CerebralChaos
01-08-2006, 07:59 PM
For the past two years or so, my mom has had my brother on a special, "natural" diet that's allegedly beneficial. Gluten-free, wheat-free, etc. etc, so it is a bit limiting. Anyway, I don't recall if it has an actual name, but has anyone had any experience with these? Do they actually work? Now, my mother is all gung-ho about it, but myself as well as some other family members are rather skeptical; it hasn't seemed to help at all, and it seems a bit pointless, quite frankly [based on personal research and just observation alone]. If anything, he's gotten a bit worse. He's never talked [aside from noises, repeating, or saying the minimum amount of words required to answer a question] really, and now he only seems more withdrawn [but not unhappy necessarily, just more quiet] and uninterested. Granted, that could be a growing up thing.
He's 14, by the way. Soon to be 15.
Now, I know I'm no expert. Nor am I a parent, for that matter. It's just that I grow weary of some people acting as if autistic children are like broken toys that need to fixed, or poked and prodded like lab rats. Well, that's a bit of an exaggeration, but I'm just wondering what you all think about those sort of diets. After all, if eating certain foods like french toast and ice cream every so often makes him happy [when he takes pleasure in such few things now], why take it away when it hasn't made any apparent difference for the past few years? But I digress.
He's 14, by the way. Soon to be 15.
Now, I know I'm no expert. Nor am I a parent, for that matter. It's just that I grow weary of some people acting as if autistic children are like broken toys that need to fixed, or poked and prodded like lab rats. Well, that's a bit of an exaggeration, but I'm just wondering what you all think about those sort of diets. After all, if eating certain foods like french toast and ice cream every so often makes him happy [when he takes pleasure in such few things now], why take it away when it hasn't made any apparent difference for the past few years? But I digress.
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heartcreature
01-08-2006, 08:32 PM
I would have to agree that if there has been no improvement it seems pointless, but coming from a parents viewpoint I understand them trying to do all they can to improve your brothers quality of life. As a parent with an autistic child I'm never sure if I'm doing the right thing for my child.
If certain peoples theory is correct and autism has something in common with the flora of the gut then the gluten free diet is a good thing. The thing is that it's not all been proven.
If certain peoples theory is correct and autism has something in common with the flora of the gut then the gluten free diet is a good thing. The thing is that it's not all been proven.
2cutekids
01-09-2006, 09:47 AM
My son is on this diet for the last 1 1/2 yrs and I can say, with out a doubt, it was the single best thing that I have ever done for him. He can now hold conversations with us, not flap or screach, and reason and he just all around better. He is learning again after about 6 mos before the diet that he just stayed the same. 6 mos is alot in a childs life.
He is in a mainstream kingergarten class and recieves only about 2 hours of services through the school a week, at that is social skills and speech cause he never had it before. Most think that he will only need it for a few years at the most, maybe only next yr and that is it.
I owe all this to the diet. There are some kids that don't react to the diet and sometimes something is sneeking in that you don't realize and corrupting the results.
He is in a mainstream kingergarten class and recieves only about 2 hours of services through the school a week, at that is social skills and speech cause he never had it before. Most think that he will only need it for a few years at the most, maybe only next yr and that is it.
I owe all this to the diet. There are some kids that don't react to the diet and sometimes something is sneeking in that you don't realize and corrupting the results.
ThreeBoys
01-09-2006, 02:42 PM
The diet is called the gf/cf diet. Look it up, because it makes so much sense! You basically have to stay on it for a long period of time to get all the junk out of his system, that could be causing him problems. I don't know the facts about your brother..verbal, non verbal, stimming, etc... But when you start this diet and I mean NO sneaking foods he can't have, they may seem a little worse at the beginning because their body is craving the foods they can't have. Like detoxing, withdrawl. I have my son (4yrs) on the diet now for 5 weeks, and it's HARD. He "stole" a cookie at the grocery store the other day, and he had diarreah for 2 days straight! There is gluten in everything!! Right down to lip balm! There are great desserts he can have and great tasting things that have no gluten in them. And as far as making him happy, it may be doing damage to his body. Has your mom sent off stool,urine and blood samples to see what s going on inside of him?
It's a very hard thing to have a child w/ autism because there is no protocol to follow. No one knows how to treat the person(medically, biomedically) so you have to try a bunch of things! And not everything works for every body.
And like you said about them being treated as if they're" broken" so to speak...I want to make my son healthy. If he will never talk, so be it...but I can be his advocate, and be the person who helps him "feel "better...A lot of parents have to go through a mourning stage. Mourning the child they aren't going to get. Trying to make them "normal". But if they can find a way to help communication, to help digestive problems, and to reach their child in a way no one else can, then I hope they try everything!!! From diet, to chelation to supplements...
I don't want to change my son. If I changed him and formed him then he wouldn't be himself, he'd be a robot. I want him to be the best little boy HE can be! I hope I've helped. Look up the diet and find a DAN! dr website. It makes a lof sense. And maybe you can help your mom out since you sound so concerned and thoughtful. But I'm sure you do that already!!!
It's a very hard thing to have a child w/ autism because there is no protocol to follow. No one knows how to treat the person(medically, biomedically) so you have to try a bunch of things! And not everything works for every body.
And like you said about them being treated as if they're" broken" so to speak...I want to make my son healthy. If he will never talk, so be it...but I can be his advocate, and be the person who helps him "feel "better...A lot of parents have to go through a mourning stage. Mourning the child they aren't going to get. Trying to make them "normal". But if they can find a way to help communication, to help digestive problems, and to reach their child in a way no one else can, then I hope they try everything!!! From diet, to chelation to supplements...
I don't want to change my son. If I changed him and formed him then he wouldn't be himself, he'd be a robot. I want him to be the best little boy HE can be! I hope I've helped. Look up the diet and find a DAN! dr website. It makes a lof sense. And maybe you can help your mom out since you sound so concerned and thoughtful. But I'm sure you do that already!!!
sherry092
01-09-2006, 03:59 PM
Question- I was considering this diet, but my son is on a feeding tube. The formula we make hima t night has whey in it-- is whey a no no on this diet?
BetsyAnn
01-09-2006, 06:26 PM
Question- I was considering this diet, but my son is on a feeding tube. The formula we make hima t night has whey in it-- is whey a no no on this diet?
Yes. Whey contains casein. The diet did not make any difference for my son until we eliminated all trace elements of casein. Then the changes were amazing. I would wait to start the diet until you can find an acceptable alternative for the formula.
Yes. Whey contains casein. The diet did not make any difference for my son until we eliminated all trace elements of casein. Then the changes were amazing. I would wait to start the diet until you can find an acceptable alternative for the formula.
ThreeBoys
01-09-2006, 07:54 PM
Whey has casein in it. That's the "CF" part of the diet.... :rolleyes:
It's hard!!!
It's hard!!!
OrbieKL5
01-09-2006, 10:53 PM
The diet I think you are referring to is the "gluten/casein free diet". Many parents attempt this diet, although it is very hard to stick to, especially since many things have gluten that no one really thinks of--- for example, playdoh.
The diet is not scientifically proven, and is very 50/50 regarding its success. Some parents note significant improvement, and many parents see no difference at all. The big issue with this diet is that if the child gets a hold of ANYTHING with gluten/casein, you're basically back to square one. The child MUST remain gluten/casein free in order for it to work. So it's very hard to pull off if your brother is the only one doing this diet in your household. Easy for him to sneak food or pick up a crumb of a cookie or something.
There is no particular time-frame for the diet to "kick in", but I would say that if you've been doing it for a rather significant time with no improvement, chances are, you will not see a big improvement in the future with the diet. However, I understand your parents eagerness, as many parents are willing to try anything to make their child better.
The diet is not scientifically proven, and is very 50/50 regarding its success. Some parents note significant improvement, and many parents see no difference at all. The big issue with this diet is that if the child gets a hold of ANYTHING with gluten/casein, you're basically back to square one. The child MUST remain gluten/casein free in order for it to work. So it's very hard to pull off if your brother is the only one doing this diet in your household. Easy for him to sneak food or pick up a crumb of a cookie or something.
There is no particular time-frame for the diet to "kick in", but I would say that if you've been doing it for a rather significant time with no improvement, chances are, you will not see a big improvement in the future with the diet. However, I understand your parents eagerness, as many parents are willing to try anything to make their child better.
2cutekids
01-10-2006, 09:22 AM
IN truth, the diet isn't that hard to stick to. In the 1 1/2 yrs I'm been doing it, I have had 1 incidence with gluten and it was my own fault cause I misread the box and it was CLEARLY marked whole wheat.
There is actually Gluten free play doh you can get or some ppl make there own.
If there is an infraction, all it really does it screw the kid up for a few days, it doesn't blow the whole 1 1/2 yrs of the diet.
Alot of the time there is an underlying food allergy that could be setting the symptoms off and you only see they when the diet is in place. My son CAN NOT under any cercimstance have chocoloate or cocoa or anything of the sort, he just can't tollerate it. He is also corn free, grape free, some red food dyes, I limit his soy and he is allergic to eggs. SOOOO, though it is a pain in the butt some times when I'm in a hurry to cook or don't feel like cooking, all in all, it isn't that bad... it is harder with the corn, corn syrup is in everything!
There is actually Gluten free play doh you can get or some ppl make there own.
If there is an infraction, all it really does it screw the kid up for a few days, it doesn't blow the whole 1 1/2 yrs of the diet.
Alot of the time there is an underlying food allergy that could be setting the symptoms off and you only see they when the diet is in place. My son CAN NOT under any cercimstance have chocoloate or cocoa or anything of the sort, he just can't tollerate it. He is also corn free, grape free, some red food dyes, I limit his soy and he is allergic to eggs. SOOOO, though it is a pain in the butt some times when I'm in a hurry to cook or don't feel like cooking, all in all, it isn't that bad... it is harder with the corn, corn syrup is in everything!
geezermom
01-11-2006, 12:16 AM
Since your family has given the diet a shot and it doesn't seem to work, it doesn't make much sense in staying at it.
As for the allergies, it is possible to have blood work run to actually test the child for them. We had our pediatrician run a gazillion tests on our son...one of which was for celiac's disease...allergy to wheat. Since he showed no smidgeon of allergy, we dumped the wheat-free idea. For his immune system, we did a bunch of gamma globulin tests...A-okay.
On the dairy side, our son hates milk, isn't much for icecream, will eat a little yogurt sometimes, but does like cheese. We had no problem eliminating dairy from his diet (tried for 3 weeks)...didn't do diddly-doodle for him.
For as many wonderful, miracle stories that are very true about the diet, there's a bunch of duds, too. You just don't read about them because who writes in about yet another brick wall?
Furthermore, because a child does not live in a bubble where every avenue of his life is held constant, some of the terrific advances he makes may only be partly due to the diet. Autistic kids DO improve as they get older, they do respond to therapy, they do get better going to school...even when they are chugging milk and munching Wheat Thins.
Please don't hate me, ya'll, but the diet does NOT work miracles for everyone. Not in this thread, but in others past, there's been a pseudo-mania saying "do the diet! do the diet! do the diet!" Especially when families of newly diagnosed kids sign in, I believe its important to be objective in advising them. As the gal who started the thread so intuitively noted, sometimes there's not a whole lot of things that give autistic children joy. If a juicy slab of pizza and a milkshake make them happy...and they are not allergic to the stuff...let em have it. You all were very fair in what you stated...I just hope others who live the diet as a mantra keep in mind that we need not promise miracles, while depriving kids of "typical" eats.
Just my opinion.
Geezermom
As for the allergies, it is possible to have blood work run to actually test the child for them. We had our pediatrician run a gazillion tests on our son...one of which was for celiac's disease...allergy to wheat. Since he showed no smidgeon of allergy, we dumped the wheat-free idea. For his immune system, we did a bunch of gamma globulin tests...A-okay.
On the dairy side, our son hates milk, isn't much for icecream, will eat a little yogurt sometimes, but does like cheese. We had no problem eliminating dairy from his diet (tried for 3 weeks)...didn't do diddly-doodle for him.
For as many wonderful, miracle stories that are very true about the diet, there's a bunch of duds, too. You just don't read about them because who writes in about yet another brick wall?
Furthermore, because a child does not live in a bubble where every avenue of his life is held constant, some of the terrific advances he makes may only be partly due to the diet. Autistic kids DO improve as they get older, they do respond to therapy, they do get better going to school...even when they are chugging milk and munching Wheat Thins.
Please don't hate me, ya'll, but the diet does NOT work miracles for everyone. Not in this thread, but in others past, there's been a pseudo-mania saying "do the diet! do the diet! do the diet!" Especially when families of newly diagnosed kids sign in, I believe its important to be objective in advising them. As the gal who started the thread so intuitively noted, sometimes there's not a whole lot of things that give autistic children joy. If a juicy slab of pizza and a milkshake make them happy...and they are not allergic to the stuff...let em have it. You all were very fair in what you stated...I just hope others who live the diet as a mantra keep in mind that we need not promise miracles, while depriving kids of "typical" eats.
Just my opinion.
Geezermom
bercol1
01-11-2006, 06:11 AM
I guess I am with geezermom on this one.
I looked at diet with anthony when he was 3yrs old, at that time we were in a therapy programme. I went to see a dietitian who advised that in her opinion there was no scientific evidence to suggest that diet plays a major role, but she agreed to help put Anthony on a gf/cf diet if I wished. She gave me lots of infromation on it. While anthony was on the progamme he was completley non-verbal and had never ever said one word. I decided to leave the diet for a while and would concider it at a later date ( there was so much else happening at this time). Well the week after visiting the dietitian Anthony said his first word "go" it was like a miricle. He was saying it all the time and at the appropriate time. He was also being much more compliant in his therapy sessions. it was as if the penny had dropped with him and he had raised his level of awarness.
My point is, if I had put him on the diet the week before would i then be putting the advances down to the diet, instead of all the hard work the therapist, the family and Anthony had put in.
It's like everything with autism what works for some children doesn't always work with another. i know some parents who swear by gf/cf diet and if you feel it works for your child then you should always follow what you feel is right. If you feel it's not working then stop. If your brother's frustration at not being allowed ice-cream outways the benifits then i would be opt for ice-cream therapy any day lol
I looked at diet with anthony when he was 3yrs old, at that time we were in a therapy programme. I went to see a dietitian who advised that in her opinion there was no scientific evidence to suggest that diet plays a major role, but she agreed to help put Anthony on a gf/cf diet if I wished. She gave me lots of infromation on it. While anthony was on the progamme he was completley non-verbal and had never ever said one word. I decided to leave the diet for a while and would concider it at a later date ( there was so much else happening at this time). Well the week after visiting the dietitian Anthony said his first word "go" it was like a miricle. He was saying it all the time and at the appropriate time. He was also being much more compliant in his therapy sessions. it was as if the penny had dropped with him and he had raised his level of awarness.
My point is, if I had put him on the diet the week before would i then be putting the advances down to the diet, instead of all the hard work the therapist, the family and Anthony had put in.
It's like everything with autism what works for some children doesn't always work with another. i know some parents who swear by gf/cf diet and if you feel it works for your child then you should always follow what you feel is right. If you feel it's not working then stop. If your brother's frustration at not being allowed ice-cream outways the benifits then i would be opt for ice-cream therapy any day lol
ThreeBoys
01-11-2006, 02:10 PM
I think families shouldn't do the diet if their kids can digest food properly.if they don't have allergies and if their immune system is fine. I think they shouldn't do the diet if their kids are getting all the nutrients they need to function at the best their body can be. HOWEVER, until you get the tests done..stool,urine, blood..you'll never know what the childs body is lacking! Some show no physical signs of being unhealthy, but the tests may come back that they have a yeast problem, parasite problem, vitamin deficeincy,etc...Especially if your kid doesn't talk, how can he tell you if his belly hurts? Maybe he bangs his head to stop thinking about the pain in his belly! My son (to be graphic) has always had mushy stools. His ped said "wouldn't you rather have mushy stools than hard ones?" No, something on the inside isn't right. That's what the diet is all about. Trying it fo ronly a few weeks isn't going to show many if any positive results. The gluten, I've read, stays in your system for up to 3 months!! So if you do the diet, I suggest doing it all the way. That's why they suggest staying on it for 3-6 months trial period, because you won't know what it really can do for the child unless you stick it out.
And I'm not a big fan of the diet. I don't know if it's working for my son. I'm not saying everyone needs to do it. But it heals a lot of the kids guts, and makes them FEEL better. We're doing the diet while we're waiting for his labs to come back. It's hard because at times it feels like a day or two of not trying SOMETHING is a lot of time wasted! And a good point is the diet is healthy. You won't hurt your child by trying it.
I'm not banking on big results. I'll take a little positive, and not know to chalk it up to plain growth, therapy ,the diet or the supplements. But a little step forward is a BIG step for our kids. And I'll go to the ends of the earth to give Chase what CHASE needs. Like everyone says, every child and every approach to healing them is different!
Good Luck to everyone out there!!!
And I'm not a big fan of the diet. I don't know if it's working for my son. I'm not saying everyone needs to do it. But it heals a lot of the kids guts, and makes them FEEL better. We're doing the diet while we're waiting for his labs to come back. It's hard because at times it feels like a day or two of not trying SOMETHING is a lot of time wasted! And a good point is the diet is healthy. You won't hurt your child by trying it.
I'm not banking on big results. I'll take a little positive, and not know to chalk it up to plain growth, therapy ,the diet or the supplements. But a little step forward is a BIG step for our kids. And I'll go to the ends of the earth to give Chase what CHASE needs. Like everyone says, every child and every approach to healing them is different!
Good Luck to everyone out there!!!
I Love LJC
01-11-2006, 05:17 PM
I have been reading up on Medical Interventions For Autism.Also i wanted to pass along that Liz Birt a Loving Mother of a Autistic Son and true Hero for kids with Autism disorders and for the Health for all children in general passed away a few days after Christmas due to a automobile accident.She is greatly appreciated and will be deeply missed:angel:
michelle95
01-24-2006, 07:55 PM
I read about that LJC. We definitely need more people like her. :(
elmhar
02-17-2006, 11:00 PM
I have a 15 1/2 yo DS w/PDD-NOS, very high functioning. We discovered his gluten intolerance 5 1/2 yrs ago, kind of by accident, before the GF/CF diet was really popular, and before he had the 'official dx.'
DS has been GF for 5 1/2 yrs. He will likely need to be on this diet for life. It made a huge difference to digestive issues & brain fog. We did 2 trials with additonally CF, one trial was 6 mos. long, but this yielded no improvement. We DO notice a difference in behavior, etc. when dairy is overdone, beyond reason, as 15 yr. old boys can do with any category of food.
I think that at sometime in the future we will understand & appreciate that there may be more than one 'type' of autism. There may be a common thread connecting these kids, but there are also subgroups. Some of the kids are helped by diet, some are not.
IMO, it's worth a try. Your child won't be hurt by a GF diet unless you run it like a low-carb diet. There is a significant adjustment period that can add to the stress we Moms already face with our kids -- I found tons of help with my local Gluten Intolerance Group -- support, shopping tips, baking tips, how to handle traveling, the works. This diet is ,most helpful when done 100%, and no-one is prepared for the rigor of it.
My only regret is that I didn't find out about it when I was weaning DS off the breast. The earlier the intervention, I think, the better.
Best wishes to all.
DS has been GF for 5 1/2 yrs. He will likely need to be on this diet for life. It made a huge difference to digestive issues & brain fog. We did 2 trials with additonally CF, one trial was 6 mos. long, but this yielded no improvement. We DO notice a difference in behavior, etc. when dairy is overdone, beyond reason, as 15 yr. old boys can do with any category of food.
I think that at sometime in the future we will understand & appreciate that there may be more than one 'type' of autism. There may be a common thread connecting these kids, but there are also subgroups. Some of the kids are helped by diet, some are not.
IMO, it's worth a try. Your child won't be hurt by a GF diet unless you run it like a low-carb diet. There is a significant adjustment period that can add to the stress we Moms already face with our kids -- I found tons of help with my local Gluten Intolerance Group -- support, shopping tips, baking tips, how to handle traveling, the works. This diet is ,most helpful when done 100%, and no-one is prepared for the rigor of it.
My only regret is that I didn't find out about it when I was weaning DS off the breast. The earlier the intervention, I think, the better.
Best wishes to all.
cute24
02-23-2006, 08:50 PM
My son is 5 yrs old and has been on the diet for about 1 1/2 yrs and I eliminate whey from his diet. I use all rice products (flours, bread, crackers).