ExtraDAN: Karyn Seroussi's talk

[Guest guest]

Karyn Seroussi – How, Why and What to Try

[Karyn did have slides but they are not in the conference book. The

description on GFCF diet from the ANDI site is in the book. I am

probably missing some of the slide info, maybe someone else can fill

in any holes. Kd.]

Your pediatrician may say the only treatment is behavior

modifiaction. Just because a treatment is not proven does not mean it

doesn't work. GFCF diet must be done right. Only some treatments will

work well with only certain subgroups. Some kids are not only

behaviorally a problem but are physically ill as well. As long as the

person isn't mentally retarded what could possibly wrong? Chronic

diarrhea as well as ear infections are associated with milk. She

talked about the opiate research by Shattock and Reichelt

and the opiate effects theory. The opioid activity is lost if the

food is fully digested. The opiod peptides are a problem only when

the food is partially digested. Lots of theories but no one is sure

what causes this (insufficient digestion). Just something happens in

the body which allows incomplete digestion.

She discussed what a leaky gut was: cells of the gut wall are

compromised. It is common but is rarely tested for. A leaky gut

allows for the passage of bacteria, toxins and food. Vitamins and

minerals pass too quickly to be absorbed, and all this sets the stage

for multiple food allergies.

Karyn Seroussi said, " It is my hope that someday we will be able to

go off the diet, but we will do it if necessary. " She said her son is

bugging her to let him off the diet and have other stuff. Also, a

second book/volume of Special Diets for Special Kids will be out in a

few weeks. [i think she meant this will be a second book of

completely new GFCF recipes, not just a new printing or update of the

previous book.]

She there is a pattern of autistic excretions: not all kids respond

to diet or gastro problems, but a lot do. About 1/3. Autism diagnosis

is based on behavior at this time. Although people get there by

different routes, the diagnosis comes from observable behavior. At

this point we just don't know what to do for which subgroups.

Some problems come from the thinking this is a food allergy, or a

hard-wired genetic disability. These factors may not cause autism but

do cause extra symptoms.

There are three different ways to have a problem with milk or wheat

1. True Allergy - Usually IgE mediated, sinuses, hives, breathing,

allergy shots.

2. Food Intolerance - Usually IgG mediated, discomfort, GI distress,

other symptoms

3. " Peptidurea " - leaky gut, proteins don't fully break down, opiate

peptides in bloodstream affect brain.

Oddly enough, many autists have all three of these things. There is

overlap. Karyn's son has a true allergy to wheat, but not to milk.

Karyn said that if your doctor, teacher, or someone else is not very

receptive to the diet, you can state the following:

" Although autism has been considered to be untreatable, early studies

in Europe have shown that SOME forms of autism are metabolic – and

caused by the inability to break down certain proteins. Removing

these proteins has shown dramatic improvement in ONE subgroup of

children with autism. Children like mine do not have the luxury of

waiting for the results of double-blind, placebo studies. Since it

appears to be a safe intervention, I would like to experiment with

removing three proteins from my child's diet, and I would really

appreciate your support. "

A child who is in pain screams. Having autism does not cause

screaming. Maybe milk masks the pain. Maybe pain from a fecal

impaction. Some of these kids are in real pain. No clear cut way to

tell which kids will reaction to environment insults.

Reasons given why someone can't go on diet:

1. The kids are picky, picky, picky. – worse reason of all because it

indicates a problem/addiction.

Just say " no " to pizza. Living with the diet is hard. Living with an

autistic child is harder. At least the diet gets easier. If you have

an older child, there are other considerations. A younger child

should try it. Do not know which kids won't respond.

Commercially available testing is not reliable enough.

At least 1/3 show improvement, some dramaticly

The kids most likely to respond:

-Early excessive antibiotic use

-Late onset autism after normal development

-Insensitivity to pain

-Constipation or diarrhea

-Very limited diet.

and then she said " however ' child had none of this. "

Natural gut " flora " keeps yeast in check.

Healthy immune sytem maintains balance.

Antibiotics can throw off this balance.

When thrown off, yeast proliferates.

Excessive yeast waste products may be absorbed from the gut & wreak

havoc on the central nervous system (CNS).

A pattern emerges:

A child is genetically predisposed to improper immune response.

Some load triggers abnormal immune response.

Child is ill may take antibiotics.

Candida overgrowth causes gut damage.

Some kids will swing to other foods once the " fix " has been

eliminated. Karyn's son took a few years to really expand his diet.

He would go through periods of refusing something he previously ate

without problem.

Little kids like little foods – less sugar, stevia

Do what is necessary at the beginning to get them on the diet – worry

about balance nutrition later. The important point is that they get

the peptides out first. So if they will only eat chips and GFCF

crackers, let them.

Prepackaged foods are expensive, but handy in the beginning.

Mixes are easier than baking from scratch, but are more economical

that buying prepared commercially prepared. [she was making the point

of the trade-offs between convenience and expense.]

GFCF foods may still have gobs of sugar/fat/additives and

preservatives, so just be aware of this and keep an eye on the entire

diet over the long run.

How long must I do this diet?

We are not sure…we need to understand underlying mechanism better. In

one out of five cases, the child never gets worse going off the diet

(no enzymes). About 4 out of 5 times, the child will regress after a

while. A couple of times, Karyn's son ate something inappropriate and

did not react. Maybe her son's gut has healed? She is not sure but

does not intend to challenge it completely at this time. Her son

asked when he can go off the diet.

There is a HUGE difference between being GFCF 98% and GFCF 100%.

For gluten reactions give – digestive enzymes, alka-seltzer gold,

activated charcoal, benadryl (but don't use all the time) [alka

seltzer gold and benadryl are not to be used long term. Pepcid AC

wasn't mentioned].

Families of autistic children seem to be immune challenged families…

so a better diet can help the entire family. Milk can be very good

for people without this problem, but not for this particular group.

Keep utensils separate and clean. Being 100% GFCF means all

contamination including preparation surfaces, utensils, skin care,

cleaning supplies, etc. If you touch a spoon from something not GFCF

into something GFCF, you have contaminated the entire pot.

Siblings may respond as well:

Feingold program is very helpful

Overlapping spectrum disorders [don't know what this refers to,

sorry, I think like a relative has ADD]

Never to late to try – many people write saying they see amazing

differences even into their twenties.

Eliminate one thing at a time. Then look at yeast? or phenols?

Karyn has been able to rotate things back in such as soy, chocolate

and corn. Corn was the third worse offending food for her son. She is

being cautious though, but it is getting better, and he can have more

and more of previously offending foods.

Digestive enzymes (only showed EnzymAid, SerenAid - nothing on

Peptizyde)

Absolutely keep a bottle of digestive enzymes in the house. Be

committed. Don't give poison along with the antidote. You can

certainly give the enzymes at every meal and see if it helps.

When is it OK to quit?

If you are really doing it right…do it for 3 months (although some

say 6). Give a big glass of milk and see what happens. If nothing

happens, go on to next thing [that is, leave the diet behind as

a " tried this " ]. You can send your food diary or foodlist to ANDI or

the gfcfdiet.com site and someone will check it to see it they find

something you did not know about (or maybe a product that was okay

before, has been changed).

She said she is looking forward to the day the DAN conference is

obsolete. Every subtype of autism is treatable but more work needs to

be done.