the child

>suffers

> > from ear infections and/or sinus problems, they clear up really

>fast!!

Cheers,