Can we talk GFCF?

Junebug060609 · July 2014

I'm intrigued by it and wondering if it might help DS. Am curious about others experiences. Is it worth revamping the way our family eats? If you tried it, did you see a change? How big and how soon?

I'm completely overwhelmed by it. What do you eat? Is there a list of ingredients to avoid? Gluten free stuff seems easier to find since it is a "thing" right now...but casein free???

kcisthebombdotcom · July 2014

It was pretty easy since I have eaten gluten free for 14 years and I always planned on limiting processed foods/avoiding food dyes and such with the kids. It can be challenging if you have a kiddo that's on the typical autism diet of Mac and cheese and chicken nuggets. Otherwise we stick to lots of fruits and veggies and use eggs, bean and PB for protein. I also supplement with a good multivitamin as well.

Junebug060609 · July 2014

Mac & cheese and chicken nuggets are some of DSs favorites... but he's not restrictive with it. Basically he will eat most things, but he'll come running for those. He is great with fruits and passable with veggies (especially peas).

What multivitamin? DS won't take the ones I've offered.

kcisthebombdotcom · July 2014

We do vitaspectrum. It's a powder one so we just sneak it in a morning smoothie,

Junebug060609 · July 2014

Have you found it worth it to drop casein as well? (Since you were already gluten free)

Junebug060609 · July 2014

kcisthebombdotcom said:
We do vitaspectrum. It's a powder one so we just sneak it in a morning smoothie,

Thank you! A powder I can slip into things is exactly what I wanted! He rejects gummies. Licks them and then spits them out.

Junebug060609 · July 2014

-auntie- said:

I have never done the GFCF diet.

I have talked with lots, and lots of people who have tried it.

Over 14+ years of convos and fora, I've come away with these totally anecdotal observations-

About 10-15% of the parents who do a 100% effort at GFCF do report improvement.
What kinds of improvement and how quickly?

IME, the kids who seem to improve tend to be the very ones who live on a "white diet", or who have a lot of very challenging and aggressive behavior. It seems less effective for kids with an Aspergers type presentation than for those with speech and adaptive delays.
DS is a pretty white diet kinda kid. He's not restrictive, but he favors those items heavily. He's not terribly challenging/aggressive, but he does have significant speech and global delays.

It seems that the diet must be followed exactly to get a benefit, you can't just cut down.
I know. This is what intimidates me about it the most. That and there being no 'cheat days' and the fact that to make it really work our whole family would have to do it (wouldn't be fair to be eating foods he loves in front of him if he can't have it).

I don't know anyone who ceased their services and relied on diet alone, so it's really hard to attribute progress to diet exclusively. I have one friend who participated in a university study on GFCF almost 15 years ago- they ceased the study because they weren't seeing any improvements 6 months out.
I have zero intention of dropping his other services and putting him on this diet. I'm looking at it more as another thing we can do to potentially help him out. Basically something in addition to therapy rather than instead of it.

The diet is a whole lot easier from a younger age. Once they're in school, at friends' houses and doing activities, it's harder to police and can be limiting socially.
He's 2, but I was thinking about those prospects. Things like us going out to eat or ordering pizza, etc. Even what he'd eat at daycare for lunch.

If you're cooking from scratch it isn't a huge deal, though you do have to read labels. There are junk food dupes available these days, but they're expensive and probably not the best options anyway.

kcisthebombdotcom · July 2014

Junebug060609 said:

Have you found it worth it to drop casein as well? (Since you were already gluten free)

We are but we didn't see the kinds of improvement we saw with gf. I'd probably do both separately to see which one actually helps. No sense in making life harder than it has to be,Kwim?

MaxandRuby · July 2014

I eat GF because I have to (I have Celiac disease). I am not GFCF. I only know of 1 person where removing gluten drastically affected their child's behavior. They also have Celiac that runs in that family though but the mom told me that she could always tell when her son had gluten because he got aggressive and just generally his behaviors were worse.

I cannot comment on how it affects a child with Autism because I am not dealing with that. As for what you can eat, well, you can still eat a lot. GF, at least, is easy if you think meat, fruits, and veggies. Just substitute GF pasta, pizza dough, cookies, crackers, etc. Going GF (and I will assume GFCF) will have the same troubles as trying any new food. You'll find stuff you like and you will find stuff that is gross. I have my favorites BUT I don't know if my favorites are also CF because I do not have to watch that.

If you do try this diet, realize that it will more then likely take a few weeks before you see any differences.

Can we talk GFCF?

Re: Can we talk GFCF?

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