Guest guest Posted July 16, 2011 Report Share Posted July 16, 2011 Hi T. We're on a 'lower' oxalate diet. We were on an extremely high oxalate diet for a few years, during which there were major set backs here. We've lowered our oxalates as much as we can for now, and are doing much better. We joined the Trying_Low_Oxalates Yahoo group, a supportive and interesting forum with all the information that's available. Owens is the list owner, and she's working like crazy to bring the science together. I highly recommend you join us and see if it's a fit for you. Besides the diet per se, there are supplements recommended which have been extremely helpful here, most notably high dose biotin, since oxalates disable biotin dependent enzymes. There seems to be a connection between the high dose B6 which Bernie Rimland found to be so useful long ago, which if it's low, will cause the body to create endogenous oxalate. So lots of things are tying in. See you there. a H. > > My son has Down syndrome and a PDD/NOS diagnosis (his father may have undiagnosed Aspergers). Joe's father has also had kidney stones. So I was intrigued by the possibility that a low oxalate diet may help with autism. I am just curious to know if anyone has had success with this and what resources you have relied on to implement the low oxalate diet. Thank you in advance. > > T. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2011 Report Share Posted July 16, 2011 Hi a H. Thank you for the info on this group and the B6 issue. This feels a bit overwhelming because we are also now eliminating dairy. Joe's been casein free since 2006. I guess I should be so grateful that all this information is available now. From: phashmall Sent: Saturday, July 16, 2011 5:29 PM To: csb-autism-rx Subject: Re: Low oxalate diet Hi T. We're on a 'lower' oxalate diet. We were on an extremely high oxalate diet for a few years, during which there were major set backs here. We've lowered our oxalates as much as we can for now, and are doing much better. We joined the Trying_Low_Oxalates Yahoo group, a supportive and interesting forum with all the information that's available. Owens is the list owner, and she's working like crazy to bring the science together. I highly recommend you join us and see if it's a fit for you. Besides the diet per se, there are supplements recommended which have been extremely helpful here, most notably high dose biotin, since oxalates disable biotin dependent enzymes. There seems to be a connection between the high dose B6 which Bernie Rimland found to be so useful long ago, which if it's low, will cause the body to create endogenous oxalate. So lots of things are tying in. See you there. a H. > > My son has Down syndrome and a PDD/NOS diagnosis (his father may have undiagnosed Aspergers). Joe's father has also had kidney stones. So I was intrigued by the possibility that a low oxalate diet may help with autism. I am just curious to know if anyone has had success with this and what resources you have relied on to implement the low oxalate diet. Thank you in advance. > > T. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2011 Report Share Posted July 16, 2011 , The Autism Oxalate Project at ARI has a website at www.lowoxalate.info which will give you a link to our support group at Trying_Low_Oxalates . That listserve was started in 2005 and has more than 3800 people on it. The site has an extensive archive of conversations of people doing the low oxalate diet, with most of them using the diet for children and adults with autism. Even so, there are also others there with chronic conditions like interstitial cystitis, vulvodynia, fibromyalgia, chronic fatigue, celiac...those tend to be the adults on the list doing the diet for themselves. The good news is that this group is active, supportive, experienced and very helpful to people new with the diet...a very warm community of fellow travelers. We now have a database of foods tested that is more than a hundred pages long and includes herbal supplements and other things used in the autism community. This list is only available at our yahoogroup. , you might be interested to learn there is a list on Down syndrome called DownsyndromeExploringDiet where there is information about the science of the particular risks the trisomy gives for oxalate issues. The files there contain a discussion of the relevant medical literature on that connection. Even fetuses with Down syndrome have elevated oxalate in their amniotic fluid, but this literature never seems to have been applied practically. A quick subscription to that group and looking through its files will equip you to know the specific risks of oxalate in Down syndrome, but you get the help on the diet from the other TLO listserve. In Down syndrome, basically, the trisomy alters B6 chemistry in such a way that there is a brokenness to the enzyme AGT. Ordinarily AGT will metabolize (to harmless glycine) a metabolic intermediate called glyoxylate. When this conversion doesn't happen, a lot of the glyoxylate will be metabolized to oxalate, glycolic acid, and glyceric acid. The evidence for this can show up on the organic acid test offered by Great Plains. (Nataf's lab also has these markers, but our project has less data from them and not sufficient data to establish percentile ranks or to calculate the urine dilution.) We have a much better understanding of things now because a few months ago we found a reason that explains the instability of creatinine levels in urine that I reported finding in autism to ARI's thinktank about four years ago. Creatinine is used as a standard in computing the dilution of spot urine tests, but when creatinine is secreted to urine in response to a biological signal, it doesn't work! It makes things look low on urine tests when they really aren't low. The people who picked creatinine as the standard for dilution didn't realize that the body sometimes secreted creatinine in large amounts to urine because they must not have been looking at sick enough people! A new study showed this happens in B6 deficiency, so it may be common in Down syndrome for this to be the case. The body starts taking creatinine out of the blood (lowering serum creatinine) and then it will secrete that creatinine to urine. That raises urine creatinine as much as four fold, and because that creatinine is the denominator of every analyte, this lowers the values on the OAT test or other spot urine tests by as much as three or four fold. Since Down syndrome involves a B6 defect, this problem with creatinine might happen all the time! Our project adjusts these reports using the data from the report itself, and that has allowed us to see what never could be seen before the adjustment. We're finding evidence of how a lot of enzymes stop functioning well in this environment. We'll see smaller increases in analytes that usually only get elevated when there is a genetic defect, and some values fall like a stone! Nobody seems to have ever noticed this before because the creatinine was too high and no one knew that was the case. So, using this technique, our project has analyzed more than 300 organic acid tests from children with autism. We've been able to identify subgroups and find the factors that help to identify those who make endogenous oxalate, and those who absorb too much oxalate from the diet because of a leaky gut. But regarding reducing oxalate in the diet, the odds are great that if you improved by reducing gluten in the diet, you will also see more improvements by reducing the oxalate in the diet. For most people, the " big sources " of dietary oxalate are milk substitutes and flour substitutes, spinach, field greens, potatoes, nuts, chocolate and carob, particular spices, and only some fruits and veggies. We'd love to help you get started making this change on our listserve! As your child gradually changes the amount of oxalate in the diet, it will allow his body to detoxify from the oxalate that was stored intracellularly and a lot of things will work better, especially mitochondrial function. If you or anyone else has already done a Great Plains OAT or a series of them (even better), please feel free to write me offlist so you can send me the test. I can do the number crunching and give you feedback on your child's OAT, identifying oxalate patterns and other issues that go with it. Right now, only the Great Plains OAT has the markers that we need and Metametrix lacks those markers. I have to have the whole test, and not just what was marked high. I hope reducing oxalate will make a big difference in your child's life as it has done in so many others... Owens Head of the Autism Oxalate Project at the Autism Research Institute LWO @ iadfw. net > > My son has Down syndrome and a PDD/NOS diagnosis (his father may have undiagnosed Aspergers). Joe's father has also had kidney stones. So I was intrigued by the possibility that a low oxalate diet may help with autism. I am just curious to know if anyone has had success with this and what resources you have relied on to implement the low oxalate diet. Thank you in advance. > > T. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2011 Report Share Posted July 20, 2011 , Thank you so much for this information. I am hopeful that this will open a new avenue for helping my son with his numerous issues. Joe was diagnosed with an obstructive ulcer in Jan. 2009. We have tried many different diets but he remains on Prevacid. I have signed up for the Trying Low Oxalates list serve. I am a little surprised at the discussion of pyrolluria - not sure I understand any of this at this point. I am also B negative blood type so my son was exposed in utero to the Rhogam vaccine in 1990 which I believe is quite high in mercury. I also have had a lot of amalgam in my teeth. So there is much to learn as I make my way through Dr. McCandless' Children with Starving Brains book. Thank you again. From: Sent: Saturday, July 16, 2011 11:25 PM To: csb-autism-rx Subject: Re: Low oxalate diet , The Autism Oxalate Project at ARI has a website at www.lowoxalate.info which will give you a link to our support group at Trying_Low_Oxalates . That listserve was started in 2005 and has more than 3800 people on it. The site has an extensive archive of conversations of people doing the low oxalate diet, with most of them using the diet for children and adults with autism. Even so, there are also others there with chronic conditions like interstitial cystitis, vulvodynia, fibromyalgia, chronic fatigue, celiac...those tend to be the adults on the list doing the diet for themselves. The good news is that this group is active, supportive, experienced and very helpful to people new with the diet...a very warm community of fellow travelers. We now have a database of foods tested that is more than a hundred pages long and includes herbal supplements and other things used in the autism community. This list is only available at our yahoogroup. , you might be interested to learn there is a list on Down syndrome called DownsyndromeExploringDiet where there is information about the science of the particular risks the trisomy gives for oxalate issues. The files there contain a discussion of the relevant medical literature on that connection. Even fetuses with Down syndrome have elevated oxalate in their amniotic fluid, but this literature never seems to have been applied practically. A quick subscription to that group and looking through its files will equip you to know the specific risks of oxalate in Down syndrome, but you get the help on the diet from the other TLO listserve. In Down syndrome, basically, the trisomy alters B6 chemistry in such a way that there is a brokenness to the enzyme AGT. Ordinarily AGT will metabolize (to harmless glycine) a metabolic intermediate called glyoxylate. When this conversion doesn't happen, a lot of the glyoxylate will be metabolized to oxalate, glycolic acid, and glyceric acid. The evidence for this can show up on the organic acid test offered by Great Plains. (Nataf's lab also has these markers, but our project has less data from them and not sufficient data to establish percentile ranks or to calculate the urine dilution.) We have a much better understanding of things now because a few months ago we found a reason that explains the instability of creatinine levels in urine that I reported finding in autism to ARI's thinktank about four years ago. Creatinine is used as a standard in computing the dilution of spot urine tests, but when creatinine is secreted to urine in response to a biological signal, it doesn't work! It makes things look low on urine tests when they really aren't low. The people who picked creatinine as the standard for dilution didn't realize that the body sometimes secreted creatinine in large amounts to urine because they must not have been looking at sick enough people! A new study showed this happens in B6 deficiency, so it may be common in Down syndrome for this to be the case. The body starts taking creatinine out of the blood (lowering serum creatinine) and then it will secrete that creatinine to urine. That raises urine creatinine as much as four fold, and because that creatinine is the denominator of every analyte, this lowers the values on the OAT test or other spot urine tests by as much as three or four fold. Since Down syndrome involves a B6 defect, this problem with creatinine might happen all the time! Our project adjusts these reports using the data from the report itself, and that has allowed us to see what never could be seen before the adjustment. We're finding evidence of how a lot of enzymes stop functioning well in this environment. We'll see smaller increases in analytes that usually only get elevated when there is a genetic defect, and some values fall like a stone! Nobody seems to have ever noticed this before because the creatinine was too high and no one knew that was the case. So, using this technique, our project has analyzed more than 300 organic acid tests from children with autism. We've been able to identify subgroups and find the factors that help to identify those who make endogenous oxalate, and those who absorb too much oxalate from the diet because of a leaky gut. But regarding reducing oxalate in the diet, the odds are great that if you improved by reducing gluten in the diet, you will also see more improvements by reducing the oxalate in the diet. For most people, the " big sources " of dietary oxalate are milk substitutes and flour substitutes, spinach, field greens, potatoes, nuts, chocolate and carob, particular spices, and only some fruits and veggies. We'd love to help you get started making this change on our listserve! As your child gradually changes the amount of oxalate in the diet, it will allow his body to detoxify from the oxalate that was stored intracellularly and a lot of things will work better, especially mitochondrial function. If you or anyone else has already done a Great Plains OAT or a series of them (even better), please feel free to write me offlist so you can send me the test. I can do the number crunching and give you feedback on your child's OAT, identifying oxalate patterns and other issues that go with it. Right now, only the Great Plains OAT has the markers that we need and Metametrix lacks those markers. I have to have the whole test, and not just what was marked high. I hope reducing oxalate will make a big difference in your child's life as it has done in so many others... Owens Head of the Autism Oxalate Project at the Autism Research Institute LWO @ iadfw. net > > My son has Down syndrome and a PDD/NOS diagnosis (his father may have undiagnosed Aspergers). Joe's father has also had kidney stones. So I was intrigued by the possibility that a low oxalate diet may help with autism. I am just curious to know if anyone has had success with this and what resources you have relied on to implement the low oxalate diet. Thank you in advance. > > T. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2011 Report Share Posted July 20, 2011 , I forgot to mention one thing. Our son's ferritin and iron was found to be extremely low - in May 2010, it was 3. We have had him on a high dose of Floradix iron supplement and that has brought up the ferritin to around 25. If you have any information regarding causes of low iron (Joe's ulcer was deemed to be healed Nov. 2010 endoscopy) I would be so grateful. From: Sent: Saturday, July 16, 2011 11:25 PM To: csb-autism-rx Subject: Re: Low oxalate diet , The Autism Oxalate Project at ARI has a website at www.lowoxalate.info which will give you a link to our support group at Trying_Low_Oxalates . That listserve was started in 2005 and has more than 3800 people on it. The site has an extensive archive of conversations of people doing the low oxalate diet, with most of them using the diet for children and adults with autism. Even so, there are also others there with chronic conditions like interstitial cystitis, vulvodynia, fibromyalgia, chronic fatigue, celiac...those tend to be the adults on the list doing the diet for themselves. The good news is that this group is active, supportive, experienced and very helpful to people new with the diet...a very warm community of fellow travelers. We now have a database of foods tested that is more than a hundred pages long and includes herbal supplements and other things used in the autism community. This list is only available at our yahoogroup. , you might be interested to learn there is a list on Down syndrome called DownsyndromeExploringDiet where there is information about the science of the particular risks the trisomy gives for oxalate issues. The files there contain a discussion of the relevant medical literature on that connection. Even fetuses with Down syndrome have elevated oxalate in their amniotic fluid, but this literature never seems to have been applied practically. A quick subscription to that group and looking through its files will equip you to know the specific risks of oxalate in Down syndrome, but you get the help on the diet from the other TLO listserve. In Down syndrome, basically, the trisomy alters B6 chemistry in such a way that there is a brokenness to the enzyme AGT. Ordinarily AGT will metabolize (to harmless glycine) a metabolic intermediate called glyoxylate. When this conversion doesn't happen, a lot of the glyoxylate will be metabolized to oxalate, glycolic acid, and glyceric acid. The evidence for this can show up on the organic acid test offered by Great Plains. (Nataf's lab also has these markers, but our project has less data from them and not sufficient data to establish percentile ranks or to calculate the urine dilution.) We have a much better understanding of things now because a few months ago we found a reason that explains the instability of creatinine levels in urine that I reported finding in autism to ARI's thinktank about four years ago. Creatinine is used as a standard in computing the dilution of spot urine tests, but when creatinine is secreted to urine in response to a biological signal, it doesn't work! It makes things look low on urine tests when they really aren't low. The people who picked creatinine as the standard for dilution didn't realize that the body sometimes secreted creatinine in large amounts to urine because they must not have been looking at sick enough people! A new study showed this happens in B6 deficiency, so it may be common in Down syndrome for this to be the case. The body starts taking creatinine out of the blood (lowering serum creatinine) and then it will secrete that creatinine to urine. That raises urine creatinine as much as four fold, and because that creatinine is the denominator of every analyte, this lowers the values on the OAT test or other spot urine tests by as much as three or four fold. Since Down syndrome involves a B6 defect, this problem with creatinine might happen all the time! Our project adjusts these reports using the data from the report itself, and that has allowed us to see what never could be seen before the adjustment. We're finding evidence of how a lot of enzymes stop functioning well in this environment. We'll see smaller increases in analytes that usually only get elevated when there is a genetic defect, and some values fall like a stone! Nobody seems to have ever noticed this before because the creatinine was too high and no one knew that was the case. So, using this technique, our project has analyzed more than 300 organic acid tests from children with autism. We've been able to identify subgroups and find the factors that help to identify those who make endogenous oxalate, and those who absorb too much oxalate from the diet because of a leaky gut. But regarding reducing oxalate in the diet, the odds are great that if you improved by reducing gluten in the diet, you will also see more improvements by reducing the oxalate in the diet. For most people, the " big sources " of dietary oxalate are milk substitutes and flour substitutes, spinach, field greens, potatoes, nuts, chocolate and carob, particular spices, and only some fruits and veggies. We'd love to help you get started making this change on our listserve! As your child gradually changes the amount of oxalate in the diet, it will allow his body to detoxify from the oxalate that was stored intracellularly and a lot of things will work better, especially mitochondrial function. If you or anyone else has already done a Great Plains OAT or a series of them (even better), please feel free to write me offlist so you can send me the test. I can do the number crunching and give you feedback on your child's OAT, identifying oxalate patterns and other issues that go with it. Right now, only the Great Plains OAT has the markers that we need and Metametrix lacks those markers. I have to have the whole test, and not just what was marked high. I hope reducing oxalate will make a big difference in your child's life as it has done in so many others... Owens Head of the Autism Oxalate Project at the Autism Research Institute LWO @ iadfw. net > > My son has Down syndrome and a PDD/NOS diagnosis (his father may have undiagnosed Aspergers). Joe's father has also had kidney stones. So I was intrigued by the possibility that a low oxalate diet may help with autism. I am just curious to know if anyone has had success with this and what resources you have relied on to implement the low oxalate diet. Thank you in advance. > > T. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2011 Report Share Posted July 20, 2011 (great name!) As you wend your way through Dr. McCandless's excellent book, you will find in the back a mini-chapter on the low oxalate diet that she was gracious to ask me to write for the book. That will give you more background. I wish the Down syndrome list was more active, for I need educating about not obvious things about Down syndrome that may tie into oxalate research in ways I could not anticipate. We now know, for instance, that oxalate is involved in the transporter that works with the cystic fibrosis transporter all over the body in regulating secretions and pH. This is why an oxalate problem may disturb gut function, because the oxalate exchanger in the gut is also a bicarbonate exchanger, but the effects of moving oxalate across the membrane are very different from moving across bicarbonate. There are actually about ten different sulfate/oxalate/sometimes iodine exchangers that coordinate using interaction with the cystic fibrosis transporter. I don't know if you've ever met someone with cystic fibrosis, but the lack of CFTR activity in that condition leaves the lungs and gut with globby mucus that gets in the way of those organs protecting themselves from infection. Not only that, but also impaired is the transport of thiocyanate, a molecule that gets converted by peroxidase enzymes to a powerful antimicrobial that protects our mucus membranes in the lungs and gut. When thiocyanate transport is down, then those peroxidases actually attack our own cells and make them inflamed. This is how oxalate may get into the act of CAUSING gut inflammation....not oxalate that is in the gut, but oxalate that is in the blood. When I found the database the NIH keeps for people who have a genetic form of hyperoxaluria, where the liver makes excess oxalate, most of them have bad GI problems. This observation was made long before the science was done to show how oxalate transporters work in the gut. The sense of their being oxalate transporters is so that the body can detoxify from oxalate when blood levels get high by secreting oxalate to the gut where specific microbes can digest it before it gets reabsorbed in the colon. Without gut secretion, most of it is cleared in the kidneys. So that gives you (and others) some way of making sense of why maybe your son needs prevacid and how LOD would be expected to change things in a way that is different from other diets. , maybe you and I can explore together more details of the B6 issues in Down syndrome. Most of my research in the last three months has been about how B6 deficiencies (or lack of enzyme activity dependent on B6) leads to making oxalate in the body, and that means oxalate that isn't from diet. This other oxalate is important, too! Now we are understanding why and when and where it forms. Bernie Rimland, who founded ARI and the Autism Society of America, was very intrigued by the benefits of B6 therapy combined with magnesium. We've had many reasons to be amazed by his genius in so many areas, but some of his emphasis on B6 got lost in the shuffle when people became fascinated about heavy metals and dybiosis. Now I think we finally have markers to confirm how B6 therapy works in particular children. This is a happy development! > > > > My son has Down syndrome and a PDD/NOS diagnosis (his father may have undiagnosed Aspergers). Joe's father has also had kidney stones. So I was intrigued by the possibility that a low oxalate diet may help with autism. I am just curious to know if anyone has had success with this and what resources you have relied on to implement the low oxalate diet. Thank you in advance. > > > > T. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2011 Report Share Posted July 20, 2011 , is a great name and you wrote a great e-mail. Might I forward it to another list - the Einstein list serve? We have a participant whose daughter has both DS and Cystic fibrosis. I mentioned the low oxalate diet on this list and not a single person responded. This is something that should be of great interest if people understood it and how it might be affecting their child. From: Sent: Wednesday, July 20, 2011 6:56 PM To: csb-autism-rx Subject: Re: Low oxalate diet (great name!) As you wend your way through Dr. McCandless's excellent book, you will find in the back a mini-chapter on the low oxalate diet that she was gracious to ask me to write for the book. That will give you more background. I wish the Down syndrome list was more active, for I need educating about not obvious things about Down syndrome that may tie into oxalate research in ways I could not anticipate. We now know, for instance, that oxalate is involved in the transporter that works with the cystic fibrosis transporter all over the body in regulating secretions and pH. This is why an oxalate problem may disturb gut function, because the oxalate exchanger in the gut is also a bicarbonate exchanger, but the effects of moving oxalate across the membrane are very different from moving across bicarbonate. There are actually about ten different sulfate/oxalate/sometimes iodine exchangers that coordinate using interaction with the cystic fibrosis transporter. I don't know if you've ever met someone with cystic fibrosis, but the lack of CFTR activity in that condition leaves the lungs and gut with globby mucus that gets in the way of those organs protecting themselves from infection. Not only that, but also impaired is the transport of thiocyanate, a molecule that gets converted by peroxidase enzymes to a powerful antimicrobial that protects our mucus membranes in the lungs and gut. When thiocyanate transport is down, then those peroxidases actually attack our own cells and make them inflamed. This is how oxalate may get into the act of CAUSING gut inflammation....not oxalate that is in the gut, but oxalate that is in the blood. When I found the database the NIH keeps for people who have a genetic form of hyperoxaluria, where the liver makes excess oxalate, most of them have bad GI problems. This observation was made long before the science was done to show how oxalate transporters work in the gut. The sense of their being oxalate transporters is so that the body can detoxify from oxalate when blood levels get high by secreting oxalate to the gut where specific microbes can digest it before it gets reabsorbed in the colon. Without gut secretion, most of it is cleared in the kidneys. So that gives you (and others) some way of making sense of why maybe your son needs prevacid and how LOD would be expected to change things in a way that is different from other diets. , maybe you and I can explore together more details of the B6 issues in Down syndrome. Most of my research in the last three months has been about how B6 deficiencies (or lack of enzyme activity dependent on B6) leads to making oxalate in the body, and that means oxalate that isn't from diet. This other oxalate is important, too! Now we are understanding why and when and where it forms. Bernie Rimland, who founded ARI and the Autism Society of America, was very intrigued by the benefits of B6 therapy combined with magnesium. We've had many reasons to be amazed by his genius in so many areas, but some of his emphasis on B6 got lost in the shuffle when people became fascinated about heavy metals and dybiosis. Now I think we finally have markers to confirm how B6 therapy works in particular children. This is a happy development! > > > > My son has Down syndrome and a PDD/NOS diagnosis (his father may have undiagnosed Aspergers). Joe's father has also had kidney stones. So I was intrigued by the possibility that a low oxalate diet may help with autism. I am just curious to know if anyone has had success with this and what resources you have relied on to implement the low oxalate diet. Thank you in advance. > > > > T. > > > > Quote Link to comment Share on other sites More sharing options...
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