the gluten free/ casein free story
I am still working on the autism research. To me, research means looking through peer reviewed articles on PubMed. It does not mean Googling a few words and believing everything I read because it showed up when I clicked “I’m feeling lucky” though apparently that’s what Jenny McCarthy does and it’s good enough to help her write a book, but since I am not a Playboy skank I probably need to focus on sources with a bit more credibility. Then again it appears you don’t even have to Google things to start a fucked up cult belief system, so maybe I’m just working too hard.
Contrary to the beliefs of comments left behind on my last autism post, I am not “forming an opinion” on anything, because none of this research is my own. I am reviewing articles. That’s it. I am not saying this is bad or that is good or he is wrong or she is right, though I am saying Jenny McCarthy is a skank and I don’t ever want to read a “book” with her name on it even if it’s Playboy.
I must admit I am somewhat biased as I tried the gluten-free thing for about a month my digestive issues and I felt worse. Much worse. Went back to the gluten, felt much better. No, I’m not autistic, but since the what one puts in the gut is directly related to its function, I figured it would have an effect. I’ve been looking all night to understand how “leaky gut” and “inflammation” affects the BRAIN to support this GFCF hypothesis, but I’ve found nothing. Maybe Jenny can explain it to me.
Anyway, a night of searching, and this is what I’ve found:
1) Pediatr Nurs. 2007 Mar-Apr;33(2):138-43
To date, there is little empirical evidence supporting the effectiveness of dietary restrictions in treating child psychiatric disorders, in particular, autism and attention deficit hyperactivity disorder (ADHD).
2) J Dev Behav Pediatr. 2006 Apr;27(2 Suppl):S162-71.
Seven trials of these diets in ASD are critically reviewed; 6 of these were uncontrolled trials and 1 used a single-blind design. All reported efficacy in reducing some autism symptoms, and 2 groups of investigators also reported improvement in nonverbal cognition. Design flaws in all of the studies weaken the confidence that can be placed in their findings.
3) J Autism Dev Disord. 2006 Apr;36(3):413-20
This study tested the efficacy of a gluten-free and casein-free (GFCF) diet in treating autism using a randomized, double blind repeated measures crossover design. The sample included 15 children aged 2-16 years with autism spectrum disorder. Group data indicated no statistically significant findings.
4) Cochrane Database Syst Rev. 2004;(2):CD003498
The one trial included reported results on four outcomes. Unsurprisingly in such a small-scale study, the results for three of these outcomes (cognitive skills, linguistic ability and motor ability) had wide confidence intervals that spanned the line of nil effect. However, the fourth outcome, reduction in autistic traits, reported a significant beneficial treatment effect for the combined gluten- and casein- free diet.
5) Nutr Neurosci. 2002 Sep;5(4):251-61.
A randomly selected diet and control group with 10 children in each group participated. Observations and tests were done before and after a period of 1 year. The development for the group of children on diet was significantly better than for the controls.
Since most of the “research” these parents cite are mere anecdotes, I also found this little story written by a physician. I found it interesting.
Here’s a woman who helped her son’s autism by removing soy.
And here’s a woman who “cured” autism by substituting milk for soy.
Here’s someone who found no regression after quitting the diet.
A forum where different parents discuss their results on the diet
A parent who found their child was worse on the GFCF diet.
The GFCF story on About.com with a summary of the theories and references.
Success stories on GFCFdiet.com. There is no place to post failure stories, so this is rather biased.
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My life changed the instant someone told me I was In-da-cow. I knew from that moment on I should drink as many margaritas as possible.
Seriously, I had no idea Jenny was that f*ed up. Everyone has an overwhelming feeling of wanting to put the world right for their child. What arrogance to believe that she was hit with divine light that us mere mortals are not privy to.
Since I might want to pick up a prescription someday or eat a cake, I, for one, don’t want to live in a world devoid of memorization — but hey Jenny, good luck with all that.
tequilaanddonuts - September 21st, 2007 at 9:36 pm
I am glad you liked the webpage I linked to at Left Brain/Right Brain. I started to lurk in the Healthfraud listserv when I first saw some strange claims on a listserv I was on for my severely speech disordered son about a decade ago. Dr. Laidler is a frequent commenter on the Healthfraud listserv (which I found through www.ratbags.com/rsoles ).
HCN - September 22nd, 2007 at 12:02 am
Left brain/right brain is awesome all around.
malingering - September 22nd, 2007 at 11:19 am
[…] I did some of my own searching on the GFCF thing. I have come to no conclusions other than the fact that being a parent of an autistic child doesn’t decrease your risk of being an arrogant asshole and in fact can turn you into a defensive pseudoscientist name calling jerk. […]
Malingering’s World » at this point i wish i were autistic - September 24th, 2007 at 11:53 am
Malingering
I really was jokingly commenting about your gluten experience. I wasn’t advocating pro or con GF.
I simply thought I’d point out that what you’re saying breaks *your* own rules. Arguments are a lot more interesting when logic is adhered to.
You didn’t say that it was solely YOUR experience, you implied that because this happened to YOU, that going GF could kill others. For all of the people with Celiac Disease who have lived GF, surely there’s evidence to prove your claim.
Another thing is that you expect YOUR anecdote to be taken at face value ( I’m sincere when I said I’m sorry you got sick. With a bill so high, it must’ve been serious and scary.) I know some people are overzealous with “the diet”. I’m not a newbie to ASD. It doesn’t mean that their anecdotes are less valid than yours. Did the physician find GF to be the cause of your illness?
On this blog, you state that you were on the zone diet, I can’t comment - since I know very little about it. It makes me wonder though what exactly you WERE eating and whether perhaps that also contributed to your getting so sick. ??
You see, the problem with simply saying I went “GF” is that it only describes what a person’s NOT eating. It doesn’t tell us what they are.
An ex of what happens- a parent can put their child on GF and end up feeding their 2 yr. old - 2 lbs. of meat and 8 bananas per day. Then report it made them worse. Heck, that would make anyone sick!! poor kid.
Then there are those who absolutely do better with gluten (and dairy). Trust me, the GFCF cultish push on newbies annoys the crap out of me too. But it’s so out of control by now- it’s like an urban legend.
What parents should be is advised/supported to work on feeding their kids more well-balanced meals, from all the food groups, and not to omit nutritious foods- just because.
My kid has benefitted from this greatly. No DAN necessary for me to know my kid needed to expand his choices (common sense, no?)
However, I can’t fathom telling someone that they HAVE to do this or else they’re not a good mommy.
So does that mean *I* was not a good mommy when my kid wouldn’t eat but a few foods?
Heck no!
I’m learning everyday and I make mistakes, but my love and dedication have been the same since day 1. And I’m not so arrogant to think I’m the exception to the rule.
I digress. Thanks for letting me dialogue (or was it monologue? LOL… sorry)
You got a pretty funny blog here.
Stay cool!
Liz - September 27th, 2007 at 2:47 am
Maybe Jenny McCarthy has a leaky gut. There seems to be something wrong with her brain.
cmgrowl - September 27th, 2007 at 3:28 pm