Karyn Seroussi's Talk
Your pediatrician may say the only treatment is behavior modification. 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 be wrong? Chronic diarrhea as well as ear infections are associated with milk. She talked about the opiate research by Paul Shattock and Paul 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 autistics 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:
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 dramatically
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 Lisa Lewis' child had none of this."
Natural gut "flora" keeps yeast in check.
Healthy immune system 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 food list to ANDI or the GFCF Diet 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.
Submitted by Karen from the autismandenzymes Yahoo Group.
3: November 23, 2001