HELP GF/CF going insane | Autism PDD

Something else to also consider is yeast die off. Many children also have yeast. If you are doing the gf diet, you are removing a lot of carbs the child is consuming (unless you are replacing his exact consumption w/ an alternative carb) and yeast love to eat carbs. So maybe reducing the carbs is also causing the yeast to die off which can give off similar, if not worse, side effects than gfcf side effects.i completey agree with the gluten free part. it is so hard to find food for the whole family. my husband is going insane with just the talk of it. shopping is very very difficult. if you have any helpful hints, i would love them. i am trying to be enthustiastic about this... but feel as though i am failing! tomorrow is another day, right?

Man, this post is scaring me. so here's my question. we are going to a DAN dr next week. i have begun this slow process...but what is slow?? we are already completely dairy free. he has an allergy. so, do i give him a certain amount of carbs/gluten a day? how do i do this? i am really worried now about the behavior thing... why isn't that in books they publish??????

anyone... help??? (i really not desperate, just really nervous)

We have been gluten free for a little over a year now. My son has a form of Celiac Disease (DH) and my husband does too. We believe it also might help my oldest daughter's stomach problems. SO the whole family went g/f and all has been well. Nearly immediate we saw better focus, 0 stomach problems, and her energy is much more focused. We are now beginning a transition off of dairy. As all my kids love cheese I know this won't be easy for them, but it is necessary. Does anyone have any good ideas for replacing meals like pizza? It's our Friday night favorite. We make the crust from rice and then use home-made raw sauce and top with cheese. It's going to be hard to leave it behind.

Again, I'm open to any suggestions...

We make pizza bases from ready mix gluten free bread dough, I just spread it thinly on the pizza tray spray with a little oil and pre bake then put on the sauce and toppings I use theOrgran brand which I don't know if its available outside of Australia. Rice cakes and crispbreads made from corn are an easy replacement for bread if they dont lik the gluten free variety. At the beginning even though it is more $$$ it is easy to have a lot of premade products till you get the hang of baking bread, cake, biscuits/cookies yourself. You need to watch out with the soymilk as some brands contain gluten in the form of maltodextrin from wheat. Maltodextrin from corn is safe. Another thing my kids really liked were home made chicken nuggets. I cut up pieces of chicken breast dip in corn flour, egg, and crumbs made from gluten free cornflakes. I spray these with a little oil and bake in the oven for 10 minutes. Liz

I've used that same pizza crust. We all really liked it. My thoughts we just for the cheese though. Do your kids like pizza as much without the cheese? I guess if I put enough of their favorite toppings on it they will eat it. We'll just have to give it a go and see...

Thanks so much for the ideas!

It is on the gf/cf website. I never had access to books on the diet here in Australia when I started my kids on it. I never noticed a behavior getting worse when eliminating the gluten just the casein. With the casein free side I mixed soy and cows milk and gradually increased the soy. The rest of the casein foods I eliminated all at once. I didn't try gluten free for another year as I found this the hardest to adjust my cooking and shopping to. Liz

there is a cheese in the specialty grocery stores that is labled lactose free.... but.. and i say but, one of the ingrediants is lactose.. but its suppose to be such a small amount that persons who are sensitive are fine, but those who have a severe allergy are not. i wont' do it for my child, but maybe its an option for your family trying to save your pizza night. good luck to you. if you find a good cheese sub... let me know!

What about a nut cheese? I make nut milks all the time. I wonder what that would taste like?We pretty much went cold turkey. No problems for the first week or so...in fact more language, good signs. But the last few days I think we are finally seeing some withdrawal. My dd does have cold as well...not sure if that is effecting her. Past few days more tantrums, head butting, pulling her hair. I'm going to stick with it, because I know it can take several weeks to get the gluten out of her system. I'm hoping "withdrawals" will subside soon! I do know that the bad behavior is actually a good sign that there was a problem to begin with. Try to stick with it if you can. Hopefully these behaviors will start to decrease soon! I'll let you know how dd is doing in another week!edit...sorry I missed the part about improvements with taking him off! If it's better now, then wonderful! We're going to give it a while longer, as we have an appt. with a DAN Dr. in a few weeks, and he wants her GFCF for now. He is planning on running a lot of labs for intolerances, yeast etc.they make soy cheese!Also, yes--I have heard that some kids don't need GFCF, and go haywire
on it--not just an adjustment period. Trust your gut, to see what's right
for your kid. Push a little more, see if there's a light at the end of the
tunnel--or slowly introduce dairy OR wheat separately to see if he
improves. The diet helps SOME kids. Makes sense, since autism most
likely has multiple causes and presents so differently in many kids.

Keep on looking for things that work.

and yes, it's true--sometimes things have to get worse before they get
better. however, the few Moms i know who have tried the diet and stuck
to it. were mostly because they saw some early encouraging results
before the 'withdrawal'.

but, that is hardly a scientific study.

good luck.

I have never tried this diet or any other. HOwever, many people I personally know HAVE. Not a single one of them saw any improvement, even though some tried to be gf/cf for two years. I am not saying that NO ONE benefits, but you post said that your child is one of the FEW who do not benefit. I beg to differ. I have seen none who have and MANY who have not. Of course, every child's body chemistry is different. It certainly does not hurt to try a special diet as long as a child's nutritional needs are still being met. However, the proof is in the pudding. And your child is telling you that he needs a more normal diet. Do not feel like a failure. You tried it, it didn't work for your son, now move on. One thing that has scientific evidence that it DOES work is the implementation of a positive Behavior Intervention Plan (at home as well as at school) that addresses specific behaviors (ones you want to decrease or ones you want to increase) and is applied consistently. There are DECADES of proof that this approach works. Of course, nothing works for every issue with every child. But it is known that appropriate behavior plans work to change behavior in kids on the spectrum.

When behavior plans that have been used consistently for awhile don't work, especially if several things have been tried, the targeted behavior might not actually be in the child's consious control. In that case, if the behavior is negative enough (self-injurious or aggressive, for example), medication may be the answer. Risperdal is one medication that is specifically approved for use with kids with autism and it addresses both self-injury and aggressions, among other things. It is a potent med and I would ONLY recommend trying it under the supervision of a doctor who is specifically trained in autism. The reason it's approved for our kids is because it has a LONG track record of working.

[QUOTE=MamaKat]they make soy cheese![/QUOTE]

Yes, but the ones I've seen have gluten in them. Kind of defeats the purpose. If you know of one that doesn't, please let me know.

And thanks!

My experience with the diet has been a bit different. This may help:

I started first gluten free, since I am already out of it it was not hard. He got worse, and after lots of trial and error (and I mean LOTS), I discovered that I was replacing a lot of his food with GF brives that had artificial colors on them. Believe it or not sugar was NOT the problem, it was the additives. So I added the Feingold diet (friend suggested it). This diet is originally designed for ADHD but this association gives you like the whole list of brands that do not use artifical colors, flavors, BHA, BHT and TBHQ which is basically petroleum on the food (yikes I know) and I started it.

It took 6 weeks to see results but basically it was:

GF helped with eye contact, fine motor skills, speech and rational thinking.

Feingold helped with violent behavior, agression, nightmares, bed wetting, self stimming AND hand flapping!!!. Unvelievable but while on the diet my husband took him to a Mc. chain restaurant to have only french fries (GFCF by the way) and he started hand flapping again and kept it for 5 days. Also this diet suggsts removing salicilates for the first weeks and then reintroduce them one at a time, and I discovered that grapes triggger a lot of violent behaviors. Go figure!

As for casein free, I did not see a difference at all. I used goat cheese for pizza, it is expensive but delicious.

My son currently goes to regular ed 1st grade with LD support. YOu would not see his autism unless you know what to look for. Parents of non autistic kids won't notice it. Every now and then he misses a few social cues and you can stil see the low muscle tone. Now if he goes off the diet.... he'll show his autism.

Oh, one last thing. He only wears 100% cotton clothes and bed sheets. This seems to make a big difference in his sensory system.

Hope this helps

Withdraw gluten/casein from the diet SLOWLY.

You wouldn't take a heroin addict's drug away all at once, so you shouldn't do it with a child addicted to these proteins. Remove the products gradually and make sure to supplement the diet with the ODA of all nutrients, preferably liquid or sublingual forms for best absorption. Keeping the level of stress down to a minimum is a big help, too. Your child may want to sleep, feel restless, or have mood swings, so the best thing is to just go with the flow.

Hope that helps! It sounds like your child would actually be the perfect candidate for a gf/cf diet. Just expect and prepare for some stressful times and stay focused! It can take up to 1 year for full improvement and recovery to begin.