So, the ABA program manager for China bambina went to an autism conference and is now suggesting we think about a gluten free casein free diet. On top of that, oxalates are bad and need to clense the toxin build up in China bambina’s body.
Color me skeptical on the oxalates and toxic build up thing. Am I missing something?
I agree that
we should get China Bambina tested for allergies
Switch to organic milk to ovoid the hormones
drink less milk since China Bambina drinks a lot more than a glass or two a day
maybe even try the GFCF for a month or two (gluten free for us isn’t that hard since rice is a staple) to see if there’s any improvement.
Checking if anyone else has kids on the spectrum and what their experience is? I would also be happy to look at objective studies one way or the other.
I was a vegan for a year and lacto oval vegetarian for 10 years, so I’m open to the diet thing.
A friend of mine from high school runs a blog about using the GFCF diet to treat her autistic son, and seems to think the results are positive. About Me « The GFCF Lady
I was always pretty suspicious of the gluten/casein free diet stuff. It’s a part of the Andrew Wakefield school of thought: the MMR vaccine screws up your digestive system and you’ll have behavioral issues whenever you eat gluten/casein. The GFCF stuff could be helpful even though we know the idea that MMR has anything to do with it is garbage. But barring some good studies that show improvements when gluten and casein are eliminated from the diet (which may exist, I haven’t looked for them) I’m hugely skeptical.
I never did diet with my boy. We eat a regular, American diet with a little more veggies and a little less meat than average.
The thing that helped my son the most was early and regular therapy.
He had assistance since birth due to prematurity for developmental delays, and then aggressive therapy all during the elementary school years for the autism. He was doing well enough in middle school to drop all therapies except with only occasional assistance for specific problem issues, and in high school (now) he continues on his own.
I have friends who have a daughter diagnosed as autistic. After putting her on a GFCF diet she went from basically never acknowledging anyone else or interacting in any normal way to being essentially a normal, slightly rambunctious kid. It was a night and day difference. What I’ve read on the science doesn’t really hold up on its own (there are certain elements which may be true, but I haven’t seen clinical studies regarding specific cause and effect I’d hang a beanie on) but the actual results are incontravertable and are not isolated to a few cases. It is certainly worth considering, and actually not all that difficult given the current availability of gluten-free foods and milk subsititues such as rice and almond milk. The hardest thing is making sure the child doesn’t accidentially eat something with gluten or caesin at school or at someone else’s house.
Give it a try - if you get Stranger’s friend’s result (and I’ve heard a few stories like that - and a few that haven’t had any result) then who gives a damn about the science. You can still be skeptical about why. I think Mama Zappa has or had Dweezil on a GFCS diet.
My son has autism and we do gluten free (not casein). The reason is that our doc ran a rather extensive (and expensive) genetic panel that showed a very, very high genetic risk for celiac. So we did a 3 month trial of gluten free, and saw a huge improvement. We then reintroduced gluten for a day by accident (purchased the wrong brand of crackers, he ate them several times in one day before we noticed) and saw many behavior problems return. So in my mind it’s pretty much confirmed. Going gluten-free didn’t “cure” him - he’s still autistic, but it really improved things like mood and tantrum frequency. We then tried celiac free, and didn’t see any clear differences.
No one else in the family has celiac, but the genetic panel speaks for itself. I’m not very good with genetics, but he has both DQ2 and DQ8 (2 copies of DQ8, I believe). I don’t know that I would have tried GF without this marker as a liklihood, but really it’s an easy enough thing to do for a few months to see if it works for your child. Here’s a basic about.com thing on the genetics. http://celiacdisease.about.com/od/diagnosingceliacdisease/a/Celiac-Disease-Genetic-Testing.htm
It seems to me that some form of gluten and casein allergies are correlated with autism. I don’t know why, but a decent percentage (certainly not all) autistic children seem to be sensitive to gluten and respond well to GF diet and/or CF diet. So I’d say it’s worth a try - worst case is that it doesn’t help and you spend a few months and some extra grocery money on the experiment.
My point of view is that studies are useful so that medical professionals know what to suggest first to help the most people in the least amount of time. But as an individual, if you happen to be in the 1% of the population to have a positive effect, does it matter that it doesn’t work for the other 99%? That would be a study that showed the treatment ineffective - except for the very small percent of people for whom it was effective. At this point in the research, we don’t know which group your daughter would be in unless you give it a try.
I have a friend on another website who did this and had the same results, and he improved so dramatically, their doctors all believe that his initial diagnosis was wrong. But they still say it’s autism because they don’t know what else to call it.
Someone on a third website tried GF for their child with autism, and while the child’s autism didn’t change, her husband’s psoriasis, which had failed all standard treatments, cleared up even though he was eating gluten outside the house. Just reducing it helped him, and his dermatologist was impressed enough to recommend this for other patients with treatment-refractory psoriasis.
A gluten free diet isn’t going to be a miracle cure, but digestive issues are very, very common in kids who had autism (auto-immune disorders too). Somehow I wouldn’t be surprised if a lot of the improvement people see in their kids after putting them on such a diet stem from the fact that their kid simply feels better without when they’re not experiencing symptoms of celiac disease any more - NT people who treat celiac feel better too when they’re no longer frequently experiencing digestive discomfort! Think about it, how good do you feel when you’re bloated, achy, and having either constipation or diarrhea frequently? That damn sure affect my mood… of course, going gluten-free is only going to help people who really have issues with it, but given how many people get to their 50s or older before being diagnosed, it’s not easy to tell without testing.
But anyway, like WhyNot says, it literally can’t hurt to try even before you see if your doctor is willing to test her. The only thing it’ll cost you is effort and the extra cost of gluten-free foods. Fortunately, though, as more people realize that they have celiac, and more people think they’re getting some benefit from removing gluten from their diets even if they don’t, prices on gluten-free foods are going down as demand goes up and more products are coming out gluten-free (anyone try the new doughs from Pillsbury yet?), which is good for people who really have to avoid gluten.
Ooh, that I’m not so sure about. I took my little one off gluten before I had her tested, and now I wish I hadn’t. I’d have the test for Celiac done first, and then take her off gluten as a test no matter what the Celiac test results were. Why? Because if you take them off first and later want a diagnosis of Celiac (for school, for insurance, for a whiny kid who just want to split a regular pizza with her friend) then you have to put them back ON gluten for 2 weeks before you can test. We’re really struggling with this at the moment: do we risk making her very sick again to find out for sure? Especially when the tests don’t detect gluten intolerance, but only Celiac Disease? Especially when the tests miss a lot of Celiac Disease?
She’s 8, so we’re letting her make that decision, and so far she’s decided she’d rather just stay gluten free and not test. If/when the tests get better, I may try harder to persuade her otherwise.
But my recommendation to people who ask me is to *not *do it the way we did. Keep eating gluten, get the test done, and *then *do a gluten free trial. The tests can’t definitively rule OUT gluten intolerance/celiac, but they can rule it in, if you know what I mean. If it’s a positive result, then there you are and now you never need agonize over whether this diet annoyance is worth doing. If it’s a negative result, you may choose to eliminate anyhow and see if the symptoms disappear.
I suspect its as simple as a constant tummy ache is distracting to people who don’t have the challenges of autism. As someone who has been "gluten light"for a number of years, that gnawing ache in my stomach when I eat too much wheat means I don’t sleep well and I’m distracted when awake.
I think a LOT of people are sensitive to gluten and casein, but if all you have is a low level tummy ache and a little gas - and you’ve lived with it all your life - its background noise you tune out. If your capability to tune out background noise isn’t great - and I’m no autism expert, but it seems like its difficult for the autistic kids I have interacted with to choose what to tune in or out.
We did the GFCF diet 15 years ago with my son for almost 2 years. Not too much change, except the removal of dairy did greatly help his allergies. I’m always skeptical about people saying they began the GFCF diet and their previously non verbal child woke up one day speaking in full sentences. I’ve never seen anything that dramatic in all my years of being involved in the special needs community. My son’s stimming behaviors and his verbal abilities have changed with age, therapy, and appropriate classroom placements. He’s considered severe though, so maybe a GFCF diet has more of an impact on a milder case of autism.
We’ve not done it for our son. I’m very much a skeptic so a study would go a long way to making me believe in it. That said, I don’t think a study is going to be forthcoming as there’s no financial incentives.
Perhaps we should both do a 1-2 month trial and compare notes. It would be a little difficult for us since our guy is a picky eater and is not open to new things. Also we recently put our guy on some new meds that are really changing his behavior in a great way, so it would be hard to tell if changes were due to meds or diet. Hrmm, I think it would be better to wait a few more months and let the med effects plateau before we try changing anything else.
We also have not tried this for our son. We talked it over with our developmental pediatrician, and based purely on experience and intuition, she did not believe we would get very much mileage out of it relative to the disruption it would cause. We might try it if he suffers a serious regression but not otherwise. Aggressive therapy has transformed his life.
It would be a little difficult for us since our guy is a picky eater and is not open to new things. Also we recently put our guy on some new meds that are really changing his behavior in a great way, so it would be hard to tell if changes were due to meds or diet. Hrmm, I think it would be better to wait a few more months and let the med effects plateau before we try changing anything else.