Guest guest Posted December 8, 2001 Report Share Posted December 8, 2001 My daughter is 13 and we began the enzymes 10 days ago. She had been gluten and casein free for three years. While she's had some hyperactivity with the enzymes (I haven't started Natural Calm yet), overall she's been great. The obvious improvement we've noticed is the happy child effect. Major disappointments don't result in a half hour tantrum now!!!!! We had another disappointment today - I'd gotten the new gymnastics time wrong and we had to miss gymnastics. She was upset for about 60 seconds!!!! This is a major improvement in our quality of life. She seems to be learning new concepts easier but it's hard to be objective about that. I've had her on Nystatin, Kirkman's, other herbal anti-fungals continuously for a year or so and I want to work on that more seriously too since the enzymes can help with the yeast. I suspect she has some yeast problem still. We started with one Peptizyde and one ZymePrime with breakfast and dinner. Just noted some hyperactivity. Then increased it to one of each at every meal on Day 4. The last couple of days, I've also been giving her a ZymePrime with snacks. The question is when can I try some infractions - basically staying gluten/casein free but going to a restaurant and not being so hyper about everything? Should I wait until we've been on the enzymes longer and I've done some more anti-yeast treatment so that her gut is in better shape? Can she try a piece of bread now? She's been egg sensitive - should her first infraction test be something that is not gluten/casein? Should I up both enzymes if we are trying an infraction? Thanks for all the work and contributions on this message board - it's been a great help! Terry Mom to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2001 Report Share Posted December 8, 2001 Terry: > My daughter is 13 and we began the enzymes 10 days ago. She had been > gluten and casein free for three years. While she's had some > hyperactivity with the enzymes (I haven't started Natural Calm yet), > overall she's been great. The obvious improvement we've noticed is > the happy child effect. Major disappointments don't result in a half > hour tantrum now!!!!! We had another disappointment today - I'd > gotten the new gymnastics time wrong and we had to miss gymnastics. > She was upset for about 60 seconds!!!! This is a major improvement > in our quality of life. > > She seems to be learning new concepts easier but it's hard to be > objective about that. This is great, great news. The best measure will be reports from the teachers. Problem-solving was a weakness for my son before enzymes, but only two weeks after starting the Pep and ZP, my son's teacher and speech therapist said he was suddenly improving in this area. They insisted it started after the enzymes. > > I've had her on Nystatin, Kirkman's, other herbal anti-fungals > continuously for a year or so and I want to work on that more > seriously too since the enzymes can help with the yeast. I suspect > she has some yeast problem still. > > We started with one Peptizyde and one ZymePrime with breakfast and > dinner. Just noted some hyperactivity. Then increased it to one of > each at every meal on Day 4. The last couple of days, I've also been > giving her a ZymePrime with snacks. Keep notes on the hyperactivity and post again if it continues to be a problem so we can troubleshoot with you. > > The question is when can I try some infractions - basically staying > gluten/casein free but going to a restaurant and not being so hyper > about everything? Should I wait until we've been on the enzymes > longer and I've done some more anti-yeast treatment so that her gut > is in better shape? Can she try a piece of bread now? She's been > egg sensitive - should her first infraction test be something that is > not gluten/casein? Should I up both enzymes if we are trying an > infraction? Do not do what I did which was to immediately rush to a real, live restaurant and let your child have the yummy restaurant meal of his choice! Actually, my did great, but we were the first ones to use the Pep (that I know of), and given what I know now, I would recommend you proceed a little slower than that. Your child will probably do fine, but I would consider testing with some casein first, watch for any reactions, wait a few days and test with some gluten. If you have any reason to believe your child has celiac disease, I would not give any gluten. My son is also egg sensitive, but has done fine with enzymes. Each child is so different and there will be some trial and error involved. My opinion is that the Pep should be given with all foods, even gfcf snacks in order to break down all proteins. I think many of these kids have difficulty with foods that the parents may not be aware of. I saw the dramatic changes in my son once the enzymes were given with everything, including gfcfsf and egg-free foods. > > Thanks for all the work and contributions on this message board - > it's been a great help! Let us know how your child does. > > Terry > Mom to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2009 Report Share Posted June 14, 2009 Hi priscilla, For us, we can't avoid infractions 100 percent but my daughter is progressing very well. To be honest, we have infractions all the time And i'm not really good with any yeast protocol. We are on round 22 this weekend; the yeasty behavior gets less and less as we do more rounds. We use nofenol and zymeprime enzymes with the meals and yum-yum probiotics 30 minutes after the meal (in the am or pm) and we have the prettiest poops. I also had to figure out if the stemmy behavior was caused by infractions, not enough vitamins, etc. i.e. I was told that clothes chewing, fingernail picking was yeast but when I increased the zinc, it went away. s. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2009 Report Share Posted June 14, 2009 Depends on the kid and how big of a responder they are to the GFCF diet. For us, the biggest risk of cheating was it made the desire to dump the whole diet even stronger... because he didn't have regressions with cheating. We did stop GFCF and I think it took months to see any changes. No changes that really could be attributed directly to the gluten/casein but instead a slowed progress. I often wonder " what if? " as far as our recovery goes. Trying to go GFCF again with a higher functioning 8 yr old boy is a daunting task; one we probably won't take on. How long have you been GFCF? What do you think about the diet? I'm thinking you don't see huge benefits if you are willing to take any risks. Pam > > Hi, > I am very tempted to give my son some of those illegal food eg. Pizza, > sandwiches, cake, take away food ONCE in a blue moon during very special > occasions, do you think that would create a lot of problems or set us back > by a few months of good improvements? > > To minimize any major issues I may encounter, I plan to give him extra > Trienza enzymes. > > Do you think it's wise or a risk too much to take. > > Thanks > > -- > Priscilla > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2009 Report Share Posted June 14, 2009 I was so glad to find this thread, as I have been wondering about similar issues. We (two boys, ages 11 and 9, ADHD and PDD-NOS) have been GFCFSF for 3 years. There is no question that the diet has helped both boys. However, we wonder...and yearn...for easier outings (without packing our own meals and replying " no " to wistful requests to eat " what everyone else is having) and for a lower food bill, and for a wider range of foods. We're still working with HNI enzymes but haven't found the " magic " combination for us. There has to be an end to this restrictive diet. No doubt it helps, but has it healed? (Both boys still have funny poops.) Husband and I are having to take more and more supplements to replace nutrients that we would get from fortified wheat products (B vitamins) and milk (calcium, vit. D). The boys take lots of supplements. We too have been GFCFSF so that our boys don't see us eating what they can't, to avoid " forbidden foods " in the house, and in solidarity. When families permit their children to leave the diet, how do they do it? Do they regret it? (Thanks to the author of the post who spoke to this.) How did they know that their children were ready and had received the maximum benefit from the diet? TIA, On Sun, Jun 14, 2009 at 2:37 PM, < > wrote: > To discuss current issues related to the increasing incidence of autism and > the potential link between excessive mercury exposu > > Messages In This Digest (12 Messages) > > 1a. Re: infractions From: S. 1b. Re: infractions From: noaholiviaian > 2.1. Re: A/C protocol - Added ALA - UPDATE From: jessicagalligani 3a. high > ferritin levels From: pjthreeboys 4a. Re: bed wetting during chelation round > From: danasview 5a. your baby can read dvds? From: SHARON SMITH 5b. Re: your > baby can read dvds? From: Kimberley Yee 6a. Re: Copper/Calcium/Lithium > Questions - ANDY From: RoseGvr@... 6b. Re: Copper/Calcium/Lithium > Questions - ANDY From: mkarty2007 7.1. Re: Please help - Ear > infections/fluid in middle ear From: lucy4gets 8a. Safe Anesthesia From: > Jennefer Pucylowski 8b. Re: Safe Anesthesia From: > View All Topics | Create New Topic > > Messages > > 1a. > > Re: infractions > > Posted by: " S. " imyconsulting@...  imyconsulting > > Sun Jun 14, 2009 6:57 am (PDT) > > Hi priscilla, > For us, we can't avoid infractions 100 percent but my daughter is > progressing very well. To be honest, we have infractions all the time And > i'm not really good with any yeast protocol. > > We are on round 22 this weekend; the yeasty behavior gets less and less as > we do more rounds. We use nofenol and zymeprime enzymes with the meals and > yum-yum probiotics 30 minutes after the meal (in the am or pm) and we have > the prettiest poops. > > I also had to figure out if the stemmy behavior was caused by infractions, > not enough vitamins, etc. i.e. I was told that clothes chewing, fingernail > picking was yeast but when I increased the zinc, it went away. > s. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2009 Report Share Posted June 15, 2009 > > I was so glad to find this thread, as I have been wondering about > similar issues. We (two boys, ages 11 and 9, ADHD and PDD-NOS) have > been GFCFSF for 3 years. There is no question that the diet has helped > both boys. However, we wonder...and yearn...for easier outings > (without packing our own meals and replying " no " to wistful requests > to eat " what everyone else is having) and for a lower food bill, and > for a wider range of foods. We're still working with HNI enzymes but > haven't found the " magic " combination for us. > > There has to be an end to this restrictive diet. After you chelate for enough years you don't need it. >No doubt it helps, > but has it healed? No. > (Both boys still have funny poops.) Husband and I > are having to take more and more supplements to replace nutrients that > we would get from fortified wheat products (B vitamins) and milk > (calcium, vit. D). The boys take lots of supplements. We too have been > GFCFSF so that our boys don't see us eating what they can't, to avoid > " forbidden foods " in the house, and in solidarity. That is the smart way to do it. > When families permit their children to leave the diet, how do they do it? What happens most of the time is the mommy is delusional, and her delusion is twofold: the kid will remain her compliant little baby forever, and the kid really is getting all better even though s/he needs the special diet and a ton of pills every day all day for years on end and is still pretty impaired. In adolescence, nature takes over. The kids get rebellious and take themselves off the diet. Since the diet does not actually cure them, or even really make their underlying condition much better, they then regress horribly. Of course by that point they are big enough it simply isn't possible to MAKE them do what you want. Thus catastrophe ensues. Chelation or other potentially curative interventions are unlikely to be possible. They had to be done back when the kid was compliant and small enough to have no real choice about taking pills, etc. > Do they regret it? Usually. >(Thanks to the author of the post who spoke to > this.) How did they know that their children were ready and had > received the maximum benefit from the diet? The assorted diets are essentially 'aspirin.' They just control symptoms. Every day you are on the diet, some but not all symptoms remain under control. Doesn't matter how long you stay on it, they are NOT 'cured,' they will come back with a vengeance as soon as you go off the diet unless you did something else to correct the cause of them. > TIA, > Andy www.noamalgam.com www.noamgalgam.com/hairtestbook.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2009 Report Share Posted June 15, 2009 --- Andy can you chelate out antibodies? For example, if one had antisacaromyces antibodies [antibodies in chrones,IBD,and celiac] and one had to avoid wheat due to this vs what is labeled ASD.. Would this change. In , " andrewhallcutler " <AndyCutler@...> wrote: > > > > > > I was so glad to find this thread, as I have been wondering about > > similar issues. We (two boys, ages 11 and 9, ADHD and PDD-NOS) have > > been GFCFSF for 3 years. There is no question that the diet has helped > > both boys. However, we wonder...and yearn...for easier outings > > (without packing our own meals and replying " no " to wistful requests > > to eat " what everyone else is having) and for a lower food bill, and > > for a wider range of foods. We're still working with HNI enzymes but > > haven't found the " magic " combination for us. > > > > There has to be an end to this restrictive diet. > > After you chelate for enough years you don't need it. > > >No doubt it helps, > > but has it healed? > > No. > > > (Both boys still have funny poops.) Husband and I > > are having to take more and more supplements to replace nutrients that > > we would get from fortified wheat products (B vitamins) and milk > > (calcium, vit. D). The boys take lots of supplements. We too have been > > GFCFSF so that our boys don't see us eating what they can't, to avoid > > " forbidden foods " in the house, and in solidarity. > > That is the smart way to do it. > > > When families permit their children to leave the diet, how do they do it? > > What happens most of the time is the mommy is delusional, and her delusion is twofold: > > the kid will remain her compliant little baby forever, and > > the kid really is getting all better even though s/he needs the special diet and a ton of pills every day all day for years on end and is still pretty impaired. > > In adolescence, nature takes over. The kids get rebellious and take themselves off the diet. > > Since the diet does not actually cure them, or even really make their underlying condition much better, they then regress horribly. Of course by that point they are big enough it simply isn't possible to MAKE them do what you want. Thus catastrophe ensues. Chelation or other potentially curative interventions are unlikely to be possible. They had to be done back when the kid was compliant and small enough to have no real choice about taking pills, etc. > > > Do they regret it? > > Usually. > > >(Thanks to the author of the post who spoke to > > this.) How did they know that their children were ready and had > > received the maximum benefit from the diet? > > The assorted diets are essentially 'aspirin.' They just control symptoms. Every day you are on the diet, some but not all symptoms remain under control. Doesn't matter how long you stay on it, they are NOT 'cured,' they will come back with a vengeance as soon as you go off the diet unless you did something else to correct the cause of them. > > > TIA, > > > > Andy > > www.noamalgam.com > > www.noamgalgam.com/hairtestbook.html > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2009 Report Share Posted June 21, 2009 I would very much like to know what Andy's response to mildcasedad's question is too. On Wed, Jun 17, 2009 at 7:08 PM, mildcasedad <mildcasedad@...> wrote: > > > Andy, > > The specific guidelines you offer are wonderfully valuable in helping > parents like us decide the next course of action. For instance, if your kid > doesn't respond within the first 5-13 rounds (according to differing posts), > chelation is not as likely to help. > > Can you comfortably offer even a rough sense of where in the chelation > process the need for GFCF and MB-12 supplementation (oral or injections) > might start to go away? > > e.g. [Making this up...] Needs for GFCF and MB-12 probably start to abate > after 1 may start to go away after a year of chelation in the earliest of > cases, and in all but the most extreme cases would not be necessary after 2 > years of 1/2 mg/lb chelation. > > I realize this must vary a lot according to the initial exposure and > absorption/conversion. > > However, without any rough sense for when issues such as the need for GFCF > and MB-12 go away, there's a lot of random experimenting and constant 2nd > guessing of yourself as to whether you're doing the right thing for that > stage of treatment. > > It's hard for me to believe that we can't do a little better than that > given how long people have been trying the AC approach. > > Many thanks for whatever you can offer. > > > > > > > > > I was so glad to find this thread, as I have been wondering about > > > similar issues. We (two boys, ages 11 and 9, ADHD and PDD-NOS) have > > > been GFCFSF for 3 years. There is no question that the diet has helped > > > both boys. However, we wonder...and yearn...for easier outings > > > (without packing our own meals and replying " no " to wistful requests > > > to eat " what everyone else is having) and for a lower food bill, and > > > for a wider range of foods. We're still working with HNI enzymes but > > > haven't found the " magic " combination for us. > > > > > > There has to be an end to this restrictive diet. > > > > After you chelate for enough years you don't need it. > > > > >No doubt it helps, > > > but has it healed? > > > > No. > > > > > (Both boys still have funny poops.) Husband and I > > > are having to take more and more supplements to replace nutrients that > > > we would get from fortified wheat products (B vitamins) and milk > > > (calcium, vit. D). The boys take lots of supplements. We too have been > > > GFCFSF so that our boys don't see us eating what they can't, to avoid > > > " forbidden foods " in the house, and in solidarity. > > > > That is the smart way to do it. > > > > > When families permit their children to leave the diet, how do they do > it? > > > > What happens most of the time is the mommy is delusional, and her > delusion is twofold: > > > > the kid will remain her compliant little baby forever, and > > > > the kid really is getting all better even though s/he needs the special > diet and a ton of pills every day all day for years on end and is still > pretty impaired. > > > > In adolescence, nature takes over. The kids get rebellious and take > themselves off the diet. > > > > Since the diet does not actually cure them, or even really make their > underlying condition much better, they then regress horribly. Of course by > that point they are big enough it simply isn't possible to MAKE them do what > you want. Thus catastrophe ensues. Chelation or other potentially curative > interventions are unlikely to be possible. They had to be done back when the > kid was compliant and small enough to have no real choice about taking > pills, etc. > > > > > Do they regret it? > > > > Usually. > > > > >(Thanks to the author of the post who spoke to > > > this.) How did they know that their children were ready and had > > > received the maximum benefit from the diet? > > > > The assorted diets are essentially 'aspirin.' They just control symptoms. > Every day you are on the diet, some but not all symptoms remain under > control. Doesn't matter how long you stay on it, they are NOT 'cured,' they > will come back with a vengeance as soon as you go off the diet unless you > did something else to correct the cause of them. > > > > > TIA, > > > > > > > Andy > > > > www.noamalgam.com > > > > www.noamgalgam.com/hairtestbook.html > > > > > -- Priscilla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2009 Report Share Posted June 23, 2009 Sorry for the late reply (and I am keeping both prior emails so people know what I am replying to). My internet has been very unreliable all month. I am considering switching providers next month. All I meant is that I don't quite know how to articulate, for myself (and others), the difference between what treatments are curative and which are only symptom management. I don't think there is anything wrong with symptom management in the short run while you try to cope and survive long enough to fix things. I don't know how to articulate it in part because I have made substantial dietary changes and I don't expect to ever eat a " normal " American diet again. Yet, with getting healthier I do tolerate things better that I used to have serious problems with. Although metals are a part of my problem, my main issue is a diagnosis of " atypical cystic fibrosis " (CF). The research I have done and the changes I have seen in my body lead me to believe that getting excess acidity under control by eating differently actually improves the genetic expression. CF basically is about a malfunctioning protein (the CFTR) in the cell membrane -- a protein which acts as a channel handling traffic of certain molecules/atoms into and out of the cell. One thing which causes proteins to mis-fold is a very highly acid environment within the cell and/or solutes in the cell being very out of whack. Either of these situations can " cook " (denature) the proteins and they wind up not folding properly and not becoming a useful tool for the cell. If you reverse these issues, *some* proteins will refold properly. Others won't but at least any new ones that are produced will. So I believe I am far less symptomatic for my genetic disorder because I have interrupted and reversed this downward spiral of: the cell is too acid/otherwise out of whack because the CFTR doesn't function well, so more CFTR's are misfolded, causing the cell to get more out of whack, causing even more CFTR's to misfol...etc. I believe this is a fundamental aspect of " the normal progression of CF " . Anyway, none of that is exactly on topic for this list but I can't really discuss it on CF lists because basically a lot of people on those lists would like to take me out and quietly shoot me, ya know? Later, Michele http://www.healthgazelle.com http://www.kidslikemine.com http://www.solanorail.com > > > > , > > > > We feel the same way about diet here, but we aren't GFCF. We avoid soy which causes rashes and severe vomiting for my son, and since most of it is genetically modified, that's fine. We mainly concentrate on organic non GMO fruits, veggies, some whole grains, and the same with meat/eggs (hormone free, etc.). We can do dairy, but now find we prefer organic coconut milk, we pretty much only do organic hormone free yogurt. We have learned what works for each of us, what we feel good on. In that respect it isn't about treating symptoms, so much as avoiding CAUSING symptoms - therefore preventative/curative. I would call it that in light of the fact that if you avoid the SAD, you are not poisoning yourself with chemicals, pesticides, and God only knows what else. And it does become a new way of life. > > > > > This is why I am on this list but have dropped off some others. My doctor told me 'Symptom management is the name of the game' and I know a lot of lists focus on just that because they do not believe one can actually get healthier with a lot of conditions. I never quite know how to articulate the difference because I do eat a " special " diet in some sense and I don't expect to ever go back to eating the typical junk food diet of the typical American. But the things I have done have been curative and not mere symptom management. > > > > > > I got off the last of my maintenance drugs earlier this month. For the first time in about 8 3/4 years, I am drug free. I feel basically " well " for the first time in my life, though I know there is plenty of room for improvement. I took my last dose of my last medication around the weekend of June 7th, which coincidentally was my 44th birthday. It's clear to me things I am doing (many of which were learned on this list) are " curative " , though I remain at a loss as to how to distinguish between the " special diet " I still eat and the " special diets " that fail to cure and merely symptom management. > > > > > > Michele > > > http://www.healthgazelle.com > > > http://www.kidslikemine.com > > > http://www.solanorail.com > > > > > > Quote Link to comment Share on other sites More sharing options...
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