Re: Off Diet - Regression?

[Guest guest]

Sue -

I have no idea what to say except that all kids are different. I know

that if we put my son back on " normal " food we would loose him right

away. I guess my suggestion to you would be to really document his

progress. Sometimes some kids take a little while to show the effects

of the forbidden food. My theory would be that whatever caused your

son to react negatively to the food originally - the " leaky gut " is

probably still there. I guess the question is how quickly does a

leaky gut heal and if it is healed can you go back to " normal " foods.

I see that question all the time on this list.

What my hubby and I have decided is that we will keep our son GFCF

until he is verbal enough to tell us what he is feeling - this will

be for quite awhile since he is 4 and has the verbal skills of a 2

year old. Once he can tell us how food makes him feel we might try

challenging him with gluten (I think we will always be casein free in

our house hold since we have discovered that we are all severely

lactose intollerant)

By the way - it doesn't sound like you were on the GFCF diet for very

long before changing back for the tests. Perhaps to really see if the

diet is effective you should go 100% for 3 or 4 months and then do a

challenge and see the effects. I know that there was a lot of hidden

gluten that we had to weed out of our son's diet before we could be

confident that we were 100%

I hope that helps...

Moira

mom to Vico (4 ASD) and Culzean (10.5 months)

[Guest guest]

> Sue,

>

> We were on the diet for 9 months when we did our first

infringement

> test. He did AMAZING for the first 2 weeks, increased language, eye

contact,

> everything BUT 3 weeks later he started having bouts of tears,

tantrums, and

> was " seeing " things (hallucinating...he is 7 and very verbal

Thanks for the info! We will continue to watch him closely (in fact,

every time he cries, I panic that " this is IT!-regression! " ) I won't

hesitate to put him back on the diet if I see bad signs, but since he

is the youngest of 5 kids, it sure is easier for all while he can eat

anything! If he doesn't regress, I'll probably try the diet again in

June when school is out and see what it does.

I'll keep you posted!

Thanks-

Sue

[Guest guest]

Well, we're back on! After a horrible ABA session last night, and

not listening well today, we're back on the diet. It took about a

week to see negative effects, but now we're sold again. (The good

news is that Brett put on a little weight on his break!!) Thanks for

your support!

Sue

> OK, I feel like a traitor writing this, but I need to know if

anybody

> else has been through this...

> We started my son on the GFCF diet on Feb 1, 2 days before his 3rd

> birthday. It took us about 2 weeks to get ourselves into total

> compliance, but we saw quite a few positive results. Brett was

much

> more verbal, stopped hand flapping, and generally seemed more alert

> and focused. I was thrilled!

> Last Thursday, we took Brett to see a GI doctor, because Brett has

> not had a normal stool in his entire life. He was terribly

> constipated before we took him off dairy a year ago; since then he

> has had chronic diarrhea. I was hoping the diet would help, but so

> far no luck in that department.

> Anyway, the GI doc (who has lots of autism experience) wanted to

run

> some stool analysis, RAST/IgE testing, and a test for celiac

disease

> to see what he could find. He told us Brett needed to go off the

> diet for a few days so that the tests could show reactions to

gluten

> & casein. Then we were told to bring in a stool sample and get

> Brett's blood tests done on Monday.

> I was terrified that we would have a horrible weekend, but we

started

> feeding Brett " normal " food Thursday night with plans of putting

him

> back on the diet Monday. However, we have seen NO regression! No

> hand flapping, no spacey-ness, he's not less verbal, nothing. I

> still haven't put him back on the diet, and if anything, he is

> continuing to gradually improve like he has for the last 6 weeks.

> My questions:

> *How long does it take for a regression reaction to hit?

> *Could it be that going on the diet jump-started his brain? (Maybe

> we should go on it every few months for another jump start?)

> *Could the " effects " of the diet just have been coincidence?

> I'm really not sure where to go from here! If anybody has any

advice

> for me, I'd love to hear it!

> Thanks so much,

> Sue

[Guest guest]

Sue -

It's really good to have proof that it's working. That will make it

easier to do the hard work. We got our proof with our son and it

really made the difference. I think my parents were supportive of

whatever we were doing because that's the type of people they are,

but after that horrible regression from play doh they were even

better than me about questioning everything we put in his mouth!

Sorry you had to go through the horrible stuff, but now you can say

with confidence that this is working for your son.

You are doing great!

Moira

> > OK, I feel like a traitor writing this, but I need to know if

> anybody

> > else has been through this...

> > We started my son on the GFCF diet on Feb 1, 2 days before his

3rd

> > birthday. It took us about 2 weeks to get ourselves into total

> > compliance, but we saw quite a few positive results. Brett was

> much

> > more verbal, stopped hand flapping, and generally seemed more

alert

> > and focused. I was thrilled!

> > Last Thursday, we took Brett to see a GI doctor, because Brett

has

> > not had a normal stool in his entire life. He was terribly

> > constipated before we took him off dairy a year ago; since then

he

> > has had chronic diarrhea. I was hoping the diet would help, but

so

> > far no luck in that department.

> > Anyway, the GI doc (who has lots of autism experience) wanted to

> run

> > some stool analysis, RAST/IgE testing, and a test for celiac

> disease

> > to see what he could find. He told us Brett needed to go off the

> > diet for a few days so that the tests could show reactions to

> gluten

> > & casein. Then we were told to bring in a stool sample and get

> > Brett's blood tests done on Monday.

> > I was terrified that we would have a horrible weekend, but we

> started

> > feeding Brett " normal " food Thursday night with plans of putting

> him

> > back on the diet Monday. However, we have seen NO regression!

No

> > hand flapping, no spacey-ness, he's not less verbal, nothing. I

> > still haven't put him back on the diet, and if anything, he is

> > continuing to gradually improve like he has for the last 6 weeks.

> > My questions:

> > *How long does it take for a regression reaction to hit?

> > *Could it be that going on the diet jump-started his brain?

(Maybe

> > we should go on it every few months for another jump start?)

> > *Could the " effects " of the diet just have been coincidence?

> > I'm really not sure where to go from here! If anybody has any

> advice

> > for me, I'd love to hear it!

> > Thanks so much,

> > Sue

[Guest guest]

Sue -

It's really good to have proof that it's working. That will make it

easier to do the hard work. We got our proof with our son and it

really made the difference. I think my parents were supportive of

whatever we were doing because that's the type of people they are,

but after that horrible regression from play doh they were even

better than me about questioning everything we put in his mouth!

Sorry you had to go through the horrible stuff, but now you can say

with confidence that this is working for your son.

You are doing great!

Moira

> > OK, I feel like a traitor writing this, but I need to know if

> anybody

> > else has been through this...

> > We started my son on the GFCF diet on Feb 1, 2 days before his

3rd

> > birthday. It took us about 2 weeks to get ourselves into total

> > compliance, but we saw quite a few positive results. Brett was

> much

> > more verbal, stopped hand flapping, and generally seemed more

alert

> > and focused. I was thrilled!

> > Last Thursday, we took Brett to see a GI doctor, because Brett

has

> > not had a normal stool in his entire life. He was terribly

> > constipated before we took him off dairy a year ago; since then

he

> > has had chronic diarrhea. I was hoping the diet would help, but

so

> > far no luck in that department.

> > Anyway, the GI doc (who has lots of autism experience) wanted to

> run

> > some stool analysis, RAST/IgE testing, and a test for celiac

> disease

> > to see what he could find. He told us Brett needed to go off the

> > diet for a few days so that the tests could show reactions to

> gluten

> > & casein. Then we were told to bring in a stool sample and get

> > Brett's blood tests done on Monday.

> > I was terrified that we would have a horrible weekend, but we

> started

> > feeding Brett " normal " food Thursday night with plans of putting

> him

> > back on the diet Monday. However, we have seen NO regression!

No

> > hand flapping, no spacey-ness, he's not less verbal, nothing. I

> > still haven't put him back on the diet, and if anything, he is

> > continuing to gradually improve like he has for the last 6 weeks.

> > My questions:

> > *How long does it take for a regression reaction to hit?

> > *Could it be that going on the diet jump-started his brain?

(Maybe

> > we should go on it every few months for another jump start?)

> > *Could the " effects " of the diet just have been coincidence?

> > I'm really not sure where to go from here! If anybody has any

> advice

> > for me, I'd love to hear it!

> > Thanks so much,

> > Sue

[Guest guest]

Dear Sue,

two things: (1) personal experience (2) some thoughts from Shattock

We have a 10yr old daughter we weaned onto GFCF and was on it for about

3 months when hubby says lets try taking her off. (General concensus for an

older child is you must be on 6-12 months). At first she was thrilled to have

her regular food back. I was amazed that there wasn't a huge reaction. It

could be that her gut had started to heal some???? But as the weeks went on,

her behavior started to deteriorate (but she started sleeping through the

nights for about 2 weeks. However, she was on antibiotics when we took her

off the diet, and I suspect she started sleeping because antibios gave her a

yeast problem). Then she started back on some behaviors that I haven't seen

in two years (a certain " raminess of knocking things off shelves, taking

things out of other people's shopping carts). Her hyperactivity definately

increased. Head-banging also increased. Then she started not sleeping at

night again (this is normal for her), but when she woke up she was very

wild--thrashing, screaming, unconsoleable. The last two weeks there has been

an increase in biting (I also discovered the GABA I had picked up at the HFS

had a stimulant in it that is not in kirkman's) and I have decided to put her

on respirdal, which is something I really wanted to avoid. I'm trying to get

our family doctor on board (not wholeheartedly, but at least enough to

validate the merits of trying the diet again, maybe he can help with some the

testing that insurance might pay for). My biggest challenge is the get hubby

on board as the diet is time-consuming, more expensive than a regular diet,

and often inconvient. We have also found a soy sensitivity (through

traditional allergy testing) which may be why she did not have huge

improvements for the three months she was totally on the diet.

Unfortunately, I did not document much when I had her on the diet, but I know

what a mother knows about her child's behavior. I have now started a

food/behavior diary as we look at the soy sensitivity, other supplements

we're trying, and hopefully we will try the diet again soon. Sorry so long.

In some literature at a seminar sponsored by Food Allergy

Network of PA Shattock is quoted:

...there are lowish levels of anti gliadin and anti casein antibodies

circulating in the blood of our children.

In the absence of continual gluten challenge they will diminish over

time and infrigements would not result in allergic type responses at all....

When a person goes GFCF the body takes the opportunity to dump these

things in the blood/urine again. That is why we see them in the urine for

some time afterwards and why GFCF adults do not go " cold turkey " and have

more drawn out but milder side effects. Little children do, more or less, go

" cold turkey " as they don't have these levels in their systems to make the

decrease more gradual....

One of the major milk peaks (beta casomorphin 1-7) almost disappears

from the peptide profiles within about two days after CF and re-appears just

as quickly when milk is reintroduced.....

Our most recent trail included 3 boys who had been gluten free for

at least two years. When gluten was re-introduced, one of the boys had a fit

the next day but it could well have been just coincidence. However he was

back GF the next day just in case. The other two showed no immediate effect

whatsoever but over a period of months the parents and teachers independently

reported increases in stereotypies, hyperactivity and poorer sleep patterns.,

I am not sure but I think they all went back to GF after a while.

Sorry so long...hope this helps

April in SE Pa, Simona's mom