*bolding mine
As a parent of a recently diagnosed autism spectrum child, I started the Gluten Free/Casein Free diet. (OT It is helping, even according to her pediatrician and therapists)
Now in all of my searching for any medical information to back up this diet I came across that article.
I don’t know whether the bolded part means it has something scientific behind it, or if it means it is bunk.
So can someone help out a dense person that cannot comprehend very well?
It means that in theory the treatment may have some benefits, but those benefits haven’t been proven (or correlated) scientifically in an actual population.
Sort of the old “Looks good on paper” dealio.
IANAD, but given that the quoted part states right off that these treatments are unproven, I’d have to say there’s little in the way of clinical merit to them as of yet. The phrase “theoretical basis” just means there’s reason not to reject the treatments out of hand. In other words, they might work, but there are not any studies supporting their effectiveness.
Thank you all for the help understanding that. Her doctor was amazed enough at her improvement to research the diet himself.
Now if I can bug the smart folks to answer one more question. If it in theory can help, what is the medical theory?
To explain better, excuse my ignorance.
If they say it has theoretical basis, what is that basis? I cannot find anything from legit medical websites. (does the gluten interfere with the mind using magic powers, does the vitamin C help because it beats up something bad etc) What is the theory?
Not asking for medical advice!!! Not asking for medical advice!!! She has several fine doctors, and many fine therapists!!! This is purely to questions to research different theories.
I can’t find you a cite, but I’ve read somewhere that the theoretical basis is that on average, people with autism seem to be more likely to have celiac disease or other gluten sensitivity problems. Hence the connection, but I don’t think anybody know why or how.
Looking around I notice that a lot of studies note that a gluten/casein free diet makes no difference physiologically and actually makes the social isolation aspect of the condition much worse. (See http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=2008691&dopt=Citation)
Thank you groman for that link. I had heard of that study in the past. But never found a place to read the whole thing! When I find the “rebuttal” I will post it. But the rebuttal was not from somewhere so “esteemed”. Basically the other study said gluten free only works on late onset/regressive forms of autism. Googlefu is not my strongest point!
I believe the theoretical underpinning of the idea is that in the same way that gluten sensitivity can lead to production of antibodies against cells in the intestine (and thus lead to damage therein), so too, in susceptible individuals, might gluten induce antibodies against brain cells (and thus contribute to autism).
Here is one abstract that looks at the idea (and which, I think, is pretty understandable despite the jargon).
The theories I’ve heard of involve the casein and gluten proteins getting into the bloodstream (either as is, or as metabolites, not sure which) through a leaky gut - and then somehow acting on the brain in a manner similar to opiates.
From here: http://www.autismweb.com/diet.htm,
.
And from here: Account Suspended
Now, whether this is in fact the cause I don’t know (I don’t start flapping my hands when I take a narcotic painkiller, for example) but it’s one potential explanation. Since I gather there’s been little formal, structured research on the topic, but a lot of strong anecdotal evidence (including yours and mine) I sure wish they’d spend more time pursuing this.
We joke that when other kids are sneaking out behind the bleachers to indulge in cigarettes or marijuana, Dweezil will be sneaking cheeseburgers 
Thanks for those links I ran across a lot of links from autism related websites but so few from “medical” based websites. Still looking!
I’ve been reading several reviews of the genetics and biochemistry behind ASD the past few days, in preparation for a possible study. The consensus seems to be that there are at least several different biochemical characteristics contributing to the entire ASD specrtum, none of which are well understood. There is also significant evidence of a dopamine/GABA metabolic problem that needs further clarification. See: McDougal CJ, Erickson CA, Stigler KA, Posey DJ, Neurochemistry in the pathology of autism, Journal of Clinical Psychiatry, 66 Suppl 10:9-18, 2005
There is also a dysfunction of the amygdala in the brain. See:
**Kamio Y, Wolf J, Fein D, Automatic Processing of Emotional Faces in High Functioning Pervasive Developmental Disorders: An Affective Priming Study, Journal of Autism and Developmental Disorders, 2006, in publication **.
There are also at least 20 different genes that have been identified as being related somehow. With that many genes involved, the biochemical picture becomes much more complex, making single item cures dubious, or perhaps calling into question the diagnosis or the scope of ASD. We just don’t have enough information to know. Despite the 70%-90% chance that an identical twin will have ASD if the other does, the presentation of ASD can vary widely between identical twins and siblings. See: **Spence, SJ, The Genetics of Autism, Seminars in Pediatric Neurology, 11:196-204, 2004 **.
It is also important to remember that if a diet causes changes, it is not necessarily true that what was removed or added was the root cause. Rather, it may be a reflection of a mutated gene that produces a non-functioning or super-functioning protein or enzyme associated with that item. Additionally, it is unlikely that that mutation is causing ASD alone. There are probably several other factors involved as well that are not affected by diet.
See also: **Polleux F, Lauder JM, Toward a Developmental Neurobiology of Autism, Mental Retardation and Developmental Disabilities Research Reviews, 10:303-317, 2004 **.
If anyone can’t get these reviews free on-line, let me know, and I’ll send a .pdf or mail paper copies. I can get some papers for free because my institution pays for unlimited access to certain publishers, otherwise non-payers can be charged anywhere from $20-$120 per paper. I accessed these papers through PubMed.
Vlad/Igor
It is also important to note that a change in diet may well appear to cause changes to parents very eager so see a change to the better. Also that some dudes think that “mild cases” of autism can often be mis-diganosed.
That was my initial thought, that perhaps I was seeing improvement and there was not any. But her doctor did the same test after we implemented the diet and she scored much higher, and this was before therapy started. Everyone has noticed the differences much less stimming, rocking, masturbating, self destructive behavior. Much better hand/eye control, attention span, copying behavior.
She was far from high functioning, and still is. This is not a cure for autism.
The way it is being discussed in some autistic circles, and that makes some sense to a layperson. Is that late onset/regressive autism is not true autism at all. It is a copycat, that mimics autism brought on by problems brought on by glutens and caseins. Medically backuped or not, it is an area more research needs done on.
The problem is that we still don’t know exactly what causes autism, early or late-onset. They could all be part of the same syndrome with different causes. Given the high variability of symptoms, even within families, the argument that late-onset is not part of ASD doesn’t hold water, not until we much better define the causes.
I’m in the middle of reading **Knivsberg, A M, et al. “A randomised, controlled study of dietary intervention in autistic syndromes.” Nutritional neuroscience 5.4 (2002):251-61 **. They selected 20 autistic patients from 57 - 120 months of age, 10 with a history of neuropeptides is the urine, 10 without. The 10 with urine neuropeptides were put on a modified diet, and after one year were reassed for traits. They did see some improvment vs. the control group, who had a normal diet. I think it’s safe to say that for a subset of ASD patients, diet modification can improve symptoms, the same way I avoid chocolate not because it gives me reflux that could lead to GERD.
Vlad/Igor
Do you most medical librarys would have a copy of that book?
The reasoning I have for thinking the diet must work, is based on personal experience. Mine and others. If she is still not “normal” I don’t really care. It did better than I had hoped, and nothing but the diet changed.
Speaking of medical testing, CHP (Children’s Hospital of Pittsburgh) therapist let me know they where doing a study on the GF diet, and wanted to know if wanted to take part in it. I declined because she said they would have to give a group some glutens to judge if it caused some changes. When I heard that I respectfully declined.
With more and more children being diagnosed with autism, I would think this should become a national cause (finding what causes autism). Better diagnosis maybe? But for me and the other parents with autistic children I have seen, you can see something is wrong, its not something that even needed diagnosed. So maybe the increase is in so called high functioning? I don’t know but I do know that if something that is not harmful (GF diet) can possibly help 1 out of 100 children they need to find out why.
[QUOTE=Abbie Normal]
Do you most medical librarys would have a copy of that book?
/QUOTE]You can find it here . In my earlier post I said: the same way I avoid chocolate not because it gives me reflux that could lead to GERD. It should read: the same way I avoid chocolate because it gives me reflux that could lead to GERD.
Vlad/Igor
[QUOTE=Vlad/Igor]
Thanks! Though sadly it registers cookies, not a big deal though as my brother is a nurse and has access to most medical lit through the hospital computers. I have already emailed him the study/article information and with any luck he will be able to find it and bring me a copy.
I really appreciate the help, not just for me but for any other parent of an autism spectrum child that may like to research this a bit more.
You’re welcome. Don’t sweat the cookies. That’s just to keep track of where you went on the site. They’re not going to use it for some other purpose. I’ve been to a lot of this type of site and have not gotten spam or anything else that could have come from visiting it. They’re business would dry up overnioght if they tried it.
Vlad/Igor
I’m obviously looking at this from a different perspective than the parent of an autistic child - but a study like this could be very beneficial to both your child and many others.
There are a lot of supposed treatments and remedies for autism floating around out there, ranging from non-harmful dietary manipulation to potentially fatal interventions (such as chelation therapy). The vast majority are supported by nothing more than isolated case histories and testimonials, and we don’t know if there are long-term benefits in significant numbers of patients. If a good research study of gluten-free diet could be completed, there would be cause to recommend (or discourage) it for parents as a whole. If it does not work and any beneficial effects are incidental (see “epiphenomenon”), parents won’t waste time and effort with it and kids can have a much less restricted choice of food. It might just be worth enrolling one’s child in the trial, even with the chance that he/she might end up in the control group and might have more pronounced symptoms for the duration of the study.
It would be a simple choice, if I was sure the gluten regression did not cause any permanent damage. And since no one knows for sure whether it does anything, positive or negative I do not like the idea of my child being a test case. For now she is gluten free and the improvement is astounding. If I give her glutens again, and she regresses, and I take her back off glutens, did she lose anything that she cannot gain back? I am not willing to find out.
A better study would be right after diagnosis, take a child off gluten and see if anything changes in a controlled enviroment. IMHO of course.
I do understand your point though, and if this was something more research was done on it would help many parents.