GCFC diets...I know, I'm opening up a can of worms...

pierogi25

Hi ladies,

Aaaaaand, while I am simultaneously picking your brains about DAN drs...tell me YOUR experiences with GFCF diets. 

I know what works for one child might not work for another...and to research the background...but I'm just curious as to how YOU handled it, more than how your child reacted to it - there's plenty of info out there on the potential positives and negatives that a GCFC diet has on ASD. What I want to know is how did YOU, as a parent, do it?

 Is it expensive? Is it like eating sand? I don't know much about GFCF...and I'd like to hear real life parent experiences on how you handled a household and GFCF. Did EVERYONE in your house follow the same diet?

Auntie, I read the link you posted from IAN - thatw as really helpful - thank you for doing that!

There are so many alternative treatments for asd...I know finding a combination of what works is like finding a needle in a haystack, a perfect storm, a trial and error for the rest of our lives. And, truth be told, I fluctuate between wanting to "cure" asd and wanting to "accept" asd, and I feel like that fluctuation will be what I deal with forever. My original, and what I will continue to do, M.O. is to do my best on the education therapies - helping DD navigate the world as an ASD toddler, and eventually, kid, learning strategies and coping skills. But, as my nerdy librarian self, I feel the need to research what's out there before ruling anything out.

So that being said - talk to me!

JenGK

We tried GF but not CF for a number of months, and then stopped when we didn't see any impacts.

When I cooked dinner, I would make it entirely GF (so GF pasta for everyone, no bread, etc.).  We still had some unsafe snacks around the house, but we hid them out of reach.  We def. had to get rid of all kid snacks with gluten because it was too much of a temptation for Z to pick out of Adam's bowl for goldfish.  And DH had to give up Pop Tarts at home b/c Z would pitch a fit if daddy was eating them and he couldn't.

I found it to be more expensive for processed food -- pasta was double the cost; pancake mixes/flours were much more expensive.  I did a lot of cooking at home for this -- making homemade chicken nuggets, etc. But I had to restock my pantry to do it.  It was really hard to eat out.  And I had to be sure to read labels for everything to find hidden wheat.

pierogi25

Thanks for responding girls...the more and more I read, the more and more I question if this is for us.  

DD isn't nonverbal, but she isn't completely devoid of communication - we've started pecs with her and so far, so good. She's not aggressive, she's not tantrum-y, but she does have eczema (as do I...in fact, I am scratching as I type ;-)) So, to me, it's very 50/50 right now. So much of alternative ASD treatments are like that to me - maaaaaybe they'll work, but there's a much higher chance they won't. 

DD's diet is pretty healthy to begin with - at least at home.  When she is at my parents' or in laws, she's not constantly eating junk, but she is eating more processed foods - my mom is a big proponent of 100-calorie packs,so she gets those for snacks a lot (I'm not a fan personally of them because of the chemicals added to MAKE them 100-cals, but I am a fan of portion control. Plus if DD is going to have a snack, I'd rather it be fruit or something like that. But she's not feeding her lard or deep fried butter coated with butter, so I can't complain). So my guess is that when she would spend whole days at my parents, eating these processed foods, her behavior might relfect that - and it hasn't. She's the same kid whether she has fruit or Lorna Doones all day long. So a little part of me says that a GFCF diet might not work.

Coupled that with the fact she is only on week 3 of preschool in an ABA school for ASD kids, I feel like our trials of GFCF would be clouded - maaaybe she is excelling because she is not eating gluten, maaaybe it's because of preschool, maaaybe it's because of both. Is that a risk worth taking? Maybe. But I wouldn't really learn anything.

 At the same time,Auntie, what you said about eating being tied to lots of social cues, that really stops to make me think. Our kids have so many more barriers to sociality then typical ones, I don't want to add another (granted, she's 3, she's not exactly driving off to the DairiBurger just yet - kudos for anyone who gets the SVH ref there). And SO much can change as her body chemistry changes while she grows up. Might not work now, might work in a few years, etc. 

I don't even know where I am going right now, to tell you the truth. I lost myself in all that!

I am overanalyzing. And rambling. But if there's one thing I do well, it's overanalysis! 

DandelionMom

2 of my DDs are gf (and used to be cf) because of celiac disease not asd so I can't speak to that but can tell you about the diet.

The diet does not have to be expensive but it is true that the replacement foods can be.  If you stick with meat, veggies, fruit, potatoes, corn, rice and other naturally gf foods, you don't need to spend a lot of money.  It also helps to bake your own bread (the only good one in stores is Udis and it is super spendy). 

My family is mostly gf and our grocery bill is pretty high because I splurge on a lot of pricey replacement foods and organics.  I think the food tastes fine, people often comment that the flourless chocolate cake recipe I found is the best cake they've ever had. 

As for the diet being a social issue, I haven't experienced anything like that.  My girls pack their own food or eat before going to events.  There are so many people with allergies or whatever that it hasn't been a big deal. 

If you decide to try the diet, ask about the better replacement foods before you spend on something that isn't very good. 

hopanka

We are doing the GFCF diet. My child was a slow responder at first, as in - I wasn't sure if he was improving due to school or due to diet or...who knows. Because it was never like night and day when it comes to pre- and post- diet start. However, I noticed that it worked when after a year, we relapsed and went back to dairy and good ol' bread. You could see him change within a few days.

So we went back on the diet.

DS has never had troubling behaviors or gut issues, so maybe that's why I didn't see a huge progress at first, but rather a slow and steady one.

The only time I saw a huge positive jump was in terms of socializing and that was right after we started B-12 injections. We did that for 9 months until he plateued and then DAN said we can stop for now.

Anyway, I understand that people may worry about the social stigma or whatever, but if you had a diabetic child or a child with celiac, would you really worry about that? It's all about how you explain it to your kid. Yours is very young still, so to her it could totally be a new "normal" within weeks. My son is so matter of fact about it now, that when his teacher offerred him something in class by mistake, he just told her: "No, Mrs. K__, that is not good for my tummy. I'll have one of mine."

B-days and other social events are fine as well. It becomes a routine. Again, just like a child with a peanut allergy wouldn't hide under a rock, they just make adjustments and still enjoy themselves at parties and with friends. DS knows that we bring our own treat or cupcake to a birthday party and that's the way it is.

 

 

houndbaby

We follow at GFCF (and soy free) diet as a family. We do it because my DH can't eat gluten, my DH is lactose intolerant, my dd is allergic to milk and soy (I BF so I can't eat either). We also now think my dd may have a gluten intolerance also. My ds also has an allergy to barley (gluten) as well. We all follow the same diet as it makes things easier and eliminates the need for label reading at home. At home my ds eats a GFCF and soy free diet. When he is at preschool he is allowed to eat what the other kids eat as long as there is no barley in it. I don't know if the GFCF makes a huge difference, we haven't noticed a change since he eats some at school.

Is it expensive? Well that depends, if you are buying pre-made  bread, cookies, etc. hell yes it's expensive. Is it like eating sand? I think a lot of the things made from the box mixes (cakes, cookies) are quite sand like and gross. I make everything from scratch, and no one has ever been able to tell that my baked goods are GFCF because they are actually really good

pierogi25

Thanks, everyone, for your thoughts on the GFCF thing. I definitely can see how the replacement foods are more pricy. I love to cook and bake, so I don't mind making my own things...so in that sense, GFCF might work for us.

DH and I are still discussing, but I am leaning towards trying it. I mean, what have we got to lose right? Thanks everyone for your insights :-) I love that i have a place to come to like this and get all these different viewpoints all at once.