GFCF diet and PDD-NOS....

[LeifnMe]

So I just wanted to see what other peoples experiences with the Gluten Free Casein Free diet have been.  DS is 6 and recently got dx PDD-NOS, ADHD, Disruptive Behavior Disorder.  My daughter was born the end of March and I kept telling myself that as soon as she was born we were going GF. I'm not really sure why, looking back it may have just been that mothers intuition.  I was aware of try GF diets to help with behavior.  So after mentioning to a few friends my intentions to go GF, when she arrived the friend arranging our meals had everyone bring us GF for!  Well I wasn't really mentally THERE yet but since people started bringing us GF food I forced my self to go with it and made the switch.  So by 4wks postpartum the whole family was doing GF. 

After a few weeks we were also noticing DS behavior beginning to improve.  This was confirmed by the teachers at his school who weren't really aware of the diet changes.  So now here we are 6mos into the GFCF diet and DS and DD are both doing much better.  We are still working on LOTS of things (DD is getting early intervention services), but I feel like GFCF has made such a tremendous difference.  We went through a really rough patch where my son was 99% GFCF but would get exposed at school unintentionally through the playdough, soap, snack table.  Each time his behavior would fall apart and he would get all floppy and fussy; unable to listen to any direction at all: super spacey again no eye contact, and have intense rages, etc.  It would last 24-72hrs and then as long as he wasn't exposed again would "wake up" again and he was our sweet little guy.  

So after all that.... my question is if all this (or any of it) is at all consistent with other peoples experience with the GFCF diet and getting exposed once you've been on the diet strictly for some time? 

Sorry so long winded.... :/

[QueenOfTheMeadow]

All my kids, neurotypical and on the spectrum tested sensitive to gluten, dairy, and eggs! So they are on a GFCF and egg free diet. We notice a difference in behavior with ds1, on the spectrum. And we notice a difference in stomach issues and excema with the other 2 monkies! So we've definintely found it helpful.

[Piglet68]

We've been experimenting with GFCF all summer since DS's behaviour (ASD) mysteriously took a turn for the worse this past Spring. After a while on the diet we seemed to notice an improvement in his behaviour, less raging for example, and friends who hadn't seen him for a while commented on how much more interactive he was with them and their kids. He would occasionally have some gluten and/or dairy but we didn't notice anything getting worse, so we would "cheat" every now and then. The hardest part is that I have to make everything from scratch, and there are days when it would be nice to just treat my kids to a pre-made pizza or hit the drive-through, kwim? The GF baked goods I've bought are largely disgusting and the kids hate them, but DS likes the buns I make from scratch with rice and tapioca flour, but since both kids basically live on sandwiches for the most part I'm baking every other day. 

Then over October we fell off the wagon completely and at first nothing seemed to change and we thought well, his behaviour got bad for no apparent reason so perhaps he's just moving out of that stage and it has nothing to do with diet. But just as we said that we weren't going to bother doing the diet anymore, he started going downhill. He is getting frustrated a lot, swearing like a trucker, and just generally being more difficult. So as of yesterday he is back on the diet, however I'm just doing GF right now and I'll add in the dairy later as I'm curious to see if he really needs to be both. Son has such limited tastes as it is, and without dairy he was missing a good source of nutrition (we have access to raw milk, and both kids eat a lot of organic cheese). I'm hoping we can resolve the issue with just GF but if we don't see improvements in a month I'll cut out the dairy too. 

[peetie]

My son, who just turned 8, has been on the GFCF diet for over 3 years.  He received a Sensory Processing Disorder and Dyspraxia diagnosis just as he was turning 5.  He craved dairy like a lunatic, it's all he wanted to eat.  He saw an occupational therapist for two years.  During this time my husband and I observed some improvement but his behavior issues continued to disintegrate. He was either raging or somewhere in outer space.  I finally clued into the gut/brain connection and jumped in head first with the GFCF diet.  Two days later we had a different kid.  He could make and maintain eye contact, his rages decreased in intensity and frequency, he stopped chewing on everything in sight, stopped teeth gritting and growling, etc... DRAMATIC DIFFERENCE.  When he does mistakenly get one the offending foods the poor guy rages for 2 days.  We've never looked back and as we continued on this path we came to discover other exacerbating foods: soy, eggs, corn, yeast. Fortunately I enjoy cooking and have got the hang of this whole restricted diet thing down but it certainly has its challenges.  I miss not having a pizza night every once in a while - that is one thing I have not mastered, a decent GFCF pizza recipe!  

I'm happy to recommend any cookbooks & recipe blogs for anyone new to the diet.