Concerns about increasing intolerances; about getting stuck in the diet

[Guest guest]

I guess the band-aid question crystalized my concerns in this regard. I

find that so many parents remove casein and gluten and then find that they

also must eliminate a host of other things. I also have seen several

posts from parents who didn't think the diet was helping but saw reactions

when they tried to reverse it. I also saw the post a few days ago which,

if true, seemed to indicate that soy may be as bad as or worse than casein

for all of our kids--not just those who seem to react. While I haven't

seen much on this topic recently, I also remember postings about

" rotation " diets, though this has to get harder and harder as you

eliminate more. This leads me to the following concerns:

1. Are we finding that we have to remove more foods because the original

removals have unmasked others, or are we somehow increasing our children't

intolerances as we eliminate?

2. The question that was posted here a few days ago but hasn't really been

confronted--if the breakdown of soy shows even more of the peptides than

casein, is this going to turn into the gfcfsf diet for everybody? I know

some of you do this and much more, but it does make things more difficult?

3. Is it possible to be caught in a no-man's land with this diet: not

really seeing any benefits but having to continue it because your child

now visibly reacts to casein, gluten, etc., etc., etc.?

Not meaning to be negative, but as one just transitioning into this diet,

I find them to be legitimate and grave concerns.

Cheryl

[Guest guest]

We have also become frustrated with this diet. Not because we don't

see an improvement - instead of having diarrhea 1-2 times a day,

Ethan has movements every 2-3 days, and 1/2 of that poop is normal

(the other half is still diarrhea). We have done so many food

rotations that we are so frustrate. I am getting the Comprehensive

Stool Analyses done from Great Plains. This will tell me if my son

is release carbohydrates into his feces. After this test, we are

starting EnzyMaid (sp?) while continuing the diet to see if his poops

harden up.

> I guess the band-aid question crystalized my concerns in this

regard. I

> find that so many parents remove casein and gluten and then find

that they

> also must eliminate a host of other things. I also have seen

several

> posts from parents who didn't think the diet was helping but saw

reactions

> when they tried to reverse it. I also saw the post a few days ago

which,

> if true, seemed to indicate that soy may be as bad as or worse than

casein

> for all of our kids--not just those who seem to react. While I

haven't

> seen much on this topic recently, I also remember postings about

> " rotation " diets, though this has to get harder and harder as you

> eliminate more. This leads me to the following concerns:

>

> 1. Are we finding that we have to remove more foods because the

original

> removals have unmasked others, or are we somehow increasing our

children't

> intolerances as we eliminate?

> 2. The question that was posted here a few days ago but hasn't

really been

> confronted--if the breakdown of soy shows even more of the peptides

than

> casein, is this going to turn into the gfcfsf diet for everybody?

I know

> some of you do this and much more, but it does make things more

difficult?

> 3. Is it possible to be caught in a no-man's land with this diet:

not

> really seeing any benefits but having to continue it because your

child

> now visibly reacts to casein, gluten, etc., etc., etc.?

> Not meaning to be negative, but as one just transitioning into this

diet,

> I find them to be legitimate and grave concerns.

>

> Cheryl

[Guest guest]

I saw several sites with information on intolerances basically saying

that people are very prone to develop an intolerance or allergy to

what they eat most. There is a very high intolerance/allergy to fish

among Scandanavians and to rice among Japanese.

This may shed some light on why as a person startes consuming more

and more of a particular food, they become more sensitive to it when

they weren't before.

.

[Guest guest]

Great questions, Cheryl. You might find it helpful to join some

autism lists that explore the biomedical implications of autism in

far more depth that the diet list can really address without changing

the whole scope of the list.

There is an on-going study of gfcf that found improvement on the diet

among some, but deterioration among others. That was theoretically

due to increased awareness or the unmasking of other food issues.

The second phase of the study removed other common problem foods, and

the number of people who improved went up. (FYI - soy was removed in

phase 2) www.feat.org has a newsletter than can keep you up to date

on the research. This seems to indicate that gfcf is enough for

some, but not for others. Final results are not in yet.

In our family experiment, the ELISA seems to have been accurate. We

went gfcf, then removed the remaining high scoring foods (rice,

mustard greens) a few weeks into the diet. The borderline foods were

rotated. We're more relaxed now - just don't overdo any one item.

And knowing that soy & corn are problems for many ASD kids, we never

relied heavily on them.

No other food has become an issue thus far (15 mos). However, as

improvements continues, certain additives are now glaringly obvious

problems. Fruit roll-ups & anything with nutrasweet are banned,

other items are reduced and will be eliminated. These are not new

intolerances - I believe their effect is more obvious now, and many

artificial additives known to be harmful anyway. {There are more

dead lab rats than I care to think about to support this.) Again,

there are other lists that cover these issues & include published

studies.

IMHO, there is no one true way to answer you. Some find the gfcfdiet

to be the answer, for others it's the tip of the iceberg. Some

uncover more issues, or intensively work on the damaged gut (which

often means tackling the yeast situation), or investigate immune

dysfuntion, metal toxicity, etc.

N

.....

> 1. Are we finding that we have to remove more foods because the

original

> removals have unmasked others, or are we somehow increasing our

children't

> intolerances as we eliminate?

> 2. The question that was posted here a few days ago but hasn't

really been

> confronted--if the breakdown of soy shows even more of the peptides

than

> casein, is this going to turn into the gfcfsf diet for everybody?

I know

> some of you do this and much more, but it does make things more

difficult?

> 3. Is it possible to be caught in a no-man's land with this diet:

not

> really seeing any benefits but having to continue it because your

child

> now visibly reacts to casein, gluten, etc., etc., etc.?

> Not meaning to be negative, but as one just transitioning into this

diet,

> I find them to be legitimate and grave concerns.

>

> Cheryl