Guest guest Posted October 1, 2001 Report Share Posted October 1, 2001 ----- Original Message ----- Sent: Sunday, September 30, 2001 6:48 PM > We've had (3.9; PDD) gfcf for 6 1/2 months now. > Her gains have been slow and steady. But in the last > 2 weeks, she has done wonderfully! Her eye contact > and language have taken off. We are very excited. > My husband wants to challenge the diet and I'm going > along. He needs to know for sure if the diet is making > a difference. Will you please re-send the info on how > to go about challenging her on the diet? We want to > be very careful and considered in the way we go about > it. Thanks very much in advance! > H, mommy to 3 1/2 yrs, PDD; and 2 yrs, NT \/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\ \/\/\/\/\/ Dear and everybody: This is a complicated question, with a lot of individual variables. It can be very tricky to interpret what's going on in connection with diet infringements, because of the apparent beneficial short term effects of the opoid peptides, and the time delays caused by habituation / adaption. In addition to this, one must not forget the bell-shaped dose response curves. You can read more about these at www.advimoss.no/GFCF_results Several people have made the kind of experiment that you're considering. It is most important, if you go off the diet, to watch and describe as objectively and fully as you can, all the parameters that are likely to be affected in the short to medium run by a diet challenge. High on my list of priorities would be two peptide tests: One before the challenge, and one when there is reason to believe that the peptide levels have risen. When you make the challenge, be fairly decisive: Use a large quantity over a short period (1-2 meals) and then go back on the diet again, watching closely for any of the changes that might indicate a sensitivity. If you see nothing for a week, then make a bigger, longer challenge, and wait for ten days. This waiting period is important, because continued intake of offending protein might mask some of the effects of the first dose. WRITE DOWN what you see! Look up the GFCF diet survey (www.gfcfdiet.com), and have a good look at the infringement questionnaire and the infringement report. These will tell you what to look for. You might also find it worth while to read the infringement section of www.advimoss.no/GFCF_results . Remember that a diet challenge can easily produce a " false negative " result if the gut permeability has improved for a while, or if natural digestive enzyme production has picked up. Microbiology may also have changed for the better. These changes can be reversed when gluten or casein are reintroduced, but this doesn't necessarily happen at once: It can take several weeks. I don't have time to write a completely new and comprehensive answer to this, but I've pasted below the contents of some messages that I've written before, and that deal with various aspects of this question. Yours n Klaveness \/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\ \/\/\/\/\/ >My son Jack has been GFCF for almost 2 years now, and because we saw no >changes with the diet we decided in January to challenge it. However, right >around that time Jack ended up getting really sick (horrible sinus infection) >and became lethargic and mellow and refused to eat. We put him back on the >diet because we didn't know at first what was going on. After a few weeks >the sinus infection cleared up and he was back to his old happy, active self >again. > >Anyway, we just decided to reintroduce gluten and casein again. About 2 >weeks ago we added dairy into Jack's diet for one week - no changes. Then >last week we added gluten. Again, no negative changes. However in the last >few days he's refused to eat anything, even his beloved Mc's fries and >he is very mellow and sad seeming again. (Now he's a huge kid for 3 1/2 >years old - 56 lbs, so I am not too concerned about him losing weight) he >just seems so mellow and sad. I am not sure if he is not feeling well >(spring allergies are horrible right now and he is congested) or if it is the >diet. I just have never heard of any child having a reaction like that, >don't most kids WANT the foods they couldn't have and aren't most kids >affected by being more hyper or aggressive???? Jack won't eat ANY foods and >is just MELLOW - so unlike him. > >Needless to say I am getting very worried and would just like to hear some >other opinions on what might be going on. This looks like a classic " phase 1 " reaction = more or less exactly what could be expected. The hyperactive phase comes later, and gets more serious, the longer you manage to delay it by supplying more offending protein. Let me repeat from a previous posting: INTERPRETATION OF INFRINGEMENT EXPERIENCE PROBLEM NO. 1 IF your son has a peptide problem, then the intake of gluten or casein is likely to affect him in a way that is analogous to morphine intake. * Even if the opoid peptides are not exactly like morphine, the initial reaction is likely to have several aspects to it that the patient is liely to consider " positive " or " pleasant " . Drowsiness must be expected. * The unpleasantness comes later on, with habituation. Any drug addict should be able to tell you this. PROBLEM NO. 2 Autism is not in itself an illness. It's a name that's used to tell that the patient has a certain number of symptoms that make up the diagnostic criteria for autism. Many of these symptoms are NOT the direct result of the underlying illness. They are, rather, the effect of skewed development. Since the autistic symptoms are NOT direct results of exposure to milk or gluten peptides, but rather to the body's adaption to this exposure over time, such exposure will NOT normally result in immediate regression into " autistic " behaviour, in a patient that has been on the diet for a while. More probably, it will make the patient display a different subset of other symptoms related to the causes, rather than the effects of autistic development. OTHER PROBLEMS There are other problems as well, that affect the interpretation of diet infringement observations. I've sent a couple of other posts about this, you can look them up in the archives. I've also written about these problems at www.advimoss.no/gfcf_results.htm . One particularly puzzling problem is the bell-shaped dose response curve. An extract from the (yet) unfinished GFCF FAQ glossary: Bell-shaped dose response curve Imagine you drink one glass of wine. You get slightly fuzzy. Drink another, and the fuzziness increases. Drink a bottle or two, and you'll get roaring drunk. Add more bottles, and sooner or later you will die of alcohol intoxication. This is an example of a (more or less) linear dose response curve. Other substances, and among these you'll find the bioactive peptides, behave in a totally different manner. Up to a certain level, they don't cause much of a reaction at all. Beyond that point, an increased dose causes a sharp increase in response. Beyond a certain point, a further increase of the dose will cause a decrease of the total response. (Imagine being very drunk and then becoming nearly sober by drinking two bottles more). Some people would guess, at this point, that giving enormous quantities of gluten and milk might be just as effective as withdrawing them completely. These people may, in fact, be right, but only up to a point, and only for a while. While symptoms may be masked, damage will nevertheless occur, and adaption will cause the point of maximum dose/effect relationship to move. CONCLUSION Interpreting the effects of diet infringements is not easy. We need to stick together, and share information like this. You can do it through the GFCFkids diet survey (at www.gfcfdiet.com) Yours n Klaveness \/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\ \/\/\/\/\/ >I have been thinking about challenging the diet and would like some >suggestions. > >We started the diet with Ebony three months ago. I really do not see any >improvements that can be attributed to the diet. She is still non-verbal, >which isone of the areas I was hoping to see some improvement. Her sleep >is, if anything, worse, not better. Her BM's are not any different, except >more smelly now that we are doing acidophilus. (I know for a fact there was >a yeast problem...getting better now, though) >She has actually increased stimming since beginning the diet...lining things >up and looking at her hands a lot. She has shown more appropriate >interactions at school, but that coincided with the introduction of Zoloft, >so I tend to think that it was the med. > >Ebony did not ever gain language or develop normally, except physically, and >then lose the skill. We are spending an awful lot of time and money on this >and to not see any positive results is dis-heartening. > >What do you all think? I am thinking about making her a pizza and seeing >how she does with it.....I just hate to admit that this didn't work. I had >such very high hopes. In order to understand your position and your chances to improve it, you have to interpret a number of signs and symptoms. I belong to those who believe in the high quality peptide tests. These will, depending on a number of factors, give you an idea about whether your child has a peptide problem or not. If you do it at your stage of the diet - i.e. after a time on diet when the diet does not seem to work - you can tell from the test results - with quite high reliability - whether your problem is * There was no peptide problem to begin with and there still is none, so the diet probably won't have much effect. * The peptide problem has not been solved by the diet, so there is probably some hidden sources of protein around, OR you are expecting results too fast: It can take many months to remove the offending peptides from the patient's system (depending, among other things, on peptide chain length and individual body chemistry). I've written a website www.advimoss.no/gfcf_results especially for those who don't get fast results on the diet. We didn't get fast results. Our son was one of the very slow improvers. Still, we have gone a very long way, and are among the staunchest diet supporters around. If you do a gluten or milk challenge, I advise you to plan ahead a bit, and make sure that you get all the information you can get out of it. Go to www.gfcfdiet.com , proceed to the survey pages, and look up the DIET INFRINGEMENT QUESTIONNAIRE. This will give you an idea of what to look for, and when to look for it. Have a look also at the diet infringement reports. INTERPRETATION PROBLEMS - INFRINGEMENTS PROBLEM NO. 1 IF your son has a peptide problem, then the intake of gluten or casein is likely to affect him in a way that is analogous to morphine intake. * Even if the opoid peptides are not exactly like morphine, the initial reaction is likely to have several aspects to it that the patient is liely to consider " positive " or " pleasant " . Drowsiness must be expected. * The unpleasantness comes later on, with habituation. Any drug addict should be able to tell you this. PROBLEM NO. 2 Autism is not in itself an illness. It's a name that's used to tell that the patient has a certain number of symptoms that make up the diagnostic criteria for autism. Many of these symptoms are NOT the direct result of the underlying illness. They are, rather, the effect of skewed development. Since the autistic symptoms are NOT direct results of exposure to milk or gluten peptides, but rather to the body's adaption to this exposure over time, such exposure will NOT normally result in immediate regression into " autistic " behaviour, in a patient that has been on the diet for a while. More probably, it will make the patient display a different subset of other symptoms related to the causes, rather than the effects of autistic development. OTHER PROBLEMS There are other problems as well, that affect the interpretation of diet infringement observations. I've sent a couple of other posts about this, you can look them up in the archives. I've also written about these problems at www.advimoss.no/gfcf_results.htm . One particularly puzzling problem is the bell-shaped dose response curve. An extract from the (yet) unfinished GFCF FAQ glossary: Bell-shaped dose response curve Imagine you drink one glass of wine. You get slightly fuzzy. Drink another, and the fuzziness increases. Drink a bottle or two, and you'll get roaring drunk. Add more bottles, and sooner or later you will die of alcohol intoxication. This is an example of a (more or less) linear dose response curve. Other substances, and among these you'll find the bioactive peptides, behave in a totally different manner. Up to a certain level, they don't cause much of a reaction at all. Beyond that point, an increased dose causes a sharp increase in response. Beyond a certain point, a further increase of the dose will cause a decrease of the total response. (Imagine being very drunk and then becoming nearly sober by drinking two bottles more). Some people would guess, at this point, that giving enormous quantities of gluten and milk might be just as effective as withdrawing them completely. These people may, in fact, be right, but only up to a point, and only for a while. While symptoms may be masked, damage will nevertheless occur, and adaption will cause the point of maximum dose/effect relationship to move. CONCLUSION Interpreting the effects of diet infringements is not easy. We need to stick together, and share information like this. You can do it through the GFCFkids diet survey (at www.gfcfdiet.com) Yours sincerely n Klaveness www.advimoss.no/GFCF_results \/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\ \/\/\/\/\/ There could be no reaction - for a number of reasons - or a delayed reaction - or a reaction that you don't happen to notice. The GFCFkids diet survey at www.gfcfdiet.com has a special section about infringements: You can look up the reports there, and see roughly how many that report (notice) what kinds of reaction after a diet infringement, how fast it does happen, and how severe the reaction is. I think you'll have to look for a long time before you find a better list. There are several individual types of reasons why you might not notice any reaction at all after a single infringements. Key words are " healed gut " (could be temporary) " re-established natural enzyme system " (could be temporary), " bell shaped dose response curve " (problems masked if you don't hit the " right " dose " habituation " (initial reaction might be opposite of long term reaction) " developmental " disorder (reaction consists of factors that affect development, and does not necessarily show up as symptoms of skewed development: That takes more time) If microbiological factors have also played a part in the puzzle, it might take weeks or months for fungi or bacteriae to re-establish themselves when conditions become " favourable " . Beware: It seems to be quite common for people to see no reaction for up to 6 weeks. When the reaction eventually comes, it happens so slowly and gradually that it's difficult to realise what's happening. Several people have made the kind of experiment that you're considering. It is most important, if you go off the diet, to watch and describe as objectively and fully as you can, all the parameters that are likely to be affected in the short to medium run by a diet challenge. When you make a challenge, you should be fairly decisive: Use a large quantity over a short period (1-2 meals) and then go back on the diet again, watching closely for any of the changes that might indicate a sensitivity. If you see nothing for a week, then make a bigger, longer challenge, and wait for ten days. This waiting period is important, because continued intake of offending protein might mask the most noticeable of the effects of the first dose. WRITE DOWN what you see! Share it through the GFCFkids diet survey! (www.gfcfdiet.com). You might also find it worth while to read the infringement section of www.advimoss.no/GFCF_results . Yours sincerely n Klaveness \/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\ \/\/\/\/\/ 1. Some are able to give ghee to their children without any observable effects. 2. This might be interpreted in two different ways. a) The ghee is refined to a point of 0.0000% protein content (extremely unlikely, if you ask my opinion) The child's appears to have no harmful reaction to such small amounts of protein. This might be interpreted in three different ways. b1: Given this particular child's combination of gut status (healed), enzyme activity (adequate to cope with a minute intake) or microbiological factors, little or no protein gets absorbed across the gut barrier in opoid peptide form - or if it is absorbed in that form, it gets broken down fast enough by the remaining natural peptidase enzymes. These patients could go on using ghee indefinetely, until somthing else causes the enzyme system to break down, or the gut permeability to increase, whereupon ghee might again become a big problem. b2: The protein fragments do, in fact, accumulate, but they only cause chronic problems because the patient's system manages to keep peptide levels relatively stable. These patients will lose part of their potential if ghee is used. This kind of problem is very difficult to spot, because it might take many months of very slow change to realise that potential. Proving that there is a connection, will be very difficult unless challenges are made later on. b3: The protein fragments cause both accute and chronic effects, but both go unnoticed. There are several reasons why this may happen. Most important among these are the time delay problems: It's not the first dose of morphine that sets the patient crawling up the walls: It's the absence of the tenth dose. If you're only looking for the more tell-tale signs of peptide activity, you're not going to see them to begin with. You have, in other words, to do a bit of studying and experimenting and a bit of very close observation before you can tell, with any certainty, that there are no accute effects. Remember that the habituation / un-habituation problems and the infamous bell-shaped dose response curve are parts of the time delay problem. Therefore: When experimenting with ghee, be sure to stop using the stuff from time to time: The patient's sensitivity is likely to vary a lot, over time. Some appear to develop increased tolerance as the years go by. Others appear to develop extreme sensitivity to even minute traces of offending protein. Yours n Klaveness www.advimoss.no \/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\/\ \/\/\/\/\/ Quote Link to comment Share on other sites More sharing options...
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