GFCF Diet

[confustication]

We heard from one of the evaluators briefly today, and she suggested that it might be good to move to a GFCF diet to see if it helped with either my oldest or out middle child (in the midst of diagnosis). So, I'm looking to hear from people who have tried it, and whether or not you've had any changes in behavior- particularly in ASD kids.

[BookGoddess]

We have tried the GFCF diet. We've also done allergy testing and eliminated foods that DD reacted to. I think in doing this, DD feels better and when a child feels better their ability to play, learn, behave is so much better.

You might want to read Special Needs Kids Eat Right or Healing The New Childhood Epidemics if you want more information on other dietary changes because GFCF isn't the only diet that helps children. Some children do better on other diets besides the GFCF diet.

[2boyzmama]

Ian is gluten free, but not casein free. He is not ASD, but was looking ADD/ADHDish and was having a lot of sensory issues. Those are nearly completely gone since cutting the gluten, although we've had some other symptoms pop up (highly emotional now, but not in an anger/tantrum way like before, instead it's like he's close to tears for the littles thing; and also some curious peeing issues that have me uneasy...every once in a while he will suddenly have to pee 3-5 times in an hour, and he'll pee a lot each time. It's infrequent, but every time it happens it catches my attention)

We are definitely GF to stay with him!!

Connor is dairy free for the most part (very small amounts of cooked dairy are okay for him, and most "hidden" dairy is okay) but not for behavioral reasons, his reactions are all GI in nature (diarrhea and reflux).

[lotusdebi]

We went casein-free over the weekend. DS1 has been more patient, not as easily frustrated, more focused, less violent, less hyperactive and sensory-seeking, and less defiant. He is playing so much more cooperatively with his brother. This entire week has gone so smoothly! I want to try gluten-free next to see if his attention improves even more. He has high-functioning autism, sensory processing disorder, and probably ADHD.

[karika]

We are GFCFSF and I was trying corn free too, but lately we have added garden of eatin corn chips and organic popcorn (popped from kernels, on the stove) back in. I would highly recommend going soy free too (which isn't easy, soy lecithin is in many packaged foods, as is vitamin E (tocopherol). It acts on the brain the same way as casein. If you haven't seen this site it is a good one.

http://gfcf-diet.talkaboutcuringautism.org/index.htm

This is a web page that talks about products
http://gfcfdiet.com/NewpageDirectory6.htm

and this is a yahoo webgroup (it is very high volume, I select web only and read on the web when I have time)
http://health.groups.yahoo.com/group/GFCFKids/

This is a webgroup for recipes
http://health.groups.yahoo.com/group/GFCFrecipes/

When we are 100% dd1 has far less aggressiveness and mood swings. I screwed up and let her have something with soy (a tiny amount)in it the other day, and she behaved irrationally for the next two days, crying over small things. We have not had a dx however, I decided we would try this for philosophical reasons and behavioral issues.

[moss]

a resounding yes

the best thing we've ever done for our aspie son was to put him on the feingold program (not so much the salicylates, but he cant tolerate dyes and preservatives) and to do gf/cf/sf

he is a very very happy child now. some of the literature talks about 'happy child syndrome' in relation to the gfcf diet and it is absolutely correct for us.

i remember back when he was very young and we didnt do any dietary treatments~~life was very difficult for everybody back then. ds was extremely oppositional and his sensory issues were magnified x100. he was angry and upset almost all the time, then. now he's so happy; it's like dr. jekyll and mr hyde when i compare how he was before and after.

he still has his moments (who doesnt! LOL) but it is so much easier for him now than it was before the diet.

you're lucky to have an evaluator who endorses gfcf. ds's ped basically said that he couldnt recommend the diet but 'we were free to try it if we wanted to' when we asked him about it

i remember at first being totally confused about what i could actually feed my kiddo because his entire diet seemed to revolve around dairy and wheat, but as the diet progressed, his repertoire of foods that he enjoys expanded immensely. now some of his fave foods are octopus (really! lol, and this was a kid who couldnt eat certain types of noodles because they 'wiggled too much in his mouth!'), broccoli, pecans, celery, red peppers, cuke, chickpeas, beans, etc...

[damona]

ok, i can give you both a yes and a no on this one. to explain:

my 7 and 8yo ds' are both on the spectrum. both dx'd PDD-NOS. both also dx'd ADHD. we'll be taking my 8yo in for a new evaluation soon, and i am pretty sure that he will be dx'd aspergers this time.

when the boys were first dx'd, my older one was just about 4. the younger, just over 2. we did therapy in home, in group, dr's, all kinds of stuff that you try when you first start to handle something like this.

then i heard about the diet. and i figured, what the hey, it sounds like nonsense to me, but i'll give it a shot. we dropped gluten, first. my older son, it made no difference. but my younger one... in just a couple weeks, he was making eye contact, easing up on his stimming behaviors, and starting to talk more.

so we dropped dairy. even bigger difference. still nothing for my older son, but my younger one was so much more "there" it was amazing. most of his gut issues stopped, he started using both sign and words... it was far more than i ever expected.

eventually, i started easing a little dairy back in, but he can't handle cows milk at all. i can use goats milk for baking, that doesn't seem to make him sick, but the tiniest bit of cows milk or gluten in any form makes him sick. big dark circles under his eyes, gut troubles, more stimming... it makes such a huge difference for him.

so, what i'm saying, i guess, is that in my personal experience, for the kids it helps, it HELPS, and for those it doesn't, it just doesn't.

also, you have to give it a month or 2 to really work all the stuff out of their system.

if you have any questions, feel free to ask here or pm me, i'm happy to help if i can


eta: i just read this over and realized how tired i must be. i had to correct a bunch of things and i'm still not sure it totally makes sense

[heatherdeg]

Originally Posted by damona

so, what i'm saying, i guess, is that in my personal experience, for the kids it helps, it HELPS, and for those it doesn't, it just doesn't.

For our son... removing different irritants did different things. We removed dairy and he actually made eye contact AND laid his head on my shoulder for the first time ever within a week. We removed gluten and the constipation he was about to get inpatient treatment for disappeared. At our neuro's request, we removed soy and corn and the behaviors changed dramatically. We're about to try Feingold for suspected ADHD. Since he obviously reacts to foods, we feel like it's worth a shot.

My kid lived in a bubble where he was more engaged and aware of the dogs than his parents. I can't say enough about at least giving it 100% for 8 weeks. If it works, it's wonderful. If it doesn't, you can at least say that you did it, were faithful about it and you KNOW it didn't work.

[confustication]

We've decided to start out with GFCF for the whole family. Since I know it's going to be a shift- I'm doing it when we go grocery shopping this week. The day before we go, I'm clearing out the fridge/pantry so that only gfcf food remains, and that's all that we'll bring in. I know that if it's here we won't succeed. If it doesn't do anything at all for anyone, that's ok, but I really feel like it's worth a try- if only so I can say I tried...

[damona]

i would suggest that you leave bread and cheese and other "typically" gluten and casein items off the list for awhile. the substitutes are fairly strange if you go straight to them from the regular stuff.

tinkyada brown rice pasta is the best sub for wheat pasta that i have found. i think it's better than the "real thing".

other than that, i would suggest doing a lot of fresh fruit and veggies. corn tortilla chips and salsa or bean dip for snacks. i don't know if you are veg or not, but plain meat is naturally gfcf. there are lots of things you can do to fancy stuff up, once you get used to what you can and can't have on the diet.

there are a lot of pre-made, prepared meals, but honestly, it's just as easy and cheaper to cook simple meals from scratch. anything pre-made, make sure you read the label carefully. i still get caught at times when a company changes a recipe all of a sudden.

remember to check sauces and other stuff for hidden gluten or dairy. bragg's amino acids is a great sub for soy sauce. thai kitchen is a good brand, lots of sauces and rice noodles and stuff.

i have a ton of recipes and ideas, for all kinds of stuff that i have worked out over the years. we've been doing this for... wow... almost 6 years now.

http://gfcf-diet.talkaboutcuringautism.org/index.htm is a good place to get ideas and find out about other things that contain gluten. stickers, glue, sunscreen... it lurks. if you are going to be strict about it, you have to find out about the non-food stuff, too.

i do NOT mean to discourage you AT ALL. i simply want to help you avoid some of the pitfalls that i have encountered along the way!

as always, feel free to pm me, or just ask here

[confustication]

We have a decent whole foods store, so I'm going to get some staples there- we cook from scratch most of the time, so that won't be too frightening a shift- I think the kids and I will do fine. My husband, however, is going to be difficult. He's a junk food/prepared food addict. I don't see it working though if we don't make an effort as a family to do it, because I know that the kids will not tolerate seeing him eat the 'good' stuff while they have to adjust.

Thanks so much for all the advice- I'm going to need it!

[APToddlerMama]

So I'm late to this conversation, but wanted to say that GFCF, plus some food allergy foods and also yeast free, gave us HUUUUUUGE changes (and I was a total non-believer before we tried it...a desperate non-believer, but still). With dairy, it was really immediate in that mood shifted dramatically and hitting/aggressive behaviors decreased dramatically. Eye contact also improved. But.... when subbing foods, we added something that was a problem, so we didn't see all the changes for a few months when we finally figured out what we had subbed in that was a problem. I have heard a variety of things about how long you have to be GF to actually see the full effects, and the longest I've heard is 12 months, so we were planning to try for that long. Luckily, we saw the changes really as soon as we finally had everything "bad" out, but it just so happened gluten had already been out for 3 or 4 months already. The longer you do it, the easier it is to find things to cook for your family. We are still working on adding new things all the time, but my son did surprisingly well with the changes and is actually a much less picky eater now that he has been GFCF for a while. Good luck.

[TzippityDoulah]

all of my kids are gf/cf except for my daughter who eats occasional raw goats chees eo milk in moderation.

our world has changed for the better since they all went gf/cf. it totally worked for us. it didn't cure everything, but it helps signifigantly with digestive problems, sleep problems, ear problems and so forth and it also helped with behaviour b/c of that. My youngest however is only midly imporved from the diet. he had HORRIBLE screaming sobbing and fussing before the diet and he's surely improved so I wouldn't go back... but there is clearly more to what ails him. we're trying THREELAC soon to give that a go. we have always done the elimination diet for ever and it's not helped a whole lot.

I say it's hard for sure... at first. but after time it's nothing. it just common place every day stuff. you give it no extra thought. But really? it's worth a shot. b/c if it works it's awesome! and if it doesn't... you can just go back

[ericswifey27]

J. has been limited gluten for about 6 months. He has been gluten free for about 1 month. We have seen definite changes in the past month:

The respite worker for an autism meeting took the time to seek me out afterwards to tell me how calm J was at the meeting. She did not know about the diet change.

My friend said, wow, that is the first time J has looked at me and made eye contact with me. (We met at a grocery store). We made it through shopping without any melt downs! Afterwords he sat in the car for 10 minutes or so and quietly ate an apple while my friend and I chatted. UNHEARD OF!! .

J. had an infraction. Within minutes he was tantruming and we had to leave the coffee shop, me carrying my 6 1/2 yr. old, swiping and kicking out the door because he refused to walk.

J. had an infraction at school. He tried to bite several kids and missed recess as a result.

When we got home he was difficult the rest of the day, oppositional, lots of verbal tics, his homework was a gigantic battle, his writing was dark and gloomy, he was writing and rewriting over his letters, scratching through the paper.

He slept poorly and went to school complaining of being tired.

I was called half-way through the day to pick him up early. He refused favorite activities in favor of sleeping at school. He would not eat lunch.

(There are other similar infraction stories)

That is just gluten (and partially yeast). We want to do casein and soy next.

[heatherdeg]

Originally Posted by APToddlerMama

But.... when subbing foods, we added something that was a problem, so we didn't see all the changes for a few months when we finally figured out what we had subbed in that was a problem.

I just wanted to echo this. Especially because a few years ago a gastro told us that 80-85% of kids that react to dairy ALSO react to soy (and therefore she advised us not to give either to our highly allergic foster daughter). Soy is a really common "replacement" for dairy--so that one is a biggie.

But your child could react to anything. G&C are just very common.