Tuesday, May 08, 2007

GFCF Diet Treatment for Autism Unsupported by Evidence





One of the persistently promoted treatments for autism is the GFCF diet - a treatment with no evidence to support its efficacy in treating autism. We tried it with Conor several years ago with no result. Anecodotal evidence, which is available to support ANY therapy, keeps the treatment popular with parents. The GFCF diet treatment is pushed on the internet, even by some who know there is no scientific evidence to support the diet as an effective autism treatment. Unfortunately, parents will continue to spend time, money and their hopes on this and other non evidence based treatments.


"Science disputes autism's diet link

HAYLEY MICK

From Monday's Globe and Mail

May 8, 2007 at 9:13 AM EDT

TORONTO — Tina Szenasi's quest to cure her two autistic sons began with soy milk.

Ms. Szenasi switched to the milk substitute after reading testimonials from other parents who said their autistic children's symptoms had improved - even disappeared - when dairy and wheat were eliminated from their diet.

Her doctor dismissed it as farfetched. But the mother of three from Barrie, Ont., felt she had no choice but to try the gluten-free, casein-free (GFCF) diet for her boys, whose neurological disorder made them easily distressed and socially isolated. Introducing the diet "gave me a sense of hope," she says.

She quickly transformed her kitchen into a culinary laboratory. Her butterless cookies crumbled. Cakes made using rice flour were a disaster. Grocery bills topped $500 each week as she ordered gluten-free bread and potato-based milk substitutes that weren't available in her small city.

But her sons improved within weeks, she says. Now, Adam, 11, often hugs his parents and has fewer tantrums. Alex, an eight-year-old soccer and video-game enthusiast, behaves like most other kids. "He's almost fully recovered, I think because of the dietary intervention," Ms. Szenasi says.

More Canadian parents are adopting the controversial diet for their autistic children as support spreads through a fringe group of health professionals, commercial websites and chat forums. Supporters say gluten and casein are not well digested by autistic kids, who often exhibit digestive problems and food allergies.

The protein compounds, they say, wreak havoc with the children's neurological development. To eliminate those triggers, parents spend thousands of extra dollars on special foods, vitamins and enzyme supplements as well as laboratory testing in the United States.

But most mainstream scientists remain skeptical of the gut-brain connection in autism. They say there's no scientific proof that the diet works. Some doctors warn that parents' desperation, paired with the mystery surrounding autism's causes, makes the field ripe - as a top American pediatric gastrointestinal specialist put it - for "charlatanism."

"If there's nothing else that you think is going to help and you're desperate, you'll do anything," said Wendy Roberts, the head of the autism research unit at the Hospital for Sick Children in Toronto.

The GFCF diet eliminates two major food groups from an autistic child's diet: dairy products, which have casein, and grains such as wheat, barley and rye, which contain gluten. Children on the diet often eat a lot of meat and vegetables, plus wheat and dairy alternatives. Some families add vitamin and enzyme supplements.

Even supporters say it isn't clear how the diet works. One explanation involves the "leaky gut syndrome." Undigested bits of protein, according to this theory, are absorbed through the intestine into the body, affecting the brain and producing symptoms associated with autism.

To date, only one double-blind controlled clinical trial - the gold standard for health research - has tested the diet. Published in March, 2006, in the Journal of Autism and Developmental Disorders, the study found that the group of children on the diet saw no significant improvements compared with the control group. Researchers say more testing is needed because the study was based on a small sample.

"The information that's out there suggests that the diet probably does not have a substantial effect on children's behaviours," says Lonnie Zwaigenbaum, a University of Alberta associate professor and director of autism research at Edmonton's Glenrose Rehabilitation Hospital.

Yet almost every parent Dr. Zwaigenbaum sees has either tried the GFCF diet with their autistic child or heard of it, he says. Parents are leaping ahead before science has definitively proved whether such a treatment works, he says, because there are compelling anecdotal cases of improvement.

Autism's causes have long stumped experts. They know that genes play a major role - but increasingly, with diagnosis of the condition on the rise, researchers are looking to environmental triggers including prenatal hormones, toxins, food allergies and infections. As a result, treatments such as the GFCF diet, which focus on removing such triggers, are gaining ground.

"It's word of mouth," say Paul Cutler, a family doctor based in Niagara Falls, N.Y., who works one day a week in Burlington, Ont. "Thanks to the Internet, they're finding these alternatives."

About half of Dr. Cutler's 200 autistic patients are Canadian, and they travel to his offices from across Ontario and Quebec. He charges $150 for an initial assessment that includes a battery of tests - a cheap fee compared with other doctors, he says.

Dr. Cutler has been trained by a group called Defeat Autism Now! (DAN!), which holds annual conferences and instructional sessions for doctors from across North America. The group recommends biomedical treatments for autism that focus on intestinal problems, nutrition, detoxification and allergies. Twenty-six Canadian doctors are listed on the group's website as DAN! practitioners.

They include Wendy Edwards, a pediatrician in Chatham, Ont., who found the diet four years ago when her three-year-old son was diagnosed with autism. He improved so dramatically, she says, that the diet is now the first thing she recommends for autistic patients who travel to see her from across Ontario and even Manitoba. She also encourages other biomedical treatments, including supplements such as vitamin B6, magnesium and dimethylglycine, or DMG.

Some research suggests that up to 40 per cent of children with autism spectrum disorders could benefit from dietary changes, including the removal of gluten or casein, says Timothy Buie, a pediatric gastrointestinal specialist at Massachusetts General Hospital in Boston.

But Dr. Buie, who runs one of the largest practices for children with developmental disabilities in the United States, warns that parents may place so much hope in the diet that they falsely believe their child has improved. "The placebo response is gigantic," he says. "Parents can interpret a benefit because they want their kid to do better."

While parents travel to find doctors, they also ship urine and stool samples to U.S. labs to be analyzed for nutrient and vitamin deficiencies - tests that aren't widely available in Canada. One parent interviewed for this story said she paid up to $300 (U.S.) each for several lab tests.

Some in the industry may be peddling false hopes for big profit, critics warn. "People may choose to recommend things therapeutically that are in their financial interest," Dr. Buie says. "You walk out of a doctor's office and they give you a list of vitamins that they happen to be selling in their outside room."

Other doctors worry about the role of for-profit labs. "Many are not bona fide labs and they're making a fortune," says Dr. Roberts at Sick Kids in Toronto, who adds that parents have handed her results from U.S. labs that don't make any sense.

The Internet is where many parents go to share information, recipes and contacts. Brenda-Lee Olson from Terrace, B.C., moderates a popular online group called GFCFrecipes, whose membership has multiplied tenfold, to 3,400, in the past six years.

"It helps to know certain tricks," says Ms. Olson, who says many people don't believe her 17-year-old son is autistic, thanks to the diet. "The only way to get that information is from other parents."Ms. Szenasi says she'll keep her children on the diet despite the cost. She now keeps a folder stuffed with GFCF diet material at the health-food store where she works, so she can hand it out to other parents."

12 comments:

Maya M said...

I think it is high time for several double-blind, placebo-controlled trials of GFCF diet including larger groups of children. I wonder why scientists haven't done this yet. I saw at the CDC site that they are currently recruiting patients for such a study.
However, even if disproved, I am sure that the diet will still be practised by many parents and recommended by DAN! doctors.
I was surprised to see that most DAN! doctors still recommend secretin, which (unlike the GFCF diet) has been thoroughly studied and its supposed beneficial effect has been disproved.
As for what parents are saying - just look at http://www.autismwebsite.com/ARI/treatment/form34q.htm! You see that whatever diet is tried, roughly half of parents say it helps.

passionlessDrone said...

If you have a gut kid, dietary changes are likely to have an impact. If not, then likely not. If you are in the business of changing diarheah diapers every day for a year, then suddenly you are not when the wheat and milk are removed, what does it matter that it is 'unproven'. What's more, it is easy to prove again; give your child a few grilled cheese sandwhiches and see what happens. Try this expirement a couple of times and no number of double blind studies telling you it doesn't work will impact your decision making.

The idea of a double blind / placebo study seems patently absurd in terms of implementing gf/cf; is that real milk I'm getting, or soy milk? Is that real cheese, or fake cheese? Did Johnny steal some cookies at school? How on Earth could they possibly blind the parents towards which food group they were assigned?

- pD

Ginger said...

We have tried many interventions over the last three years for our son, stuck with the ones that worked, abandoned the ones that didn't. If there was ever one that I WISHED didn't work it was the GFCF diet. It is a huge pain and it is expensive.

But...

Day two on the diet he began making eye contact with us and day three he began to answer to his name, and it was all up hill from there. In the last three years he has been off the diet several times which resulted in disaster.

Add to all that the fact that when he gets a hold of something he should not have, he reverts to the chronic constipation that he had for the first two years of his life before the diet.

So in our three years study with a test group of one, the diet works conclusively.

Autistic interventions that do not work, do not stay alive in the autistic community very long. It is so pervasive because it works for most of our kids.

But NOT all our kids.

The question that researchers should be studying is not DOES it work for autistic kids, but which autistic kids does it work for and why?

Part of the problem with autism research is that we KNOW that are between two and five different physical syndromes that exist that all result in the behavioral symptoms of autism. Clumping all those kids together and trying to find causes and cures is like putting together a group of adults with severe mental retardation to study them for treatments, but not differentiating between those who have downs syndrome and those who were in serious car accidents when they were in law school.

Some autism is from birth, some is regressive. Around 80% of autistics have large heads higher IQ and those are 8 to 1 boys. About 20% have normal heads, lower IQs and those have a 1 to 1 boy girl ratio.

These are clearly different physical disorders that have been mixed together. Until we get a physical diagnostic criteria for each and separate the "Autisms" then we will keep wasting money on silly studies that ask the wrong questions.

Maya M said...

I am deeply disturbed by opinions such as the two above comments. They basically say that science isn't an efficient way to reach knowledge, or at least not as efficient as anecdotal observations done by biased lay people. Although science hasn't so far offered much to help autistic children, I don't think such opinions about its merit will help, either.
BTW what is wrong in a common approach to cases of mental retardation due to different causes? In some respects, it is relevant. These children are put together and taught together in special education classes, regardless of the cause. Some approaches, including ABA, are expected to help all of them.

Maya M said...

At http://www.autism-watch.org/about/bio2.shtml, you can read the touching story of a doctor who got involved with GFCF diet and other alternative therapies in a desperate wish to help his two autistic sons. At http://www.greatplainslaboratory.com/conference/Laidler.html I found an older document by the same author, written while he still believed in the diet's efficiency.

passionlessDrone said...

Hi Mayam -

"I am deeply disturbed by opinions such as the two above comments. They basically say that science isn't an efficient way to reach knowledge, or at least not as efficient as anecdotal observations done by biased lay people. Although science hasn't so far offered much to help autistic children, I don't think such opinions about its merit will help, either."

You basic assessment of my statement is way, way off the mark.

There are some things that will simply will not be double blind / placebo testable. Drastic dietary changes are one of those.

I would make a million dollar bet that you have never, ever eaten a GF/CF 'pizza'. They are horrible. There is absolutely NO WAY you could blind the particpants as to if they were eating real cheese, or fake cheese.

In all seriousness, do you believe you could give stop giving a person real milk, start giving them soy milk, and think they would not be able to tell the difference? Have you ever tried pasta comprised of quinoa and corn? Short of tounge removal, there is way you could blind anyone who has eaten real pasta as to which they were eating.

Don't believe me? Try some GF pasta one night if you dare. Then come back and tell me double blind placebo studies could work for GF/CF or other dietary interventions.


- pD

Maya M said...

It is very easy. Give soy milk to both groups and add a spoon of real milk to the control group's cups. Order GFCF pizza for everybody and add some real flour to the control group's pizzas.
My God, at the 3rd millenium, science can deal with a challenge more serious than this one! As far as I know, parents of the children in the only controlled trial of GFCF diet were unable to tell whether their child was in the experimental and control group (in fact, they all thought the children were in the experimental group and reported improvement).

passionlessDrone said...

Hi Mayam -

LOL!

In all of your very 'simple' examples, the control group would get much, much less gluten and casein than in a standard diet, would they not? It seems, you advocate testing a 100% GF/CF diet, and a 95% GF/CF diet.

Imagine a drug trial where one group got 100% of the drug, the control group got 95% drug and 5% filler; then was proclaimed as a gold standard study. I imagine you'd jump all over such an absurdly designed study, as you should.

On the other hand, perhaps this is exactly what the researchers have done! (Do you have a copy of the actual paper?) If so, it might provide a reason why the parents were unable to tell which diet their children were on; as well as why so many reported improvements even in the 'control' group.

I am still convinced you have never tried a GF/CF 'pizza', no matter how much added flour was applied.

ROFL!

- pD

Maya M said...

I haven't read the actual paper. And I have regarded just one opportunity - that the autistics participating in the study are fully able to communicate. If they are young children, or even older but non-verbal and unable to write, and if their parents are not present at meals, it absolutely doesn't matter what they mention. You can give soy milk to the experimental group and 100% real milk to the control group and even if the children do mention, it doesn't matter, because they won't tell.
As for the "95% GFCF diet", this just doesn't hold water. Nobody says, "Reduce the gluten and casein in your child's food. Give him bread or pasta at breakfast only, then use rice or potatoes as a carbohydrate source. Give him milk or cheese at breakfast only, then use meat or eggs as protein source and add calcium supplement if needed." All sources about GFCF diet I've read say something like, "Eliminate ALL gluten and casein, down to molecules, because even a miniscule amount will bring all symptoms back." Which is LOL, because if the presumed mechanism of "exorphine" action is correct, the effect of gluten and casein will be dose-dependent, not of the type "everything or nothing".
I don't say that GFCF diet is all without effect, in fact I am inclined to think it might help some autistics. But we need research to be done before making any claims. While waiting for this research, I am not against parents trying this diet, they just have to consult a dietician so that to compensate for withdrawal of milk products from the child's diet. What troubles me is the strong anti-scientific attitude of most such parents, the conviction that scientists are unable to observe, to draw conclusions, to figure out what parents figure out, e.g. that it may be only a proportion of autistic children who will benefit from the diet. Do these parents really believe that all people making science are round fools? Or their insistence that "stupid-scientists-will-never-figure-out-the-true-and-magnificent-effects-I-am-observing" reflects their subconscious doubts?

passionlessDrone said...

Hi Maya M -

Restricting diet isn't something that can be done three times a day; especially for the child that wants their favorite foods back. It must be an all day effort. Who is keeping the child from getting into something at school, or between meals? Everyone has to be on board; teachers, therapists, and parents. For 16 year olds, which were included in the group, this means either removal of offending foods from the house, or hawkish attention from parents.

As far as creating a group of participants none of whom have any communication skills, it seems like you are mucking with the pool of patients in order to get to a place where they can be blinded. I'm all for understanding the phenotypes of autism out there, but it seems there would be better mechanisms to group when testing for dietary changes than only non communicative children may participate.

"Which is LOL, because if the presumed mechanism of "exorphine" action is correct, the effect of gluten and casein will be dose-dependent, not of the type "everything or nothing"."

This is EXACTLY why giving everyone soy milk, and some getting 5% cows milk would constitute a poor study. You are the one that came up with this 'simple' mechanism to blind the particpants, not me. If you agree that it is a poor way to perform a study, we are in agreement.

"What troubles me is the strong anti-scientific attitude of most such parents, the conviction that scientists are unable to observe, to draw conclusions, to figure out what parents figure out, e.g. that it may be only a proportion of autistic children who will benefit from the diet."

My original posting says the following:

"If you have a gut kid, dietary changes are likely to have an impact. If not, then likely not. "

Likewise, Ginger said:

"But NOT all our kids."

Does this not imply that only a proportion of children will benefit from dietary changes (or any intervention)?

"Do these parents really believe that all people making science are round fools? Or their insistence that "stupid-scientists-will-never-figure-out-the-true-and-magnificent-effects-I-am-observing" reflects their subconscious doubts? "

Many of these parents have experienced doctors being dead wrong about their child's condition for a long time. The only time they have seen improvements is when they tried things that they were told by their regular pediatricians have no scientific backing. It does tend to jade you.

As I've said previously, the proof for us was in the diapers. We couldn't be absolutely sure if Luke was looking at us more, or babbling more. But, we were absolutely convinced his stools were more regular and more well formed. There are no number of peer reviewed studies that can be published that will convince me that I am imagning a more regular, better formed stool when my son does not eat certain foods. Having someone who hasn't been changing those diapers for three years tell you differently can start to get a little frustruating.

"While waiting for this research, I am not against parents trying this diet, they just have to consult a dietician so that to compensate for withdrawal of milk products from the child's diet."

Cow milk and/or large amounts of calcium are not necessarily all that good for children; it has been linked to the development of diabetes and various auto immune disorders. Diets high in animal protein are also associated with greatly increased risk of cancer and heart disease.

- pD

Maya M said...

Passiondrone, Ginger and I didn't differ in the opinion that some proportion of autistic children might benefit from GFCF diet. The difference was in opinion about the ability of science to detect this. My opinion is that if such an effect really exists, science can detect it (and, after more studies, will be able to find which children would benefit from the diet so that only they are put on it). My two opponents think that scientists can detect real improvement only if it is not only spectacular but affecting the whole group, and they will be unable to detect an improvement only in a proportion of the group, partly because they are too stupid to figure out that this may be the case. I continue to disagree.
"Cow milk and/or large amounts of calcium are not necessarily all that good for children; it has been linked to the development of diabetes and various auto immune disorders. Diets high in animal protein are also associated with greatly increased risk of cancer and heart disease."
I've never meant "large amounts", just the necessary amounts of calcium. As for how harmful milk and other animal foods are, go and tell it to the people who cannot afford these products and whose children suffer from protein-energy malnutrition. When I was young, the food prices were fixed by government and we were hearing this "argument" every time the government was about to increase them. I don't want to read it again, so I lower my banner and leave the discussion. Just one link more - it's about Feingold diet, not GFCF diet, but it is also recommended by DAN! doctors and the phenomena associated with it are the same. http://www.quackwatch.org/01QuackeryRelatedTopics/Victims/feingold.html

passionlessDrone said...

Hi Maya m -

" My two opponents think that scientists can detect real improvement only if it is not only spectacular but affecting the whole group, and they will be unable to detect an improvement only in a proportion of the group, partly because they are too stupid to figure out that this may be the case. I continue to disagree."

LOL! So now I'm stupid. (?) Maybe I'm too dumb to see it, so can you show me where I make the argument that scientists will only be able to validate dietary modifications if it is spectacular and affects the whole group? In fact, when I said, 'If you have a gut kid, dietary changes are likely to have an impact. If not, then likely not', doesn't this say that I feel the opposite?

In all seriousness, where have I made this argument? If you are going to be throwing the stupid tag around, you should be prepared to back it up.

"As for how harmful milk and other animal foods are, go and tell it to the people who cannot afford these products and whose children suffer from protein-energy malnutrition."

There are many, many ways to get a protein rich diet without taking dairy or animal products. Do you have any links on 'protein energy malnutrition' and the consequent need to take dairy or animal products?

"When I was young, the food prices were fixed by government and we were hearing this "argument" every time the government was about to increase them."

The government is still in the business of fixing food prices, btw.

In any case, the notion that animal protein is strongly correlated to cancers, auto immune disorders and heart disease isn't an isn't an 'argument'. It is backed by basic and applied science.

Pub Med - Milk and Diabetes"

Pub Med - Milk and Diabetes

There are many more but I get the feeling it won't matter. I recently finished a fascinating book called 'The China Study' which provides hundreds of references to the dangers of the western diet high in animal protein. I would recommend it to you.

The link you have provided for the Feingold diet on quackwatch is invalid. Perhaps you are 'just too stupid to figure out' how to put a link in? ROFL!

As far as Feingold, we are not explicity on it, but by staying with whole foods and very little processed foods we are more or less there by default. Instead of dyed and preserved appleauce, we eat apples. Instead of fruit 'drink' with high fructose corn syrup, we drink 100%' juice. Instead of twinkies, we make a cake with flour, eggs, sugar and leaveners. Do you honestly think this is a worse choice than twinkies, fruit 'drink', and canned applesauce?

What problem, exactly, do you have with eliminating sythentic dyes, colorings, sweeteners, and preservatives from a diet? Would you advocate children get more aspartame and more preservatives made from petroleum in their diet? The Fiengold diet is about fewer additives; I am genuinely at a loss as to why you might think that a diet with more preservatives would be a better choice for anyone, autistic or not. Just because a DAN! doctor recommended it once?

- pD