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OK, now I'm confused. Are you saying that there is something more effective besides removing the gluten and casein that is probably causing leaky gut? I thought that WAS cutting edge research. What else is out there? Before you say "go to the archives", give me something to look for :)
In Reply to: Walt - cutting edge research for autism? posted by dfs on June 16, 2001 at 13:53:04:
Hi! I think that you may have it backwards. The casein and gluten don't cause the leaky gut, but the leaky gut causes the leakage of the peptides from the casein and gluten.
Walt can tell us more, and I just asked him a question in that first thread about this below, but I think he's saying you have to address healing the leaky gut most of all.
Picture it like this. If you are allergic to milk or wheat, you eliminate them completely and that prevents symptoms. But it doesn't cure the allergy. Same thing with LGS and food sensitivities, leaking peptides...
I think that if you SEE that eliminating casein and gluten from your son's diet makes a difference (really helps), then it's worth doing it but only as long as you understand that simple removal of same doesn't "heal" the leaky gut and he may develop NEW sensitivities to the foods that he will be eating more of now that he's eliminated G and C.
Walt's book page 73 says: "Obviously, we can identify which peptides are leaking and have the individual avoid those substances. That approach is the basis for most clinical ecologists' advice. Unfortunately, that means narrowing the experience the patient has of life. For example, if individuals start avoiding wheat and dairy, they will start eating something else to take their places. Since the immune system reacts more the more often there is exposure to any substance, soon the new food will cause the same symptoms. Eventually, the people find themselves living in a glass house, breathing filtered air and eating roasted platypus. In many instances, the benefits are still well worth the bother to the patient. However, an alternative is to improve the quality of the intestinal lining so there isn't so much leakage. The only thing found to do this reliably so far is for the patient to learn an effective relaxation response and practice it 20 minutes twice a day for the rest of their lives. In the meantime, one can improve the function of the gut somewhat by taking the correct digestive enzymes (what the gut should be making for itself), replacing the normal colonic bacteria, shortening the transit time (the time it takes for a substance to go from the mouth, through the gut, and out the anus), and treating any parasites (which further aggravate the leaks) that have set up housekeeping in the gut. The normal gut inhabitants create conditions that prevent the abnormal organisms from becoming established. However, once the wrong organisms are established, restoring the normal bacteria will not get rid of the baddies (partially because they create conditions that are conducive to their own survival). This approach has the advantage that the individual will experience a wider and wider exposure to life as opposed to the narrowing that is inevitable if the first approach is all that is done. Of course, the ideal is to combine both." [ref. "Health at the Crossroads" by Dean Black, PhD]
Hope this helps!!
In Reply to: Re: Walt - cutting edge research for autism? posted by kmd on June 16, 2001 at 16:06:44:
Yes, I did have this, if not backwards, a bit askew in my thinking. Thanks, kmd, for helping to straighten it :). My initial reservations about the sugar ingrediants in so many recipes for the GFCF diet as provocations for more "baddies" in the intestine seems to still hold true then. Giving him digestive enzymes, probiotics, and nystatin as well as being on the whole foods diet is the long term solution?
It seems an entire industry has grown up around the gfcf diet, tests to see what peptides are leaking through the gut and what supplements to take, but NOWHERE have I seen Walt's approach discussed, which as he says gets at the deeper issues to resolve things.
Question - how do you teach SR to a three year old?
In Reply to: Re: Walt - cutting edge research for autism? posted by dfs on June 17, 2001 at 10:36:05:
Probiotics are very good, that is something I would start with (something I did in the past and it seemed to help). I've never used digestive enzymes or nystatin with my son. I've read a lot about nystatin being used with autistic kids, and while it seems to make a difference for them (helps autistic symptoms), from the cases I've read they end up needing to stay on it forever. This tells me that Walt is right - don't treat the parasites (candida with nystatin) before you have healed the LGS.
Just by doing the whole foods you are ahead of the game!!! Everything else you do will probably work better.
How to teach SR to a 3-year old... Well, there's a book called "Meditating with Children", but I think there are other good ways to help a young child discharge stored stress. Gentle swinging in a quiet environment, a relaxing lotion massage in a darkened room with gentle music, or just having him be in the room with you when you are meditating (he can pick up on your own relaxation). Many autistic kids enjoy visual stimulation, and I would bet that it brings them to alpha. For example, my son seems to go into a trance when he runs water at the sink (one of his obsessions). Bouncing gently up and down on a mini trampoline is also great for health and lymph drainage.
I hope this gives you some ideas, I'm sure you will come up with some great ones of your own as well! Also, have you looked into DMG and Super Nu-Thera yet? These made a HUGE difference for my son for a period of time (not anymore, but it is like they got him over some big developmental "humps" until he could hold that progress on his own and now doesn't need those things). For example, my son NEVER gave eye contact since birth. Within 24 hours of his first DMG, he stared into my eyes for the first time. I cried! His eye contact was completely dependent upon the DMG for a few years. When we gave it to him, we got eye contact. When we forgot a day, he gave no eye contact the next day. Even the therapists would notice the huge difference and ask me sometimes "did you forget his DMG yesterday?" (yes). Super Nu-Thera is a high-dose B6 with magnesium formula (balanced with other B vitamins) that was created specifically for autism. It too made a big difference with my son, but this time with attention span (huge increase) and social skills (he started interacting with his brother for the first time, etc.)
DMG and Super Nu-Thera information is available at the Autism Research Institute site. If you decide to try DMG, make SURE you get the individually foil-wrapped tablets that dissolve in the mouth (they are the best and he will like them). Any other type and he will have to know how to swallow a pill and I've heard that type doesn't work as well as the sublingual mouth dissolving ones anyway.
Good luck!
In Reply to: Re: Walt - cutting edge research for autism? posted by kmd on June 17, 2001 at 14:49:54:
kmd,
:) I got a mini-tramp, the "good" kind with real give in the mat, this week for me - guess who else loves it?!?!! And one of the best parts is, my mom found it at a thrift shop she volunteers at; they only wanted $2.50 for it!
OK, please bear with me as I think out loud, and jump in anywhere that I haven't got it right. As I'm sure you can attest to, a mom wants to do ANYTHING that will help her child, and from reading Karen Seroussi's book and gleaning what I can from the ANDI and associated websites, time seems to be of the essence here. I find it difficult to accept that my son is already too old to benefit from diet modifications. And I need to start somewhere. Since I've had such great results myself from the "great triumvirate" of diet, exercise and SR in just a few months time, I know this can work.
A) The leaky gut needs to be healed. Doing the Perfect Whole Foods Diet will help do that. I think I can convince my ex and his mother to do this, and they will probably have better luck than with the more restrictive GFCF diet. I will find a way for my child to relax, which is key to longterm, sustained results. Exercise is not a problem; dealing with his toddler energy is the problem! But if I don't go GF/CF, aren't I playing with fire by allowing the substances that may effect his system like opiates? I'm guessing that we will be seeing this generation of "recovered" autistic kids ten years from now having to deal with immune system issues that recur because their treatment addressed peptides but didn't heal the gut.
B) Which brings me to the blood or urine testing quandry. Which lab of the many does one choose to send to? Does one do both urine and blood to get the most pertinent information? How long does it take to get results? Why do some require a doc's sign off and other's don't? Once you've sent off a sample, in the meantime, what does one do about diet? If leaky gut is the issue, and if we've correctly established that doing the whole foods diet would be the best long term solution, then why test?
C) Supplements. I feel like this is key also, but they all have sugar of one kind or another to make them palatable for a child. How do I get around that and not throw off the diet? I would order them tomorrow but for that point. But I know he needs all this stuff! Aargh!!! Walt, I'm ready for a phone consultation for this. The BB will be offlimits soon for your very-well-earned vacation, and I can't let too many more days go by without resolving these concerns. Here's my email address: d_schanilec@hotmail.com
dfs, poster child for this bb
In Reply to: Re: Walt - cutting edge research for autism? Walt, I think I need a consult posted by dfs on June 17, 2001 at 17:46:02:
$2,50 for a "good" mini-tramp - WOW!! Lucky lady!
Don't worry too much about anyone saying it is "too late" for dietary intervention to work. They are talking about brain development stages, so it is best to get things going before the age of 3. But that does NOT mean that nothing works after the age of 3! You will see! There is nothing you can do about lost time anyway. Your son is so high functioning, you will see that he is going to do great. Keep notes on what he's doing now and compare them with a year from now - you will be shocked by his tremendous progress.
As far as whether to go GF/CF - Let me ask you this: Have you done a "trial" for at least 2 weeks straight of no casein and gluten? If so, did you notice a huge difference in him? Your answers to these questions determine what you should do. I say (and I think Walt would agree), that if you *know* that GF/CF makes a huge difference in your son's symptoms of autism, you should DO IT. But, while you are doing it, make sure you are working on healing his LGS so you don't have to do it forever. You don't want him ending up eating roasted platypus!
Urine testing - we did the urinary peptide test through AAL Labs. My son's test was negative for leaking peptides. I can't remember how long it took to get results, maybe 2 weeks or so I think. Whether or not a doctors script is needed, I never really thought about that. I guess it depends on the lab and whether or not they've determined that a doctor should be a part of the team in figuring out what to do with the test results.
MAKE SURE IF YOU ARE GOING TO TEST HIM FOR LEAKING CASEIN AND GLUTEN PEPTIDES, THAT HE HAS BEEN EATING THESE FOODS PRIOR TO THE TEST, OR THE RESULTS ARE MEANINGLESS!
I agree with you when you say "why test?" Truly, that is what it comes down to. We tested because we hadn't come across this site yet, etc., and we wanted a way to determine whether or not we had to eliminate C and G.
Supplements - if he is doing whole foods, he shouldn't need supplements unless you want to do the DMG (no sugar added there) or Super Nu-Thera (this does have sugars and still tastes bad). You can get Vitamin C powders with no sugar added also. Is he eating well - lots of veggies, etc?
In Reply to: Re: Walt - cutting edge research for autism? Walt, I think I need a consult posted by kmd on June 17, 2001 at 21:46:20:
I think as Walt would put it, my son eats "crap" at the moment. Since I've been on the perfect whole foods diet myself, what he eats at my house is liberal whole foods, but I haven't gone to the tough love part of serving only vegetables and whole grains to get him where he needs to be. Plain yogurt, peanut butter, applesauce, brown rice, oatmeal, milk, soymilk, bread, Beth's granola bars, Beth's pumpkin pie filling that I bake by itself and call it Teletubby custard, potato chips that are only potatoes, sunflower oil and salt, kamut "corn"flakes, prune juice, once in a while carrot, whole wheat noodles, Beth's mushroom barley soup. He eats fruit yogurt and banana alot at his dad's house, and probably chicken nuggets, some meat, probably white rice, and other things I'm not aware of. No candy, he's never been one to ask for it and we didn't offer it. At daycare he discovered cupcakes for birthday parties, and loves those.
Because the autism gurus say these kids are low in magnesium and B6 (like most of the general population, no?), I would want him to have supplements, like calcium especially if he's not drinking milk all the time. He's been off dairy products for a week now, so if I have him tested I need to start giving it back, eh? Another local mom told me it had to be in his system at least eight weeks in order for the test to be valid.
My mom didn't say and I didn't ask how much the tramp cost to send UPS :)
dfs
In Reply to: Re: Walt - cutting edge research for autism? Walt, I think I need a consult posted by dfs on June 17, 2001 at 17:46:02:
Hi Guys,
Let me jump in here and tell you about a product made by Biotics to help heal a leaky gut. It's called NutriClear. The good thing about it is that it is in powder form and does not taste bad at all. I usually combine it with GamOctoPro which is a protein powder that contains Gamma Oryzonol and Octocosanol. You can even add a litte IAG (Arabinogalactans) to help boost the immune system.
I haven't tried this yet, but, if you mix this up in a blender, you may be able to add any other pills that the kids can't swallow into the mix.
Namaste',
Doc Kim
In Reply to: Re: Walt - cutting edge research for autism? posted by dfs on June 17, 2001 at 10:36:05:
Hik, dfs.
Pretty difficult without help. Fortunately help is available. Get a copy of Deborah Rozman's classic
"Meditating with Children" and let us know what you learn.
Walt
In Reply to: Re: Walt - cutting edge research for autism? Walt, I think I need a consult posted by dfs on June 18, 2001 at 07:52:23:
Hi, dfs.
I have tried to respond to your other questions elsewhere.
The elimination/provocation diet for Autism takes a lot longer that for other things because of the profound alteration in brain chemistry which has to at least partially heal to see changes in behavior.
I have not heard that it took 8 weeks but would not be astounded if that were true. My guess is that, depending on the individual, a month would not be unusual whereas 3 1/2 days to a week is usual for other symptoms.
Walt
In Reply to: Walt - cutting edge research for autism? posted by dfs on June 16, 2001 at 13:53:04:
Hi, dfs.
Go specifically to the archives for the reference about how to GET the most up to date references about autism research from Fundtional Medicine update; what it will likely cost, what (800) number to call and for which months.
Let us know what you learn.
Walt
In Reply to: Re: Walt - cutting edge research for autism? Walt, I think I need a consult posted by dfs on June 17, 2001 at 17:46:02:
Hi, dfs.
In order:
1. It is NEVER too late! Recently it has been discovered that the brain grows new neurones throughout life. We used to think that the brain stopped doing that in our early teenage years.
2. Listen to kmd about how to determine whether it is safe to discontinue the GF/CF part of the diet at this stage. See the June 17th, 2001 issue of the USA today insert in your local sunday newspaper for the awakening knowledge about LGS.
3. See my response to a later note.
4. Do not rush! This time it is time to press forward with all due deliberation so not only are you on track but are plugged into the cutting edge of world wide research. THAT is the fastest way to find the exact approach that will help YOUR child.
Hope this helps.
Walt
In Reply to: Re: Walt - cutting edge research for autism? Walt, I think I need a consult posted by dfs on June 17, 2001 at 17:46:02:
Hi, dfs.
In order:
1. It is NEVER too late! Recently it has been discovered that the brain grows new neurones throughout life. We used to think that the brain stopped doing that in our early teenage years.
2. Listen to kmd about how to determine whether it is safe to discontinue the GF/CF part of the diet at this stage. See the June 17th, 2001 issue of the USA today insert in your local sunday newspaper for the awakening knowledge about LGS.
3. See my response to a later note.
4. Do not rush! This time it is time to press forward with all due deliberation so not only are you on track but are plugged into the cutting edge of world wide research. THAT is the fastest way to find the exact approach that will help YOUR child.
Hope this helps.
Walt
In Reply to: Re: Walt - cutting edge research for autism? Walt, I think I need a consult posted by dfs on June 18, 2001 at 07:52:23:
Hey, your son eats GREAT compared to 98% of other kids in this population! He actually eats plain yogurt? Wow! The foods you mentioned sound like a good start, but I didn't see any veggies in the list at all ('cept carrots) - will he eat some?
Other suggestions, hmm - try almond butter and cashew butter (and of course the nuts themselves, unless he is high risk for nut allergies but you said he eats peanut butter), try sunflower seeds, corn, popcorn, try all veggies, try brown rice noodles (I think they're much better than whole wheat), perhaps natural cheeses would be good (they are considered "whole food", although I'm not sure dairy is great for any of us, but since he's not off milk yet anyway...), olive oil seems to be the healthiest oil, (it's all we use now), real butter is great, you may want to make pot roast until it is very tender and let him eat that, or chicken breasts cut into small chunks (turkey too).
As far as wanting him to have B6 and mag through supplements, the dose of B6 shown to work with autism is SO high that you can't get it anywhere except in the Super Nu-Thera formula. (Autism Research Institute has that info - try link below):
In Reply to: An idea posted by Doc Kim on June 18, 2001 at 08:48:56:
nmi
In Reply to: Re: Walt - cutting edge research for autism? Walt, I think I need a consult posted by kmd on June 18, 2001 at 16:43:47:
He will eat popcorn, almond butter [still wants to dip in and eat it by the handful :)], he isn't interested in meat, and veggies are a constant refusal, all I use now is olive oil too. I know it will take a major effort to get him to eat vegetables and whatever else he won't eat on his own now, and I want to choreograph that effort with whatever dietary intervention is called for. I've read that withdrawal and tantrums are assured for at least the first several days if not weeks on the gfcf diet, and I need to have a strong conviction that what I've decided to do is what is going to happen, otherwise I'll crumble. I could happily agree with my ex to serve him only whole foods and feel very confident in pulling that off successfully and that I'm doing something good for him.
My ex and I will be discussing this tomorrow; I've printed the article on DMG to show him, and hopefuly I've internalized enough of the leaky gut syndrome that I can explain it intelligently. Thanks for all your help!!!!!!!!!!
In Reply to: An idea posted by Doc Kim on June 18, 2001 at 08:48:56:
Thanks, Doc Kim. I know next to nothing about proteins and enzymes. Any suggesetions on a place to start learning about them so I can make informed choices that I'm comfortable with for my kid's health and maybe my own?
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