Re: Results of Testing - DMSA plus lipoic acid

[Guest guest]

<< The bad news is

that it is really dumping it into stool via bile where it is

much more trouble (and more $$) to test. >>

I wouldn't be all that certain of this unless you have replicated the urine

test results and got zero again.

Andy

[Guest guest]

<< What is the significance of this? Does it matter whether it comes out via

urine or stool, or is one more desirable than the other?

Nalini >>

You are correct that all that is important is that it come out.

It is of some academic significance to know how, especially so people don't

stop too early based on using the wrong test. But as long as you treat until

they are better it really isn't important which orifice the toxins use as

their exit.

Andy

[Guest guest]

What is the significance of this? Does it matter whether it comes out via urine or stool, or is one more desirable than the other?

Nalini

From: AndyCutler@...

Reply- egroups

Date: Mon, 14 Aug 2000 23:56:56 EDT

egroups

Subject: Re: [ ] Results of Testing - DMSA plus lipoic acid

<< The bad news is

that it is really dumping it into stool via bile where it is

much more trouble (and more $$) to test. >>

I wouldn't be all that certain of this unless you have replicated the urine

test results and got zero again.

Andy

[Guest guest]

<< Already done. This is the second urine test on the new LA dose. >>

A real effect then, presumably as you say.

If you have a serious need to enrich DDI out of curiosity repeating the

earlier dose or doing an unchelated or DMSA chelated 24 hour urine might be

interesting - or might be a way to spend $40 to get a zero...

The problem with original research is that it really is very hard to figure

out what is going on, and can be very expensive to try to and not manage.

Andy

[Guest guest]

Andy,

Already done. This is the second urine test on the new LA dose.

Amy

------------------ Reply Separator --------------------

Originally From: AndyCutler@...

Subject: Re: [ ] Results of Testing - DMSA plus lipoic

acid

Date: 08/14/2000 11:56pm

<< The bad news is

that it is really dumping it into stool via bile where it is

much more trouble (and more $$) to test. >>

I wouldn't be all that certain of this unless you have replicated the

urine

test results and got zero again.

Andy

[Guest guest]

Nalini,

It is only significant if you are looking for it somewhere. It makes

no difference which route it takes out the body - any route it

takes, as long as it is leaving, is great. But, if we ever need to

define an endpoint other than behavioral improvements for the

purposes of documentation for insurance purposes (for example), this

might be helpful. And, I want to know (just because I do!!) how

it is leaving and exactly what is leaving with it. BTW, the fecal

metals also reports copper!!

Amy

------------------ Reply Separator --------------------

Originally From: Nalini Sinanan <nalsin@...>

Subject: Re: [ ] Results of Testing - DMSA plus lipoic

acid

Date: 08/15/2000 05:12am

What is the significance of this? Does it matter whether it comes out

via

urine or stool, or is one more desirable than the other?

Nalini

From: AndyCutler@...

Reply- egroups

Date: Mon, 14 Aug 2000 23:56:56 EDT

egroups

Subject: Re: [ ] Results of Testing - DMSA plus lipoic

acid

<< The bad news is

that it is really dumping it into stool via bile where it is

much more trouble (and more $$) to test. >>

I wouldn't be all that certain of this unless you have replicated the

urine

test results and got zero again.

Andy

[Guest guest]

Amy,

Do you suppose this may mean that chelation is now improving the function

of the liver or gall bladder? The gall bladder is an organ that responds

to a sulfate signal through the cholecystokinin A receptor. If the movement

of sulfate through the brain had been inhibited by the presence of mercury

there (like in the choroid plexus, particularly), then removal of mercury

from its transporters might allow more sulfate-mediated action in the

brain, or really, anywhere in the CNS where the CSF was circulating.

There are sulfate-sensitive CCKA receptors in the brain as well as in the

alimentary canal, although the higher number of them are in the alimentary

canal, which is where the " A " came from. However, I have a paper showing

through immunocytochemistry where those CCKA receptors are in the brain (of

a rat, at least!)

There is a lot of neural crosstalk between brain and gut, so this signal

cannot be assumed to be only mediated locally in the gall bladder. I'll

have to dig out some work I did about four years as I've gotten a bit foggy

on whether this issue was addressed experimentally. I remember they used

CCKA blockers to verify that this receptor was responsible for gall bladder

action, but I don't remember if they blocked the neural link to see where

the signal was initiated.

Amy, have you been able to monitor a patient's stool and urine values

throughout the course of chelation so you could watch any changes in where

the mercury showed up that might occur through this shift to ALA? Are there

some other tests you could run in the stool to see if there has been a

general increase in liver or gall bladder function?

At 8/14/2000 -040011:30 PM, you wrote:

>Listmates,

>

>I have been following my son's lab values for urine toxic metals

>for a while on DMSA alone, and now on DMSA plus lipoic acid. For

>the first 8 or so rounds of DMSA plus lipoic acid I used a 50:50

>ratio of the two. Urine mercury was running pretty consistently

>around 4.8 to 5.2 mcg/g creatinine. For some strange reason, I

>decided to play around with the lipoic acid dose and increased it

>by 50% for the next 4 cycles. To my horror, urine mercury was

>zero the first time I tested it on this new dose. So, I figured

>the increased lipoic acid dose was probably dumping everything into

>stool (via bile), and tested fecal metals (also DDI). The results

>came back today. What a surprise. Yes, the mercury was there (a

>lot), but what really shocked me was the huge amount of arsenic

>coming out in stool. At the bottom of the report was a little

>note " arsenic rechecked " . I guess DDI was a little surprised too.

>So this confirms exactly what Andy has been saying - lipoic acid

>does a great number on arsenic.

>

>I am going to continue playing with the dose to try to get some

>data. So, the good news is that the addition of lipoic acid does

>a super job getting rid of mercury and arsenic. The bad news is

>that it is really dumping it into stool via bile where it is

>much more trouble (and more $$) to test.

>

>Amy

>

>

[Guest guest]

,

I have no idea what this means. Right now it is just raw data!!

Mike is the only patient I have been able to collect this kind

of data on so far, mainly because of the expense. I can't ask

another parent to pay for similar testing to this extent unless we

are really sure the testing will benefit the child.

Amy

------------------ Reply Separator --------------------

Originally From: Owens <lwo@...>

Subject: Re: [ ] Results of Testing - DMSA plus lipoic

acid

Date: 08/15/2000 09:09am

Amy,

Do you suppose this may mean that chelation is now improving the

function

of the liver or gall bladder? The gall bladder is an organ that

responds

to a sulfate signal through the cholecystokinin A receptor. If the

movement

of sulfate through the brain had been inhibited by the presence of

mercury

there (like in the choroid plexus, particularly), then removal of

mercury

from its transporters might allow more sulfate-mediated action in the

brain, or really, anywhere in the CNS where the CSF was circulating.

There are sulfate-sensitive CCKA receptors in the brain as well as in

the

alimentary canal, although the higher number of them are in the

alimentary

canal, which is where the " A " came from. However, I have a paper

showing

through immunocytochemistry where those CCKA receptors are in the

brain (of

a rat, at least!)

There is a lot of neural crosstalk between brain and gut, so this

signal

cannot be assumed to be only mediated locally in the gall bladder.

I'll

have to dig out some work I did about four years as I've gotten a bit

foggy

on whether this issue was addressed experimentally. I remember they

used

CCKA blockers to verify that this receptor was responsible for gall

bladder

action, but I don't remember if they blocked the neural link to see

where

the signal was initiated.

Amy, have you been able to monitor a patient's stool and urine values

throughout the course of chelation so you could watch any changes in

where

the mercury showed up that might occur through this shift to ALA? Are

there

some other tests you could run in the stool to see if there has been a

general increase in liver or gall bladder function?

At 8/14/2000 -040011:30 PM, you wrote:

>Listmates,

>

>I have been following my son's lab values for urine toxic metals

>for a while on DMSA alone, and now on DMSA plus lipoic acid. For

>the first 8 or so rounds of DMSA plus lipoic acid I used a 50:50

>ratio of the two. Urine mercury was running pretty consistently

>around 4.8 to 5.2 mcg/g creatinine. For some strange reason, I

>decided to play around with the lipoic acid dose and increased it

>by 50% for the next 4 cycles. To my horror, urine mercury was

>zero the first time I tested it on this new dose. So, I figured

>the increased lipoic acid dose was probably dumping everything into

>stool (via bile), and tested fecal metals (also DDI). The results

>came back today. What a surprise. Yes, the mercury was there (a

>lot), but what really shocked me was the huge amount of arsenic

>coming out in stool. At the bottom of the report was a little

>note " arsenic rechecked " . I guess DDI was a little surprised too.

>So this confirms exactly what Andy has been saying - lipoic acid

>does a great number on arsenic.

>

>I am going to continue playing with the dose to try to get some

>data. So, the good news is that the addition of lipoic acid does

>a super job getting rid of mercury and arsenic. The bad news is

>that it is really dumping it into stool via bile where it is

>much more trouble (and more $$) to test.

>

>Amy

>

>

[Guest guest]

In a message dated 8/15/00 8:44:13 PM, aplant@... writes:

<< We have investigated the number of B lymphocytes in mercury-exposed

workers. The study group consisted of 33 workers from a mercury-producing

plant, mean age 27 years and a mean exposure period 19 months. At

the time of testing and for the three previous months, the exposed

persons had urinary mercury levels below the currently accepted limit

of 50 micrograms g creatinine. A significant reduction in the number of B

lymphocytes was observed in the mercury-exposed individuals. We found

no correlation between B lymphocytes changes and urinary mercury

concentrations, length of exposure or age of the workers. >>

All mercury factory studies have to be viewed skeptically because of the

issue of self selection. The workers do choose to work there - they aren't

captured and enslaved. People who feel terrible go get a job somewhere else,

or get so sick they have to quit or they get laid off.

This self selection issue is actually the root of the mercury problem - our

modern guidelines are based on mercury factory studies in the '60's which on

careful analysis show conclusive evidence of worker self selection -

susceptible people don't work there. These studies establised the toxic

limit for the more resistant half of the population - kind of like

determining the average whisky tolerance of a study group composed of frat

boys and skid row bums, then pouring that much down everyone else and being

surprised when they get sick.

In the case of B cells and mercury, B cells make antibody. Some mercury

toxic people make too much antibody - and to everything - and that makes them

REALLY sick. These people get lots of B cells in response to mercury. They

aren't going to be able to work in a mercury factory for very long, so they

aren't in this study.

Andy

[Guest guest]

The immune problems that are caused by mercury poisoning are also

implicated in lymphoid nodular hyperplasia. (Wakefield coined the

term 'autistic enterocolitis' to describe the lymphoid nodular hyperplasia

that he found kids with autism).

1. Mercury exposed individuals show a significant reduction in

B-lymphocytes. My son has low B-lymphocytes

2. Patients with abnormal B-lymphocytes tend to develop lymphoid

nodular hyperplasia. My son has never been scoped.

3. People with a B cell deficiency have a high incidence of prolonged

Giardia lamblia infection. My son has had prolonged Giardia.

Pharmacol Toxicol 1997 Sep;81(3):130-3

B lymphocytes in mercury-exposed workers.

Queiroz ML, Dantas DC

Department of Pharmacology and Haemocentre, Faculty of Medical Sciences,

State University of Campinas, UNICAMP, Brazil.

We have investigated the number of B lymphocytes in mercury-exposed

workers. The study group consisted of 33 workers from a mercury-producing

plant, mean age 27 years and a mean exposure period 19 months. At

the time of testing and for the three previous months, the exposed

persons had urinary mercury levels below the currently accepted limit

of 50 micrograms g creatinine. A significant reduction in the number of B

lymphocytes was observed in the mercury-exposed individuals. We found

no correlation between B lymphocytes changes and urinary mercury

concentrations, length of exposure or age of the workers.

Ciba Found Symp 1977 Apr 26-28;(46):243-61

Gastrointestinal complications of immunodeficiency syndromes.

Katz AJ, Rosen FS

Patients with B cell deficiency have a high incidence of prolonged Giardia

lamblia infection of the gastrointestinal tract that causes symptoms of

malabsorption with villus flattening. The changes are reversible with

therapy directed against Giardia. There is a high incidence of pernicious

anaemia in patients with agammaglobulinaemia. Those with abnormal

B lymphocytes tend to develop lymphoid nodular hyperplasia.

Gastrointestinal disease is rare in boys with X-linked agammaglobulinaemia

when compared with adults with the 'acquired' or common variable form

of the disease. T cell deficiency results in intractable diarrhoea and monilial

infection of the gastrointestinal tract.

Have a great day ) ,

[Guest guest]

Some doctors believe mercury and other toxins in our kids are reeking

havoc, causing alot of the various disoders we see in our kids and we

need to detox them in order the help them. Some do not feel treating

the various digestive, immune, infectious, nutritional, etcetra

problems - is adequate to help the kids get well and they need detox

from metals and what ever else they may have in order to allow the to

improve. I believe this as I tried all the other stuff with some

improvements but they did not recover developmentally until I detoxed

them as well. Beverly

-- In egroups, Plant <aplant@g...> wrote:

> The immune problems that are caused by mercury poisoning are also

> implicated in lymphoid nodular hyperplasia. (Wakefield coined the

> term 'autistic enterocolitis' to describe the lymphoid nodular

hyperplasia

> that he found kids with autism).

>

> 1. Mercury exposed individuals show a significant reduction in

> B-lymphocytes. My son has low B-lymphocytes

>

> 2. Patients with abnormal B-lymphocytes tend to develop lymphoid

> nodular hyperplasia. My son has never been scoped.

>

> 3. People with a B cell deficiency have a high incidence of

prolonged

> Giardia lamblia infection. My son has had prolonged Giardia.

>

> Pharmacol Toxicol 1997 Sep;81(3):130-3

>

> B lymphocytes in mercury-exposed workers.

>

> Queiroz ML, Dantas DC

>

> Department of Pharmacology and Haemocentre, Faculty of Medical

Sciences,

> State University of Campinas, UNICAMP, Brazil.

>

> We have investigated the number of B lymphocytes in mercury-exposed

> workers. The study group consisted of 33 workers from a mercury-

producing

> plant, mean age 27 years and a mean exposure period 19 months. At

> the time of testing and for the three previous months, the exposed

> persons had urinary mercury levels below the currently accepted

limit

> of 50 micrograms g creatinine. A significant reduction in the

number of B

> lymphocytes was observed in the mercury-exposed individuals. We

found

> no correlation between B lymphocytes changes and urinary mercury

> concentrations, length of exposure or age of the workers.

>

> Ciba Found Symp 1977 Apr 26-28;(46):243-61

>

> Gastrointestinal complications of immunodeficiency syndromes.

>

> Katz AJ, Rosen FS

>

> Patients with B cell deficiency have a high incidence of prolonged

Giardia

> lamblia infection of the gastrointestinal tract that causes

symptoms of

> malabsorption with villus flattening. The changes are reversible

with

> therapy directed against Giardia. There is a high incidence of

pernicious

> anaemia in patients with agammaglobulinaemia. Those with abnormal

> B lymphocytes tend to develop lymphoid nodular hyperplasia.

> Gastrointestinal disease is rare in boys with X-linked

agammaglobulinaemia

> when compared with adults with the 'acquired' or common variable

form

> of the disease. T cell deficiency results in intractable diarrhoea

and monilial

> infection of the gastrointestinal tract.

>

> Have a great day ) ,

[Guest guest]

Besides just plain old curiosity as Dr Amy mentioned...either

scientific or mommyology ...there are also books and books on

preparing a good case for court. DOCUMENTATION is key. Get everything

in writing, have your witnesses etc....we shall perhaps all need the

paperwork and lab documentation before it is said and done.

Jeannie G.

> << Already done. This is the second urine test on the new LA dose.

>>

>

> A real effect then, presumably as you say.

>

> If you have a serious need to enrich DDI out of curiosity repeating

the

> earlier dose or doing an unchelated or DMSA chelated 24 hour urine

might be

> interesting - or might be a way to spend $40 to get a zero...

>

> The problem with original research is that it really is very hard

to figure

> out what is going on, and can be very expensive to try to and not

manage.

>

> Andy

[Guest guest]

Dear Amy,

My son has been gluten and casein free for two years. We just completed

Phase I of the mercury protocol and his mercury is down to 1 microgram/gram

creatinine (highest level was 4.9 micrograms/gram creatinine). We are now

ready for Phase II. Since we finished Phase I (and even before) he has been

wanting to try foods with gluten and gradually I have let him try some of

them, a little at first then more over time when I did not notice any

reaction. It seems that he is able to eat almost anything now without any

behavioral or physical reaction. We have not measured peptides however

clinically I see no adverse effects. I know it has been suggested that

mercury can inhibit the DPPIV enzyme which breaks down gluten so

theoretically at least the removal of mercury from the gut might reverse this

process. I wonder if anyone else has had a similar experience and your

thoughts on what we are seeing. I am keeping a close eye on this to see if

there is any worsening over time. We do not use any enzymes or any other

means of breaking down the foods. His stools have been normal and there is no

evidence of stomach pain, sleep disturbance, intoxicated laughing, or any of

the other problems we have noticed in the past. I would like to know if any

other parents who are chelating mercury were able to introduce more foods

without a reaction.

Thanks.

Ken Sokolski

[Guest guest]

Ken,

That is great!! I have been wondering about when in the course of

chelation it might be safe to try gluten and casein for the first

time in 3 years for my son. I had thought about giving him capsules

of sodium caseinate, then gluten separately, getting both pre and

post urine peptides done by Shattock. The only reason I was

going to use the capsules was that if the tests showed he still

couldn't have one or both, I didn't want him to get a taste of

something he might like but couldn't have.

Amy

------------------ Reply Separator --------------------

Originally From: KKSOKOLSKI@...

Subject: Re: [ ] Results of Testing - DMSA plus lipoic

acid

Date: 08/18/2000 11:59pm

Dear Amy,

My son has been gluten and casein free for two years. We just

completed

Phase I of the mercury protocol and his mercury is down to 1

microgram/gram

creatinine (highest level was 4.9 micrograms/gram creatinine). We are

now

ready for Phase II. Since we finished Phase I (and even before) he has

been

wanting to try foods with gluten and gradually I have let him try some

of

them, a little at first then more over time when I did not notice any

reaction. It seems that he is able to eat almost anything now without

any

behavioral or physical reaction. We have not measured peptides however

clinically I see no adverse effects. I know it has been suggested that

mercury can inhibit the DPPIV enzyme which breaks down gluten so

theoretically at least the removal of mercury from the gut might

reverse this

process. I wonder if anyone else has had a similar experience and your

thoughts on what we are seeing. I am keeping a close eye on this to

see if

there is any worsening over time. We do not use any enzymes or any

other

means of breaking down the foods. His stools have been normal and

there is no

evidence of stomach pain, sleep disturbance, intoxicated laughing, or

any of

the other problems we have noticed in the past. I would like to know

if any

other parents who are chelating mercury were able to introduce more

foods

without a reaction.

Thanks.

Ken Sokolski

--------------------------------------------------------------------<e

|-

Missing old school friends? Find them here:

1/8015/9/_/705339/_/966657598/

--------------------------------------------------------------------|e

>-

[Guest guest]

Ken

This is so encouraging! Would you mind telling me how long the first Phase

lasted and other postive/negative results you saw with .

We are getting ready to start chelation soon and besides the medical

knowledge, I'm looking for actual experiences.

Thanks,

Trudy

At 11:59 PM 08/18/2000 EDT, you wrote:

>Dear Amy,

>My son has been gluten and casein free for two years. We just

completed

>Phase I of the mercury protocol and his mercury is down to 1 microgram/gram

>creatinine (highest level was 4.9 micrograms/gram creatinine). We are now

>ready for Phase II. Since we finished Phase I (and even before) he has been

>wanting to try foods with gluten and gradually I have let him try some of

>them, a little at first then more over time when I did not notice any

>reaction. It seems that he is able to eat almost anything now without any

>behavioral or physical reaction. We have not measured peptides however

>clinically I see no adverse effects. I know it has been suggested that

>mercury can inhibit the DPPIV enzyme which breaks down gluten so

>theoretically at least the removal of mercury from the gut might reverse

this

>process. I wonder if anyone else has had a similar experience and your

>thoughts on what we are seeing. I am keeping a close eye on this to see if

>there is any worsening over time. We do not use any enzymes or any other

>means of breaking down the foods. His stools have been normal and there is

no

>evidence of stomach pain, sleep disturbance, intoxicated laughing, or any of

>the other problems we have noticed in the past. I would like to know if any

>other parents who are chelating mercury were able to introduce more foods

>without a reaction.

>

>Thanks.

>

>Ken Sokolski

>

>

>

>

[Guest guest]

Ken,

Could you say if your son also had yeast problems, and whether these have improved too, I am only asking you to say what you have observed it does not matter to me whether you tested this or not. I am just curious, as for my son this is a big problem in addition to the gluten/casein.

Thanks

Nalini

From: Amy Holmes <aholmesmd@...>

Reply- egroups

Date: Sat, 19 Aug 2000 10:39:10 -0400 (EDT)

egroups

Subject: Re: Re: [ ] Results of Testing - DMSA plus lipoic acid

Ken,

That is great!! I have been wondering about when in the course of

chelation it might be safe to try gluten and casein for the first

time in 3 years for my son. I had thought about giving him capsules

of sodium caseinate, then gluten separately, getting both pre and

post urine peptides done by Shattock. The only reason I was

going to use the capsules was that if the tests showed he still

couldn't have one or both, I didn't want him to get a taste of

something he might like but couldn't have.

Amy

------------------ Reply Separator --------------------

Originally From: KKSOKOLSKI@...

Subject: Re: [ ] Results of Testing - DMSA plus lipoic

acid

Date: 08/18/2000 11:59pm

Dear Amy,

My son has been gluten and casein free for two years. We just

completed

Phase I of the mercury protocol and his mercury is down to 1

microgram/gram

creatinine (highest level was 4.9 micrograms/gram creatinine). We are

now

ready for Phase II. Since we finished Phase I (and even before) he has

been

wanting to try foods with gluten and gradually I have let him try some

of

them, a little at first then more over time when I did not notice any

reaction. It seems that he is able to eat almost anything now without

any

behavioral or physical reaction. We have not measured peptides however

clinically I see no adverse effects. I know it has been suggested that

mercury can inhibit the DPPIV enzyme which breaks down gluten so

theoretically at least the removal of mercury from the gut might

reverse this

process. I wonder if anyone else has had a similar experience and your

thoughts on what we are seeing. I am keeping a close eye on this to

see if

there is any worsening over time. We do not use any enzymes or any

other

means of breaking down the foods. His stools have been normal and

there is no

evidence of stomach pain, sleep disturbance, intoxicated laughing, or

any of

the other problems we have noticed in the past. I would like to know

if any

other parents who are chelating mercury were able to introduce more

foods

without a reaction.

Thanks.

Ken Sokolski

--------------------------------------------------------------------<e

|-

Missing old school friends? Find them here:

1/8015/9/_/705339/_/966657598/

--------------------------------------------------------------------|e

>-

[Guest guest]

Ken, I am very interested in the casein/gluten reintro. issue

following chelation. My kids had multiple allergies and severe

asthma and eczema. I've been able to rapidly and without reaction

reintro many foods, but am worried and still avoiding casein and

gluten. I hope someone raises this (the DPPIV-mercury chelation

question) at the DAN conference and posts the info here or on the

other ggroup(intervention or recovered kids). This has been a source

of concern as my kids are starting school and it will be hard to keep

them gluten free!(birthdays, pizza days etctra). Beverly

> >Dear Amy,

> >My son has been gluten and casein free for two years. We just

> completed

> >Phase I of the mercury protocol and his mercury is down to 1

microgram/gram

> >creatinine (highest level was 4.9 micrograms/gram creatinine). We

are now

> >ready for Phase II. Since we finished Phase I (and even before) he

has been

> >wanting to try foods with gluten and gradually I have let him try

some of

> >them, a little at first then more over time when I did not notice

any

> >reaction. It seems that he is able to eat almost anything now

without any

> >behavioral or physical reaction. We have not measured peptides

however

> >clinically I see no adverse effects. I know it has been suggested

that

> >mercury can inhibit the DPPIV enzyme which breaks down gluten so

> >theoretically at least the removal of mercury from the gut might

reverse

> this

> >process. I wonder if anyone else has had a similar experience and

your

> >thoughts on what we are seeing. I am keeping a close eye on this

to see if

> >there is any worsening over time. We do not use any enzymes or any

other

> >means of breaking down the foods. His stools have been normal and

there is

> no

> >evidence of stomach pain, sleep disturbance, intoxicated laughing,

or any of

> >the other problems we have noticed in the past. I would like to

know if any

> >other parents who are chelating mercury were able to introduce

more foods

> >without a reaction.

> >

> >Thanks.

> >

> >Ken Sokolski

> >

> >

> >

> >

[Guest guest]

Beverly,

This would be my theory on what we could expect:

IF mercury were the ONLY problem that a child was having with his sulfate

chemistry (ie., if the only problem with the sulfate chemistry was that

mercury had been hindering the passage of sulfate from one compartment to

the next by binding to the transporter's SH groups, and also possibly

forming a false substrate) THEN restoring the sulfate metabolism to normal

levels by chelation might also restore the sulfated GAGs in the intestines

whose LOSS was what led to the leaky gut.

IF, then, there is no longer a peptiduria or proteinuria, and no evidence

of the immune system still responding to inappropriatly placed food

proteins, then POSSIBLY IN SOME CHILDREN, their chemistry MIGHT HAVE

started to be almost AS SAFE for gluten and milk as an ordinary child.

However, what is tricky is that there is a molecule that is critical to

cell chemistry that is cross-reactive to gluten, and if the immune system

previously LOST its ability to destroy autoreactive T cells that reacted to

gluten AND this molecule; AND, if there are memory cells around which would

still attack calreticulin (the gluten look-alike molecule) then any

exposure to gluten might set that attack in motion again wherever the

immune system detected the presence of gluten.

My own investigations regarding calreticulin and the other members of

intracellular team that makes up the new g protein scientists are calling

" H " , as well as other molecules that interact with this team that includes

calreticulin, suggests that there may be effects that gluten may trigger

anywhere the immune system is likely to come across gluten, including the

gut, where your food MUST travel if you are eating gluten.

Dr. Ken Fine, who is a local expert in celiac disease that even Mayo Clinic

refers people to, developed a new test that looks for reaction to gluten in

the stool, and his more sensitive test has determined that a huge percent

of people have gluten intolerance but have other chronic health problems

with very different labels from autism. Gluten still has many secrets.

For that reason, I'm not so sure gluten and milk are GOOD foods for anybody

(except human milk for human babies), but that's my own prejudice, and why

I might be reluctant myself to change back.

Anyway, there are a LOT of IF's in what I said. I do think that autism

very likely selects people who have OTHER problems with the chemical

pathway whose conclusion is sulfate, and that may explain why OUR children

were affected first, and not the kid down the block.

Now that more funding is becoming available, some of these issues may

FINALLY get the research attention they deserve, and the patient will be

the one who can benefit. Right now, we DEFINITELY see through a glass

darkly...

So PLEASE, those who have been successful with the g/f c/f diet, be careful

about any decision to change before this other research is done.

Anyway, I wish I could fast forward the " tape " and know today what we will

know after the research about this newly discovered g protein is farther

along, but right now, we know very little about what it does besides

provide the second messenger for alpha adrenergic receptors and for

oxytocin, the " social hormone " .

(not giving medical advice since I'm definitely NOT a doctor, but

hazarding a very cautious opinion to be cautious as someone who does

research in autism at the University of Texas in Dallas)

At 8/19/2000 +000011:49 PM, you wrote:

>Ken, I am very interested in the casein/gluten reintro. issue

>following chelation. My kids had multiple allergies and severe

>asthma and eczema. I've been able to rapidly and without reaction

>reintro many foods, but am worried and still avoiding casein and

>gluten. I hope someone raises this (the DPPIV-mercury chelation

>question) at the DAN conference and posts the info here or on the

>other ggroup(intervention or recovered kids). This has been a source

>of concern as my kids are starting school and it will be hard to keep

>them gluten free!(birthdays, pizza days etctra). Beverly

>

> > >Dear Amy,

> > >My son has been gluten and casein free for two years. We just

> > completed

> > >Phase I of the mercury protocol and his mercury is down to 1

>microgram/gram

> > >creatinine (highest level was 4.9 micrograms/gram creatinine). We

>are now

> > >ready for Phase II. Since we finished Phase I (and even before) he

>has been

> > >wanting to try foods with gluten and gradually I have let him try

>some of

> > >them, a little at first then more over time when I did not notice

>any

> > >reaction. It seems that he is able to eat almost anything now

>without any

> > >behavioral or physical reaction. We have not measured peptides

>however

> > >clinically I see no adverse effects. I know it has been suggested

>that

> > >mercury can inhibit the DPPIV enzyme which breaks down gluten so

> > >theoretically at least the removal of mercury from the gut might

>reverse

> > this

> > >process. I wonder if anyone else has had a similar experience and

>your

> > >thoughts on what we are seeing. I am keeping a close eye on this

>to see if

> > >there is any worsening over time. We do not use any enzymes or any

>other

> > >means of breaking down the foods. His stools have been normal and

>there is

> > no

> > >evidence of stomach pain, sleep disturbance, intoxicated laughing,

>or any of

> > >the other problems we have noticed in the past. I would like to

>know if any

> > >other parents who are chelating mercury were able to introduce

>more foods

> > >without a reaction.

> > >

> > >Thanks.

> > >

> > >Ken Sokolski

> > >

> > >

> > >

> > >

[Guest guest]

Ken, Thank you for your prompt and thoughtful response. I suspected

wheat, in general, was a problem food for many. I avoid it my self

as I reacted to it, when tested, as an allergen. I love it, but

since I have avoided it, I feel great and have no need for claritin.

I also lost alot of weight real easy! I appreciate your willingness

to share. Beverly

> > > >Dear Amy,

> > > >My son has been gluten and casein free for two years. We

just

> > > completed

> > > >Phase I of the mercury protocol and his mercury is down to 1

> >microgram/gram

> > > >creatinine (highest level was 4.9 micrograms/gram creatinine).

We

> >are now

> > > >ready for Phase II. Since we finished Phase I (and even

before) he

> >has been

> > > >wanting to try foods with gluten and gradually I have let him

try

> >some of

> > > >them, a little at first then more over time when I did not

notice

> >any

> > > >reaction. It seems that he is able to eat almost anything now

> >without any

> > > >behavioral or physical reaction. We have not measured peptides

> >however

> > > >clinically I see no adverse effects. I know it has been

suggested

> >that

> > > >mercury can inhibit the DPPIV enzyme which breaks down gluten

so

> > > >theoretically at least the removal of mercury from the gut

might

> >reverse

> > > this

> > > >process. I wonder if anyone else has had a similar experience

and

> >your

> > > >thoughts on what we are seeing. I am keeping a close eye on

this

> >to see if

> > > >there is any worsening over time. We do not use any enzymes or

any

> >other

> > > >means of breaking down the foods. His stools have been normal

and

> >there is

> > > no

> > > >evidence of stomach pain, sleep disturbance, intoxicated

laughing,

> >or any of

> > > >the other problems we have noticed in the past. I would like to

> >know if any

> > > >other parents who are chelating mercury were able to introduce

> >more foods

> > > >without a reaction.

> > > >

> > > >Thanks.

> > > >

> > > >Ken Sokolski

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Thank you . Beverly

> > > >Dear Amy,

> > > >My son has been gluten and casein free for two years. We

just

> > > completed

> > > >Phase I of the mercury protocol and his mercury is down to 1

> >microgram/gram

> > > >creatinine (highest level was 4.9 micrograms/gram creatinine).

We

> >are now

> > > >ready for Phase II. Since we finished Phase I (and even

before) he

> >has been

> > > >wanting to try foods with gluten and gradually I have let him

try

> >some of

> > > >them, a little at first then more over time when I did not

notice

> >any

> > > >reaction. It seems that he is able to eat almost anything now

> >without any

> > > >behavioral or physical reaction. We have not measured peptides

> >however

> > > >clinically I see no adverse effects. I know it has been

suggested

> >that

> > > >mercury can inhibit the DPPIV enzyme which breaks down gluten

so

> > > >theoretically at least the removal of mercury from the gut

might

> >reverse

> > > this

> > > >process. I wonder if anyone else has had a similar experience

and

> >your

> > > >thoughts on what we are seeing. I am keeping a close eye on

this

> >to see if

> > > >there is any worsening over time. We do not use any enzymes or

any

> >other

> > > >means of breaking down the foods. His stools have been normal

and

> >there is

> > > no

> > > >evidence of stomach pain, sleep disturbance, intoxicated

laughing,

> >or any of

> > > >the other problems we have noticed in the past. I would like to

> >know if any

> > > >other parents who are chelating mercury were able to introduce

> >more foods

> > > >without a reaction.

> > > >

> > > >Thanks.

> > > >

> > > >Ken Sokolski

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Dear Trudy,

The first phase lasted only about three months for us. We have been doing a

lot of homeopathy but I don't know if this shortened the initial chelation.

My son dumped a great deal of mercury from the beginning and then the amounts

tapered over successive chelations. Regarding gluten, I have not encouraged

him to eat gluten and he still is gluten free most of the time but he does

have " accidents " which in the past would cause him to go wild. When he has a

similar episode now, I do not notice any change in his behavior.

Ken

[Guest guest]

I would also be very cautious about reintroducing gluten or casein if your

child has had a good response to their removal. I am certainly not advocating

doing this just reporting what I have seen during occasional " accidents "

around here. That said it is interesting that all of these kids are different

and some of the highest functioning " autistic " kids I know do not observe a

gluten/casein free diet. I have wondered if this is because they have become

well enough not to need it or if they were truly a different subgroup. I

believe when the gut heals and the immune system heals (as the children get

better) they will not longer require gluten free diets. They do not have

celiac disease but do have leaky guts and enzymatic problems breaking down

gluten. When these problems are healed, gluten may no longer be a problem.

After this, the healthiest diet may be to rotate a number of foods with

gluten containing foods appearing periodically.

Ken