Re: update on gluten confession

[Guest guest]

My son was on Creon for 5 mo or so, last year. I didn't see much change, but

then, he's never been a gfcf responder either, although his gut appears to be

leaky as a sieve. Someone told me that Creon is designed mostly to help with

digestion of fats, and that a number of other enzymes are 'broader' and

designed more for peptides, proteins etc. Peptizyde and Zyme-prime by Houston

come to mind. I believe Kirkman has some that are also more specifically for

this (Enzimaid perhaps, or their newer ones, not sure). These are all

available without a prescription.

Hope this helps.

Terri

At 08:22 PM 10/11/01 -0700, you wrote:

>' DAN prescribed Creon. Anyone have any

>experience with this prescription? The allergist

>wanted me to use this if I wanted to do any further

>challenges to his diet, and we used the Creon today

>for the first time. He experienced his very first

>bowl of real macaroni and cheese. I about cried. He

>went on this diet when he was 9 months old, so he

>never really had any of the foods that we avoid. I am

>so thankful for this diet. Even though it has been

>hard work this past year, it has all been worth it. I

>will cautiously try to make his diet more " normal " . I

>never thought I would try any enzymes on him, but

>after absolutely no reaction when he ate half a

>package of crackers last week, I felt it was worth a

>try. If things don't work out, I won't hesitate to go

>completely GFCF again, but so far today, he has been a

>complete angel. Usually we see reactions within a few

>hours. Overnight we will have a better indication.

>Any time we had a gluten accident, he always woke up

>in the middle of the night with severe stomache cramps

>and gas. Nothing yet (crossing my fingers). We will

>be GFCF during the days that we are chelating, because

>our DAN said not to use Creon during DMSA treatments.

>I wanted to share with you guys, you've all been there

>for me in dealing with this diet, I want to give you

>all hope. Keep in mind we've been GFCF for 1 year,

>but we started so early with him (9 months). I guess

>there's a time and place for everything.

>

>

>=====

>

>

>__________________________________________________

>

[Guest guest]

Why did your DAN said not to use Creon during DMSA treatments?

Kym

update on gluten confession

' DAN prescribed Creon. Anyone have any

experience with this prescription? The allergist

wanted me to use this if I wanted to do any further

challenges to his diet, and we used the Creon today

for the first time. He experienced his very first

bowl of real macaroni and cheese. I about cried. He

went on this diet when he was 9 months old, so he

never really had any of the foods that we avoid. I am

so thankful for this diet. Even though it has been

hard work this past year, it has all been worth it. I

will cautiously try to make his diet more " normal " . I

never thought I would try any enzymes on him, but

after absolutely no reaction when he ate half a

package of crackers last week, I felt it was worth a

try. If things don't work out, I won't hesitate to go

completely GFCF again, but so far today, he has been a

complete angel. Usually we see reactions within a few

hours. Overnight we will have a better indication.

Any time we had a gluten accident, he always woke up

in the middle of the night with severe stomache cramps

and gas. Nothing yet (crossing my fingers). We will

be GFCF during the days that we are chelating, because

our DAN said not to use Creon during DMSA treatments.

I wanted to share with you guys, you've all been there

for me in dealing with this diet, I want to give you

all hope. Keep in mind we've been GFCF for 1 year,

but we started so early with him (9 months). I guess

there's a time and place for everything.

=====

__________________________________________________

[Guest guest]

I can tell you quite specifically that our DAN doc did NOT tell us not to do

Creon during chelation... I can't think of why these things would be a conflict

with each other. Anyone?

Terri

At 10:18 PM 10/11/01 -0700, you wrote:

>Why did your DAN said not to use Creon during DMSA treatments?

>

>Kym

>

>

> update on gluten confession

>

>

>' DAN prescribed Creon. Anyone have any

>experience with this prescription? The allergist

>wanted me to use this if I wanted to do any further

>challenges to his diet, and we used the Creon today

>for the first time. He experienced his very first

>bowl of real macaroni and cheese. I about cried. He

>went on this diet when he was 9 months old, so he

>never really had any of the foods that we avoid. I am

>so thankful for this diet. Even though it has been

>hard work this past year, it has all been worth it. I

>will cautiously try to make his diet more " normal " . I

>never thought I would try any enzymes on him, but

>after absolutely no reaction when he ate half a

>package of crackers last week, I felt it was worth a

>try. If things don't work out, I won't hesitate to go

>completely GFCF again, but so far today, he has been a

>complete angel. Usually we see reactions within a few

>hours. Overnight we will have a better indication.

>Any time we had a gluten accident, he always woke up

>in the middle of the night with severe stomache cramps

>and gas. Nothing yet (crossing my fingers). We will

>be GFCF during the days that we are chelating, because

>our DAN said not to use Creon during DMSA treatments.

>I wanted to share with you guys, you've all been there

>for me in dealing with this diet, I want to give you

>all hope. Keep in mind we've been GFCF for 1 year,

>but we started so early with him (9 months). I guess

>there's a time and place for everything.

>

>

>=====

>

>

>__________________________________________________

>

[Guest guest]

I didn't ask why. My son is 20 months old, so maybe

he thought it would be just too much on his little

system. When you think about it, possibly the Creon

would break down the DMSA like it does food, and would

make it useless, or possibly the DMSA would neutralize

the Creon. Don't know. He did say that I could give

him his multivitamin, his CLO, and his probiotic, but

to avoid all other supplements while taking DMSA.

(only on the 3 days that's he's actually taking it,

not on the 11 days off.)

--- Terri Mykland wrote:

> I can tell you quite specifically that our DAN doc

> did NOT tell us not to do

> Creon during chelation... I can't think of why these

> things would be a conflict

> with each other. Anyone?

>

> Terri

>

> At 10:18 PM 10/11/01 -0700, you wrote:

> >Why did your DAN said not to use Creon during DMSA

> treatments?

> >

> >Kym

> >

=====

__________________________________________________

[Guest guest]

And how long have you been chelating?? I think that is also what makes a

difference.

And you often hear of people challenging the diet and experiencing horrible

symptoms and schizophrenic like behavior about three weeks into going off

the diet.

I wish you luck, hope you are very careful and think chelation is what

helps after a long period of GFCF.

Let me also add, you have to take quite a while and many measures to heal

these childrens guts before you can attempt this in my ever so humble

opinion.

Luckily your son was so young and did not have years of damage, unlike us

who started after our children were three or older etc. And they are

finding that many of these other biological treatments are not as effective

if one is not GFCF first. At this time, I have yet to hear of a DAN dr who

feels enzymes replace removing gluten and casein from the diet. We are not

there yet. Even Amy Holmes said she does not recommend people going off the

diet yet...they are still too uncertain. I hope this goes well for you

but I strongly advise others to proceed cautiously with such attempts

as I would rather being dealing with autism than schizophrenia too.

update on gluten confession

> ' DAN prescribed Creon. Anyone have any

> experience with this prescription? The allergist

> wanted me to use this if I wanted to do any further

> challenges to his diet, and we used the Creon today

> for the first time. He experienced his very first

> bowl of real macaroni and cheese. I about cried. He

> went on this diet when he was 9 months old, so he

> never really had any of the foods that we avoid. I am

> so thankful for this diet. Even though it has been

> hard work this past year, it has all been worth it. I

> will cautiously try to make his diet more " normal " . I

> never thought I would try any enzymes on him, but

> after absolutely no reaction when he ate half a

> package of crackers last week, I felt it was worth a

> try. If things don't work out, I won't hesitate to go

> completely GFCF again, but so far today, he has been a

> complete angel. Usually we see reactions within a few

> hours. Overnight we will have a better indication.

> Any time we had a gluten accident, he always woke up

> in the middle of the night with severe stomache cramps

> and gas. Nothing yet (crossing my fingers). We will

> be GFCF during the days that we are chelating, because

> our DAN said not to use Creon during DMSA treatments.

> I wanted to share with you guys, you've all been there

> for me in dealing with this diet, I want to give you

> all hope. Keep in mind we've been GFCF for 1 year,

> but we started so early with him (9 months). I guess

> there's a time and place for everything.

>

>

> =====

>

>

> __________________________________________________

>

[Guest guest]

,

has not started chelation yet. We are

working on getting prior authorization from our

insurance company to pay for the cherry flavored DMSA.

They are making an exception for us, as they would

not normally cover a product from Kirkmans. We have,

however, attempted to feed him sulfur-rich foods

whenever possible (although a baby will only eat so

much cabbage, asparagus, broccoli, etc., we didn't

have much luck with that at all). I think that

covering his mattress early in the summer has also

helped a lot, as well as not using antimony and

arsenic contaminated pajamas and sheets. He has had a

few months without that daily poisoning, so I'm sure

that his body has been able to get rid of some of the

poisoning since we've prevented daily exposure.

I totally agree that no one should expect to see the

results that we are seeing. We caught the peptide

issue so early, and he had so many allergies that had

already limited his diet, that his gut did not have

much healing to do, although we saw swift and brutal

reactions to infringements.

Be assured that I have not slowed down in my crusade

to expose the baby products inductry of poisoning our

children with antimony and arsenic. Hopefully sooner

than later, there will be recalls of these products

and more research into chelating these metals.

--- Todd Pilger wrote:

> And how long have you been chelating?? I think that

> is also what makes a

> difference.

>

> And you often hear of people challenging the diet

> and experiencing horrible

> symptoms and schizophrenic like behavior about three

> weeks into going off

> the diet.

>

> I wish you luck, hope you are very careful and

> think chelation is what

> helps after a long period of GFCF.

>

> Let me also add, you have to take quite a while

> and many measures to heal

> these childrens guts before you can attempt this in

> my ever so humble

> opinion.

>

> Luckily your son was so young and did not have

> years of damage, unlike us

> who started after our children were three or older

> etc. And they are

> finding that many of these other biological

> treatments are not as effective

> if one is not GFCF first. At this time, I have yet

> to hear of a DAN dr who

> feels enzymes replace removing gluten and casein

> from the diet. We are not

> there yet. Even Amy Holmes said she does not

> recommend people going off the

> diet yet...they are still too uncertain. I hope

> this goes well for you

> but I strongly advise others to proceed

> cautiously with such attempts

> as I would rather being dealing with autism than

> schizophrenia too.

>

>

=====

__________________________________________________

[Guest guest]

I would research this advise a little more because there is now strong

belief that it is important to give antioxidants (B's, A, E, C) and zinc

even during on days. That they will not interefere with the chelation and

may protect the body and make it a safer and more beneficial experience.

The DAN protocol talks about this as well. Are you using taurine? Another

good one.

RE: update on gluten confession

> I didn't ask why. My son is 20 months old, so maybe

> he thought it would be just too much on his little

> system. When you think about it, possibly the Creon

> would break down the DMSA like it does food, and would

> make it useless, or possibly the DMSA would neutralize

> the Creon. Don't know. He did say that I could give

> him his multivitamin, his CLO, and his probiotic, but

> to avoid all other supplements while taking DMSA.

> (only on the 3 days that's he's actually taking it,

> not on the 11 days off.)

>

>

>

> --- Terri Mykland wrote:

> > I can tell you quite specifically that our DAN doc

> > did NOT tell us not to do

> > Creon during chelation... I can't think of why these

> > things would be a conflict

> > with each other. Anyone?

> >

> > Terri

> >

> > At 10:18 PM 10/11/01 -0700, you wrote:

> > >Why did your DAN said not to use Creon during DMSA

> > treatments?

> > >

> > >Kym

> > >

>

>

> =====

>

>

> __________________________________________________

>

[Guest guest]

My daughter is on Creon and is chelating. Her pre/post chelation showed metals

in the post urinalysis that weren't present in the pre urinalysis. I'd think

you would want the child on Creon if he needs it to protect his gut.

K.

| I didn't ask why. My son is 20 months old, so maybe

| he thought it would be just too much on his little

| system. When you think about it, possibly the Creon

| would break down the DMSA like it does food, and would

| make it useless, or possibly the DMSA would neutralize

| the Creon. Don't know. He did say that I could give

| him his multivitamin, his CLO, and his probiotic, but

| to avoid all other supplements while taking DMSA.

| (only on the 3 days that's he's actually taking it,

| not on the 11 days off.)