Gluten Free, Casein Free Diet — The Bump
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Gluten Free, Casein Free Diet

My son is almost three and we think he has sensory processing disorder.  We are currently working with therapists to confirm a dx.  His developmental therapist suggested we try the gluten free, casein free diet.  I have bought some books and researched on the internet and all I can say is OMG!  This diet is a MAJOR undertaking and really overwhelming.  So I am wondering if anyone has tried this diet and has anything negative or positive about it.  I am also wondering if the gluten free, casein free foods are hard to find and expensive.  Thanks to anyone who has info on this!
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Re: Gluten Free, Casein Free Diet

  • Welcome! I haven't seen you on here before, pardon me if I just missed you.

    I have not tried my son on this diet, nor do I intend to at this time (he is 3.5 ~ASD), but there was a decent thread that had a lot of talk about it the other day:  http://community.thebump.com/cs/ks/forums/thread/34013965.aspx

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  • Is he seeing an OT?

    Well, lookie there, my son's name is Elijah too! 

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  • We just do CF. That is what was reccomended to "start off" with. Right now we have no intentions of doing GF. Although, he doesn't get much Gluten with exception of our weekly spaghetti dinner and crackers on occasion. It has helped with my ds BM's, as he used to have constipation issues. We did have him on Miralax and since been able to take him off since going CF. It is more expensive. My ds loves yogurt and ice cream, so we do the coconut milk versions, which we can only find at the local Whole Foods Market. And they are expensive. Behavior wise, small differences, he seems to be a little more settled versus hyper.
  • We are trying to get that set up.  The ECI program in texas is terrible and slow.  So far we have only had a developmental therapist eval.   I am currently considering going to my peds and trying to see if they can refer us to a developmental peds.  So I am hoping that will get the ball rolling!
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  • I know nothing about GFCF diet as it relates to SPD or ASD.  My son is on GFCF due to severe food intolerances.  He does not have to be GF but he does have a wheat intolerance.  Most wheat free foods are GF.  It is more expensive and very time consuming.  It's a lot of fruits, veggies, and meats.  My DS won't eat any vegetables and will only eat 2 fruits.  I spend a lot of time and a lot of money at Whole Foods. Some GFCF foods are just not good.  My DS also has a soy intolerance.  I found a great GFCF bread.  It is called Udi's.  I buy it from andreasglutenfree.com

    I don't know much about how the diet as it relates to special needs children.  However, if you need any advice relating to GFCF foods, let me know.

  • We have been doing this diet for about a year. The thread that Breezy posted has some dairy free suggestions I posted. You can look there - it's more towards the end.

    It is more expensive and more time consuming - you really need to cook from scratch - no pre-packaged stuff to avoid all the fillers and additives that usually contain hidden gluten and/or casein.

    I also buy a lot of stuff at Whole Foods (super expensive), but have been successful (at least partially) to subsitute a lot of stuff at Trader Joe's where you find good value.

    I found Pamela Compart's "Kid friendly ADHD & Autism Cookbook" to be useful in the beginning when I needed help with recipes. I think you can get it on Amazon or Ebay for a pretty good price. Others swear by "Special Diets for Special Kids" volume 2 - although I do not own this cookbook, so I can't say from personal experience if I'd recommend it. It is suppossed to be the go-to book, though - when you start this diet.

    There is a lot of useful info on the TACA website (talkaboutcuringautism) along with a laundry list of acceptable foods and where you get them. It also explains a 10-week program where you slowly start taking off gluten & casein one meal at a time. I didn't do it this way - we went cold turkey, but it is recommended to do it gradually at first to avoid extreme reactions and resistance from the child.

     

  • My family is gluten-free because of celiac disease and we were also dairy-free for a time (during healing).  It is a big undertaking.  But it is doable.  It doesn't have to be expensive.  I do most of my shopping in mainstream grocery stores with a few treats from occasional Whole Foods visits. 

    I have some links in my bio about the diet. 

    .
  • We do some CF, he doesn't drink regular cow's milk, no chocolate, and limited cheese.  He drinks rice milk.  We noticed a difference in language skills, not saying it has anything to do with the CF.  He does get grouchy and very naughty if he has milk or chocolate...very difficult to deal with.  I tried re-introducing milk recently, epic fail!!!  He was super grouchy and unmanageable...crazy upset fits!  I'm still trying to get him back to normal.  It could be change of schedule due to Spring Break, IDK!

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  • Thanks to everyone for posting.  We currently are waiting for the speech and OT evals and are seeing our peds tomorrow.  We are hoping to get a referral then to a developmental peds.   We are hoping and praying that we can get a dx from this or something to help us with our son.
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  • we are totally GF CF! (my kids, not hubby and me. a sister needs a cheeseburger now and then!)

     i don't post on here very much anymore as our experience is rare and it's hard to find support (and time!) in a community where you are against the grain. THIS DIET HAS MADE ALL THE DIFFERENCE FOR MY SON. 

     

    Let me tell you...it's so incredibly difficult because there is no point just trying it for a couple of days. You really do have to be strict and you *have* to watch for cross-contamination. (we have 2 separate toasters, for example, for my kids GFCF bread, and the crap that DH and I eat.) Apparently it takes some people 3-6 months to see change, but for us it felt instant.

    I can never go back to a typical diet now, because of the changes. We've been doing it a year now, and I feel like wheat, oats, barley, rye, casein/dairy are like rat poison to my son. I know that sounds crazy, but when I see what it does to his development, it reminds me of poison.

    This diet apparently does not work for everyone, but what I will say is that to me it was worth the trouble. It was something I could try that had no negative impact (my kids are healthy and their diets are monitored by a nutritionist at our Children's Hospital every few months) except for our wallet. However, we spend about the same amount of money on groceries as we did before, we just buy less crap, and we don't waste food like we used to. 

    I wish you all the best no matter what you decide. 

     

     

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