Diets

 

Description: Much of the alternative-medicine approach to autism starts with special diets.  These range from removing gluten (found in many grains) and casein (found in dairy) to make the "GFCF" diet, to removing soy, food colorings, limiting to "specific carbohydrates" (SCD) or many other variations.

 

Much of the rationale behind diets is based on the idea of the "leaky gut".  This is a concept that undigested or partially digested food (especially gluten and/or casein) can escape the digestive tract and enter the bloodstream.  These substances are thought to be similar to "opiods".  Yes, "opiods" as in the idea that autism is caused by a drug like effect from these incompletely digested substances.

The problem is that people have looked--hard--for these opiods or opiod peptides and failed.  One discussion can be found here.  That discussion focuses on a very recent paper, which can be read here.


Why Not?

 

 

The GFCF diet is common enough in the alternative medicine world of autism to be sometimes called "The Diet".  As in, "Is your kid on The Diet?".  Some people (with autism or not) are sensitive to certain foods and, yes, that can have an effect on their behavior.  Because of this, it is probably the first thing an alternative medical practioner would recommend.

It's worth reading the account of Dr. Jim Laidler. The page is titled, My Involvement with Autism Quackery.  You see, Dr.Laidler was not only an autism parent, he was working on the inside of the alternative-medicine world.  He was lecturing at conferences and helping to form policy for these groups.  Then, he found out, he was deceiving himself.  His kids were GFCF (and doing a lot of other alternative-medicine therapies).  Here's his account of how it ended: 

The final step in my awakening came during a Disneyland vacation. My younger son was still on a gluten- and casein-free diet, which we both swore had been a significant factor in his improvement. We had lugged at least 40 pounds of special food on the plane with us. In an unwatched moment, he snatched a waffle and ate it. We watched with horror and awaited the dramatic deterioration of his condition that the “experts” told us would inevitably occur. The results were astounding—absolutely nothing happened. I began to suspect that I had been very foolish.

In the following months, we stopped every treatment except speech and occupational therapy for both boys. They did not deteriorate and, in fact, continued to improve at the same rate as before—or faster. Our bank balance improved, and the circles under our eyes started to fade. And quite frankly, I began to get mad at myself for being so gullible and for misleading other parents of autistic children.

Yes, even a medical doctor can be fooled that "therapies" are working, even "The Diet". If you read the internet, you can find that just about any gain an autistic child can make has been attributed to the GFCF diet.  There are horror stories of how a single particle of gluten or casein can throw a child into horrible physical and mental regressions.  So, people will say, you can't tell if your child isn't responding or is just getting microscopic "infractions" that are keeping the child from advancing.  So, people will say, you need to be on the diet for 1 month, 2, 6, I've even read 12 months. 

Any progress in that time can be attributed to the diet.  Any failures, to infractions.  Alternatively, non-response can be attributed to not doing enough.  There are variations on the theme, but the "tacks in your foot" argument is often used.  It goes something like this, "Your child is limping because he has tacks in his foot.  If you take one out (say, with the diet), and he's still limping, don't put the tack back in!  You have to find the other tacks."

This is one of the big problems with "The Diet", or much of biomed in general.  Anything that looks like an improvement means that biomed works, and you need to do more.  Anything that doesn't work means that you haven't found the right mix, and you need to do more.

I've seen no test that the alternative medical community can use to say a specific person should be on the diet.  There's no clear criteria for what constitutes "succsess".  This is something to do with your eyes open for.


Children with limited diets

  

 Many children with autism have extremely selective diets.  Often they chose only carbs and milk.  This gives some of the support for those talking about "The Diet": they say that the kids are "addicted" or "hooked" on these foods because they are producing the opiods.  First, keep in mind that no one has detected the opiods

But, leaving that aside, consider how this compound the question of whether the diet works.  A carb/milk based diet is not very balanced.  Beyond that, it can lead to significant sugar lows.  One thing many alternative medicine practitioners will suggest when going on the diet is to include protein.  Good advice.  But, consider how that changes the situation.  A more balanced diet will lead to improvements, just by evening out the sugar lows.  Also, some people just perform better with protein.  Temple Grandin, one of the more famous adults with autism, has noted that she needs not only protein, but meat protein to perform well.

This is one reason why the GFCF trial ongoing at the University of Rochester uses a "challenge" approach.  Once a child is on the diet, snacks are introduced which may or may not contain gluten or casein.  This tests whether it is these substances, not the diet change, that might (or might not) have an effect.

One issue that comes up is how to get a selective eater to change a diet.  It can take months.  Alternative medical practitioners have been known to suggest that one goes cold turkey--only allow the child to eat the new diet.  It may take a few days, but after a while the child will eat what's available, or so the theory goes.

Consider the new awareness that perhaps mitochondrial disorders affect people with autism at a high rate.  Take a look at websites on mitochondrial disorders: starvation is a trigger for a mitochondrial crisis.  As with any medical program, one should look at implementing "The Diet" with the questions: how can this go wrong?


Make a Plan

 

Advice for any medical program: consider what you expect to gain, and think out a plan in advance.  It is very difficult to think about what one can gain, since the descriptions on the internet vary so widely.  (That can be considered a warning sign.)

But, above all, consider a Plan.  If "The Diet" doesn't work, does that mean you need to do more, or is it time to go back to accepted medicine?  Consider Jim Laidler's story. It is easy to get caught up and just keep going further into alternative medicine--even when it isn't really working. 

After years of “supplements,” restrictive diets and “unconventional” therapies (too many to list), our boys were improved, but were a long way from being cured. We were forced to carry their special foods with us whenever we left the house, lest a molecule of gluten or casein catapult them back to where we had begun. We were nearly broke, despite both of us having well-paying jobs, and we were on the verge of exhaustion. The beginning of the end was when my wife, suspecting that some of the “supplements” we were giving our older son weren’t having any effect, stopped them all—without telling me. I saw no difference, even after two months (when she finally told me). We had been chasing our tails, increasing this and decreasing that in response to every change in his behavior—and all the while his ups and downs had just been random fluctuation. My eyes began to open.

With medicine, especially alternative medicine, be prepared to say, "the emperor has no clothes." 


Disclaimer

 

RescueAngel.org is not affiliated in any way with Generation Rescue, Jenny McCarthy or any other person or organization promoting biomedical treatments for autism.
 
Also, the information on RescueAngel.Org is not medical advice.  Rather this is intended to motivate people to seek out quality medical advice from practitioners who are well qualified to make accurate diagnoses and proper treatments


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