Anyone do a Casein/Gluten Free diet with DC?

[Bens Momma]

Considering trying this for DS who was recently diagnosed with Asperger Syndrome. We've been following Feingold for almost 4 years so I've seen the difference that food/ingredients can have on behavior. I've started doing a little reading and research on it but wanted opinions & advice from those that have BTDT. How hard is it? I'm more intimidated by eliminating casein than the gluten. Why did you do it? Did you see positive results?

Thanks for input!
Momma to 2 ACTIVE DS
and another Jumping Bean appearing before Halloween!

[mytwosons]

Yes, we tried GFCF diet shortly after DS1 was diagnosed with autism. It was daunting at first, but we quickly caught on to what was safe and what wasn't.

We started the diet in April and it wasn't until Aug that I was convinced we were seeing improvements. You really need to give it ample time to work.

Was it worth it? Definitely. We did other diet interventions, biomed and traditional therapies. DS is now recovered and doesn't meet the qualifications for any diagnosis.

[bostonsmama]

Big hugs as you deal with this new diagnosis. My DD and I are casein-free (because of her dairy and soy protein intolerance), although not gluten-free. Casein-free isn't as hard as you might think. There are a lot of great milk alternatives (rice milk, almond milk) and butter substitues (we're soy-free, so we do Earth Balance soyfree buttery spread). There are coconut yogurts and almond milk ice creams (although sadly, most have soy, so we can't have them). I really don't feel deprived (most of the time), it just takes a TON of forethought and planning. Try to approach it as a complete elimination, but don't beat yourself up if you accidentally eat a food that has casein (milk protein) in it. One of the surprising things is how "non-dairy" usually just means lactose-free, but casein is often an ingredient that makes it taste like milk...safe for those allergic to the sugar, not safe for those avoiding milk protein.

Most stores have a ton of gluten-free products that aren't so horrid...and you'll find that (perhaps since the diet for ASD came out) a lot of the casein-free convenience foods are also gluten-free as well. We do find we're eating a whole lot more WHOLE foods, which is great anyways. Good luck!

Just wanted to add that DD's pediatric gastroenterologist said it would take up to 3 weeks for any trace of dairy to fully get out of my system and stop affecting DD (through my milk, as she's not on solids yet), so it makes sense that it could take a few months to work out the kinks and see results.

[mytwosons]

There are coconut yogurts and almond milk ice creams (although sadly, most have soy, so we can't have them).

Just wanted to add that DD's pediatric gastroenterologist said it would take up to 3 weeks for any trace of dairy to fully get out of my system and stop affecting DD (through my milk, as she's not on solids yet), so it makes sense that it could take a few months to work out the kinks and see results.

Whole Foods carries hemp ice cream (GFCFSF) that my DH even eats; it's that good. There are coconut milk ice creams (GFCFSF) as well, but they do have a slight coconut flavor. Their chocolate flavor is sort of like having a mounds bar. A different brand has a fudgicle that somehow doesn't have the coconut flavor.

I don't remember how long it takes, but gluten takes even longer than dairy to get out of your system.

Daiya is a GFCFSF cheese substitute that my son enjoyed. Actually, it was the only one he would eat. Amy's frozen has a GFCFSF macaroni and cheese using Daiya that he will still ask for even though he can now eat dairy.

I almost hate to suggest it, but you also might want to remove soy. Many feel it also causes problems for ASD kids. A good DAN! dr could run some tests and give you some suggestions. We removed gluten and casein first, then later had to remove soy, eggs, corn, peanuts, and tree nuts. Thankfully, we now only avoid gluten, eggs and tree nuts.

[bostonsmama]

Thanks for the rec for hemp ice cream. I hated the coconut ice dream I bought (cookies and cream) b/c it was so...coconut-forward...and I love coconut by itself. All the other flavors of almond ice cream had soy OR were just plain vanilla (boring!), so I got what I got. A month later I still haven't killed the pint. LOL

I got the Daiya rice cheese (b/c Galaxy's rice cheese has casein in it) in mozarella flavor. I made pizza with it and it was GROSS! I melted it in the microwave and added it to salsa and it was passable as a dip w/ chips. It melts more like american cheese slices (gooey/slimy) than crusty, yummy hard cheeses (like cheddar or mozarella). I'm yet to try the cheddar flavor.

[firsttimemama]

Myself and DS are GFCF.
DS likes Daiya, I think it's disgusting. I basically just quit eating cheese except on the days I cheat (about 3x a month)
Recently discovered a coconut ice cream that is "mint choc chip" flavored, it's really good.. my fave so far, don't know the brand offhand.. could get it later.

[bisous]

We did it for 8 months! I'd love to say that it solved our problems but it did not. DS1 is 7 years old and about 1.5 years ago was being evaluated. He showed some symptoms that seemed a little "asperger-y" although it was later determined that even his lack of eye contact was due to quite severe ADHD.

We eliminated casein and gluten all at once. I found quite adequate substitutes for milk (rice), yogurt (coconut), and ice cream (I LOVE the coconut ice creams although I'm in the minority!) Cheese, well, we just pretty much did without!

Gluten was way hard. It doesn't SEEM like it could be that difficult but if you have a Typical American Diet, almost EVERY product you buy is contaminated with gluten. That's not to say that good products can't be found because they can and gluten free products seem to be a growing market. I wish I could remember the really awesome bread that we found because it was SO much better than the others on the market! Yes, it was $8 a loaf but WORTH IT!!

GFCF is doable and if it works for you, it can be worth it! It didn't work for us but we felt better for having given it a noble try!

[daisymommy]

My best friend has a son with severe Autism. She has seen an amazing difference in her son by having him on GF/CF diet (I've seen it too). It's been years now that they made the switch. Anytime he eats something with G/C in it by mistake, he really regresses for a day or two.

Thankfully there are so many great cookbooks, blogs, food options in the grocery store, and information out there now, it can really help make the transition easier.

I have an amazing video link on file somewhere (trying to dig it up) of a mom who's son is on the spectrum, and she did a video diary before and after going GF/CF. Such an amazing difference! I'll post it when I find it.

[snowbunnies300]

Did GFCF with DS1 and DS2 and saw no change. We discontinued the diet and have no plan to do it again.

[Tipi]

I was just diagnosed with a milk, wheat, egg and tomato allergy. I have no idea what I'm going to eat Even the "wheat free" spaghetti may contain wheat and the soy milk may contain milk and wheat. I am so bummed and confused.