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How Effective is a Gluten-free, Casein-free Diet for Children with Autism Spectrum Disorder? 04/11/2012 - Studies on the gluten-free and/or casein-free (GFCF) dietary intervention for children with autism spectrum disorders (ASDs) suggest that some children may positively respond to implementation of the dietary intervention.

Photo: Jefferson AdamsOther studies support the idea of using various factors, including gastrointestinal (GI) abnormalities and immune function to classify children diagnosed with ASDs

Medical researchers Christine M. Pennesi, and Laura Cousino recently examined the effectiveness of the gluten-free, casein-free diet for children diagnosed with autism spectrum disorder. They are affiliated with the Department of Biobehavioral Health at the Pennsylvania State University in Pennsylvania, USA.

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For their study, Pennesi and Cousino presented a 90-question online survey to parents or primary caregivers of children diagnosed with ASD. The survey asked about the efficacy of the GFCF diet. The survey included questions about the children's GI symptoms, food allergy diagnoses, and suspected food sensitivities, as well as the degree and length of their dietary regime. In all, they received 387 responses.

Parents who reported GI symptoms, food allergy diagnoses, and suspected food sensitivities also reported greater improvement in ASD behaviors, physiological symptoms, and social behaviors, compared with parents who reported symptoms, diagnoses, or sensitivities in their children (P < 0.05).

Parents who reported strict diet adherence, full gluten/casein elimination and infrequent diet errors during and outside of parental care, also reported improvement in ASD behaviors, physiological symptoms, and social behaviors, compared with parents who reported less strict adherence, incomplete gluten/casein elimination, and more frequent diet errors during and outside of parental care (P < 0.05).

The full report appears in Nutritional Neuroscience. There, the authors write that findings suggest that diet adherence and GI and immune factors may help to differentiate diet responders from diet non-responders. They also suggest that the findings support the importance of further investigations into the various factors that influence efficacy of treatment in children with ASDs.

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7 Responses:

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said this on
11 Apr 2012 11:12:13 AM PDT
Am I misunderstanding something here? It looks to me like they're trying to suggest the results of an online survey have some kind of scientific relevance?

An online survey? Really?!

The people who voluntarily filled out this survey will very likely be among the passionate parents desperate for results... parents who have for years willfully ignored the lack of scientific evidence to support the use of a GFCS diet for treating autism.

There's nothing "scientific" about such an online survey.

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said this on
16 Apr 2012 9:46:43 AM PDT
I did not fill out the survey but I can speak from experience. My son has mild aspergers. He was not diagnosed until age 17, however this has been a very long journey. He has been an extremely difficult child since about age 1. As parents we were told to be firmer with him, force him to sleep with drugs, and that we must be exaggerating his behavior problems. At age 11 we discovered that he had celiac disease after going on an allergen free diet. The difference in his behavior was a miracle. He still has some issues but they are night and day. Whenever he eats gluten the behaviors come back. He can actually describe the sensations to me now that he is 17 and much more aware of his body. Trust me he is 6'4" tall and pure muscle and eating 4000 calories a day. Feeding him a gluten free diet is very expensive and I wouldn't be doing it if it didn't help.

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said this on
16 Apr 2012 6:32:09 PM PDT
May I ask, Laura, how did you get your son to change his diet? Our son is 13 and is very phobic when it comes to foods. We encourage him all the time to try new foods (same foods encouraged several times) and he simply will not budge. Just trying to get him to try one bite of a new food has begun WWIII in our house. Have any suggestions?

Son's dxs:

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said this on
16 Apr 2012 6:57:39 PM PDT
Yeah I know. My son is in his 30's now. I have celiac and now I know he has it. I had a hell of a time with him since he was a baby. He cried all the time and I mean all the time.

If I had known this things would be different today. We both had these issues with this and did not know it. Now his life is a mess and he is still eating gluten. He has no money for nothing now as he don't have a job.

I think it is sad. I still get sick. He still eats gluten and does not stop as he can't afford an other foods.

Sad If I had known it could have been different for him at least.

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said this on
19 Apr 2012 9:25:53 AM PDT
My son is 24 and was diagnosed with aspergers at 15. He is also deaf. He has always had stomach issues and now I am wondering if this isn't the reason. His behaviors are worse some days than others. Can this diet help to change behaviors after all of this time?

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said this on
19 Apr 2012 7:29:00 AM PDT
This article is very subjective. Parents of kids with PDD may perceive all kinds of changes when they try different treatments that can be caused by many factors. I work with a physician who did a small study (randomized controlled trial) on the GFD in kids with autism and found no change in behavior. In these situations, randomized controlled trials are what is needed to show if the GFD truly has benefit for these patients.

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said this on
19 Apr 2012 7:36:00 AM PDT
We too have had very positive results by using the GF diet for our son now 17 with an ASD. The positive results were so pronounced that they were noticed by teachers, family and friends. Anyone that has seen the difference in him is a believer. I find it sad when one feels we have to wait for science to give us the assurance to pursue something that is so harmless and may have such a strong impact.

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Your daughter could have non celiac gluten sensitivity. That would correspond to negative celiac tests coupled with positive reaction to the gluten free diet. Whilst there are similarities to celiac presentation it appears that neuro symptoms are more common in ncgs patients. That seems to be the case for me anyway! The condition is as yet poorly understood but there is progress being made, check out a topic I just started on the pre diagnosis thread with some info and links. The remarks by umberto Volta in particular are just about the best summation I've yet seen on where the research is at. I will post a link later.

The gi may be able to see some signs of celiac visually but the chances are you will have to wait a couple of weeks for the biopsies before there's any confirmation. The damage to the villi is too small to detect with naked eye I think. as long as your eating some gluten each day you will have done all you can for a diagnosis. Not long now so go ahead and treat yourself to a nice cheesecake, fish and chips etc.

check out CoQ10, not related to celiac (as far as I know) but for balance issues.

remind your hubby, "if mama ain't happy, ain't nobody gonna be happy."

Thank you for all your help with this. I was also wondering if I could ask and hope you don't mind, will they be able to tell Celiac on the camera or will it be down to the biopsies they take? My endoscopy is on the 9th, and I am worried about not having enough gluten to show.