should we quit the GFCFSF diet? Well I am just going to let you know what happened in our son's case.  He was 15 months old when we suspected he had asd and at 16 months we started him on the diet.  It was pretty easy because he liked a handful of things that were basically replacements of the handful of normal things he would eat (eg. pancakes, chicken nuggets, french fries).  He was on it for 7 months and it was very drastic the changes we saw in him in the beginning.  Now fast forward 8 months and he went through this phase were he would not eat ANYTHING!  This went on for about a week and then I just began offering him anything (gluten free or not) to eat to see if he would try ANYTHING!  Very rough and emotional time by the way.  So he little by little ate peanut butter and sandwiches and pizza.  I was so worried that he was going to regress and just kept praying that he would eat the things he use to eat but he would refuse them every time.  Well know I rotate his foods with gluten free and regular foods.  He has been eating so many different things lately, although it is still a challenge to have him first try them.  Well, very surprisingly we, nor his therapists, noticed a difference in him.  If anything he sort of made a jump in progress.  I am not sure why this happened because I very much remember him improving when we first introduced the diet.  His therapist did not even know for about 2 months that I had taken him off the diet.  They were shocked that they did not notice a difference in him as were we.  Right now we are dealing with his teachers and therapists thinking that he does not have ASD and that he just has a language problem.  I am not convinced of this yet though because I remember the signs all being there earlier.  But he does not hand flap anymore or walk on his tip toes.  He does not line things up anymore and he always turns if his name is called unless he just doesn't want to but it is obvious that that is why.  He basically has no problem with eye contact anymore.  And he use to do these things all the time.  The only thing that is very apparent is that he still does not talk.  But he is understanding a lot more and I can not even say it is things he learns in therapy because the things he is doing are just everyday things.  Anyway, sorry for the long rant but I just wanted to share what happened to us.  He is still young though so I am not sure what is going to happen.   We don't do the diet, and my son has seen gains just from supplements. My son never had any gastro issues unlike other asd kids, so we went cheaper routes first.   I think unless you can say that diet causes all forms of autism, then it's not going to cure all forms either.  But I'm not going to argue with people who have had results either. I think 18 months is a good run. It's true that there isn't any scientific evidence right now for the effectiveness of the diet. However, it is also true that some children respond very well to the diet, despite the lack of a study that validates this. This is why your Dev. Ped. is recommending the diet in light of the elevated IGGs. One theory is that by reducing foods that cause immune responses and inflammation (as evidenced by the IGG levels) your child's overall level of inflammation in his body and brain will decrease, and this will allow your child's brain to begin to heal and make new connections. The idea is that there is brain inflammation that is disrupting his ability to make connections in the brain, and the diet just supports reducing inflammation. There is also a theory out there that casein and gluten can damage the gut because the foods aren't digested correctly, which creates byproducts that affect the brain. This is a parallel theory for the diet, and it is usually something that doctors suspect happens along with yeast overgrowth. If your child had a problem like this then you would also probably see a lot of diahrrea or constipation and a lot of picky eating. Did you child ever have GI problems? Did they get better or worse with the diet? As Bon Bon very rightfully points out, there is much, much, more to healing the child's brain than just the diet. It almost never succeeds alone. Therapy is one way to support new brain connections. Your child's brain heals by being exposed to therapy and new learning experiences. So, school and therapy will continue to be important for your son. But, a really comprehensive approach to supporting new brain development means finding the right supplements in addition to therapy and diets that reduce inflammation. In my experience, the single most important supplement is fish oil. There is very solid, mainstream, scientific evidence that omega-3 fatty acids heal and protect the growing brain and are necessary for all children. There is also scientific evidence for using amino acid supplements to support brain growth, and antioxidants like vitamin C and phytonutrients in juices like acai berry. There is mixed but positive scientific evidence for using magnesium and B6 supplements, and B12 supplements to help support new nerve growth. It was my experience that the real driver for recovery in my child was supplements targeted to her brain. The supplements allowed her therapy and special education to work very well for her, and she had a lot of major progress. The GFCF diet supported these things, in our case, but it wasn't the driver. Before giving up, you might consider supplements if you haven't already, and see if it helps. If you still don't see progress, then after 18 months, I can understand your desire to phase out of the diet, and I personally wouldn't disagree with that choice. I wouldn't do it all at once, though. If his antibodies are still high that means he is still sensitive to the foods? They why give them to him? Also, there is much more to healing an autistic mind than diet. Have you done any of the other recommended treatments? Did you check for peptides??? I feel this is a great indicator to see if a leaky gut is present.... My 7 yr old would love to eat pizza, bread, etc.. but it hurts his stomach for almost a month after a piece of cake... My 13 yr old is not a gut kid....I had him on multiple diets for 18 mo as well but with little improvement....he sis have clostridia (but we treated that with Sac B)... My 7 yr old is a total gut kid and has struggled to have formed stools.... If his body still needs the diet, I think it is still worth the effort!!!At the behest of a well-regarded developmental pediatrician in our area we've had our son on a gluten, casein and soy free for about 18 months now. We have not seen a magical increase in all that time. Still, we've had the IGG test done twice and the results have shown that his antibodies against all three are still elevated. In that time he's had some advances in language but he's still far from being verbal and we attribute those advances to regular speech therapy. He seems to only have gotten more hyper and less focused unless he's in a school environment. As for stereotypical behaviors such as hand flapping and the like, they seem to be triggered by external stimuli and not by whatever he's ingested. OTOH I must admit that he's stolen food from other people on occasion and seems to hate what we put in front of him. This has been an expensive undertaking and my wife and I are becoming polarized on whether or not to continue it. FWIW she's been great about baking special breads and treats and even buying GFCFSF food products but it's taken a toll since both our kids are such fussy eaters. I'm usually the one who feeds them during the week and have been frustrated as well at having to pick up/throw away discarded (and expensive and time-consuming) food. We went so far as to see an allergist who is also well-regarded by our other mainstream pediatrician and all the mental health workers who we've dealt with (for wraparound, speech, OT, etc.) and he told us he knew of no proven scientific research to support any benefits of such a diet. So now my wife and I are divided on whether to continue with it or not. We both agree that if there is to be a change it should be done gradually. I took my son back for a regularly-scheduled appointment with the pediatrician (my wife did not come so that she could care for our younger NT son) and told her our concerns. She told us to wait until after the next round of blood tests and then be cautious about reintroducing foods slowly. I don't know if things are going to be any better or worse, but FWIW I liked that I could closely monitor what he eats - even though he clearly still craves the regular stuff and notices the difference. What would you all do? Get a second opinion? See a dietician? I hate to give up but yeah if it's not having a drastic effect on his development and he wasn't having any overt allergic responses before then what's the use?
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