Gluten/Casein peptide test results

[kme]

My son recently had a gluten/casein peptide test done. It is a urine test that is supposed to show if there are abnormal levels of either peptide in the urine which (theoretically) could cause autistic/ADHD symptoms.


My son's results came back as being abnormally high with casomorphin (milk) peptides. The gliadorphin (gluten) result was normal.

I am trying to have an open mind, but I am still skeptical. I have tried to research this and found very little supporting its validity. However, I will say that we tried the GF/CF diet about a year and half ago and saw no difference with removing gluten and some positive changes with removing casein. He has been mostly casein free for quite a while. Lately I have been adding in some casein as he is getting older and complaining a lot about the diet. He still does not drink milk but occasionally has pizza or some baked goods that contain milk. I have seen more defiant and out of control behavior since adding it back in but I was hoping it was just coincidence. Now with this result I am thinking he really does have a problem digesting milk even though I am still skeptical about this test!

Has anyone else ever had this test done? Is there any scientific evidence to back it up?

Mostly I am just disappointed there is actually now a lab score SHOWING there is a problem with milk and this diet may need to continue indefinitely. My son has gotten very rebellious about it recently after a year of doing great.

How do you keep your kids on this diet for the long haul?

[provocativa]

Not much advice, we haven't had the test but my kids get much more defiant and crazy when we eat casein or gluten. Also, we didn't have good luck with the gluten free diet and my littlest, until we discovered that a vitamin she took every now and then had wheat germ extract in it. Even that tiny amount effected her- so it is possible that you missed something? Crumbs in the mayo jar would get us, too. Another thing about the test- gliadin is only one of many proteins in wheat.
I actually tell my oldest that it doesn't matter what other people say- I know that the stuff is poison and I love her too much to let her get poisoned. I love her enough to fight her not to eat it, and I will keep doing so. I told her that if other mommies had read what I read they wouldn't feed it to their kids either. She got it then.

[BookGoddess]

I know some here aren't fans of TACA, but their site has a wealth of information about the GFCF diet, how to implement it slowly, where to buy things, what to buy, etc.
http://gfcf-diet.talkaboutcuringautism.org/

Even Hans Asperger for whom Asperger Syndrome is named thought there was a link between celiac disease and Asperger Syndrome.

If you go to PubMed there are various studies about the gfcf diet and its effectiveness. Here are two...

Buie T, Campbell DB, Fuchs GJ 3rd et al. Evaluation, diagnosis, and treatment of gastrointestinal disorders in individuals with ASDs: a consensus report. Pediatrics125(Suppl. 1),S1–S18 (2010).
"A review by Buie et al. in Pediatrics reported that the prevalence of GI symptoms (constipation, diarrhea, bloating, belching, abdominal pain, reflux, vomiting and flatulence) in children with autism spectrum disorders (ASD) range widely from nine to 91% based on 11 studies that average 44%."

D’Eufemia P, Celli M, Finocchiaro R et al. Abnormal intestinal permeability in children with autism. Acta Paediatr.85(9),1076–1079 (1996). [CrossRef] [Medline] D’Eufemia et al. observed that 43% (nine out of 21) of children with ASD had altered intestinal permeability (leaky gut) compared with 0% of controls (zero out of 40)"
"