tag:blogger.com,1999:blog-33052404.post6854705327854103642..comments2024-02-13T21:31:57.980-04:00Comments on Facing Autism in New Brunswick: GFCF Diet Treatment for Autism Unsupported by EvidenceAnonymoushttp://www.blogger.com/profile/05838571980003579163noreply@blogger.comBlogger12125tag:blogger.com,1999:blog-33052404.post-84855435286539796972007-05-29T13:37:00.000-03:002007-05-29T13:37:00.000-03:00Hi Maya m -" My two opponents think that scientist...Hi Maya m -<BR/><BR/>" My two opponents think that scientists can detect real improvement only if it is not only spectacular but affecting the whole group, and they will be unable to detect an improvement only in a proportion of the group, partly because they are too stupid to figure out that this may be the case. I continue to disagree."<BR/><BR/>LOL! So now I'm stupid. (?) Maybe I'm too dumb to see it, so can you show me where I make the argument that scientists will only be able to validate dietary modifications if it is spectacular and affects the whole group? In fact, when I said, 'If you have a gut kid, dietary changes are likely to have an impact. If not, then likely not', doesn't this say that I feel the opposite? <BR/><BR/>In all seriousness, where have I made this argument? If you are going to be throwing the stupid tag around, you should be prepared to back it up. <BR/><BR/>"As for how harmful milk and other animal foods are, go and tell it to the people who cannot afford these products and whose children suffer from protein-energy malnutrition."<BR/><BR/>There are many, many ways to get a protein rich diet without taking dairy or animal products. Do you have any links on 'protein energy malnutrition' and the consequent need to take dairy or animal products? <BR/><BR/>"When I was young, the food prices were fixed by government and we were hearing this "argument" every time the government was about to increase them."<BR/><BR/>The government is still in the business of fixing food prices, btw. <BR/><BR/>In any case, the notion that animal protein is strongly correlated to cancers, auto immune disorders and heart disease isn't an isn't an 'argument'. It is backed by basic and applied science. <BR/><BR/><A HREF="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16578935&query_hl=12&itool=pubmed_docsum" REL="nofollow">Pub Med - Milk and Diabetes"</A><BR/><BR/><A HREF="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16407643&query_hl=15&itool=pubmed_docsum" REL="nofollow">Pub Med - Milk and Diabetes</A><BR/><BR/>There are many more but I get the feeling it won't matter. I recently finished a fascinating book called 'The China Study' which provides hundreds of references to the dangers of the western diet high in animal protein. I would recommend it to you. <BR/><BR/>The link you have provided for the Feingold diet on quackwatch is invalid. Perhaps you are 'just too stupid to figure out' how to put a link in? ROFL! <BR/><BR/>As far as Feingold, we are not explicity on it, but by staying with whole foods and very little processed foods we are more or less there by default. Instead of dyed and preserved appleauce, we eat apples. Instead of fruit 'drink' with high fructose corn syrup, we drink 100%' juice. Instead of twinkies, we make a cake with flour, eggs, sugar and leaveners. Do you honestly think this is a worse choice than twinkies, fruit 'drink', and canned applesauce? <BR/><BR/>What problem, exactly, do you have with eliminating sythentic dyes, colorings, sweeteners, and preservatives from a diet? Would you advocate children get more aspartame and more preservatives made from petroleum in their diet? The Fiengold diet is about fewer additives; I am genuinely at a loss as to why you might think that a diet with more preservatives would be a better choice for anyone, autistic or not. Just because a DAN! doctor recommended it once? <BR/><BR/>- pDAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-33052404.post-78506841492339441902007-05-23T04:43:00.000-03:002007-05-23T04:43:00.000-03:00Passiondrone, Ginger and I didn't differ in the op...Passiondrone, Ginger and I didn't differ in the opinion that some proportion of autistic children might benefit from GFCF diet. The difference was in opinion about the ability of science to detect this. My opinion is that if such an effect really exists, science can detect it (and, after more studies, will be able to find which children would benefit from the diet so that only they are put on it). My two opponents think that scientists can detect real improvement only if it is not only spectacular but affecting the whole group, and they will be unable to detect an improvement only in a proportion of the group, partly because they are too stupid to figure out that this may be the case. I continue to disagree.<BR/>"Cow milk and/or large amounts of calcium are not necessarily all that good for children; it has been linked to the development of diabetes and various auto immune disorders. Diets high in animal protein are also associated with greatly increased risk of cancer and heart disease."<BR/>I've never meant "large amounts", just the necessary amounts of calcium. As for how harmful milk and other animal foods are, go and tell it to the people who cannot afford these products and whose children suffer from protein-energy malnutrition. When I was young, the food prices were fixed by government and we were hearing this "argument" every time the government was about to increase them. I don't want to read it again, so I lower my banner and leave the discussion. Just one link more - it's about Feingold diet, not GFCF diet, but it is also recommended by DAN! doctors and the phenomena associated with it are the same. http://www.quackwatch.org/01QuackeryRelatedTopics/Victims/feingold.htmlMaya Mhttps://www.blogger.com/profile/10877457709995369246noreply@blogger.comtag:blogger.com,1999:blog-33052404.post-28822373050385113262007-05-22T14:02:00.000-03:002007-05-22T14:02:00.000-03:00Hi Maya M - Restricting diet isn't something that ...Hi Maya M - <BR/><BR/>Restricting diet isn't something that can be done three times a day; especially for the child that wants their favorite foods back. It must be an all day effort. Who is keeping the child from getting into something at school, or between meals? Everyone has to be on board; teachers, therapists, and parents. For 16 year olds, which were included in the group, this means either removal of offending foods from the house, or hawkish attention from parents. <BR/><BR/>As far as creating a group of participants none of whom have any communication skills, it seems like you are mucking with the pool of patients in order to get to a place where they can be blinded. I'm all for understanding the phenotypes of autism out there, but it seems there would be better mechanisms to group when testing for dietary changes than only non communicative children may participate. <BR/><BR/>"Which is LOL, because if the presumed mechanism of "exorphine" action is correct, the effect of gluten and casein will be dose-dependent, not of the type "everything or nothing"."<BR/><BR/>This is EXACTLY why giving everyone soy milk, and some getting 5% cows milk would constitute a poor study. You are the one that came up with this 'simple' mechanism to blind the particpants, not me. If you agree that it is a poor way to perform a study, we are in agreement. <BR/><BR/>"What troubles me is the strong anti-scientific attitude of most such parents, the conviction that scientists are unable to observe, to draw conclusions, to figure out what parents figure out, e.g. that it may be only a proportion of autistic children who will benefit from the diet."<BR/><BR/>My original posting says the following:<BR/><BR/>"If you have a gut kid, dietary changes are likely to have an impact. If not, then likely not. "<BR/><BR/>Likewise, Ginger said: <BR/><BR/>"But NOT all our kids."<BR/><BR/>Does this not imply that only a proportion of children will benefit from dietary changes (or any intervention)? <BR/><BR/>"Do these parents really believe that all people making science are round fools? Or their insistence that "stupid-scientists-will-never-figure-out-the-true-and-magnificent-effects-I-am-observing" reflects their subconscious doubts? "<BR/><BR/>Many of these parents have experienced doctors being dead wrong about their child's condition for a long time. The only time they have seen improvements is when they tried things that they were told by their regular pediatricians have no scientific backing. It does tend to jade you. <BR/><BR/>As I've said previously, the proof for us was in the diapers. We couldn't be absolutely sure if Luke was looking at us more, or babbling more. But, we were absolutely convinced his stools were more regular and more well formed. There are no number of peer reviewed studies that can be published that will convince me that I am imagning a more regular, better formed stool when my son does not eat certain foods. Having someone who hasn't been changing those diapers for three years tell you differently can start to get a little frustruating. <BR/><BR/>"While waiting for this research, I am not against parents trying this diet, they just have to consult a dietician so that to compensate for withdrawal of milk products from the child's diet."<BR/><BR/>Cow milk and/or large amounts of calcium are not necessarily all that good for children; it has been linked to the development of diabetes and various auto immune disorders. Diets high in animal protein are also associated with greatly increased risk of cancer and heart disease. <BR/><BR/>- pDAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-33052404.post-4718590402852357852007-05-22T04:18:00.000-03:002007-05-22T04:18:00.000-03:00I haven't read the actual paper. And I have regard...I haven't read the actual paper. And I have regarded just one opportunity - that the autistics participating in the study are fully able to communicate. If they are young children, or even older but non-verbal and unable to write, and if their parents are not present at meals, it absolutely doesn't matter what they mention. You can give soy milk to the experimental group and 100% real milk to the control group and even if the children do mention, it doesn't matter, because they won't tell.<BR/>As for the "95% GFCF diet", this just doesn't hold water. Nobody says, "Reduce the gluten and casein in your child's food. Give him bread or pasta at breakfast only, then use rice or potatoes as a carbohydrate source. Give him milk or cheese at breakfast only, then use meat or eggs as protein source and add calcium supplement if needed." All sources about GFCF diet I've read say something like, "Eliminate ALL gluten and casein, down to molecules, because even a miniscule amount will bring all symptoms back." Which is LOL, because if the presumed mechanism of "exorphine" action is correct, the effect of gluten and casein will be dose-dependent, not of the type "everything or nothing".<BR/>I don't say that GFCF diet is all without effect, in fact I am inclined to think it might help some autistics. But we need research to be done before making any claims. While waiting for this research, I am not against parents trying this diet, they just have to consult a dietician so that to compensate for withdrawal of milk products from the child's diet. What troubles me is the strong anti-scientific attitude of most such parents, the conviction that scientists are unable to observe, to draw conclusions, to figure out what parents figure out, e.g. that it may be only a proportion of autistic children who will benefit from the diet. Do these parents really believe that all people making science are round fools? Or their insistence that "stupid-scientists-will-never-figure-out-the-true-and-magnificent-effects-I-am-observing" reflects their subconscious doubts?Maya Mhttps://www.blogger.com/profile/10877457709995369246noreply@blogger.comtag:blogger.com,1999:blog-33052404.post-49126721258829446312007-05-18T15:16:00.000-03:002007-05-18T15:16:00.000-03:00Hi Mayam - LOL! In all of your very 'simple' exam...Hi Mayam - <BR/><BR/>LOL! <BR/><BR/>In all of your very 'simple' examples, the control group would get much, much less gluten and casein than in a standard diet, would they not? It seems, you advocate testing a 100% GF/CF diet, and a 95% GF/CF diet. <BR/><BR/>Imagine a drug trial where one group got 100% of the drug, the control group got 95% drug and 5% filler; then was proclaimed as a gold standard study. I imagine you'd jump all over such an absurdly designed study, as you should. <BR/><BR/>On the other hand, perhaps this is exactly what the researchers have done! (Do you have a copy of the actual paper?) If so, it might provide a reason why the parents were unable to tell which diet their children were on; as well as why so many reported improvements even in the 'control' group. <BR/><BR/>I am still convinced you have never tried a GF/CF 'pizza', no matter how much added flour was applied. <BR/><BR/>ROFL!<BR/><BR/>- pDAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-33052404.post-91764859539599603482007-05-18T05:44:00.000-03:002007-05-18T05:44:00.000-03:00It is very easy. Give soy milk to both groups and ...It is very easy. Give soy milk to both groups and add a spoon of real milk to the control group's cups. Order GFCF pizza for everybody and add some real flour to the control group's pizzas.<BR/>My God, at the 3rd millenium, science can deal with a challenge more serious than this one! As far as I know, parents of the children in the only controlled trial of GFCF diet were unable to tell whether their child was in the experimental and control group (in fact, they all thought the children were in the experimental group and reported improvement).Maya Mhttps://www.blogger.com/profile/10877457709995369246noreply@blogger.comtag:blogger.com,1999:blog-33052404.post-43677394357069552682007-05-16T13:20:00.000-03:002007-05-16T13:20:00.000-03:00Hi Mayam - "I am deeply disturbed by opinions such...Hi Mayam - <BR/><BR/>"I am deeply disturbed by opinions such as the two above comments. They basically say that science isn't an efficient way to reach knowledge, or at least not as efficient as anecdotal observations done by biased lay people. Although science hasn't so far offered much to help autistic children, I don't think such opinions about its merit will help, either." <BR/><BR/>You basic assessment of my statement is way, way off the mark. <BR/><BR/>There are some things that will simply will not be double blind / placebo testable. Drastic dietary changes are one of those. <BR/><BR/>I would make a million dollar bet that you have never, ever eaten a GF/CF 'pizza'. They are horrible. There is absolutely NO WAY you could blind the particpants as to if they were eating real cheese, or fake cheese. <BR/><BR/>In all seriousness, do you believe you could give stop giving a person real milk, start giving them soy milk, and think they would not be able to tell the difference? Have you ever tried pasta comprised of quinoa and corn? Short of tounge removal, there is way you could blind anyone who has eaten real pasta as to which they were eating. <BR/><BR/>Don't believe me? Try some GF pasta one night if you dare. Then come back and tell me double blind placebo studies could work for GF/CF or other dietary interventions. <BR/><BR/><BR/>- pDAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-33052404.post-16772770565028050582007-05-15T10:15:00.000-03:002007-05-15T10:15:00.000-03:00At http://www.autism-watch.org/about/bio2.shtml, y...At http://www.autism-watch.org/about/bio2.shtml, you can read the touching story of a doctor who got involved with GFCF diet and other alternative therapies in a desperate wish to help his two autistic sons. At http://www.greatplainslaboratory.com/conference/Laidler.html I found an older document by the same author, written while he still believed in the diet's efficiency.Maya Mhttps://www.blogger.com/profile/10877457709995369246noreply@blogger.comtag:blogger.com,1999:blog-33052404.post-76045863055697782202007-05-14T04:30:00.000-03:002007-05-14T04:30:00.000-03:00I am deeply disturbed by opinions such as the two ...I am deeply disturbed by opinions such as the two above comments. They basically say that science isn't an efficient way to reach knowledge, or at least not as efficient as anecdotal observations done by biased lay people. Although science hasn't so far offered much to help autistic children, I don't think such opinions about its merit will help, either.<BR/>BTW what is wrong in a common approach to cases of mental retardation due to different causes? In some respects, it is relevant. These children are put together and taught together in special education classes, regardless of the cause. Some approaches, including ABA, are expected to help all of them.Maya Mhttps://www.blogger.com/profile/10877457709995369246noreply@blogger.comtag:blogger.com,1999:blog-33052404.post-68168483517650804542007-05-12T10:29:00.000-03:002007-05-12T10:29:00.000-03:00We have tried many interventions over the last thr...We have tried many interventions over the last three years for our son, stuck with the ones that worked, abandoned the ones that didn't. If there was ever one that I WISHED didn't work it was the GFCF diet. It is a huge pain and it is expensive.<BR/><BR/>But...<BR/><BR/>Day two on the diet he began making eye contact with us and day three he began to answer to his name, and it was all up hill from there. In the last three years he has been off the diet several times which resulted in disaster. <BR/><BR/>Add to all that the fact that when he gets a hold of something he should not have, he reverts to the chronic constipation that he had for the first two years of his life before the diet.<BR/><BR/>So in our three years study with a test group of one, the diet works conclusively.<BR/><BR/>Autistic interventions that do not work, do not stay alive in the autistic community very long. It is so pervasive because it works for most of our kids.<BR/><BR/>But NOT all our kids.<BR/><BR/>The question that researchers should be studying is not DOES it work for autistic kids, but which autistic kids does it work for and why?<BR/><BR/>Part of the problem with autism research is that we KNOW that are between two and five different physical syndromes that exist that all result in the behavioral symptoms of autism. Clumping all those kids together and trying to find causes and cures is like putting together a group of adults with severe mental retardation to study them for treatments, but not differentiating between those who have downs syndrome and those who were in serious car accidents when they were in law school.<BR/><BR/>Some autism is from birth, some is regressive. Around 80% of autistics have large heads higher IQ and those are 8 to 1 boys. About 20% have normal heads, lower IQs and those have a 1 to 1 boy girl ratio.<BR/><BR/>These are clearly different physical disorders that have been mixed together. Until we get a physical diagnostic criteria for each and separate the "Autisms" then we will keep wasting money on silly studies that ask the wrong questions.Ginger Taylorhttps://www.blogger.com/profile/04200286625735078479noreply@blogger.comtag:blogger.com,1999:blog-33052404.post-64888988547117125552007-05-09T17:03:00.000-03:002007-05-09T17:03:00.000-03:00If you have a gut kid, dietary changes are likely ...If you have a gut kid, dietary changes are likely to have an impact. If not, then likely not. If you are in the business of changing diarheah diapers every day for a year, then suddenly you are not when the wheat and milk are removed, what does it matter that it is 'unproven'. What's more, it is easy to prove again; give your child a few grilled cheese sandwhiches and see what happens. Try this expirement a couple of times and no number of double blind studies telling you it doesn't work will impact your decision making. <BR/><BR/>The idea of a double blind / placebo study seems patently absurd in terms of implementing gf/cf; is that real milk I'm getting, or soy milk? Is that real cheese, or fake cheese? Did Johnny steal some cookies at school? How on Earth could they possibly blind the parents towards which food group they were assigned? <BR/><BR/>- pDAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-33052404.post-6290967565312847592007-05-09T11:07:00.000-03:002007-05-09T11:07:00.000-03:00I think it is high time for several double-blind, ...I think it is high time for several double-blind, placebo-controlled trials of GFCF diet including larger groups of children. I wonder why scientists haven't done this yet. I saw at the CDC site that they are currently recruiting patients for such a study.<BR/>However, even if disproved, I am sure that the diet will still be practised by many parents and recommended by DAN! doctors.<BR/>I was surprised to see that most DAN! doctors still recommend secretin, which (unlike the GFCF diet) has been thoroughly studied and its supposed beneficial effect has been disproved.<BR/>As for what parents are saying - just look at http://www.autismwebsite.com/ARI/treatment/form34q.htm! You see that whatever diet is tried, roughly half of parents say it helps.Maya Mhttps://www.blogger.com/profile/10877457709995369246noreply@blogger.com