Guest guest Posted April 2, 2002 Report Share Posted April 2, 2002 I think this statement by Andy below in quotations is totally biased and unfair in respect to the GFCF diet. 60% is a very high percentage, and well worth the shot of trying the diet and committing to it for a while. A 10% increase in positive behaviors would be enough for me and for alot of other families to move forward with it. Why are you so against other therapies for Autistic children except for chelation? (I ask this with a very soft tone) Roxanne **************************************************************************** " Any clinical indications for a GF-CF diet other than that the kid is impaired? Since it is a big commitment on the family's part it would be worth avoiding trying it on the 40 % it doesn't help. " Andy c q ce c Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2002 Report Share Posted April 2, 2002 I am surprised Andy that you would say to try to avoid something because it is a big commitment. So is the four hour protocol and you have said till you are blue in the face that the commitment is worth it and maybe very necessary. When you have sick kids, there are many areas of true and deep commitment and particularly in the diet. I have far too many autistic kids in the community I live in and a great number of them are doing the diet (30 plus families in my area).... We do it not because it is fun...its a pain in the ass....but we have all seen tremendous benefits in our children that are undeniable and inspire our comittment to trudge ahead. The problem is, just as you have seen with the four hour protocol, many parents are very greatful for any permission they get to not do the four hour protocol OR to not do the diet. Seems like less work. But in my opinion, a sick kid is never less work. The positive things I have seen from my child due to the diet are astounding and undeniable just as you would feel about chelation. Diet is part of the puzzle in my opinion. Maybe, I hope, chelation will solve that problem one day!! The biggest gains we have seen in my child have been due to 1. diet 2. chelation 3. yeast tx 4. supplements. All tremendously important and work together to create a child who has improved motor skills, improved language skills, SLEEPS THRU THE NIGHT (thank you God), now feels pain, is here with us on this planet, doesnt wake up in abdominal pain every single night anymore, he wont grow up being in pain the rest of his life like some adult autistics say they do.....I believe the diet does that for him. Come so far. Thank you for all your help Andy , I hope you understand my point on this. [ ] GFCF DIET 60% increase in positive signs... I think this statement by Andy below in quotations is totally biased and unfair in respect to the GFCF diet. 60% is a very high percentage, and well worth the shot of trying the diet and committing to it for a while. A 10% increase in positive behaviors would be enough for me and for alot of other families to move forward with it. Why are you so against other therapies for Autistic children except for chelation? (I ask this with a very soft tone) Roxanne **************************************************************************** " Any clinical indications for a GF-CF diet other than that the kid is impaired? Since it is a big commitment on the family's part it would be worth avoiding trying it on the 40 % it doesn't help. " Andy c q ce c Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2002 Report Share Posted April 2, 2002 > I think this statement by Andy below in quotations is totally biased and > unfair in respect to the GFCF diet. I think Roxanne should put her posts in a temporary file and wait 24 hours to think about them so she won't get nastygrams like this back from me. If she read the post and thought about it she would not be responding this way. > 60% is a very high percentage, I agree. There are still a lot of people covered by 40%. > and > well worth the shot of trying the diet and committing to it for a > while. I absolutely disagree with the implication people should roll the dice if they don't have to. I don't think it is appropriate to tell people to waste their lives trying stuff that might not work. Telling people to try it because it MIGHT work is appropriate only if we have no way of telling whether it will work or not beyond giving it a try. Please do note that I tell people to give chelation a try just to see if it will work when I really don't know how to tell otherwise. I was simply asking if anyone would provide real knowledge instead of emotional turmoil so we could have some idea how to save the 40% it isn't going to work for a lot of time and trouble. This list is about knowledge, not emotional turmoil. There are lots of places we can go on the net to get turmoil - this list is unique in the knowledge it provides. > A 10% increase in positive behaviors would be enough for me and > for alot of other families to move forward with it. I don't disagree. This is still not relevant to why you got really upset when I asked the reasonable question of how we can tell which 60% will benefit and which 40% won't. > > Why are you so against other therapies for Autistic children except for > chelation? If you think that I think you need remedial reading lessons. It is the LAST thing I have ever said on list. As with chelation, where people whose kid's tests don't indicate that it will help or whose kids don't respond need to move on and find out what will work for their kid, the GFCF diet is one of those things that works for some but not all. It would be really nice to be able to tell who it is going to work for so they are encouraged strongly to do it while others don't waste their time on something that isn't going to work for them. > (I ask this with a very soft tone) > > Roxanne > > ********************************************************************** ****** > > " Any clinical indications for a GF-CF diet other than that the kid is > impaired? Since it is a big commitment on the family's part it would > be worth avoiding trying it on the 40 % it doesn't help Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2002 Report Share Posted April 3, 2002 > I am surprised Andy that you would say to try to avoid something because it is a big commitment. A more careful reading of what I said would indicate I think it would be nice IF THE PEOPLE WHO IT WASN " T GOING TO WORK FOR could avoid it. >So is the four hour protocol and you have said till you are blue in the face that the commitment is worth it and maybe very necessary. Let's compare apples to apples here. IF you have to chelate your kid, the 4 hour protocol is worth it and should be tried. Most people do NOT have to chelate their kids (since most people have NT kids). I explain how to do tests to tell. I do NOT go blue in the face telling people whose kids clearly don't need chelation that they should just try the 4 hour protocol. I only talk about the 4 hour protocol to the people whose kids CLEARLY DO respond to chelation as demonstrated by them getting sicker on some OTHER protocol. Getting sicker on an 8 hour protocol is a compelling indication to try the 4 hour protocol. I do NOT say that all autistic children should chelate just to see if it works. I say they should get some simple tests and chelate if and only if the tests indicate it is worth doing. I was simply asking if anyone knew what way there was to do the same thing with the GFCF diet - figure out who it had a good chance of working for and who it didn't so as to enhance the odds. >When you have sick kids, there are many areas of true and deep commitment and particularly in the diet. I have far too many autistic kids in the community I live in and a great number of them are doing the diet (30 plus families in my area).... We do it not because it is fun...its a pain in the ass....but we have all seen tremendous benefits in our children that are undeniable and inspire our comittment to trudge ahead. Which means your children were in the 60% that benefitted. I am NOT asking for a reason these people shouldn't do it. I am asking how to figure out which kids WON'T benefit, since it does no good to do it to them if they don't benefit and as you express well and know better, it IS a big commitment. >The problem is, just as you have seen with the four hour protocol, many parents are very greatful for any permission they get to not do the four hour protocol OR to not do the diet. I am not asking for some idiotic kind of permission like the idea that pharmacokinetics don't matter, or can be pulled out of someone's hat instead of the literature as apparently was done to justify 8 hour chelation. I am asking whether there is any way to identify the 40% who don't respond to GFCF so that their parents can use all that effort to do something else that MIGHT work. >Seems like less work. But in my opinion, a sick kid is never less work. Correct. Which means if you have the parents do something that doesn't work, they might not have the effort left to do the thing that WILL work later. It's important to try to start with things that work. If it wasn't, doctors wouldn't bother doing lab tests, examining you or taking history. They'd just prescribe off the cuff when they saw how you looked walking in the door and tell you to try something else if you came back later because it didn't work. I'm asking if anyone has any idea how to " get it right the first time " instead of making every parent with an autistic kid try every possible intervention. >The positive things I have seen from my child due to the diet are astounding and undeniable just as you would feel about chelation. Diet is part of the puzzle in my opinion. Maybe, I hope, chelation will solve that problem one day!! The biggest gains we have seen in my child have been due to 1. diet 2. chelation 3. yeast tx 4. supplements. All tremendously important and work together to create a child who has improved motor skills, improved language skills, SLEEPS THRU THE NIGHT (thank you God), now feels pain, is here with us on this planet, doesnt wake up in abdominal pain every single night anymore, he wont grow up being in pain the rest of his life like some adult autistics say they do.....I believe the diet does that for him. BTW, this tickles my intuition a bit about hydrogenated fats. Are you excluding them from his diet? No shortening, margarine, fast food fries, etc? Another big pain thing I know and if it is relevant we can talk about exactly the kinds of things it seems to do so you can decide. > Come so far. Thank you for all your help Andy , I hope you understand my point on this. > [ ] GFCF DIET 60% increase in positive signs... > > > I think this statement by Andy below in quotations is totally biased and > unfair in respect to the GFCF diet. 60% is a very high percentage, and > well worth the shot of trying the diet and committing to it for a > while. A 10% increase in positive behaviors would be enough for me and > for alot of other families to move forward with it. > > Why are you so against other therapies for Autistic children except for > chelation? (I ask this with a very soft tone) > > Roxanne > > ********************************************************************** ****** > > " Any clinical indications for a GF-CF diet other than that the kid is > impaired? Since it is a big commitment on the family's part it would > be worth avoiding trying it on the 40 % it doesn't help. " > > Andy > c > q > ce > c > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2002 Report Share Posted April 3, 2002 I somehow missed the first post on this so if I'm missing the point or repeating anything already said, sorry, but I thought I'd mention that at the autism biomedical conference I attended in San recently, the doctors talked in detail about the gfcf diet. They were all in adamant agreement that none of the commercially available tests were accurate in determining if a child would benefit from the diet. Only a trial of the diet was considered a good indicator to them. Another thing they were very clear about was that you need to also remove soy products as kids who have problems with gluten and caesin often have problems with soy since it has a similar chemical make-up or uses a similar enzyme as milk does (can't recall offhand and don't have my notes handy). Given the soy problem, this could explain some of the 40% who don't respond since folks often replace milk with soy. They also said that rather than looking for improvement when things are removed, take it out and then add in back in a month or so and look for worsening when it's added back in. Apparantly, the effects of gluten/caesin are cumulative and building in many kids and the opiods stay around a long time so you don't always see an obvious burst of improvement when it's removed. This would certainly be true for my son and gluten. It was extremely subtle improvement when we removed it, almost undetectable but steady, slow improvement once off, then when we added it back in, he crashed and regressed horribly. However, when we removed milk, he had an obvious improvement. But then it's possible he had the double-whammy of allergy and intolerance with milk. It is a hard diet but given the large number of children who do benefit from it and the odds of it benefitting such a high number of autistic kids (a higher percentage than most therapies and other treatments), I personally think it is well worth the effort to at least try the diet for 3-4 months. Gaylen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 If someone had decided to not suggest the GFCF diet to me because of its difficulty or chance of it not helping I would not be alive today. Due to the undiagnosed symptoms of autism spectrum, when I was 20 I expected with certainty to be dead from suicide by the time I turned 30. I in fact planned it. The symptoms made me feel my life was worthless, too painful to experience.Yet the diet turned my life around. I could think properly. I could relate comfortably to people. I could work full time for the first time in my life! (I still have problems but chelating is working to help them in tandem with the diet and other therapies). I am now 34!! Of course because of this I am incredibly biased in favour of the diet and also of course it doesn't make my opinion dogma.Yet the reason for my bias should be worth something. Yes, the diet is hard, but you may not know what you are missing out on if you don't try it. Your child may never know peace without it. Chelation may fix everything, but it may not. Your child may never be able to ask for the diet or do it by themselves. And they may not be able to say to you once on the diet, " I feel so much happier " , because it may still leave them non-verbal. And as Gaylen says below it can take time for the effects to appear. It took months for me to settle down. Then of course it may not work for your child. BTW apologies for writing straight from the heart, I couldn't do it any other way, obviously. My prayers go out to who suggested the diet to me. I haven't seen her since to thank her. Boy, do I owe her. Nick > I somehow missed the first post on this so if I'm missing the point or > repeating anything already said, sorry, but I thought I'd mention that at the > autism biomedical conference I attended in San recently, the doctors > talked in detail about the gfcf diet. They were all in adamant agreement > that none of the commercially available tests were accurate in determining if > a child would benefit from the diet. Only a trial of the diet was considered > a good indicator to them. > > Another thing they were very clear about was that you need to also remove soy > products as kids who have problems with gluten and caesin often have problems > with soy since it has a similar chemical make-up or uses a similar enzyme as > milk does (can't recall offhand and don't have my notes handy). Given the > soy problem, this could explain some of the 40% who don't respond since folks > often replace milk with soy. They also said that rather than looking for > improvement when things are removed, take it out and then add in back in a > month or so and look for worsening when it's added back in. Apparantly, the > effects of gluten/caesin are cumulative and building in many kids and the > opiods stay around a long time so you don't always see an obvious burst of > improvement when it's removed. This would certainly be true for my son and > gluten. It was extremely subtle improvement when we removed it, almost > undetectable but steady, slow improvement once off, then when we added it > back in, he crashed and regressed horribly. However, when we removed milk, > he had an obvious improvement. But then it's possible he had the > double-whammy of allergy and intolerance with milk. > > It is a hard diet but given the large number of children who do benefit from > it and the odds of it benefitting such a high number of autistic kids (a > higher percentage than most therapies and other treatments), I personally > think it is well worth the effort to at least try the diet for 3-4 months. > Gaylen > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 Nick, I am sooooo very thrilled for you. I can't tell you the joy I felt when I read this post. I am so very happy for you. Best Regards, (not THE ). At 16:08 04/04/2002 +0000, you wrote: >If someone had decided to not suggest the GFCF diet to me because of its >difficulty or chance of it not helping I would not be alive today. > >Due to the undiagnosed symptoms of autism spectrum, when I was 20 I >expected with certainty to be dead from suicide by the time I turned 30. I >in fact >planned it. The symptoms made me feel my life was worthless, too painful to >experience.Yet the diet turned my life around. I could think properly. I >could >relate comfortably to people. I could work full time for the first time in >my life! (I >still have problems but chelating is working to help them in tandem with >the diet >and other therapies). I am now 34!! > >Of course because of this I am incredibly biased in favour of the diet and >also >of course it doesn't make my opinion dogma.Yet the reason for my bias should >be worth something. Yes, the diet is hard, but you may not know what you are >missing out on if you don't try it. Your child may never know peace >without it. >Chelation may fix everything, but it may not. Your child may never be able to >ask for the diet or do it by themselves. And they may not be able to say >to you >once on the diet, " I feel so much happier " , because it may still leave them >non-verbal. And as Gaylen says below it can take time for the effects to >appear. >It took months for me to settle down. > >Then of course it may not work for your child. > >BTW apologies for writing straight from the heart, I couldn't do it any >other way, >obviously. My prayers go out to who suggested the diet to me. I >haven't >seen her since to thank her. Boy, do I owe her. > >Nick > > > > I somehow missed the first post on this so if I'm missing the point or > > repeating anything already said, sorry, but I thought I'd mention that > at the > > autism biomedical conference I attended in San recently, the > doctors > > talked in detail about the gfcf diet. They were all in adamant agreement > > that none of the commercially available tests were accurate in > determining if > > a child would benefit from the diet. Only a trial of the diet was > considered > > a good indicator to them. > > > > Another thing they were very clear about was that you need to also remove >soy > > products as kids who have problems with gluten and caesin often have >problems > > with soy since it has a similar chemical make-up or uses a similar > enzyme as > > milk does (can't recall offhand and don't have my notes handy). Given the > > soy problem, this could explain some of the 40% who don't respond since >folks > > often replace milk with soy. They also said that rather than looking for > > improvement when things are removed, take it out and then add in back in a > > month or so and look for worsening when it's added back > in. Apparantly, the > > effects of gluten/caesin are cumulative and building in many kids and the > > opiods stay around a long time so you don't always see an obvious burst of > > improvement when it's removed. This would certainly be true for my son > and > > gluten. It was extremely subtle improvement when we removed it, almost > > undetectable but steady, slow improvement once off, then when we added it > > back in, he crashed and regressed horribly. However, when we removed >milk, > > he had an obvious improvement. But then it's possible he had the > > double-whammy of allergy and intolerance with milk. > > > > It is a hard diet but given the large number of children who do benefit > from > > it and the odds of it benefitting such a high number of autistic kids (a > > higher percentage than most therapies and other treatments), I personally > > think it is well worth the effort to at least try the diet for 3-4 > months. > > Gaylen > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 Nick, Thank you so much for writing this as it seems hard for people to understand what people on the diet are saying about it. It is easier to resist something that sounds difficult. I personally HATE,and I mean that word, hate to cook and feel extremely uncreative with food. The first few months of GFCF, no hydrogenated oils, no additives, ,no preservatives, no high fructose corn syrup etc etc (and now soy free) seemed difficult to me--like okay, I am stressed out. But I took each day one at a time and then realized that now I am going to the grocery store and just making different brand choices, ,etcand buying the same foods every week just as I did before. They may be made by a diiferent company etcbut they are just as good. And my whole family is healthier for it. I was able to take my asthmatic daughter off her steroidal and now all meds. My autistic son is doing beautifully and has been profoundly changed by the diet. A few months ago, I read a book written by an autistic man and he wrote of the pain he experienced everyday. He would only eat pasta and pizza. All other foods repulsed him. The poor man needed this diet. My son, I hope wont have to live the rest of his life in pain and not be able to express it to me until he is older or never know that others dont always hurt like he does because he doesnt even know that is possible. My son is happier, healthier now. The only thing, the ONLY thing I regret is not doing the diet sooner. I am so glad that you found the diet, took the leap and tried it and that it has kept you here among us today. Health and happiness to you, [ ] Re: GFCF DIET 60% increase in positive signs... If someone had decided to not suggest the GFCF diet to me because of its difficulty or chance of it not helping I would not be alive today. Due to the undiagnosed symptoms of autism spectrum, when I was 20 I expected with certainty to be dead from suicide by the time I turned 30. I in fact planned it. The symptoms made me feel my life was worthless, too painful to experience.Yet the diet turned my life around. I could think properly. I could relate comfortably to people. I could work full time for the first time in my life! (I still have problems but chelating is working to help them in tandem with the diet and other therapies). I am now 34!! Of course because of this I am incredibly biased in favour of the diet and also of course it doesn't make my opinion dogma.Yet the reason for my bias should be worth something. Yes, the diet is hard, but you may not know what you are missing out on if you don't try it. Your child may never know peace without it. Chelation may fix everything, but it may not. Your child may never be able to ask for the diet or do it by themselves. And they may not be able to say to you once on the diet, " I feel so much happier " , because it may still leave them non-verbal. And as Gaylen says below it can take time for the effects to appear. It took months for me to settle down. Then of course it may not work for your child. BTW apologies for writing straight from the heart, I couldn't do it any other way, obviously. My prayers go out to who suggested the diet to me. I haven't seen her since to thank her. Boy, do I owe her. Nick > I somehow missed the first post on this so if I'm missing the point or > repeating anything already said, sorry, but I thought I'd mention that at the > autism biomedical conference I attended in San recently, the doctors > talked in detail about the gfcf diet. They were all in adamant agreement > that none of the commercially available tests were accurate in determining if > a child would benefit from the diet. Only a trial of the diet was considered > a good indicator to them. > > Another thing they were very clear about was that you need to also remove soy > products as kids who have problems with gluten and caesin often have problems > with soy since it has a similar chemical make-up or uses a similar enzyme as > milk does (can't recall offhand and don't have my notes handy). Given the > soy problem, this could explain some of the 40% who don't respond since folks > often replace milk with soy. They also said that rather than looking for > improvement when things are removed, take it out and then add in back in a > month or so and look for worsening when it's added back in. Apparantly, the > effects of gluten/caesin are cumulative and building in many kids and the > opiods stay around a long time so you don't always see an obvious burst of > improvement when it's removed. This would certainly be true for my son and > gluten. It was extremely subtle improvement when we removed it, almost > undetectable but steady, slow improvement once off, then when we added it > back in, he crashed and regressed horribly. However, when we removed milk, > he had an obvious improvement. But then it's possible he had the > double-whammy of allergy and intolerance with milk. > > It is a hard diet but given the large number of children who do benefit from > it and the odds of it benefitting such a high number of autistic kids (a > higher percentage than most therapies and other treatments), I personally > think it is well worth the effort to at least try the diet for 3-4 months. > Gaylen > > > Quote Link to comment Share on other sites More sharing options...
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