* Tuesday Weigh-in: 224.0 *
For more than six months now, various people have been urging us to try a gluten free, casein free (GFCF) diet with BamBam. Quite frankly, this was the last thing I wanted to hear. Gluten is a protein found in wheat, rye, and barley; casein is a protein found in dairy. At the time, BamBam’s diet pretty much consisted of graham crackers, milk, chicken nuggets, pancakes, pop tarts, and pizza. Some of you might say the same thing I would have said in my pre-BamBam years: Stop offering him those things and, when he gets hungry enough, he’ll eat the good things you offer in their stead. That may well be true. I wouldn’t know. I’ve never made it past the hours of screaming, flailing, biting tantrums that precede the elusive “hungry enough” stage.
I’m a researcher at heart, so I dove into the Internet to see what the studies say. Near as I could tell, they say that the results are unclear. The nutrition talk I attended at the UW Autism Center last month said the same thing, by the way. The GFCF community basically says to ignore that and put your kid on the diet anyway because the people it didn’t work for weren’t following the diet correctly. My response to any sort of zealous attitude like that is to stick my fingers in my ears, sing at the top of my lungs, and dig my heels in. Yes, I really am just that mature. Seriously, though, with anything there are going to be people who don’t respond and you have to be prepared to accept that. I was sure that BamBam fell into that category.
I read that the gluten free part of the diet can take up to six months before you see any results, while the casein free diet only takes about seven days. No brainer, you start with the casein diet. I also read that, if the casein diet shows results, you should definitely try the gluten free diet because the proteins are so closely related. My math-inclined brain said, “Oh! so if the casein free diet shows no results, we don’t need to try the gluten free diet!” I know, I know, that’s a logical fallacy, but I really didn’t want to go gluten free.
So, in January, we went dairy free for two weeks. I forgot and gave him pizza with cheese a few days in, so we started the clock over and went an extra week. No noticeable change in his behavior. In fact, the only observable results were that BamBam hates almond milk so much that he wouldn’t go back to drinking regular milk once we tried to reintroduce it. So now he’s on a calcium supplement and his diet is the same as stated above minus the milk. Anyway. Yay! we were in the clear and I could tell people we’d tried it.
Except that I found out there was a way to test for sensitivity to both and for the gene that causes sensitivity to gluten. Did I mention my background in genetic counseling? We had to do the test. I sent off for the kit, collected stool and saliva samples from BamBam, and sent them off completely confident that they would come back negative for all and I’d be done with it.
Except they didn’t. I got the results last week. They said that he has the gene and the sensitivity to both gluten and casein.
So…I guess we’re going on the GFCF diet. I’ve bought books and I’m figuring out how to implement* it. Because what I really needed at this stage in the game was another thing to add to the schedule. Not just another thing, but a complete overhaul of the way we eat. Because, as should be obvious to you by now, it’s not like I already had a hang up with food or anything!
Ahem. So, I’ll let you know how we’re coming along with all of that in the months to come. Right now I’ll leave you with an exchange I had with my therapist as I was walking out of her office last week. She had just made an observation about me choosing to live my life in an authentic way.
Me: I’m going to have to go home and think about that because it sounds like you might have just said something really good about me and I’m not comfortable with that.
Therapist: You know, I really enjoy working with you.
Me: Does that mean you think I’m funny?
Therapist: Well, yes. But it also means that I [get what you’re going through] and I admire the way you’re dealing with it.
Me: Uhm, thank you. Did you catch that? You complimented me and I just thanked you without arguing.
Therapist: I spotted that, too. Great job.
Me: Thank you. Look, I did it again. I’m really growing.
Therapist: You look taller.
I can’t tell you how much that exchange improved my week.
*If you’re on the diet or have suggestions, with the exception of book titles, please don’t give them to me at this stage. Wait until I ask for them. While I appreciate the intent behind them, I learn best by reading and doing things myself. I tend to get overwhelmed by outside input, and I’m already pretty overwhelmed. I appreciate any encouragement you can offer, though. 🙂
lol Good warning at the end, very wise! I’m vegan, so I’m technically casein free, and exposed to a lot of gluten-free stuff. Here’s what I hope is encouragement, not a suggestion: Any major diet change is harder at first because you’re doing all that research, reading every frikking label on the planet, thinking thinking planning planning, etc. BUT. Once you’ve bought all the new weird ingredients you need to stock your kitchen, once you know what processed foods you can buy, where to shop, IT GETS EASIER. A LOT easier.
Sending you lots of encouragement and hearty pats on the back! I hope it does help your childrenz!
As a mother who has stood where you are standing, londonmabel is right. It does get easier. I am happy to share any of our experiences, the products we like, or recipes if you ever want any. I completely understand the research/reading thing – history major = able to obsessively research, compile and assess data. PubMed and I are very close friends. And I, just like you stated, found that for every “Yay, GFCF!” study there is an equal and opposite “Meh, GFCF!” study. But I figured a three month trial wouldn’t hurt at the very least.
BamBam and Sweet Girl seem to have found the same menu. If you substitute mac n cheese for pop tarts then it’s pretty much identical. It was hard for her and hard for me. She even had some crazy withdrawal once we started the gluten elimination. That was two years ago and it’s not hard anymore. Actually it stopped being hard sooner than I thought it would.
The Kid-Friendly ADHD and Autism Cookbook and Getting Your Kid on a Gluten and Casein Free Diet books were my first cookbooks that had a lot of useful ideas. The Gluten Free Gourmet Bakes Bread cookbook is also awesome but not all the recipes are cf, so substitutions have to be made sometimes.
Good luck! And, seriously, I’m happy to share more if you ever want it. (I also promise I’m not a mean/pushy GFCF person. I know exactly what you were talking about when you mentioned that many on the diet are, ahem, strident. I’m a big believer in “every kid is different so we’re not all going to eat the same.”)
Thanks so much, Sarah! I’m sure I’ll be asking you for more info in a few months…
I’m really fascinated by the gfcf concept. i have kiddos in class who are either on the spectrum but not receiving any ot/pt or adhd who are unmedicated (which is fine if they were doing behavior modification in any way…). I wonder how many of the difficulties these kids experience could be mitigated by dietary change…I’ll be really interested to see how it turns out for you.
I am a fairly regular reader of your musings here but I rarely comment because I never feel like I have anything useful to say (which is generally true of me, but feels especially acute when reading your thoughtful posts).
Anyway, I just wanted you to know that you and Sparky are two of our favorite people on the planet and we have tremendous appreciation and respect for your stoicism, grace and good humor. We feel privileged to call you friends.
Y’know, so, for whatever it’s worth. There it is.
Back at ya (both).
And, just so you know, this comment was extremely useful to me. As most of both your comments are.
About the only thing I can offer you is encouragement. I agree with Philip in that you and Sparky exhibit stoicism, grace, and good humor. You have proven over and again that you can and will do anything to help your little people. Overload is your state of being these days, yet you continue.
This too will pass…easy for me to say, so far away. I love you, respect you, and support you in any way possible.
Thanks to all of you – exactly the support I needed, as usual with you guys. 🙂