GFCF of no benefit

19 May

This post is from Eureka Alert

A popular belief that specific dietary changes can improve the symptoms of children with autism was not supported by a tightly controlled University of Rochester study, which found that eliminating gluten and casein from the diets of children with autism had no impact on their behavior, sleep or bowel patterns.

The study is the most controlled diet research in autism to date. The researchers took on the difficult yet crucial task of ensuring participants received needed nutrients, as children on gluten-free, casein-free diets may eat inadequate amounts of vitamin D, calcium, iron and high quality protein. Unlike previous studies, they also controlled for other interventions, such as what type of behavioral treatments children received, to ensure all observed changes were due to dietary alterations. Past studies did not control for such factors. And although no improvements were demonstrated, the researchers acknowledged that some subgroups of children, particularly those with significant gastrointestinal (GI) symptoms, might receive some benefit from dietary changes.

“It would have been wonderful for children with autism and their families if we found that the GFCF diet could really help, but this small study didn’t show significant benefits,” said Susan Hyman, M.D., associate professor of Pediatrics at Golisano Children’s Hospital at the University of Rochester Medical Center (URMC) and principal investigator of the study which will be presented Saturday (May 22) at the International Meeting for Autism Research in Philadelphia. “However, the study didn’t include children with significant gastrointestinal disease. It’s possible those children and other specific groups might see a benefit.”

In response to widespread parent-reported benefits, URMC initiated the trial in 2003 to scientifically evaluate the effects of the gluten-free and casein-free diet, which eliminates wheat, rye, barley and milk proteins. Parent observation has played an important role in earlier treatment discoveries in children with autism, such as melatonin’s benefits for sleep.

Hyman’s study enrolled 22 children between 2 ½- and 5 ½-years-old. Fourteen children completed the intervention, which was planned for 18 weeks for each family. The families had to strictly adhere to a gluten-free and casein-free diet and participate in early intensive behavioral intervention throughout the study. Children were screened for iron and vitamin D deficiency, milk and wheat allergies and celiac disease. One child was excluded because of a positive test for celiac disease and one was excluded for iron deficiency. Other volunteers who were excluded were unable to adhere to the study requirements. The children’s diets were carefully monitored throughout the study to make sure they were getting enough vitamin D, iron, calcium, protein and other nutrients.

After at least four weeks on the strict diet, the children were challenged with either gluten, casein, both or placebo in randomized order. They were given a snack once weekly with either 20 grams of wheat flour, 23 grams of non fat dried milk, both, or neither until every child received each snack three times. The type of snack was given in randomized order and presented so that no one observing – including the family, child, research staff and therapy team – knew what it contained. The snacks were carefully engineered to look, taste and feel the same, which was an exercise in innovative cooking. In addition, the nutrition staff worked closely with the families to make a snack that met their child’s preferences. Casein was disguised in pudding, yogurt or smoothies and gluten in banana bread, brownies, or cookies depending on the child’s food preferences.

Parents, teachers and a research assistant filled out standardized surveys about the child’s behavior the day before they received the snack, at two and 24 hours after the snack. (If the child’s behavior wasn’t usual at the scheduled snack time, the snack would be postponed until the child was back to baseline.) In addition, the parents kept a standard diary of food intake, sleep and bowel habits. Social interaction and language were evaluated through videotaped scoring of a standardized play session with a research assistant.

Following the gluten and casein snacks, study participants had no change in attention, activity, sleep or frequency or quality of bowel habits. Children demonstrated a small increase in social language and interest in interaction after the challenges with gluten or casein on the Ritvo Freeman Real Life Rating Scale; however, it did not reach statistical significance. That means because of the small difference and the small number of participants in the study, the finding may be due to chance alone.

The investigators note that this study was not designed to look at more restrictive diets or the effect of nutritional supplements on behavior. This study was designed to look at the effects of the removal of gluten and casein from the diet of children with autism (without celiac disease) and subsequent effect of challenges with these substances in a group of children getting early intensive behavioral intervention.

Hyman said, “This is really just the tip of the iceberg. There are many possible effects of diet including over- and under-nutrition, on behavior in children with ASD that need to be scientifically investigated so families can make informed decisions about the therapies they choose for their children.”

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14 Responses to “GFCF of no benefit”

  1. Sullivan May 19, 2010 at 19:52 #

    “Children demonstrated a small increase in social language and interest in interaction after the challenges with gluten or casein on the Ritvo Freeman Real Life Rating Scale; however, it did not reach statistical significance.”

    Not statistically significant, but small improvements from gluten and casien.

  2. Niksmom May 19, 2010 at 20:04 #

    I don’t believe that GFCF is a magic bullet for anyone with autism IN GENERAL. That said, however, I’d be interested to know the criteria used in selecting subjects for these types of studies. Do they have any comorbid conditions such as cerebral palsy or cardio-pulmonary issues, etc.

    It would be nice if someone would conduct a controlled study on GFCF diets in subjects with identified comorbidities which are not bonafide allergies/celiac. And to separate the two proteins when given.

    There are any number of permutations of GI issues which, even our son’s gastroenterologist admits, could take years to ferret out without significant testing. Even then, she cautions, one must have some pretty specific symptomology to begin to isolate things like enzyme deficiencies, non-specific errors of metabolism and the like.

    As long as the individual receives adequate nutritional sources of vitamins, minerals, etc. then GFCF is probably the most benign course one could take.

  3. Joseph May 19, 2010 at 21:13 #

    Not statistically significant, but small improvements from gluten and casien.

    Possibly small improvements, but they couldn’t reject the null hypothesis (no improvement whatsoever.)

  4. farmwifetwo May 19, 2010 at 21:36 #

    Niksmom – I’m with you. Yes, the younger with the severe autism had no benefit but also had no bowel/sleeping issues. The elder – mild NLD at the time mild PDD – with the bowel/sleeping issues had significant changes in sleeping, bowel’s, moods, learning etc.

    Would be nice if they took into account all issues.

    Then maybe others wouldn’t have to be told the same thing I was “some autistic children are like that” when I asked about the cronic diahhrea/nightmares/terrors/and vicious bum rashes by our first Dev Ped.

  5. Caro May 19, 2010 at 22:17 #

    Interesting study that is currently ongoing. It shows something entirely different than the study referenced in this article. I suppose, however, that such is the nature of the beast in regards to autism treatment research.

    The ScanBrit randomised, controlled, single-blind study of a gluten- and casein-free dietary intervention for children with autism spectrum disorders.
    Whiteley P, Haracopos D, Knivsberg AM, Reichelt KL, Parlar S, Jacobsen J, Seim A, Pedersen L, Schondel M, Shattock P.

    PMID: 20406576 [PubMed – in process]

    From the abstract:
    “Our results suggest that dietary intervention may positively affect developmental outcome for some children diagnosed with ASD. In the absence of a placebo condition to the current investigation, we are, however, unable to disqualify potential effects derived from intervention outside of dietary changes. Further studies are required to ascertain potential best- and non-responders to intervention. The study was registered with ClincialTrials.gov, number NCT00614198.”

  6. Science Mom May 19, 2010 at 22:49 #

    Sullivan, I have the full-text of the aforementioned PMID: 20406576 if you want it. Just email me.

  7. IvarTJ May 20, 2010 at 00:39 #

    @Caro:

    When I saw that study indexed at Pubmed, I assumed the study was favourable by the list of authors. Most if not all have produced papers in support of GFCF previously as well. One of the authors, Kalle Reichelt, is credited for the opioid peptide excess theory of autism. He and Paul Shattock is associated with commercial urine testing labs for opioid peptides in Norway and England respectively.

  8. IvarTJ May 20, 2010 at 00:48 #

    At the very least the Norwegian one is commercial, I can’t say for sure with the English one.

    The Norwegian one is called Neurozym Pharma, and in England you contact the Autism Research Unit.

  9. Mike Stanton May 21, 2010 at 00:06 #

    In 2008 When Cass et al published their study finding no evidence of abnormal urinary peptides in autism the BBC quoted her as saying that
    “It is very distressing to have a diagnosis of autism, a lifelong condition. Many families are driven to try out interventions which currently have no scientific basis,” said Dr Hilary Cass of Great Ormond Street.

    “Advocates of the leaky gut theory offer children a casein and gluten-free diet which as yet lacks an evidence base. Our research throws serious scientific doubt on the putative scientific basis of that diet.”

    At the time Paul Whitely responded thus

    But Paul Whiteley of the Autism Research Unit at Sunderland University said while the study appeared to have ruled out one reason why a gluten and casein-free diet may work, that did not mean it was not effective for some sufferers.

    So the diet is supposed to work even though it’s theoretical basis has been “ruled out.” It will be instructive to compare Whitely’s methodology with that of Hyman when both are published. Meanwhile, may I refer you to the discussion on my blog.Diet and autism: fresh evidence.

  10. Katie Reid June 2, 2010 at 04:55 #

    the wave of the future in treating any condition is a personalized approach because there appears to be too many subpopulations for a “one size fits all” therapy approach. The same is with autsim – the spectrum is broad, the root causes appear to be varied and to rule out that a particular therapy is not beneficial with such a pathetic study is just a shame. I’ve tried the GF/CF diet on my 3.5 yr old autistic daughter and was skeptical but thought what’s the harm. I am amazed at the benefits – if we have an accidental exposure (which the learning curve is tough and accidents happened) in about 3-4 days after exposure, my little sweet girl would turn into a fog state and have serious behavioral issues. The symptoms would go on for 3 weeks before our sweet girl returns. This study looked at symptoms 2-24 hours after exposure – the observation window seems to be completely off from what I’ve been observing. What would be an amazing study is take the parents who claim there is benefit with the diet and conduct a similar study with some better observation time points. Perhaps this would look at the Autism subpopulation that benefits from such a therapy.

  11. Sullivan June 2, 2010 at 18:06 #

    Katie Reid,

    the GFCF diet is one of the “one size fits all” approaches to autism treatment. Alternative medical doctors and parents recommend it without seeing the children or running any tests or, for that matter, any data whatsoever other than the fact that the child has an autism diagnosis.

    It was used to support an incorrect hypothesis of what autism is.

    No one doubts that some children (and adults) can be sensitive to certain foods.

    What would be amazing would be for any of the alternative medical community to present real data to support claims such as the GFCF diet being beneficial in general. I recall vividly being told anywhere from 50-90% of kids (depending on who was talking) should benefit from GFCF.

    It wasn’t sold as a treatment for a “sub population”. It was sold as a “one size fits all” approach with the answer to what is autism.

  12. Leila June 2, 2010 at 18:14 #

    With food intolerance you’d see the effects in much less than 3 or 4 days of exposure, it would be within one day. Katie, autistic behaviors are not just related to what the kids eat, as opposed to what the GFCF boards say – “He ate a banana, now he’s laughing maniacally!”

    I believe your daughter can have amazing progress, but that won’t stop her from showing autistic behaviors throughout her development. It’s never a straight path, there will be ups and downs. Plus, stims and other atypical behaviors tend to come and go.

  13. IvarTJ November 20, 2010 at 14:46 #

    I am editing a Norwegian Wikipedia article related to GFCF, and suspect that this study deserves mention. It is unclear however how people may access any full report from the study. It doesn’t appear to be listed on Pubmed.

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