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  1. #1
    Zoo
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    Default Gluten/casein-free diet

    Thoughts? Opinions? Experiences? I'm getting kinda desperate here - possibly desperate enough to try messing with his diet. For a mom of a kid with food sensitivity issues (not allergies, just colour/flavour/texture stuff)...this is the stuff nightmares are made of.

    We've scheduled a 'urine peptide' test? Apparently this will be the first step in determining if he's sensitive to gluten/casein? I dunno, feel like I'm in over my head.


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    I have a friend whose son has Aspbergers and she swears by it. It made a HUGE difference for him. In fact, she was on a waiting list for somewhere (can't remember where) and while she was waiting she tried the diet out of desperation. When someone finally came to evaluate her son they went to see him in the classroom and the evaluator said that had she not already known his diagnosis, you would never have known just by observing him in the classroom. Which is amazing IMO.

    I am happy to put you in touch with her if you would like. It's definitely not an easy diet, but I guess the pay-off for her is worth it.

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    Zoo
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    Thanks. I'm going to see what the urine test says and do some more thinking from there. This would be totally last resort, as it would eliminate all his favourite foods.


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    Zoo, I've never found a shred of scientificresearch showing that it works. Nothing. Just a whole lot of moms swearing it does and a whole lot of DAN! doctors making money off of it... The best explanation is placebo effects or other food issues/allergies that inadvertantly are dealt with throught the diet that end up effecting behaviour (e.g. lactose intolerance) or confounded results by doing multiple interventions at once and crediting the diet (a la Jenny McCarthy). The DAN! website references a bunch of papers that they present to each other at conferences and are never actually published in peer-reviewed journals (translation: garbage).

    FWIW - none of my clients who have gone on the diet made improvements that we could measure and same with going off the diet and losing skills or having behaviour bursts. However, if you do it the right way, you aren't going to harm your child per se, and even placebo effects make you feel good, right?

    So, what I always tell my clients (because really, who am I to tell them what's best for their child?) is if you're going to do the diet you should 1. Go 100% or not at all - no treats, no shortcuts, no just-one-ingredient, none of it. If you can have treats and shortcuts, you're not really doing the diet so what's the point? 2. Get a doctor (if your own paed won't get on board, find another... haha, bc that's so easy) who will support you and make sure he's getting his nutritional needs. 3. Watch the calcium intake - the latest research is pushing against the diet bc so many parents do it without enough thought and these kids are having bone density issues extremely young bc of the lack of dairy. 4. If at all possible, put your whole family on the diet. I'm guessing your DS may notice if the whole family is eating yummy pizza and he's eating soy cheese on rice patties? It reduces the fight and reduces the odds that he'll get at something he shouldn't.

    There are a few new cookbooks for the diet and I believe there is at least one in the London Public Library system that looked interesting - it'll give you an idea of what your cooking will have to look like.

    Good luck with whatever you do, and let us know how it goes!

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    Zoo
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    Thank you turtle. You are writing everything I already believe, and I have NOT done the diet specifically for those reasons. I've always said that the biggest part of it is the removal of the REAL shit from their diets like dyes & extremely concentrated sugars that is the biggest part of the positive results people see, plus they are forced to really pay attention which is also huge.

    I don't know, it's just so hard to see him struggle and say "well I don't believe in it so I'm not going to try it." "How do you know it won't work if you don't try it?" "Well, I don't. But it will soooooo suck to try and implement it." "Well gosh that's AWFULLY selfish of you don't you think?" And on and on and on and on...


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    I hear ya, Zoo... But I don't think you can call it selfish at all. The best thing a parent can do is look for evidence that something will work AND not do more harm than good. If you think the diet may possibly work and be worth the upheaval, go for it... but not doing it is not selfish. You don't have to try EVERY fad out there - secretin injections, chelatin, diet supplements, B12 injections, enzymes, meds, never mind all of the alternative 'therapies' that I won't even mention... do you feel guilty about by-passing those? Add the diet to the list and breathe easy.

    I should note that I am 100% biased since I am purely a behaviourist and get quite resentful that the fads often interfere with the only proven therapy to help some ASD kids.

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    Zoo
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    again, thank you turtle. My mom tried to make me get effing magic clay on the effing internet last year. She's pushing the diet. I'm just feeling really vulnerable right now I guess and having trouble saying no. I just want to put my head down and my hands up and say 'you try it.'


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    Zoo
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    And my guy never qualified for IBI or ABA or whatever, I don't have it in me to look it up right now. But the school has been really good.


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    Well, in my world, that's a +/- when kids don't qualify, you know? It does leave you out on your own, though. If you ever want to think about ABA stuff, let me know... it's all I do! (well, that and have babies, apparently)

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    Not sures of the pros and cons on ones health or behavoiur of removing gluten for other reasons than my own....as a Celiac...having had a surgical biopsy to confirm this...making the transition to Gluten Free there is certainly a 'grieving' process for the change in lifestyle...most notably learning to cook alot of things from scratch which has added benefits of lowered sodium and other nasty additives in 'premade' foods and of course the trickiness of eating out...although more and more resteraunts are listing ingredients as gluten free if eating out is a part of your lifestyle.

    Although it would be great if everyone in the house adopted the diet...it could cost you a FORTUNE to feed that many people. In our house our 'main/shared' meals are gluten free but SO and stepson do still eat 'regular' foods for their own made meals like breakfast and lunches. Tips for a 'shared' kitchen is that the person eating gluten free have my own toaster oven and a few other 'only gluten free food' preparation tools and condiment items to avoid cross contamination. This is important for myself as it does not take much to make me ill...found that out when stepson double dipped in the peanut butter so thats why i have my own now!

    I have found ways to cook all my stepsons favs...gluten free...including yummy pizza, tacos, lasagna, sloppy joes, mac and cheese and other kids favorities!

    If you are not a 'baker' there is a great place off of Wellington Downtown on 299 South Street called 'the Jubiliee Cafe' that has a large selection of fresh gluten free baked items as well as frozen entrees...awesome progies for a treat... and I understand that they will also make special orders to accomodate other restrictions as well....with enough notice.

    There are more and more 'convience foods' items on the market that are gluten free for lunch boxes and such....and surprising taste good....rice cripsie squares, kids cookies, pretzels, and more!

    It is not an 'inexpensive' dietary option though.....although one thing that is worthy to note....if you do not mind the math...is that if there is a 'diagnoised medical reason' to adopt this diet you can write off the additional expense in food under medical costs....you just have to track everything you buy specifically gluten free and subtract the cost if you bought it as a 'normal' items and claim the difference....it is a pain in the ass but can be quite a nice little tax break! Oh and keep all your gorcery reciepts as proof in case of an audit!

    For example a loaf of 'normal' store bought bread is $0.99 and a loaf of store bought gluten free bread is $5.99 that is a 5.00 medical expense for every loaf of bread bought....that little doozie is the reason why I now make my own bread...but when I was working outside the home I just never had the time for this and the store bought was my easy out!

    I guess I am just saying if you choose to try it....once you get used to it and get a meal making system in place...it becomes second nature and is not so bad!

    Good luck in your choice!

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    Zoo
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    totallyawake, thank you so much for your post. I meant to reply yesterday but got sidetracked and completely forgot to come back to it, I'm sorry!

    I suspected it wouldn't be something I could apply across everyone's meals, and that it could be costly. I had no idea about the medical expense thing, thank you so much for that information. I wonder if this would count, given that he doesn't have celiac disease, just a desperate mama?

    I'm gonna hold off for a bit... c&p from another post:

    I just want to say thanks for the ideas and the support. I do try to remember to do deep breathing exercises and visualize coming out the other side. I was just seriously DONE, ya know? Nothing left. I had a counselling appointment yesterday and that helped, plus they've changed some strategies at school so ds2 seems to be back on track.

    The diet can wait until my next nervous breakdown maybe.

    Oh, and I know lavender is so soothing and relaxing, but wouldn't you know I'm one of the handful of folks on the planet who's *allergic* to it??? Gah!


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    Totallyawake, I was just going to suggest that the OP message you about this diet...but you beat me too the post

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    LOL...thanks for thinking of me

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    Wink I just started researching

    My son is not officially diagnoised with autisum but that is where the specialist is heading, we are on the very long waiting list for CPRI, anyway its funny i was just researching gluten free, casein free diet, and was also considering the urinary peptide test to see if the proteins are being digested or not properly, it's alot of work and I wonder if I'll be able to go back to work or not. I'm in a pit with no support, my parents flee the country every year from Dec 26-April 26 and my husband works hard and sometimes lots of overtime. And most of my friends have kids of their own, so we are on a waiting list to have a support worker come a few hours a week so I can have a break (don't think I would know what to do with myself LOL) but I know how you feel zoo, and all i can say is hang in there, tomorrow's a new day. I find with my guy whos 5 that outside play everyday for at least 30-1hr really helps, we have a hill close by so we go tobagganing he loves it and never tires of it, wish you all the best.




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    Zoo
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    Hi momofallboys -- you should check this out: http://www.autismontario.com/rcp

    There are lots of resources available, including a group for moms.

    For me, I know there is lots of support available, even within my own family, I just hit the wall there the other day where I couldn't seem to get anymore support out of *me*...


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