Guest guest Posted December 9, 2004 Report Share Posted December 9, 2004 > > Please forgive me, I reached out for help and in return have unloaded > my gun firing of rounds that wound and injure. > Again Please forgive and don't be turned off, I am a desperate > father looking for some answers in a mist of chaos. > Ken-nothing to forgive as I can't even find your previous posts yet remember responding to them. Yahoo archives are the ultimate maze. What is your goal right now? It sounds like GFCF was good for your boy. Why do you want to change now? What foods has he been able to tolerate? What is he currently eating? If you do SCD neither eggs or dairy are required. We sure can relate to the stress and anxiety you are feeling and sometimes one has no choice but to vent because the world is not a fair place. Let's see if we might be able to help with version of SCD that might be OK for your little guy if you are interested in giving it a try. Carol F. SCD 3 years, Celiac Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2004 Report Share Posted December 9, 2004 > > Please forgive me, I reached out for help and in return have unloaded > my gun firing of rounds that wound and injure. > Again Please forgive and don't be turned off, I am a desperate > father looking for some answers in a mist of chaos. > Ken-nothing to forgive as I can't even find your previous posts yet remember responding to them. Yahoo archives are the ultimate maze. What is your goal right now? It sounds like GFCF was good for your boy. Why do you want to change now? What foods has he been able to tolerate? What is he currently eating? If you do SCD neither eggs or dairy are required. We sure can relate to the stress and anxiety you are feeling and sometimes one has no choice but to vent because the world is not a fair place. Let's see if we might be able to help with version of SCD that might be OK for your little guy if you are interested in giving it a try. Carol F. SCD 3 years, Celiac Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2004 Report Share Posted December 9, 2004 > > > > Again Please forgive and don't be turned off, I am a desperate > > father looking for some answers in a mist of chaos. > > > > Ken-nothing to forgive as I can't even find your previous posts yet remember responding to them. Yahoo archives are the ultimate maze. > excuse me i am new to this is there a way to put a link in a post? well anyway ill try it this way http://health.groups.yahoo.com/group/pecanbread/message/26517 http://health.groups.yahoo.com/group/pecanbread/message/26519 > What is your goal right now? It sounds like GFCF was good for your boy. Why do you want to change now? What foods has he been able to tolerate? What is he currently eating? If you do SCD neither eggs or dairy are required. > Carol thanks again I am trying to dial in to what is going on. I suspect food is still an issue eventhough his stools are normal and allergy eczema asthma have been progressively better every step of the way. His skin is so clear and he seems to LOOK healthy. But I KNOW there is MORE I always would know if something he ate was a no no because his cheeks would show redness, like tiny little stringy fibers in fruit. You can see it so clear within minutes and we always knew. For example something he was allergic to like wheat, oats, bread would reveal this. Now things such as food coloring would send him over the top I mean total melt down. And I always seen from time to time he would get more stimmy, gas and intoxicated from too much fruits such as apple and grape, but this was only to much, so we limited his fruits and rotated them day to day. Here is the problem, as time went on he did not have a problem with this anymore, so we continued to let him have the fruits and juices of course no sugar or additives in any of his diet. Now 3 years ago when we started GF/CF (actually never had casein), he flipped out during the removal of gluten (bread, pasta,) and we new their was a problem with him braking down the proteins and he tested positive for leaky gut. He has been on pretty much a rotation diet from the beginning rotating all the fruits, meats as well as rice and potato, always trying to invent ways to mix in the veggies. Never had any candies, chocolate ect…no yeast's sugars ect.. Never, never, never and ill say never be on any drugs of any kind, he is on probiotics, digestive enzymes and well tolerated supplements. This is complicated right now in the place we are at because there is so much going on with his body, when we fist introduced B12 he became manic, Dangerous, man he was making connections quick he was speaking and saying real intelligent stuff like he was calculating it in his head, now he has always been hyper this little guy flies, but also we had an explosion in his eye contact, initiated verbal responses as well as things he never said before. I believe the cause of his behaviors is due to his body detoxifying we went through this through chelation, but it is so hard to tell because IM so suspicious of his behavior reaction to the foods. I hope this explanation helps you see where im coming from. Ken Father of ASD 6-3/4 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2004 Report Share Posted December 9, 2004 > > > > Again Please forgive and don't be turned off, I am a desperate > > father looking for some answers in a mist of chaos. > > > > Ken-nothing to forgive as I can't even find your previous posts yet remember responding to them. Yahoo archives are the ultimate maze. > excuse me i am new to this is there a way to put a link in a post? well anyway ill try it this way http://health.groups.yahoo.com/group/pecanbread/message/26517 http://health.groups.yahoo.com/group/pecanbread/message/26519 > What is your goal right now? It sounds like GFCF was good for your boy. Why do you want to change now? What foods has he been able to tolerate? What is he currently eating? If you do SCD neither eggs or dairy are required. > Carol thanks again I am trying to dial in to what is going on. I suspect food is still an issue eventhough his stools are normal and allergy eczema asthma have been progressively better every step of the way. His skin is so clear and he seems to LOOK healthy. But I KNOW there is MORE I always would know if something he ate was a no no because his cheeks would show redness, like tiny little stringy fibers in fruit. You can see it so clear within minutes and we always knew. For example something he was allergic to like wheat, oats, bread would reveal this. Now things such as food coloring would send him over the top I mean total melt down. And I always seen from time to time he would get more stimmy, gas and intoxicated from too much fruits such as apple and grape, but this was only to much, so we limited his fruits and rotated them day to day. Here is the problem, as time went on he did not have a problem with this anymore, so we continued to let him have the fruits and juices of course no sugar or additives in any of his diet. Now 3 years ago when we started GF/CF (actually never had casein), he flipped out during the removal of gluten (bread, pasta,) and we new their was a problem with him braking down the proteins and he tested positive for leaky gut. He has been on pretty much a rotation diet from the beginning rotating all the fruits, meats as well as rice and potato, always trying to invent ways to mix in the veggies. Never had any candies, chocolate ect…no yeast's sugars ect.. Never, never, never and ill say never be on any drugs of any kind, he is on probiotics, digestive enzymes and well tolerated supplements. This is complicated right now in the place we are at because there is so much going on with his body, when we fist introduced B12 he became manic, Dangerous, man he was making connections quick he was speaking and saying real intelligent stuff like he was calculating it in his head, now he has always been hyper this little guy flies, but also we had an explosion in his eye contact, initiated verbal responses as well as things he never said before. I believe the cause of his behaviors is due to his body detoxifying we went through this through chelation, but it is so hard to tell because IM so suspicious of his behavior reaction to the foods. I hope this explanation helps you see where im coming from. Ken Father of ASD 6-3/4 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2004 Report Share Posted December 9, 2004 > > I am trying to dial in to what is going on. > > > Here is the problem, as time went on he did not have a problem with > this anymore, so we continued to let him have the fruits and juices > of course no sugar or additives in any of his diet. Were these commercial juices? No matter what the ingredient label says they could contain undisclosed sugar. > Now 3 years ago when we started GF/CF (actually never had casein), he > flipped out during the removal of gluten (bread, pasta,) and we knew > their was a problem with him breaking down the proteins and he tested > positive for leaky gut. Gluten is not the only culprit. Let me say right now that I would never criticize GFCF to a parent whose child succeeded on it. However I cannot understand how it happens because of the permitted dissaccharide starches unless there are no digestive issues.. > He has been on pretty much a rotation diet from the beginning > rotating all the fruits, meats as well as rice and potato, always > trying to invent ways to mix in the veggies. > Never had any candies, chocolate ect…no yeast's sugars ect.. > Never, never, never and ill say never be on any drugs of any kind, he > is on probiotics, digestive enzymes and well tolerated supplements. Ken, I strongly support SCD because I believe Elaine's contention tvia Dr. Haas that the type of starch contained in rice and potatoes, corn, soy and other foods restricted from the SCD diet often does harm . Most Pecanbread members who transitioned from GFCF experience progress. actually, 80%. The rice and potatoes if not digested cause bacterial proliferation and overgrowth. Yes, detoxification takes place. On SCD it can take several weeks or even months as the body adjusts to having the bad bacteria denied the food source they thrive on. I am not sure what you need to hear from us. Usually it is suggested to give a one month trial to SCD and prepare for die off symptoms and even increased bad behavior before there is a light at the end of the tunnel. I am not an autism parent and I think these are the people you need to hear from. Carol F. SCD 4yrs, Celiac Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2004 Report Share Posted December 10, 2004 „« I am trying to dial in to what is going on. > >> Now 3 years ago when we started GF/CF (actually never had casein), he > flipped out during the removal of gluten (bread, pasta,) and we knew > their was a problem with him breaking down the proteins and he tested > positive for leaky gut. Gluten is not the only culprit. Let me say right now that I would never criticize GFCF to a parent whose child succeeded on it. „« „« However I cannot understand how it happens because of the permitted dissaccharide starches unless there are no digestive issues.. „« „« Please explain what you mean to the above statement? „« AND PLEASE CORECT ME IF I AM WRONG „« I need to hear this 1000 times and get this info to my wife. „« If he has no known yeast infections bC of previous effective intervention 3-6 moths ( nystatin ) „« Which eliminated all diarrhea and stools became normal, prior treatment before GF/CF. „« And than we were able to increase his weight add digestive enzymes, supplementation as well as immune enhancers and probiotics. „« „« Ken, I strongly support SCD because I believe Elaine's contention tvia Dr. Haas that the type of starch contained in rice and potatoes, corn, soy and other foods restricted from the SCD diet often does harm . „« „« „« I am agreement with this because I suspect something else, but there is more to it. „« I need my other half to see this also because she is my only means of implementing such a transition. „« It took a long time to get where we are today. „« „« And the biggest thing is „« My son has a high allergic reactions to even touching egg (hives on the hand) dairy(eyes completely shut) yogurt, (hives on stomach ) „« she has also freaked out if anything had nuts of any kind „« „« Most Pecanbread members who transitioned from GFCF experience progress. actually, 80%. The rice and potatoes if not digested cause bacterial proliferation and overgrowth. „« How can I verify this? „« „« I am not sure what you need to hear from us. „« „« I guess its is to conform to me that this is the right route by the underlying circumstances that their STILL is a gut problem „« And HELP HELP HELP in the support to an intro diet and how to help my wife see this is SAFE „« „« „« I am not an autism parent and I think these are the people you need to hear Can someone relate to me so I can relate this to my son¡¦s condition? Any one out there?????????? Thank you and God bless you all Kenny V Father of 6-3/4 ASD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2004 Report Share Posted December 10, 2004 „« I am trying to dial in to what is going on. > >> Now 3 years ago when we started GF/CF (actually never had casein), he > flipped out during the removal of gluten (bread, pasta,) and we knew > their was a problem with him breaking down the proteins and he tested > positive for leaky gut. Gluten is not the only culprit. Let me say right now that I would never criticize GFCF to a parent whose child succeeded on it. „« „« However I cannot understand how it happens because of the permitted dissaccharide starches unless there are no digestive issues.. „« „« Please explain what you mean to the above statement? „« AND PLEASE CORECT ME IF I AM WRONG „« I need to hear this 1000 times and get this info to my wife. „« If he has no known yeast infections bC of previous effective intervention 3-6 moths ( nystatin ) „« Which eliminated all diarrhea and stools became normal, prior treatment before GF/CF. „« And than we were able to increase his weight add digestive enzymes, supplementation as well as immune enhancers and probiotics. „« „« Ken, I strongly support SCD because I believe Elaine's contention tvia Dr. Haas that the type of starch contained in rice and potatoes, corn, soy and other foods restricted from the SCD diet often does harm . „« „« „« I am agreement with this because I suspect something else, but there is more to it. „« I need my other half to see this also because she is my only means of implementing such a transition. „« It took a long time to get where we are today. „« „« And the biggest thing is „« My son has a high allergic reactions to even touching egg (hives on the hand) dairy(eyes completely shut) yogurt, (hives on stomach ) „« she has also freaked out if anything had nuts of any kind „« „« Most Pecanbread members who transitioned from GFCF experience progress. actually, 80%. The rice and potatoes if not digested cause bacterial proliferation and overgrowth. „« How can I verify this? „« „« I am not sure what you need to hear from us. „« „« I guess its is to conform to me that this is the right route by the underlying circumstances that their STILL is a gut problem „« And HELP HELP HELP in the support to an intro diet and how to help my wife see this is SAFE „« „« „« I am not an autism parent and I think these are the people you need to hear Can someone relate to me so I can relate this to my son¡¦s condition? Any one out there?????????? Thank you and God bless you all Kenny V Father of 6-3/4 ASD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2004 Report Share Posted December 10, 2004 > > „« I am trying to dial in to what is going on. > > > >> Now 3 years ago when we started GF/CF (actually never had casein), > he > > flipped out during the removal of gluten (bread, pasta,) and we knew > > their was a problem with him breaking down the proteins and he > tested > > positive for leaky gut. > > Gluten is not the only culprit. Let me say right now that I would > never > criticize GFCF to a parent whose child succeeded on it. > „« > „« However I cannot > understand how it happens because of the permitted dissaccharide > starches unless > there are no digestive issues.. > > > „« > „« Please explain what you mean to the above statement? > „« > AND PLEASE CORRECT ME IF I AM WRONG > > „« I need to hear this 1000 times and get this info to my wife. > „« If he has no known yeast infections bC of previous effective > intervention 3-6 moths ( nystatin ) > „« Which eliminated all diarrhea and stools became normal, prior > treatment before GF/CF. > „« And than we were able to increase his weight add digestive > enzymes, supplementation as well as immune enhancers and probiotics. > „« Ken I am still not clear what you are asking but might this be helpful to your wife? Reputable studies have found nearly half of autism children have digestive malabsorption of carbohydrates and digestive issues can interfere with the gut-brain connection. Perhaps children have improved or lost their diagnosis on GFCF because they may not have had the digestive problem. Those who can't digest starches and gluten can experience bacterial overgrowth with vigorous proliferation and it causes intestinal fermentation, gas, pain diharrea. They feel miserable and experience pain. They do not absorb the nutrients from their food and are often underweight. They have behavioral problems in addition and sometimes learning disability. They do not respond to affection. These children are good candidates for an SCD trial. Yeast seems to be a major issue more in children than the adults and responds well to certain medications, enzymes and supplements. I know very little about that as I follow the adult version of the diet and do not require them. Please email me and tell me if this answer is helpful and pose exactly the question you need answered. Carol F. SCD 4yrs, celiac Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2004 Report Share Posted December 10, 2004 > > > > „« I am trying to dial in to what is going on. > > > > > >> Now 3 years ago when we started GF/CF (actually never had casein), > > he > > > flipped out during the removal of gluten (bread, pasta,) and we knew > > > their was a problem with him breaking down the proteins and he > > tested > > > positive for leaky gut. > > > > Gluten is not the only culprit. Let me say right now that I would > > never > > criticize GFCF to a parent whose child succeeded on it. > > „« > > „« However I cannot > > understand how it happens because of the permitted dissaccharide > > starches unless > > there are no digestive issues.. > > > > > > „« > > „« Please explain what you mean to the above statement? > > „« > > AND PLEASE CORRECT ME IF I AM WRONG > > > > „« I need to hear this 1000 times and get this info to my wife. > > „« If he has no known yeast infections bC of previous effective > > intervention 3-6 moths ( nystatin ) > > „« Which eliminated all diarrhea and stools became normal, prior > > treatment before GF/CF. > > „« And than we were able to increase his weight add digestive > > enzymes, supplementation as well as immune enhancers and probiotics. > > „« > > Ken I am still not clear what you are asking but might this be helpful to your wife? > > Reputable studies have found nearly half of autism children have digestive malabsorption of carbohydrates and digestive issues can interfere with the gut-brain connection. Perhaps children have improved or lost their diagnosis on GFCF because they may not have had the digestive problem. > > Those who can't digest starches and gluten can experience bacterial overgrowth with vigorous proliferation and it causes intestinal fermentation, gas, pain diharrea. They feel miserable and experience pain. They do not absorb the nutrients from their food and are often underweight. They have behavioral problems in addition and sometimes learning disability. They do not respond to affection. These children are good candidates for an SCD trial. Yeast seems to be a major issue more in children than the adults and responds well to certain medications, enzymes and supplements. I know very little about that as I follow the adult version of the diet and do not require them. > > Please email me and tell me if this answer is helpful and pose exactly the question you need answered. > > Carol F. > SCD 4yrs, celiac Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2004 Report Share Posted December 11, 2004 Ken, I am the father of a six years old with autism. I attended the D.A.N. conference in Los Angeles and am quite familiar with the protocol. We have not been following the protocol as long as you have but have had similiar experiences to yours. In March 2004, we placed ph on the GFCF diet. During his time on the diet we saw little or no improvement in ph, but he did have significant weight loss. His weight went down to 41 lbs. We followed the diet strictly until October when I heard Elaine Gotschall speak at the D.A.N. conference. Within a week with much angst as what we were going to feed him, we switched to SCD while remaining gluten, casein, and soy free. ph went through a two week " die off " period where he had intermittent episodes of diarreah and vomitting. In the two months that ph has been on the diet, improvement in language, social skills and level of understanding are evident. He thoroughly enjoys the food. His weight is now 46lbs. He started the chelation process with TD-DMPS a month ago with even more improvement. We expect that with the home based program we are using, chelation, and diet, ph will eventually be normal. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2004 Report Share Posted December 11, 2004 Dear Ken: I've read a few of your emails & responses, I've been unable to check the mails for over a week. We started my daughter (ASD and just turned 7) on SCD for almost a month now. She initially had some severe constipation as an infant, we went CF/GF around 3 years ago. She did improve on these, but never had many GI symptoms since infancy that we knew about. There were meltdowns from day to day. I suspect she suffered from esophageal reflux (when the stomach acid regurgitates back up the esophagus or acid indigestion.) She used to do the " arms up and twist " motion, and had terrible nights of awakenings for 2 - 5 hours. I learned recently that these 2 symptoms may be related to reflux. Anyway, to get to the point, I decided to put her on the SCD diet because it made sense to me to try to heal the gut of all the damage and it made biochemical sense to me. We have seen some increased aggression and hearing intolerance, but more importantly, we have seen more language, more emotional engagement (particularly with mum) more appropriate social behaviour (greetings by her initiation, unprompted) better eye contact, actual referencing to me and to her teacher. She suddenly began to be able to ride the indoor swing by herself, and learned quickly how to get herself started and pumping to maintain her swing, all of these skills and initiatives are new. More importantly, they have not been taught to her. She is learning them incidentally. She is starting to ask questions, something she has not done since 18 months? or so. I got my first unsolicited hug and request for a kiss as I was leaving for work the other day. I am thankful. Two weeks after starting SCD, we initiated some of the other parts of the DAN protocol supplements, and are still waiting for some of them to come. I guess the exciting thing about this diet is that although there is some pain at the beginning for both the child and for the parents (it's quite an adjustment!) I truly feel good about the food I give her because I believe it is leading to healing her gut which will eventually affect her behaviour positively as well. I am encouraged by the accounts of parents I have talked to whose children have remarkably improved on this diet. We had no particular GI symptoms that prompted us to switch, but are glad that we did. Hope this helps, , mum to Mimi (7, ASD) of the bright eyes ken_vaccaro wrote: Please forgive me, I reached out for help and in return have unloaded my gun firing of rounds that wound and injure. Again Please forgive and don't be turned off, I am a desperate father looking for some answers in a mist of chaos. Last week was a tough one between looking for answers, fasting for 5 days, and being exposed to all of the recent work of LA DAN conference .I became overwhelmed, my emotions were not in check and reacted with all the pain that has been inside for a long time. Remember I am a Dad fighting for my son. We have had so much success in following the Dan protocol, GF/CF for 3 years and now recently implementing TTFD?Glutithiome/B12 injections. Previously battled with multiple yeast infections and chelated 24 rounds. Since introduced to looking at the SCD diet as another intervention it has come to my attention to suspect foods that hinder my son's behavior/learning process. His diet is limited having high allergies to dairy, eggs, gluten ect… He is going to be 7 in March and weights only 40 lbs. soaking wet. Always a little guy, he was only 14 pounds at a year old, before we went GF/CF and originally cleaned the gut. (He had chronic diarrhea). Here is my situation after the last rounds of chelation before the intro to phase 4 of Dan protocol he was becoming calmer. But we always seen a difference to his behavior with certain foods. Many times we eliminated them and reintroduced them, not really seeing much of a difference where we can pinpoint an offending food. Now recently I learned you oftentimes see a significant difference in behavior when you take away a food that is suspected to be a problem and they react as if the are addicted to them. Is this so? And what is your take? Please help me make some sense in all of this And help me to start a diet modification if you think it is necessary? P.s. I need a woman's touch here; it took 3 years for my wife to be disciplined in following a strict GF diet and doesn't make much to the gut brain connection. She just makes up for all that Love that is needed in raising a child who has autism. God bless you all Kenny V Father of ASD 6 3/4 For information on the Specific Carbohydrate Diet, please read the book _Breaking the Vicious Cycle_ by Elaine Gottschall and read the following websites: http://www.breakingtheviciouscycle.info and http://www.pecanbread.com Quote Link to comment Share on other sites More sharing options...
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