Guest guest Posted September 25, 2007 Report Share Posted September 25, 2007 I am concerned about E deficiency since GFCF because the reason they say it is so rare is because lots of stuff, like cereal, is fortified with it. Since my kids cannot have that cereal, are unable to have nuts, E deficiency is a genuine concern. They do get some from eggs though. I think E deficiency is rare in most people without malabsorption or a regular diet. Plus, I think or someone mentioned you could have enough in there but not know where it is going so if you have a transport issue then you need to know. I hope I can get the test. It is not that the docs do not want to help but that they don't see this a lot I guess. I just wish there was some direction because you can't see what you don't acknowledge. bigcheech91 wrote: > Actually, vitamin E sounds more basic to us, but the doctors seem to > be more willing to test for carnitine. We had no problem getting > carnitine testing done by our regular pediatrician, who has another > patient with a deficiency, but vitamin E testing got a blank stare. > He did say that deficiency is rare, for what that is worth. > > in NJ > > > > > > > > > > > Carnaware has L-Carnosine NOT carnitine. I believe that they are > two > > very > > > different supplements. > > > > > > Hey, thanks for that helpful info. You are right. I checked back, > and > > I guess I had just mistyped.. > > > > " Typical vegetarian diets are thought to be lacking in carnosine, > but > > whether this has a detrimental effect on vegetarians is > controversial. " > > > > I accidentally put carnitine instead of carnosine. I was looking at > > carnitine defieciency too around the same time. > > Still anxiously waiting for the Carnaware to arrive. We have had > great > > sucess with ProEfa and ProEpa supplementation. > > > > Someone else recommended that I have his doctor test for the > > defieciency.. it is a great idea, but I don't think I will be able > to > > get his doc to do that. He wouldn't even test him for Vitamin E > > deficiency!! Which is part of the reason why I am frustrated with > docs > > right now .. there is so much information here, and elsewhere, that > I > > think wow, if we could find out some of this info about Liam, then > > maybe I can help him more. Like find out if he has deficiencies, GI > > issues, etc. But the docs won't order the tests. Of course I know > > there are wonderful mainstream docs out there.. but recently I have > > been jaded by my tearful experiences with some of the bad ones. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 Yeah, I did not mean any disrespect to any doctors on this list or other professionals working for our kids. And , after reading some of her posts, she seems like an excellent doctor and just the kind I would love to be able to take my son to see. I am frustrated with doctors that I have seen, for some different reasons that really don't matter now.. as well as I am frustrated about doctors who give no treatment options for children with autism and other related disorders. Because I see that there are many different options out there, that have had some success. I have a friend whose child was diagnosed with autism, her doctor gave her no treatment recommendations other than school therapy. He did not mention diet modification, or supplements, or test for any nutriotional deficiency. I feel like that is a diservice to parents, because some of these methods work. So I don't really understand why many don't mention these ? There are lots of parents like me and everyone on this list who research on their own, and find out information about different treatment options.. but there are many parents who would never do any research like that and just trust the doctor 100%- so I feel for those parents and those kids who have no idea about any of these treatment options that are working so well for many of us. I don't understand why many doctors don't recommend these options, maybe their hands are tied by insurance/liscensing issues, or maybe they just don't know, maybe they don't believe it or who knows. But that upsets me just for all those parents out there whose children could be doing better, if they only had that information. I feel blessed that I am smart enough to research all of this, and have the resources to do so.. but not everyone does.. ya know ? Everyone in America still doesn't have a computer.. What said about doctors really makes sense. But, sigh, it is just so disheartening to know that there are families suffering with a lack of knowledge. My original words were not chosen carefully, because I was in the midst of some emotional frustration, it was just a vent, not meant to be disrespectful to anyone. I still would really like for my son to have a complete workup.. so I continue to be frustrated trying to get that accomplished. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 I have read that carnaware is sometimes very helpful for language development. I thing carnaware is part histidine (which I believe becomes histimine). My son always shows as higher histidine and I was wondering if anyone has tried carnaware that also has a child with pretty high histidine and what your results were? I wonder if it tends to help kids with a histidine deficiency or if that is not a predictor and is worth my trying. Thank you. Michele Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.