Guest guest Posted September 3, 2004 Report Share Posted September 3, 2004 great article about this in mothering magazing this month... -katja At 04:12 PM 9/3/2004, you wrote: >I've loosely been following the conversation about balancing the gut >before healing can occur - and I'm wondering if anyone has >experience with autism (either directly or indirectly) and gut >permeability. How was it treated with diet? Was the treatment >successful or were drugs/supplementation necessary? > >Thanks in advance... >a Z > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2004 Report Share Posted September 3, 2004 i read it - and was somewhat dismayed by the lack of information. the mama cut out wheat and dairy and magically her kid was markedly better?! so many professionals are now saying that raw dairy can be therapeutic for these kids. and it seems to me - what works for one kid doesn't necessarily work for another. makes sense since adults are different - why would it be any different with children?! my client is mildly autistic and has not been doing well on a modified NT diet. his CDSA (comprehensive diagnostic stool analysis) came back showing the only major concern is that he is lacking in good bacteria. surprising since this kid has violent mood swings and chronic loose stools. the mom is going bonkers - constantly trying new recipes (using lots of NT foods, although she's reluctant to give him coconut products since he has reacted violently in the past) and he isn't getting any better. very frustrating:( erica z > >I've loosely been following the conversation about balancing the gut > >before healing can occur - and I'm wondering if anyone has > >experience with autism (either directly or indirectly) and gut > >permeability. How was it treated with diet? Was the treatment > >successful or were drugs/supplementation necessary? > > > >Thanks in advance... > >a Z > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2004 Report Share Posted September 3, 2004 ----- Original Message ----- From: " hlthgrl5275 " > i read it - and was somewhat dismayed by the lack of information. > the mama cut out wheat and dairy and magically her kid was markedly > better?! Amazing, isn't it? Actually, it's bit more specific than wheat and dairy. It's actually gluten and casein, which covers a lot more territory and is a lot more tedious to implement. Ask me how I know. > so many professionals are now saying that raw dairy can be > therapeutic for these kids. > and it seems to me - what works for one kid doesn't necessarily work > for another. makes sense since adults are different - why would it > be any different with children?! It has to do with the mechanism of intestinal hyperpermeability. When the gluten and casein molecules leak through the intestines imcompletely digested, they travel to the brain and attach to the neuroreceptors and have what researchers call " an opiod-like effect on the brain. " These children are, in essence, stoned. When the offending factors are removed from their diet, they also can exhibit withdrawal symptoms. Raw dairy can be very healthy. I'm not sanguine about how healthy it is for children who have fishnet stockings for intestines. Perhaps later....muuuuuuch later. I have a friend who raised her own goats and gave her children raw goat's milk. She described the year that she began giving them dairy as the " year we lost J. " Anytime that she gives him any kind of dairy, raw or no, he " disappears. " Her other child becomes a " Stepford child " who is totally compliant and biddable....and lacking the ability to navigate for himself. When they are gf/cf, they snap out of it and function as neurotypical children. > my client is mildly autistic and has not been doing well on a > modified NT diet. his CDSA (comprehensive diagnostic stool analysis) > came back showing the only major concern is that he is lacking in > good bacteria. surprising since this kid has violent mood swings and > chronic loose stools. " Lacking in good bacteria " is the very heart of the entire problem. Until a healthy gut flora is established, then the intestinal lining cannot repair itself. Mood swings and loose diarrhea symptomatic of that. (These are my children's symptoms as well.) There are products and ideas about establishing good gut flora. What worked for us was Primal Defense and using kefir grains to make coconut milk kefir. Cross your fingers, folks, 'cause I'm trialing goat milk kefir this week and so far, no reactions. > the mom is going bonkers - constantly trying new recipes (using lots > of NT foods, although she's reluctant to give him coconut products > since he has reacted violently in the past) and he isn't getting any > better. I'd strongly suggest Primal Defense, then. It's hideously expensive, but I found that it (in conjunction with three months of doing The Body Ecology Diet) helped repair their intestines, re-establish good gut flora, and we are now going through the laundry list of IgG's and trialling reintroducing them. > very frustrating:( Oh, hon, it's *more* than frustrating....it's one of the most desperate feelings in the world to watch your child's list of tolerable foods continually shrink. --s Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2004 Report Share Posted September 3, 2004 Elaine Gottschall's book Breaking The Vicious Cycle covers the Specific Carbohydrate Diet. It was initially for people with IBS, colitis and other intestinal disorders but the latest version covers Autism as well. Very briefly it disallows all starches (and dairy), but does allow simple sugars. Might be worth a read. Can't vouch for it's success though. I have a friend whose 4 yr old has been labelled with Aspergers syndrome. I lent her the book but she felt it would be too hard to implement. Sigh.... deb > > >I've loosely been following the conversation about balancing the > gut > > >before healing can occur - and I'm wondering if anyone has > > >experience with autism (either directly or indirectly) and gut > > >permeability. How was it treated with diet? Was the treatment > > >successful or were drugs/supplementation necessary? > > > > > >Thanks in advance... > > >a Z > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2004 Report Share Posted September 3, 2004 ----- Original Message ----- From: " katja " > >she felt it would be too hard to implement. Sigh.... > > > >deb > > this? infuriates me. > we're rampantly gluten free and we haven't had to be casein free but i > would do it in a second for my daughter. i was a bread aholic - i could > seriously eat a loaf of heavy dense sourdough a day, and regularly did. i > get really upset with parents who think they can't give things up for their > kids - they're just holding themselves back. if instead, they told > themselves " i'll do anything, whatever it takes " , they'd probably find that > they're a lot healthier themselves as a result, and maybe they'll find that > it's not so tough after all. and if they question, they can listen to the > news reports of the russian kids who were held hostage this week. > > -katja. feeling, apparently, rampant! Hear! Hear! --s, whose children's food issues led to places I'd never dreamed of...... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2004 Report Share Posted September 3, 2004 a, If I were dealing with a child with autism I would first try the pig duodenum as described on the following page: http://www.krysalis.net/autism.htm I do not personally know of anyone who has used this protocol, but I have had occasion to use for myself and a few others some of his other ideas with profound success. If nothing else, you should have some ideas and insights from his writings. Terry >I've loosely been following the conversation about balancing the gut > >before healing can occur - and I'm wondering if anyone has > >experience with autism (either directly or indirectly) and gut > >permeability. How was it treated with diet? Was the treatment > >successful or were drugs/supplementation necessary? > > > >Thanks in advance... > >a Z Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2004 Report Share Posted September 3, 2004 well, are they eating NT, or gluten free and casein free? eating NT is not enough. they need to be rampantly gluten free and also casein free. the child might in fact be able to tolerate casein in the future, but in the beginning, they need to assume it's a problem. keep in mind that casein intolerance is not usually resolved by drinking raw milk, though you might try purebred guernsey milk, which has a different casein type than all other cow milk. goat and sheep milk is also out. to get any benefit, the child really needs to eat just meat and vegetables (and very moderate fruits) for a while. also supplement strongly with cod liver oil and remember that you have however much gut damage to heal, too. you should see " bettering " of the symptoms, but it might not go totally away until there's some healing. they should try to eat lactofermenteds at every meal - hopefully the child will like kimchi. rejuvenac (a drink made just from the juice of lacto-fermented cabbage) is good too. kefir is out until you figure out the casein part. and can i stress again? *rampantly* gfcf. if they let some stuff slip in, then it's all for naught. -katja At 04:30 PM 9/3/2004, you wrote: >i read it - and was somewhat dismayed by the lack of information. >the mama cut out wheat and dairy and magically her kid was markedly >better?! >so many professionals are now saying that raw dairy can be >therapeutic for these kids. >and it seems to me - what works for one kid doesn't necessarily work >for another. makes sense since adults are different - why would it >be any different with children?! > >my client is mildly autistic and has not been doing well on a >modified NT diet. his CDSA (comprehensive diagnostic stool analysis) >came back showing the only major concern is that he is lacking in >good bacteria. surprising since this kid has violent mood swings and >chronic loose stools. > >the mom is going bonkers - constantly trying new recipes (using lots >of NT foods, although she's reluctant to give him coconut products >since he has reacted violently in the past) and he isn't getting any >better. > >very frustrating:( > >erica z > > > > >I've loosely been following the conversation about balancing the >gut > > >before healing can occur - and I'm wondering if anyone has > > >experience with autism (either directly or indirectly) and gut > > >permeability. How was it treated with diet? Was the treatment > > >successful or were drugs/supplementation necessary? > > > > > >Thanks in advance... > > >a Z > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2004 Report Share Posted September 3, 2004 > >Can't vouch for it's success though. I have a friend whose 4 yr old >has been labelled with Aspergers syndrome. I lent her the book but >she felt it would be too hard to implement. Sigh.... > >deb this? infuriates me. we're rampantly gluten free and we haven't had to be casein free but i would do it in a second for my daughter. i was a bread aholic - i could seriously eat a loaf of heavy dense sourdough a day, and regularly did. i get really upset with parents who think they can't give things up for their kids - they're just holding themselves back. if instead, they told themselves " i'll do anything, whatever it takes " , they'd probably find that they're a lot healthier themselves as a result, and maybe they'll find that it's not so tough after all. and if they question, they can listen to the news reports of the russian kids who were held hostage this week. -katja. feeling, apparently, rampant! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2004 Report Share Posted September 3, 2004 >I've loosely been following the conversation about balancing the gut >before healing can occur - and I'm wondering if anyone has >experience with autism (either directly or indirectly) and gut >permeability. How was it treated with diet? Was the treatment >successful or were drugs/supplementation necessary? > >Thanks in advance... >a Z My family has mild Asperger's and it really responds to a GF diet. I tried it after seeing an autistic kid get MUCH better. However, the kid was on a " special " diet while his family was all eating gluten, so I don't think he was REALLY gluten free (I react if my kids hands are full of gluten and I hold their hands, then don't wash fully before I eat ... so the kids and animals are went GF too). From my personal experience, I think once the brain is developed it is always a bit different ... and with autism there might be other issues too. My kids all have " big heads " typical of autism, and they still do, and they like quiet rooms and tend to like " deep " subjects. But no one would diagnose them as autistic or aspergers. In my case I had to give up gluten and casein ... casein reliably produces " brain fog " the next day. The gut permeability seems to be related to zonulin, which causes both the gut and the blood brain barrier to be permeable in IgA reactions. Not everyone reacts to gluten though, casein, yeast, corn, eggs and soy are also implicated, but removing the offending food very often heals the gut quite nicely. Food supplements might help, because the person is often nutrient depleted too. Heidi Jean Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2004 Report Share Posted September 4, 2004 > Diet and Autism > > >I've loosely been following the conversation about balancing the gut >before healing can occur - and I'm wondering if anyone has >experience with autism (either directly or indirectly) and gut >permeability. How was it treated with diet? Was the treatment >successful or were drugs/supplementation necessary? > >Thanks in advance... >a Z a, Has this child been vaccinated? There are several parents that are successfully treating their autistic kids with mercury chelation. Many childhood vaccs contain thimerasol - which is some type of Hg derivative. This is generally the suspected cause of the Hg poisoning of many autistic children. (A number of researchers now consider autism to be a form of mercury poisoning.) I asked for testimonials on the autism treatment list and got several replies from parents with autistic kids who were making great gains since starting Andy Cutler's Hg chelation protocol. One even said her autistic child was diagnosed as no longer autistic(!) even though it's considered " incurable " . Ha! Many of these kids are GFCF as others have mentioned. And Donna Gates focuses heavily on intestinal health in her approach to autism. Hg can cause intestinal issues - many Hg toxic folks have candida problems. So there is some connection there. Perhaps the Hg from vaccines causes candida overgrowth which in turn causes leaky gut, which in turn allows gluten and casein to leak into the bloodstream which ends up in the brain causing autism symptoms. Just a guess, but there seems to be a connection between autism and gluten, casein, intestinal dysbiosis and mercury. It's probably a rare autistic child that has not been vaccinated or that does not consume gluten or casein... Suze Fisher Lapdog Design, Inc. Web Design & Development http://members.bellatlantic.net/~vze3shjg Weston A. Price Foundation Chapter Leader, Mid Coast Maine http://www.westonaprice.org ---------------------------- “The diet-heart idea (the idea that saturated fats and cholesterol cause heart disease) is the greatest scientific deception of our times.” -- Mann, MD, former Professor of Medicine and Biochemistry at Vanderbilt University, Tennessee; heart disease researcher. The International Network of Cholesterol Skeptics <http://www.thincs.org> ---------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2004 Report Share Posted September 4, 2004 I have read both Breaking the Vicious Cycle and Donna Gates' The Body Ecology Diet. What I found fascinating is that their general theory is exactly the same, that of healing the digestive system, i.e., the intestinal lining and beneficial bacteria. Both claim effectiveness with autism! When you look at the details of each, however, they have strikingly opposite opinions: --Both use dairy as a probiotic but only in fully cultured form, never plain milk, but BVC says homemade yogurt is better than kefir while BED says kefir is better than yogurt. --BVC eliminates all grains while BED allows a few (millet, buckwheat and amaranth if I remember correctly). --BVC allows all fruit while BED only allows a select few. --BVC is against sea veggies while BED promotes sea veggies. --BVC is against inulin and FOS while BED thinks they're good. I would recommend anyone trying to deal with autism to read both and try to sort out what the common truths are between them. Personally, plain raw milk makes me gassy but homemade yogurt does not. www.bodyecologydiet.com http://www.breakingtheviciouscycle.info/ Deb <deb@...> wrote: Elaine Gottschall's book Breaking The Vicious Cycle covers the Specific Carbohydrate Diet. It was initially for people with IBS, colitis and other intestinal disorders but the latest version covers Autism as well. Very briefly it disallows all starches (and dairy), but does allow simple sugars. Might be worth a read. Can't vouch for it's success though. I have a friend whose 4 yr old has been labelled with Aspergers syndrome. I lent her the book but she felt it would be too hard to implement. Sigh.... deb > > >I've loosely been following the conversation about balancing the > gut > > >before healing can occur - and I'm wondering if anyone has > > >experience with autism (either directly or indirectly) and gut > > >permeability. How was it treated with diet? Was the treatment > > >successful or were drugs/supplementation necessary? > > > > > >Thanks in advance... > > >a Z > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2004 Report Share Posted September 4, 2004 ----- Original Message ----- From: " JASON " > I have read both Breaking the Vicious Cycle and Donna Gates' The Body Ecology Diet. > > What I found fascinating is that their general theory is exactly the same, that of healing the digestive system, i.e., the intestinal lining and beneficial bacteria. Both claim effectiveness with autism! >> Because both work on killing of candida overgrowth, which is a common symptom of autism and leaky gut syndrome. When you look at the details of each, however, they have strikingly opposite opinions: > --Both use dairy as a probiotic but only in fully cultured form, never plain milk, but BVC says homemade yogurt is better than kefir while BED says kefir is better than yogurt. I'm of the " kefir is better " school. The reason being is that yogurt cultures do not colonize the intestines the way kefir cultures do. Kefir probiotics are self-replicating, yogurt probiotics are not. > --BVC eliminates all grains while BED allows a few (millet, buckwheat and amaranth if I remember correctly). We were doing the BED, but eliminated all grains. BTW, amaranth, buckwheat, and quinoa aren't botanically grains. I went with the BED because we needed to halt the escalating spiral of new food intolerances....every two weeks a new food became unavailable. BED radically reduced the glycemic index of their diets while NT provided probiotic foods. I used BVC to fill in the gaps to see if I was missing anything. When they conflicted, I chose the most austere, conservative of the two. > --BVC allows all fruit while BED only allows a select few. Since fruits tend to have high glycemic indexes, I would encourage following the BED's guidelines for fruit if treating candida/leaky gut. > --BVC is against sea veggies while BED promotes sea veggies. Since we can't use iodized salt, I use sea veggies when possible for the iodine. > --BVC is against inulin and FOS while BED thinks they're good. > I found FOS to be useless for us. JME. > I would recommend anyone trying to deal with autism to read both and try to sort out what the common truths are between them. Personally, plain raw milk makes me gassy but homemade yogurt does not. > > www.bodyecologydiet.com > > http://www.breakingtheviciouscycle.info/ > > <nodding> It's possible that both are successful diets, depending on the individual's causal factor and need. In our case, the BED worked, since most of the foods my children could not tolerate were " off the menu " on the BED anyway. She just gave me a bit more structure and organization and I added in coconut milk kefir, Primal Defense, and NT fermented foods. HTH! --s Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2004 Report Share Posted September 5, 2004 this is so frustrating because the child (and the mother actually) have been using the SCD/BED diet for awhile - alhought slightly modified - with hardly any improvement. they've been STRICT gluten free/casein free/sugar free for a long time now - more than a year i belive. they've also starting following NT, although obviously without any dairy products. and everything is organic/pastured. he eats fermented veggies with every meal. no bettering of symptoms. and it doesn't appear to be die-off since according to the CDSA, there isn't any bad bacteria/yeast in his system. i realize these tests can be flawed, but i don't suspect anything with this child aside from LGS/severe dysbiosis. again, mom is bonkers bending over backwards trying to come up with foods kid can eat. and she's VERY strict - no *bad* stuff slips in there. poor kid is STARVING on this mainly meat/veggie diet!!! thanks so much for answering... erica z - In , katja <katja@a...> wrote: > well, are they eating NT, or gluten free and casein free? eating NT is not > enough. they need to be rampantly gluten free and also casein free. the > child might in fact be able to tolerate casein in the future, but in the > beginning, they need to assume it's a problem. keep in mind that casein > intolerance is not usually resolved by drinking raw milk, though you might > try purebred guernsey milk, which has a different casein type than all > other cow milk. goat and sheep milk is also out. > > to get any benefit, the child really needs to eat just meat and vegetables > (and very moderate fruits) for a while. also supplement strongly with cod > liver oil and remember that you have however much gut damage to heal, too. > you should see " bettering " of the symptoms, but it might not go totally > away until there's some healing. they should try to eat lactofermenteds at > every meal - hopefully the child will like kimchi. rejuvenac (a drink made > just from the juice of lacto-fermented cabbage) is good too. kefir is out > until you figure out the casein part. > > and can i stress again? *rampantly* gfcf. if they let some stuff slip in, > then it's all for naught. > > > -katja > > At 04:30 PM 9/3/2004, you wrote: > >i read it - and was somewhat dismayed by the lack of information. > >the mama cut out wheat and dairy and magically her kid was markedly > >better?! > >so many professionals are now saying that raw dairy can be > >therapeutic for these kids. > >and it seems to me - what works for one kid doesn't necessarily work > >for another. makes sense since adults are different - why would it > >be any different with children?! > > > >my client is mildly autistic and has not been doing well on a > >modified NT diet. his CDSA (comprehensive diagnostic stool analysis) > >came back showing the only major concern is that he is lacking in > >good bacteria. surprising since this kid has violent mood swings and > >chronic loose stools. > > > >the mom is going bonkers - constantly trying new recipes (using lots > >of NT foods, although she's reluctant to give him coconut products > >since he has reacted violently in the past) and he isn't getting any > >better. > > > >very frustrating:( > > > >erica z > > > > > > > >I've loosely been following the conversation about balancing the > >gut > > > >before healing can occur - and I'm wondering if anyone has > > > >experience with autism (either directly or indirectly) and gut > > > >permeability. How was it treated with diet? Was the treatment > > > >successful or were drugs/supplementation necessary? > > > > > > > >Thanks in advance... > > > >a Z > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2004 Report Share Posted September 5, 2004 > Re: Diet and Autism > > >this is so frustrating because the child (and the mother actually) >have been using the SCD/BED diet for awhile - alhought slightly >modified - with hardly any improvement. they've been STRICT gluten >free/casein free/sugar free for a long time now - more than a year i >belive. they've also starting following NT, although obviously >without any dairy products. and everything is organic/pastured. he >eats fermented veggies with every meal. a, Has she explored the mercury angle? It might be worth her time to go to the Autism-mercury list ( - 3600 members) and find out more about this connection. Many of them are having great success treating their autistic kids with Hg chelation. She could run a hair elements test and apply Andy Cutler's counting rules (indicating whether or not there is Hg toxicity), then take it from there. Suze Fisher Lapdog Design, Inc. Web Design & Development http://members.bellatlantic.net/~vze3shjg Weston A. Price Foundation Chapter Leader, Mid Coast Maine http://www.westonaprice.org ---------------------------- “The diet-heart idea (the idea that saturated fats and cholesterol cause heart disease) is the greatest scientific deception of our times.” -- Mann, MD, former Professor of Medicine and Biochemistry at Vanderbilt University, Tennessee; heart disease researcher. The International Network of Cholesterol Skeptics <http://www.thincs.org> ---------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2004 Report Share Posted September 5, 2004 ----- Original Message ----- From: " hlthgrl5275 " > this is so frustrating because the child (and the mother actually) > have been using the SCD/BED diet for awhile - alhought slightly > modified - with hardly any improvement. How long is " a while? " My kids were three or four months on this diet before I could start adding things back in. We are over six months into the healing process and even now, some things are still reactive (soy, corn, cow's milk, legumes). they've been STRICT gluten > free/casein free/sugar free for a long time now - more than a year i > belive. they've also starting following NT, although obviously > without any dairy products. and everything is organic/pastured. he > eats fermented veggies with every meal. Sounds like she's doing a lot of right things, but it does take a loooooong time for healing to occur. We've been gf for two years and cf for one of those years. I need to dig up the cites, but there're authoritative sources that indicate that it takes 2-3 years for complete gut healing to occur. If this child is vaccine damaged, that might compound the process, yk? > no bettering of symptoms. and it doesn't appear to be die-off since > according to the CDSA, there isn't any bad bacteria/yeast in his > system. i realize these tests can be flawed, but i don't suspect > anything with this child aside from LGS/severe dysbiosis. Have they tested for other bacterial infection or parasites? While I was BEDing with my children, they were getting *a lot* of garlic....2 T of raw garlic juice a day, in fact....IOT kill off any bacterial or parasitical elements. (The tests that my doctor administered showed up negative for anything that would create dysbiosis, so he refused to rx anything for it....despite the fact that my children all had external symptoms of yeast, like athlete's foot and toenail fungus. ) If gut dysbiosis is going on, then it is bacterial, candidal, or parasitical. If candida isn't in the mix, I'd been doing more focus on the other two possibilities. BTW, if it isn't Great Plains or Great Smokies labs doing the tests, then I wouldn't place a great deal of confidence in the results. JMO. > again, mom is bonkers bending over backwards trying to come up with > foods kid can eat. and she's VERY strict - no *bad* stuff slips in > there. poor kid is STARVING on this mainly meat/veggie diet!!! Starving actually or feeling deprived? My children were doing this for 4 months and they didn't lose any weight, but they did feel the pinch of very austere eating. It was a very grim and desperate time. I can identify with this mom....I lived in fear that my children would be reduced to a liquid diet before too long. In addition, and especially *because of*, the diet they were doing, I was mega scrupulous about making sure that they were getting at least the RDA for all of the essential vitamins (especially D & A) and minerals, at least 4000 mg of fish oil a day, and even twiddled with amino acids that heal gut lining like l-glutamine. Coconut milk kefir and kombucha tea (made with gunpowder tea, nettles, oatstraw, and red raspberry leaf....reputed combination for chelating heavy metals, but I don't have any scientific verification for this) also. I dug around and researched for everything that was anti-inflammatory wrt foods, spices, etc. and made sure that was a part of their diet in some way, as well. I'd highly recommend _Children with Starving Brains_ by Jaquelyn McCandless for her to read. And there's another food list that I'm on where the moms are dealing with exactly the kind of stuff she's struggling with. Have her drop me an email about getting subbed, if she is interested. --s Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2004 Report Share Posted September 5, 2004 >again, mom is bonkers bending over backwards trying to come up with >foods kid can eat. and she's VERY strict - no *bad* stuff slips in >there. poor kid is STARVING on this mainly meat/veggie diet!!! > >thanks so much for answering... >erica z Has the kid been allergy tested? It's NOT the same for all kids. I do know a kid who is going to a clinic to be massively tested for 4 days, it'll be interesting to see how it comes out. On allergy tests though he is allergic to a lot of foods (IgG testing) ... wheat being one of them, but hot dogs set him off big time and none of his allergens are in hot dogs. Also someone I know seems to react to commercial beef ... I don't know if he'd react to grass fed or not, he won't eat beef AT ALL at this point, but he's gotten much better since he switched to pork. Which isn't very helpful, I guess ... my heart goes out to the woman, and it's great she is *trying* ... but so much more research needs to be done at this point! Some parents *have* succeeded though, maybe trying one thing after another. I disagree with the SCD approach though, esp. for kids, esp. if the kid is " starving " . My kids don't get gluten ... but they get potatoes and bread etc. They are beginning to prefer fat and meat over rice and potatoes ... but not all kids can digest fat well, esp. if they have digestion problems to begin with, so feeding them meat and non-starchy vegies is really hard on them (not to mention there are different metabolic types to begin with). The SCD was originally to combat Crohn's disease, which is a specific condition that is hard to combat. IME most folks don't have to go that extreme to get good results. Also, based on my own experience, fermented milk may NOT be ok. I react to it ... not as much as other milk, but even my beloved kefir seems to result in migraines if I get too much of it. Raw goat milk caused a reaction too. Most of my reactions are in my brain, it's a drug for me, even though my gut is basically ok now. But cutting out casein and gluten have NOT been a big deal for me, except when eating out. Last night we had Thai food, Satay with peanut dipping sauce and coconut-milk based soup, with rice. The whole house smelled marvelous! Heidi Jean Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2004 Report Share Posted September 6, 2004 At 12:24 PM 9/5/2004, you wrote: >a, > >Has she explored the mercury angle? It might be worth her time to go to the >Autism-mercury list ( - >3600 members) and find out more about this connection. Many of them are >having great success treating their autistic kids with Hg chelation. She >could run a hair elements test and apply Andy Cutler's counting rules >(indicating whether or not there is Hg toxicity), then take it from there. > yeah, i agree. sounds like mercury is the unexplored thing. though, " starving " on meat and veggies? -katja Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2004 Report Share Posted September 9, 2004 Hi Suze, Sorry it's taken so long to respond - I had some minor surgery yesterday so I've been less than active online. Yes, the mom has done heavy metal testing and went the homeopathic route to detox after the results for his mercury levels were through the roof. The homeopathic remedies used seemed to work but mom was thrown by how dramatically. Seems he dumped lots of the metal and was violently ill. Mom is a bit hesitant to use more hardcore methods of dumping heavy metals because of how sick Max will undoubtedly get. It's been a year since the initial heavy metal testing so they'll be revisiting that again in the near future. Thanks again, a Z > > Re: Diet and Autism > > > > > >this is so frustrating because the child (and the mother actually) > >have been using the SCD/BED diet for awhile - alhought slightly > >modified - with hardly any improvement. they've been STRICT gluten > >free/casein free/sugar free for a long time now - more than a year i > >belive. they've also starting following NT, although obviously > >without any dairy products. and everything is organic/pastured. he > >eats fermented veggies with every meal. > > > a, > > Has she explored the mercury angle? It might be worth her time to go to the > Autism-mercury list (Autism- Mercury - > 3600 members) and find out more about this connection. Many of them are > having great success treating their autistic kids with Hg chelation. She > could run a hair elements test and apply Andy Cutler's counting rules > (indicating whether or not there is Hg toxicity), then take it from there. > > > > > Suze Fisher > Lapdog Design, Inc. > Web Design & Development > http://members.bellatlantic.net/~vze3shjg > Weston A. Price Foundation Chapter Leader, Mid Coast Maine > http://www.westonaprice.org > > ---------------------------- > " The diet-heart idea (the idea that saturated fats and cholesterol cause > heart disease) is the greatest scientific deception of our times. " -- > Mann, MD, former Professor of Medicine and Biochemistry at Vanderbilt > University, Tennessee; heart disease researcher. > > The International Network of Cholesterol Skeptics > <http://www.thincs.org> > ---------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2004 Report Share Posted September 9, 2004 Max has been on the strict GF/CF diet for a year now. And, I believe she's well aware that it takes time for the gut to heal. She just wants to be sure that this strict diet is needed, KWIM? Yes, he is vaccine damaged - MMR, specifically. As I mentioned before, he had the CDSA (stool analysis) done a month ago and no yeasts or bad bacteria was found. What did come back in the abnormal range is the good bacteria. Zilch. Why would you not put much confidence in the results? My guess is that Max is feeling deprived rather than truly starving. And, mom has Max on many supplements including many of the ones you've mentioned. Anyhow, I'd love to talk with you more about this offlist since you seem to have a nice handle on it. If you don't mind I'd love it if you could email me with your email address. And then perhaps you could coorespond with my client - she could really use some encouragement from another mom with similar circumstances. Thanks! a Z > > ----- Original Message ----- > From: " hlthgrl5275 " > > > this is so frustrating because the child (and the mother actually) > > have been using the SCD/BED diet for awhile - alhought slightly > > modified - with hardly any improvement. > > How long is " a while? " My kids were three or four months on this diet > before I could start adding things back in. We are over six months into the > healing process and even now, some things are still reactive (soy, corn, > cow's milk, legumes). > > they've been STRICT gluten > > free/casein free/sugar free for a long time now - more than a year i > > belive. they've also starting following NT, although obviously > > without any dairy products. and everything is organic/pastured. he > > eats fermented veggies with every meal. > > Sounds like she's doing a lot of right things, but it does take a loooooong > time for healing to occur. We've been gf for two years and cf for one of > those years. I need to dig up the cites, but there're authoritative sources > that indicate that it takes 2-3 years for complete gut healing to occur. If > this child is vaccine damaged, that might compound the process, yk? > > > no bettering of symptoms. and it doesn't appear to be die-off since > > according to the CDSA, there isn't any bad bacteria/yeast in his > > system. i realize these tests can be flawed, but i don't suspect > > anything with this child aside from LGS/severe dysbiosis. > > Have they tested for other bacterial infection or parasites? While I was > BEDing with my children, they were getting *a lot* of garlic....2 T of raw > garlic juice a day, in fact....IOT kill off any bacterial or parasitical > elements. (The tests that my doctor administered showed up negative for > anything that would create dysbiosis, so he refused to rx anything for > it....despite the fact that my children all had external symptoms of yeast, > like athlete's foot and toenail fungus. ) If gut dysbiosis is going on, > then it is bacterial, candidal, or parasitical. If candida isn't in the > mix, I'd been doing more focus on the other two possibilities. BTW, if it > isn't Great Plains or Great Smokies labs doing the tests, then I wouldn't > place a great deal of confidence in the results. JMO. > > > again, mom is bonkers bending over backwards trying to come up with > > foods kid can eat. and she's VERY strict - no *bad* stuff slips in > > there. poor kid is STARVING on this mainly meat/veggie diet!!! > > Starving actually or feeling deprived? My children were doing this for 4 > months and they didn't lose any weight, but they did feel the pinch of very > austere eating. It was a very grim and desperate time. I can identify with > this mom....I lived in fear that my children would be reduced to a liquid > diet before too long. > > In addition, and especially *because of*, the diet they were doing, I was > mega scrupulous about making sure that they were getting at least the RDA > for all of the essential vitamins (especially D & A) and minerals, at least > 4000 mg of fish oil a day, and even twiddled with amino acids that heal gut > lining like l-glutamine. Coconut milk kefir and kombucha tea (made with > gunpowder tea, nettles, oatstraw, and red raspberry leaf....reputed > combination for chelating heavy metals, but I don't have any scientific > verification for this) also. I dug around and researched for everything > that was anti-inflammatory wrt foods, spices, etc. and made sure that was a > part of their diet in some way, as well. > > I'd highly recommend _Children with Starving Brains_ by Jaquelyn McCandless > for her to read. And there's another food list that I'm on where the moms > are dealing with exactly the kind of stuff she's struggling with. Have her > drop me an email about getting subbed, if she is interested. > > --s Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2004 Report Share Posted September 9, 2004 Hi Heidi, ITA - I have such respect for this Mom. I have heard of so many parents who refuse to change their family's diet regardless of whether one or all of the family members could benefit. Too difficult they say. Grrr. Max has been allergy tested - although mom usually just goes by instinct. For instance, there are certain foods (and spices) Max always reacts to. Coconut is one. She gave him some on a few occasions and the kid woke up from a deep sleep each time screaming at the top of his lungs. Mom is also FANATIC about him not having any commercial beef or produce. Everything is organic and/or grass fed. And, ITA that most people do not have to go to extremes (i.e a strict diet like SCD) in order to have wonderful results from a diet change. I'm a huge proponent of NOT adhering to any one diet but rather paying close attention to how specific constitutions react to typically (and sometimes not typically) allergenic foods. What do you mean most of your reactions are in your brain? That it's psychosomatic? a Z > > >again, mom is bonkers bending over backwards trying to come up with > >foods kid can eat. and she's VERY strict - no *bad* stuff slips in > >there. poor kid is STARVING on this mainly meat/veggie diet!!! > > > >thanks so much for answering... > >erica z > > Has the kid been allergy tested? It's NOT the same for all kids. I > do know a kid who is going to a clinic to be massively tested > for 4 days, it'll be interesting to see how it comes out. On > allergy tests though he is allergic to a lot of foods (IgG testing) ... > wheat being one of them, but hot dogs set him off big time > and none of his allergens are in hot dogs. > > Also someone I know seems to react to commercial beef ... I don't > know if he'd react to grass fed or not, he won't eat beef AT ALL > at this point, but he's gotten much better since he switched > to pork. > > Which isn't very helpful, I guess ... my heart goes out to the woman, > and it's great she is *trying* ... but so much more research needs > to be done at this point! Some parents *have* succeeded though, > maybe trying one thing after another. > > I disagree with the SCD approach though, esp. for kids, esp. if the > kid is " starving " . My kids don't get gluten ... but they get potatoes > and bread etc. They are beginning to prefer fat and meat over > rice and potatoes ... but not all kids can digest fat well, esp. if they > have digestion problems to begin with, so feeding them meat and > non-starchy vegies is really hard on them (not to mention > there are different metabolic types to begin with). The SCD was > originally to combat Crohn's disease, which is a specific condition > that is hard to combat. IME most folks don't have to go that extreme > to get good results. > > Also, based on my own experience, fermented milk may NOT be > ok. I react to it ... not as much as other milk, but even my beloved > kefir seems to result in migraines if I get too much of it. Raw goat > milk caused a reaction too. Most of my reactions are in my brain, > it's a drug for me, even though my gut is basically ok now. > > But cutting out casein and gluten have NOT been a big deal for > me, except when eating out. Last night we had Thai food, Satay > with peanut dipping sauce and coconut-milk based soup, with rice. > The whole house smelled marvelous! > > > Heidi Jean Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2004 Report Share Posted September 9, 2004 >And, ITA that most people do not have to go to extremes (i.e a >strict diet like SCD) in order to have wonderful results from a diet >change. I'm a huge proponent of NOT adhering to any one diet but >rather paying close attention to how specific constitutions react to >typically (and sometimes not typically) allergenic foods. She sounds like a great Mom! >What do you mean most of your reactions are in your brain? That it's >psychosomatic? No, I mean my neurons react. I lose the sense of where my hands and feet are (and trip and bump into things a lot) and I get depressed, anxious, or angry. Also I can't think well or negotiate in 3D ... I can write or program, but often can't talk and make sense, if I have gluten or casein. I THOUGHT it was psychosomatic at one point, until I really tracked it on paper and realized there were real physical symptoms (like little dots on my skin). The problem is, when your brain isn't functioning well, it is really hard to analyze things ... > Heidi Jean Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2004 Report Share Posted September 9, 2004 > the roof. The homeopathic remedies used seemed to work but mom was > thrown by how dramatically. Seems he dumped lots of the metal and > was violently ill. Mom is a bit hesitant to use more hardcore > methods of dumping heavy metals because of how sick Max will > undoubtedly get. I've done mercury detox using DMPS injections, as well as DMSA orally. Both of these are pretty rough. The DMPS really was really tough on the body. The group has an interesting way of testing using hair analysis. I think it is worthwhile to check out. http://home.earthlink.net/~moriam/HOW_TO_hair_test.html#counting_rule s Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2004 Report Share Posted September 9, 2004 For years I had an insatiable hunger, I was literally starving to death (6'0 " 135lbs), even though I was eating mass quantities of food. I always needed a combination of fat, protein and bread to feel somewhat satisfied. If I skipped the the bread I would not feel full. Maybe adding more fat to the diet will help the kid from feeling " starving " . The latest Mothering magazine has an article on autism and diet (and a vaccine article). http://www.mothering.com/1-0-0/1-0-0.shtml Mothering Issue 126, September/October 2004 Autism & Vaccine Injury: One Child's Recovery By Romaniec How a change in diet saved a child with autism. In The Wake Of Vaccines By Barbara Loe Fisher Chronic illness and vaccinations: Is there a connection? -Dan > this is so frustrating because the child (and the mother actually) > have been using the SCD/BED diet for awhile - alhought slightly > modified - with hardly any improvement. they've been STRICT gluten > . > . > there. poor kid is STARVING on this mainly meat/veggie diet!!! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2004 Report Share Posted September 9, 2004 ----- Original Message ----- From: " hlthgrl5275 " <> > Max has been on the strict GF/CF diet for a year now. And, I believe > she's well aware that it takes time for the gut to heal. She just > wants to be sure that this strict diet is needed, KWIM? IMO, the answer is probably " yeah. " For at least two or three more years. It's tough. > Yes, he is vaccine damaged - MMR, specifically. <nodding> It's almost cliche these days. Breaks my heart. > As I mentioned before, he had the CDSA (stool analysis) done a month > ago and no yeasts or bad bacteria was found. What did come back in > the abnormal range is the good bacteria. Zilch. > Why would you not put much confidence in the results? As I understand it, CDSA is a *type* of stool analysis. I'm suggesting that there are *test administrators* such as Great Smokies, who administer these same types of tests and are recognized as being most valid and reliable. Not all tests and administrators perform equally....my own doctor's lab sample is an example of that. I'm a little puzzled on how he can come back with no bad bacteria, but also no good gut bacteria. It is more typical that in the absence of good gut bacteria, the bad stuff will invade and overgrow. I'm at a loss as to see how he is testing the absence of *both*.....which makes me question the test validity. But then I'm not a doctor and it is possible that I don't know what I don't know. You know? > My guess is that Max is feeling deprived rather than truly starving. > I can certainly understand that dynamic! Meat and veggies provide enough nutrition (supplemented with vitamins for whatever is missing) will nourish him, but we tend to miss what we used to have, especially in the presence of others eating it. > And, mom has Max on many supplements including many of the ones > you've mentioned. Terrific! > Anyhow, I'd love to talk with you more about this offlist since you > seem to have a nice handle on it. If you don't mind I'd love it if > you could email me with your email address. And then perhaps you > could coorespond with my client - she could really use some > encouragement from another mom with similar circumstances. Sure! Feel free to share my email addy with her. --Suzanne Noakes snoakes@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2004 Report Share Posted September 10, 2004 > Re: Diet and Autism > > >Hi Suze, > >Sorry it's taken so long to respond - I had some minor surgery >yesterday so I've been less than active online. > > >Yes, the mom has done heavy metal testing and went the homeopathic >route to detox after the results for his mercury levels were through >the roof. The homeopathic remedies used seemed to work but mom was >thrown by how dramatically. Seems he dumped lots of the metal and >was violently ill. Mom is a bit hesitant to use more hardcore >methods of dumping heavy metals because of how sick Max will >undoubtedly get. >It's been a year since the initial heavy metal testing so they'll be >revisiting that again in the near future. > >Thanks again, >a Z Hi a, In that case I suggest she check out Andy Cutler's protocol. She can get a summary of it from the Autism-mercury list. Or if she wants his book she can get it from http://www.noamalgam.com It's a conservative protocol aimed at NOT dumping a bunch of Hg into the system all at once. It does take time - from months to years. But there are many autistic kids making great progress with this protocol. And here are love letters from many folks (including parents of autistic kids) describing some of their improvements from chelation. Offhand, do you know what type of testing he had done which showed high Hg levels? Suze Fisher Lapdog Design, Inc. Web Design & Development http://members.bellatlantic.net/~vze3shjg Weston A. Price Foundation Chapter Leader, Mid Coast Maine http://www.westonaprice.org ---------------------------- “The diet-heart idea (the idea that saturated fats and cholesterol cause heart disease) is the greatest scientific deception of our times.” -- Mann, MD, former Professor of Medicine and Biochemistry at Vanderbilt University, Tennessee; heart disease researcher. The International Network of Cholesterol Skeptics <http://www.thincs.org> ---------------------------- > Quote Link to comment Share on other sites More sharing options...
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