Study: Gluten-Free = No Benefit for Children With Autism

[IIOY]

From The WSJ:

A diet popular as an alternative treatment for autism doesn’t appear to improve behaviors or symptoms of the condition, according to a small but rigorously conducted study published this month in the Journal of Autism and Developmental Disorders.



The new work, conducted by researchers at the University of Rochester Medical Center, examines the gluten-free, casein-free diet and offers what many experts in the field say perhaps the highest-quality evidence to date that eliminating proteins found in wheat and dairy doesn’t improve autism symptoms.



Many interventions for autism have been well-studied and demonstrate benefits, particularly if begun in children very young, including applied behavior analysis and developmental therapies.



But many families are willing to try a range of unproven therapies in an effort to do whatever they can to help their children, say clinicians and advocates. Some in the autism community have long suspected that diet and food additives have a negative impact on children with the developmental disorder, which is characterized by social and communication deficits.



Anecdotal reports about restrictive diets improving or even erasing symptoms in children have prompted many parents to try such diets—especially, over the past 15 years or so, those restricting gluten, a protein found in wheat, and casein, present in dairy. At the University of Rochester’s Kirch Developmental Services Center, where some 1,200 children with autism are seen a year, about 1/3 have been on such a diet at some point, according to Susan Hyman, division chief of neurodevelopmental and behavioral pediatrics there and the lead author of the newly published paper.


One theory behind the gluten- and casein-free diet is that children with autism have trouble digesting these proteins and, because of a “leaky gut”, absorb components of these compounds that lead to physical discomfort and behavioral symptoms, according to Dr. Hyman.


Research evidence about the diet, however, has been sparse and mixed. One major limitation of previous work is that usually parents know that the child is on the diet, leading to potential bias.



Experts’ biggest worry about the diet is that children may not get all necessary nutrients, such as calcium and vitamin D, once major food groups are eliminated. The diet also can be difficult for the parents to administer and the child to endure, particularly since many with autism tend to be picky eaters.



Dr. Hyman and her team wanted to test, in as scientifically rigorous a manner as possible, whether the diet had benefits. Fourteen young children between three and five years old with a diagnosis of autism were put on a gluten- and casein-free diet for 30 weeks, working with a registered dietitian to make sure they were getting the necessary nutrition.



After they got used to the diet, children were “challenged” weekly for 12 weeks either with a food that contained gluten, casein, both, or a placebo. None of the researchers, parents or children knew if they were getting a real food challenge or a placebo.


Dr. Hyman and her group worked carefully with a kitchen at the university clinical research center to create foods with and without gluten and casein. The with-without diets mimicked each other so closely in taste and texture that children couldn’t detect a difference.



The amount of gluten in the challenge was the equivalent of what’s found in two chocolate-chip cookies, and the casein in a half-cup of milk.



Though the researchers initially wanted more children in the study, ultimately only 14 completed it because of both the difficulty of persuading families to sign up and the number of dropouts, the researchers said. Some families left because their children complained about the diet.



The scientists recorded a range of behaviors in the lab after each food challenge and asked parents to monitor others at home, including a range of autism symptoms, sleep patterns and bowel movements.



The data showed no significant change in any of the outcomes between when they were challenged with gluten or casein and when they were given a placebo. “At this point in time we do not have evidence that the gluten-free, casein-free diet will improve the symptoms that we measured in young children with autism,” says Dr. Hyman. “But that doesn’t mean other aspects of nutrition shouldn’t be studied.”



Another takeaway from the study is that with the proper monitoring and consultation, the diet can be administered safely, Dr. Hyman says.



Susan E. Levy, a neurodevelopmental-disabilities pediatrician at the Children’s Hospital of Philadelphia, who wasn’t involved with the current study, called the study “really well-designed” and a nice piece of evidence in helping to disentangle whether the diet really benefits children with autism or not.



“We need to be skeptical about treatments that really don’t have evidence,” Dr. Levy says. “Even if they’re benign, we don’t want families spending time and money that may take away time from treatments we know are effective.”



She also cautioned that while dietary restrictions and supplements for autism are generally unsupported by evidence but likely not harmful, some other alternative treatments haven’t been well-studied and are potentially dangerous, and families should stay away from these. They include chelation or removing heavy metals from the body, stem cell therapy and hyperbaric oxygen therapy, says Dr. Levy.



Replicating these findings in a similarly high-quality study in a larger group of participants will be important to determine conclusively that the diet isn’t effective in children with autism, says Linda Bandini, a professor at the University of Massachusetts Medical School and Boston University, who conducts research on nutrition, physical activity and obesity in children with autism spectrum disorders and wasn’t involved in the study.



Children with autism are so different from one another that it’s difficult generalize from the small study that the diet wouldn’t work for any children with autism, she says.



Dr. Hyman, the study author, says in her clinical practice she tells families that a gluten-free, casein-free diet doesn’t appear to be helpful, but if they are insistent on trying it while also giving their child evidence-based interventions, she would support them. “I can understand, with any chronic illness, people who address things with wellness and things they have control over,” like diet, says Dr. Hyman.



Elaine Buchovecky, a nurse from Victor, N.Y., whose 14-year-old son Nicholas was in the study, said she had heard of the diet before but hadn’t tried it. “To me it was kind of no-brainer,” she says. “If it helps him, great.”



However, she didn’t see much of an impact when they made the changes. In fact, during one of the challenges, she and her husband were convinced that Nicholas was getting gluten but found out afterward that he received a placebo that week.



They continued their son on the diet for a brief time after the study ended until one day he got into a box of Cheerios, which have gluten in them, and he showed no difference in behavior after eating them. Her husband said there are so many things he won’t eat, if he likes this, let him eat it, recalls Ms. Buchovecky.

[ttt]

Well, I'm sure that will be the beginning of the end for these diets as parents realize there's no scientific evidence behind it and they don't work.

LOLOLOL

[auntie]

This is the abstract from the study.

The Gluten-Free/Casein-Free Diet: A Double-Blind Challenge Trial in Children with Autism.






To obtain information on the safety and efficacy of the gluten-free/casein-free (GFCF) diet, we placed 14 children with autism, age 3-5 years, on the diet for 4-6 weeks and then conducted a double-blind, placebo-controlled challenge study for 12 weeks while continuing the diet, with a 12-week follow-up. Dietary challenges were delivered via weekly snacks that contained gluten, casein, gluten and casein, or placebo. With nutritional counseling, the diet was safe and well-tolerated. However, dietary challenges did not have statistically significant effects on measures of physiologic functioning, behavior problems, or autism symptoms. Although these findings must be interpreted with caution because of the small sample size, the study does not provide evidence to support general use of the GFCF diet



The study group is small, so it is possible they missed some benefit. But if the parent survey often quoted were correct and 69% of children showed a benefit, this study should have picked that up.



There are, of course, people who are sensitive to various foods. People both autistic and not. So some fraction of the population will benefit from elimination diets. But the idea that many promote of elimination diets as the first thing to try, no matter what (and there are people who do), is flawed at best.insert quote here

I think the core of this issue is that what we call ASD is really a group of different conditions that have different causes. It could explain the huge differences in presentations from brilliant, quirky musicians, actors and writers to those who are nonverbal, disengaged and have profound ID based on traditional IQ tests.

The 69% of parents is interesting to me. IRL and on my ASD forums, about 10-15% of parents of ASD kids I talk to who try the diet claim to see some improvement. Not all of these people are nutjobs. Anecdotally, it seems kids who have GI issues, who restrict themselves to a carb/dairy "white diet" and/or who are more atypical and trending toward aggression seem to be the ones who improve. 

We never did dietary interventions with DS; he doesn't seem like the kind of kid who would benefit. And special diets have a downside. So much of socialization happens around pizza and ice cream. Opting out can make true inclusion even harder. But I get the appeal for parents. When you're dealing with ASD you want to be part of the solution to help your child; I could see where a special diet would feel like you are actively participating in helping your child. 

[StrawberryBlondie]

My friend who firmly believes vaccines caused her kids' autism also believes this sort of diet cured them. That kind of told me what I needed to know.

[hopecounts]

yeah not shocked.
I still wouldn't mind trying it for a while but more to break DD of her beige/white diet then any expectation of improvement, though she does have some GI issues that I wonder if it might help.
But we'd have to get her to tolerate new/different foods first so that may or may not happen anytime soon.

[laurenpetro]

 thank you for justifying my laziness in trying this out on B. he basically eats all gluten and dairy. that's it.

(lips)

[laurenpetro]

Sept 15, 2015 9:10:17 GMT -5 mockingbird said:

Oh. So I'm not just lazy and over eager to medicate? As I was recently told by a juicer.... good to know

I'm glad this study was published. I did try gluten free for ds1. It was hell on earth, because denying him bread pissed him the hell off, and didn't help at.all.

hey!  i've been thinking about you.  how are you guys doing?

[CallingAllAngels]

Now, can we have a study that says gluten-free doesn't help with anxiety and insomnia, so I can get a friend who thinks I should try it with DD off my back?

[laurenpetro]

Sept 15, 2015 9:14:23 GMT -5 mockingbird said:

Sept 15, 2015 9:12:03 GMT -5 laurenpetro said:

hey!  i've been thinking about you.  how are you guys doing?

He's doing awesome. He's home 5 days a week and we're looking at going totally out patient by the end of this month.

We took him off all of his stimulants (which the psychiatrist fought us hard on) and it made a HUUUUUGE difference. He still has melt downs, but he's not physically coming at us anymore.

B had an epic shitfit on sunday (scratching, hitting, kicking and biting for the first time) and all i could think of was, "i can totally get through this."  i knew i could because of you.  (heart)

[laurenpetro]

Sept 15, 2015 9:31:04 GMT -5 mockingbird said:

I'm sorry you had such a rough fit with him.

ah, that's ok.  it had been a while.  we were due.

i've decided to keep him as when he got home yesterday after a day with g-ma and g-pa he ran up to me and gave me The. Best. Hug.  and a sloppy kiss.

but seriously, what the fuck with the biting???

PS: sorry i hijacked this, IIOY

[litebright]

The first mom I met who also had a kid with autism was extremely gung-ho GFCF. We had a few playdates, and I remember her son with ASD at one point reaching out and smacking his sister, and her reaction was a mild verbal correction and saying to me, "It's been a tough day with him. I think he's been glutened!"

I dunno. It seemed to trivialize things, in a way, or something that could all too easily just become an excuse not to deal head-on with bad behavior because it's not the kid's "fault", it's the food/the parents' fault for not controlling their diet strictly enough. I can see some parents being very, very attracted to the idea that if they just put enough work into their kids' diet, then their children won't have ASD any more.

It is so freaking tempting to think with any kind of behavioral condition that A+B=C, and if you can just change A or B then you'll get a different and better outcome, and unfortunately it is almost never that simple. I haven't restricted DD1's diet, but the thought has crossed my mind. When the gold standard of treatment costs tens of thousands of dollars a year that may or may not be covered, it's not rocket science to think that families are driven to consider alternatives that they can more or less handle themselves.

[lizard1131]

Our neurodevelopmental ped here is a whackado. We have been doing gfcf + supplements for a year. No changes that I can attribute to it. Her exczema is better because she is allergic to dairy, but that's about it. We tried it because well why not. We actually decided not to continue before this article came out. The Dr. is just too crazy and I just don't trust his judgement anymore. sigh.

[lyssbobiss, Command, B613]

Brb, sending this to my XMIL who is too busy trying to convince me that Babycakes' ASD is because of his diet instead of his shitty shitty genetics. I love being blamed for my kid's illness tho. Maybe next we can talk about what kind of shit she must've fed her son that he became an alcoholic.

[IIOY]

Sept 15, 2015 9:34:06 GMT -5 laurenpetro said:

Sept 15, 2015 9:31:04 GMT -5 mockingbird said:

I'm sorry you had such a rough fit with him.

ah, that's ok.  it had been a while.  we were due.

i've decided to keep him as when he got home yesterday after a day with g-ma and g-pa he ran up to me and gave me The. Best. Hug.  and a sloppy kiss.

but seriously, what the fuck with the biting???

PS: sorry i hijacked this, IIOY

Girl, you know I don't mind.  I'm really sorry you're having a tough time.