Questions about Autism and eliminating Dairy, Wheat and Gluten from diet?

Great Debates
1

I watched a segment on 60 minutes or Nightline (or one of those programs) and Jenny McCarthy stated that her son Evan’s autism was reversed simply by eliminating the three things in my subject line from his diet.

Now, how many studies have been done on this issue and what were the outcomes of said studies?

Because it seems to me that it would be a little more complicated than just eliminating those three items from your diet to make a child “all better” from something that can be as debilitating as autism. Maybe her son was misdiagnosed or something?

Is this some new radical approach? How much credibility is there and why hasn’t the Doctor who came up with this become a huge celebrity by now?

2

[QUOTE=diggleblop]
I watched a segment on 60 minutes or Nightline (or one of those programs) and Jenny McCarthy stated that her son Evan’s autism was reversed simply by eliminating the three things in my subject line from his diet…
[/QUOTE]

I saw the interview, too, and I wouldn’t say that his treatment was limited to diet modifications. Although they dramatically downplayed it, she did mention that he had extensive behavioral/occupational therapy also. Who’s to say it really was the food, and not the intensive, targeted therapy?

I’ve heard a lot of raves about this treatment, but don’t know anything about the medicine, so I won’t comment. My idle speculation is that I could see how, if autism is caused by some sort of severe food allergy, this restrictive diet would help, considering how it limits exposure to three of the foods people are most commonly allergic to.

3

Well, there’s this study:
Interesting.

4

It’s very trendy now to do a gluten-free, casein-free diet for autistic children. Chelation therapy is also trendy now. So is avoiding or delaying vaccinations.

But what has actually been proven to work is early intervention, with behavioral, occupational, speech and physical therapy.

5

Jenny was on Entertainment Tonight the other day and was still making these claims. I just found it fascinating that something so simple could “help” so much. I wonder, was her child just misdiagnosed?

p.s. I just read that study and it is indeed fascinating and I guess it’s true. Sorry for the thread bump.

6

This one is going over to Great Debates.

samclem GQ moderator

7

A Cochrane review. A subsequent additional double-blinded control study.

The field of autism is littered with supposed cures. Secretin was another one that got hot for a few years and interestingly enough, when a study showed conclusively that it was an ineffective intervention, the parents of the participants wanted to continue the medicine anyway. This has not yet been disproven but there is no good evidence that it works. At least it doesn’t have too much potential to cause harm.

As to the linked study, well my skeptic meter runs high when they claim they found

There are no such characteristic findings. Sure som small studies showing smaller Purkinje cells (which occurs early in development) and different microcolumns (also an early event.) But nothing else is consistently found. That study shows little.

8

[QUOTE=diggleblop]
Jenny was on Entertainment Tonight the other day and was still making these claims. I just found it fascinating that something so simple could “help” so much. I wonder, was her child just misdiagnosed?
[/QUOTE]
That was my initial reaction as well – perhaps her son really had celiac disease?

9

I’m currently putting togther a seminar I have to give for my MS (biochemistry), and the working title is: The Genetics of Autism: Is a Diagnostic Blood Test Possible? Very few, if any, of the alternative therapies out there have been supported by well-designed studies. Given that autism and autistic spectrum disorders (ASDs) are 90% heritable, and 10-15% of cases can be traced to a known medical cause, these miraculous “cures” strain credibility. Yet, there aren’t many doctors with the time or support groups close by to help parents understand and cope with their ASD child. I know: I’m one of them, and I feel very lucky to be able to wade through peer-reviewed articles to figure out what’s real and what’s not. It’s very comforting to believe that there is a cure, and it is as easy as controlling what goes in your child’s mouth. It isn’t too much of a leap at that point to take an attitude of “I know what’s good for my child better than you,” while the doctor is still struggling to answer “What caused this autism in my child?”
Vlad/Igor

10

[QUOTE=diggleblop]
…I wonder, was her child just misdiagnosed?
[/QUOTE]
Maybe not so much misdiagnosed (still a possibility) as undiagnosable: I have a list of 74 genes identified in genetic studies from the past 10 years. I spent time tracking down what those genes did, and where their proteins were found (in the brain/peripheral nerves vs. out in the body). Of the genes in my list, most of the ones that were found in the brain/nerves were involved in fetal development. Most of the ones that were found out in the body were involved with metabolic pathways.

It appears to me at least, that there are two major categories of genetic autism: 1) developmental variants that result in physical or functional abnormalities of the brain and/or nerves and 2) inborn errors of metabolism that lead to autistic behaviors. Neither of these genetic categories are picked up by the behavioral tests used to diagnose autism, and probably can’t because there are many causes that lead to very similar symptoms.

As we understand more about the genetic root causes of most cases of autistic spectrum disorders, I think we will have to redefine, or refine, the definition of autistic spectrum disorders. That will eventually lead to a better ability to accurately diagnose behavioral disorders and separate the gluten from the chaff.

Vlad/Igor

11

[QUOTE=ladydisco]
Well, there’s this study
[/QUOTE]
I find that study unconvincing, for reasons including those previously stated. When data support a connection between dietary changes and improvement in autistic children that is based on something more than rat studies and parental testimonials, then we’ll have something.

The neurologist quoted in the article seems to be leaping to unjustified conclusions.

Still, a new diet (assuming it’s still balanced enough to be nutritious) is less harmful than many of the treatments used by quacks to exploit the parents of autistic children (chelation, chemical castration etc.).

12

When we first heard about dietary changes helping autistic kids, we asked our family therapist about it, for Dweezil. Our therapist said in his experience it helped in about a third of his patients, it didn’t help in about another third, and the other third it was hard to tell if there was any effect. Mama Zappa and I were skeptical to begin with, so we dropped it.

Then Dweezil got a case of diarrhea. He was about 4 at the time. Per doctor’s instructions we took him off dairy for a week. By the end of the week his behavior got better. He listened more. He was more verbal. He didn’t tantrum as much. This wasn’t a dramatic change, but the change in degree was appreciated! At that time in our lives ANY improvement was a big improvement.

We were already reading ingredient labels because of his food allergies, and every time we found a food with hidden dairy, we’d take him off the food and hs behavior would improve a notch. We even changed his vitamins because the frickin’ brand name had lactose in them!

Over a Christmas break we let him have dairy again, and his behavior got worse again. By the end of two weeks we were more than ready to be dairy nazis again, so he could go to school. And so we would not be tempted to clobber him.

We never had the guts to go gluten free. Dairy can be avoided, with a lot of effort. Gluten is everywhere! We did not want to give up all prepared meals forever.

So if you are thinking of going gluten and dairy free, don’t think it’s easy. And don’t think it’s a solo cure. We’ve had Dweezil in therapy almost continuously since he was three. We’ve had family therapy all that time and learned how to be much better parents to him. Plus special ed, occupational therapy, and physical therapy at school. It can be hard to sort out what therapy brought which advance, but in my experience the diet helped.

Try cutting caffiene or sugar out of your diet and see if your behavior changes. What we put in our mouths matters.

I know that the plural of anecdote is not data. If you were raising a clone of Dweezill maybe gong dairy free wouldn’t help you. But it did help us, when we weren’t looking for it.

I’ve heard a theory that the cassien in dairy and the gluten in wheat go directly into the blood stream of these kids, instead of getting digested first. In the bloodstream they act as opiates. We always figured when his peers started going behind the garage with a brewskis or reefers, Dweezil would be sneaking cheese sandwiches. :wink:

I have not followed Jenny McCarthy’s story that closely. I’m glad her son has made progress, and I wish only the best for them. My experience is different - I don’t credit the dairy free diet with “curing” my son - but it did and does help.

BTW, Dweezil is thirteen now, and in some ways better behaved than many of his age peers. He eats a lot more dairy now, and it does not affect his behavior as much as it used to. Although I think he gets more stubborn and defiant, as teenagers are wont to, when he’s on dairy. Mama Zappa and I can see the (now subtle) behavior changes, but most other people - including teachers - can’t. That’s progress.

13

There are plenty of people who link food to very specific health problems or solutions. A lot of raw foodist I’ve talked to link cooked foods to all manner of diseases. Not that I’m buying their arguments mind you. Just ask someone about mucoid plaque some time.

Marc

14

[QUOTE=Typo Knig]
He eats a lot more dairy now, and it does not affect his behavior as much as it used to. Although I think he gets more stubborn and defiant, as teenagers are wont to, when he’s on dairy. Mama Zappa and I can see the (now subtle) behavior changes, but most other people - including teachers - can’t. That’s progress.
[/QUOTE]

This smacks of confirmation bias.

15

I see a lot of food elitism as well. Look at the attitudes of vegans, vs. the raw foodists that Mgibson mentions, vs. the Super-Size me! crowd, vs. the Organic food shoppers. Into this elitism is thrown a real medical disorder that isn’t dealt with rationally because of elitist attitudes. Our health and eating choices are being politicized (cf. municipal bans on the use of trans-fats in restaurants) to the point where dealing with the various issues becomes more difficult that it needs to be.

Vlad/Igor

16

[QUOTE=treis]
This smacks of confirmation bias.
[/QUOTE]

I’m on a gluten free diet (well, gluten FREE is strong for what I do, I avoid wheat products where practical). Not for autism - for digestive issues. I’ve never been tested for celiac - its a pain to get tested. Talked to my doctor about it. His take was “you feel better - stay off it.” Confirmation bias? Maybe. But its a pain to give up bread - so whatever I’m getting from it is worth it. And its even harder to manage a kid’s diet than it would be to manage my own.

Giving up gluten or lactose (or both!) is a real pain in the back end. While certainly confirmation bias can play a role, kids often react to your expectations - so the confirmation bias can be working for you. I tend to think that in SOME cases people are seeing real results. Being gluten or lactose intolerant is not a fun spot to be - add a kid who has sensory issues from autism plus doesn’t pay attention well and the constant tummy ache or background headache from food sensitivity may just be pushing them over the edge.

And if it gives parents who have even less control than most parents a feeling of control - well, I’m not going to knock that either.

Anyway, the whole thing makes me happy because the gluten free cookie market has exploded in the past few years.

(Don’t get me started on the dangerous stuff - non-vaccination. But wheat free/dairy free? - difficult but not unhealthy).

17

[QUOTE=MissGypsy]
It’s very trendy now to do a gluten-free, casein-free diet for autistic children. Chelation therapy is also trendy now. So is avoiding or delaying vaccinations.

But what has actually been proven to work is early intervention, with behavioral, occupational, speech and physical therapy.
[/QUOTE]

Children with autism often have gut problems as well. Changes in diet can help with many physical symptoms, and I’m sure that not feeling so crappy all the time helps with some behaviors. However, it does not appear that autism spectrum disorders can be eliminated solely with diet changes.

If a child has gut problems that seem to be lessened by diet change, that’s great! Every little bit helps with these kids. But it isn’t a cure, or a substitute for early behavioral intervention such as ABA (applied behavioral analysis) and CLM (the Competent Learner Model).

18

[QUOTE=treis]
This smacks of confirmation bias.
[/QUOTE]
Step into my Wayback machine, and let’s go back in time and observe six year old Dweezil’s behavor. While he’s dairy free you will probably see some of his autistic behaviors: lack of eye contact, walking on his toes, ignoring, going non-verbal when angry or frustrated, self-stimulating behavior, odd noises, over-reaction to noises from others, and other behaviors whose memories I’ve repressed. You may not see all of his autistic behaviors, even over the course of a few days. And his behaviors are at a level that is tolerable in the Typo/Zappa household. Dweezil doesn’t look normal, but we can live with what we’ve got. It’s a sucky reality, but it’s ours.

Next let us observe Dweezil after we’ve taken him to another kid’s birthday party where cake and pizza were served. You will see much more of the autistic behaviors. In fact, you will see all of them, and pretty full tilt, over the next 48 hours. You will also see a few tantrums - at a level of a two or three year old, coming from a six year old. Other parents, teachers, day-care providers will all report that his behavior is off for the next 2-3 days, whether we tell them about the dairy or not. He doesn’t listen as well. He’s harder to reach. He’s more autistic.

After a few days for the dairy to work out of his system, six-year old Dweezil goes, behaviorally speaking, back to where he was at the beginning of our observation period. Still autistic, but less so. Much more reachable. Observably better.

Come, let’s take the Wayback machine to the present day. Dweezil is now thirteen years old. He still looks a bit quirky, but it’s hard to pick out his behavior from his peers. He’s quiet, a loner, isolated, interested in unusual things. So are a lot of his peers. Well, if you look carefully you’ll see he still toe-walks a lot of the time. Still, his behavioral differences are more a matter of degree than kind, now. After ten years of therapy. After ten years of maturity. After ten years of me and Mama Zappa learning how to completely change our parenting so we could be the right parents for Dweezil and his issues. I still see some differences in Dweezil when he’s on dairy, but those differences are much subtler than they were when he was six. The improvement is not just because we went (mostly) dairy free, but because we have been able to get through to him and help him normalize his behavior. The dairy-free diet helped. It may not have been the most helpful thing, but it helped. Reality in our household is a lot less sucky, and we are quite proud of that.

We did not try a dairy-free diet for Dweezil to affect his behavior, but when we tried to for other medical reasons, his behavior improved. This was an observable fact. When we put him back on dairy his behavior worsened. Also an observable fact. Every time we made a change, whether permitting dairy for special occasions or denying it for school and our own sanity, we got the same observations. I don’t know if it’s replicable in a large population, so I can’t say it’s a “scientific” fact. I don’t know if CF/GF diet will improve any particular kid’s behavior, so I can’t say it’s a medically useful fact. None the less, in my case it’s not confirmation bias, it’s confirmation.

Don’t tell me to deny the evidence of my own eyes.

19

You should. There is a reason why the double blind study is the gold standard of evidence. For example, you say that Dweezil’s behavior deteriorated after a birthday party. You attribute this to the dairy, but could it not have also been the stress of the birthday party? That’s an issue a proper double blind study will eliminate by isolating one factor for study. In addition, the double blind eliminates bias in the observer. It doesn’t make you a bad person if you are biased towards seeing what you want to see. It makes you human.

Double blind studies are what separate the legitimate treatments from the snake oil. Until someone comes out with one of those studies for dairy/gluten I’m going to think that it’s snake oil.

20

[QUOTE=treis]

[QUOTE=Typo Knig]
Don’t tell me to deny the evidence of my own eyes.
[/QUOTE]
You should. There is a reason why the double blind study is the gold standard of evidence.
[/QUOTE]
Well let’s design a double-blind study, so neither the children (the subjects), their parents, nor the researchers who are observing the home situations know whether or not the children are ingesting dairy and/or wheat.
<crickets>

How about this: prepared meals are provided to the families. The meals may contain hidden dairy or wheat, or may not. The flavors and textures would have to be balanced so the parents could not tell whether the meals contained the test substances. The people who deliver the meals should not know what is in the meals. The people who prepare the meals should not know which meal is going to which family. For each family in the experimental group, there should be periods with and without the test substances, with enough time between for the children’s metabolism to clear of any effects.

This last point may be testable with blood work. I remember hearing that blood tests can detect gluten and casein in the blood stream, but I do not know if that has been proven. If not, then that study must be done first. After all, you never know when a kid is going to sneak a snack that is not on the allowed experimental meal plan.

Blood tests can also be used to determine which kids are biologically sensitive to dairy and wheat. Maybe kids who are not sensitive go into a control group.

(Good luck getting all those blood samples from autistic kids. I will wait over here while you do that.)

The control group either gets meals with no wheat and dairy the whole time, or some families in the experimental group get switched to GFCF diets for long periods, and act as control groups during those times. The later approach is cheaper - fewer families to observe overall. I think the former approach is more solid scientifically.

In parallel, the children’s behavior is observed and logged. The people logging the behavior data should not know whether the diet contains dairy or wheat.

Then analyze the data and publish the results (i.e., “Step 3 - Profit!”).

Don’t forget to record, and control for, the various therapies these kids are going through during the experiment. One could ask the families to suspend all other therapies during the experimental period, but given how serious autism can be that would be unethical IMNSHO.

I’m guessing that a real, well-designed study (better than some dweeb on a message board talking out of his - ahem - hat) would take a couple of years to design, a couple of years to gather participants, most of a year to run, and a year or three to analyze the data. Man, medicine is hard!

Until that happy day when the definitive double-blind experiment is done to establish, or dis-establish, the efficacy of GFCF diets on behavior of autistic children, what are parents and health care providers to do?

My advice to parents: give CF diet a whirl if you want, and see if it helps your kid. If so, cool! If not, no big deal - it’s not reported to work on all kids. If you want to try GF (which is much more of a pain in the ass), go for it. Lord knows I haven’t. Again, not a big deal either way. If you don’t feel like trying dietary changes at all, that’s fine. Dietary changes are a lot harder to implement that you might think. Especially since food allergies are often co-morbid with autism.

I’m not saying I have a cure for anything. I’m not saying it’s easy under any circumstances. I’m not saying buy my book (which doesn’t exist). I am telling you what I observed with my son.

[QUOTE=treis]
For example, you say that Dweezil’s behavior deteriorated after a birthday party. You attribute this to the dairy, but could it not have also been the stress of the birthday party? That’s an issue a proper double blind study will eliminate by isolating one factor for study.
[/QUOTE]
It wasn’t just a birthday party. It was many other occasions, both ordinary and unusual. Even other birthday parties, where he went dairy-free, or had less dairy, were less of a problem.

[QUOTE=treis]
In addition, the double blind eliminates bias in the observer. It doesn’t make you a bad person if you are biased towards seeing what you want to see. It makes you human.
[/QUOTE]
I understand what you are saying here. But what strikes me about this whole situation is that I was not expecting there to be any effect from diet. But there were. The effects were replicable for my kid. I recognize this makes my situation at best one datum - not even data (plural). The results for me and mine have been more consistent than I’ve documented in this thread. I need sleep - you’ll have to trust me on this, or not. :smiley:

[QUOTE=treis]
Double blind studies are what separate the legitimate treatments from the snake oil. Until someone comes out with one of those studies for dairy/gluten I’m going to think that it’s snake oil.
[/QUOTE]
An understandable attitude, particularly for an ignorance-fighting board. That attitude is well warranted for therapies that are risky. I remember hearing about a kid who died from chelation therapy. :shudder:

As was mentioned upthread, dietary changes can be easier to try than to test for. If they don’t work, you’re only out some extra meal planning. The only bad effect on Dweezil of being mostly dairy-free for much of his childhood, is that he’s kind of skinny.