I am of those moms that from the day of my son's diagnosis have thought that all of the parents who try to preach to me about the importance of a GFCF diet and bio med/alternative therapies were crazy. It sounded nuts and like way too much work. And besides, all the other parent's claimed their ASD kids had terrible belly and poop problems while my son had no gut issues. So its been a few months since his diagnosis and just by a fluke of bad planning, I opened the fridge and realized there was no whole milk for his nap time sippy cup. His sister drinks soy milk, so I gave it to him instead. Since it was raining all day, I never made it to the market so he ended up having soy milk all day and the next morning. He literaly became a new child overnight. My husband and I are astonished. We can't believe that it was just milk. We are trying to think of anything else we did differently that day, but there was nothing. He also is not in any therapy yet, so it is absolutely the dairy. He is looking at us, talking again, playing, laughing, even smiling at strangers on our walk this morning! I share this just to let all the other sceptics out there know what miracle we experienced in just 36 hours and to thank all the parents who kept encouraging me to try the diet. My next question is... do we go further? Has anyone just taken out milk, or do I need to get rid of the wheat too? Any suggestions would be great!
Wow, that is inspiring to hear! Our DAN! tests results did not show any indications that Harris should be on the GF/CF diet, he eats well and does not have gut issues either. He has no allergies per testing.
I have read that there can be "hidden" allergies and that parents are encouraged to try the diet, despite there being no evidence through testing that they need to eliminate G or C.
I was starting to think....why bother? Thanks for your sharing your success-because it is enough to inspire me to try taking items out and see what happens.
Happy for you~ and thanks!
That's awesome!!! I'm so excited you saw such a dramatic difference.
Thank you so much for sharing. I think you've finally pushed me to try something I've been dreading... C is a MILK LOVER. When C is upset, overstimulated, hurt, tired, all he wants is his "milk cup." It is, and always has been, his favorite thing. If we let him he would drink it 24x7. C never attached to a blankie, or a special teddy bear, or anything like that - just that darned plastic sippy cup.
I think I'm going to have to pick a weekend for a soy experiment. Fred - I'm with you on the stealth operation. My in-laws family business is dairy products distribution. It's bad enough I don't like milk, a fact I managed to hide from my in-laws for 3 years before I was eventually outed by a nephew (dang kids). But to introduce SOY milk - all will be agast (including dh)! Oh well...
Fred~good luck with your project:)
Sarah was a huge milk drinker before we took it away...like 8 bottles a day..yep bottles.....at almost 3 years old
But in Mikey's case, he has alot of gut issues. Constipation,yeast infections, allergies, eczema etc since he was a baby which has improved tremenduously since we started watching what he eats and drinks.
He is currently on rice milk.
After the 2 weeks, we added back ONE of the least sensitive foods(casein, soy, or the other I don't remember). You observe for 3 days. If no reaction---means there is no sensitivity or allergy present, then you continue to give that. Move on to the next food. The last foods we did was wheat.
I never saw any reaction with any of them(good or bad). So he is not on any sort of diet now. We did continue the GF for about 3 months--just to be sure. I gave him a loading dose of gluten after 3 months and he told me he didn't feel any different and he still acted the same.
That is wonderful that you noticed a difference that soon!! Maybe he is just sensitive to lactose instead of casein. Even though you took away just milk, casein is found pretty much in all other dairy products. Try the milk thing for 2 weeks, then give him a glass of milk and see what happens. Then you will know for sure its a reaction.
If it is the dairy protien, you can certainly take the next step to remove all dairy protiens from the diet. You need to watch out for the protiens that are used as a preservative. Dairy protien usually takes about a 4 days to a week to be eliminated from the body.
It is a possibility that your child has the same reaction to gluten. For parents to really know if it works, you really have to do it at least a good 3 months. Gluten takes up to 30 days to get eliminated from the body.
www.tacanow.com can provide you with more detailed information about the reasoning behind the gfcf diet.
Ah, bummer! I guess my week's experiment is doomed to be inconclusive, then. I'll try it anyways, though - see what happens. If nothing else, it sounds like GF can be a very healthy diet - just lean meats, legumes, rice, veggies all the time. Nothign wrong with that! By the way, what I *thought* I noticed when I took the gluten our for a day was an increase in social engagement - kind of vague, I know, but the breakfast table conversation the morninga fter the gluten free day just seemed better than it usually is.
dont feel bad shelleyr my daughter will only drink her milk from a bottle and she drinks alot a day. we did try the soy milk for a few days but she didnt like that taste of it and i didnt notice anything either.
glad to hear that you got some results with that.
I am so thrilled 4 u
We were just now on the GF CF diet for 3 months and just got off it - I am not at all sure one way or another
I am watching him like a hawk for signs of reression - i am not telling the therapists to se some unbiased opinions
We saw steady improvement in R and are not sure if ut was due to the bunch of therapies we started at that time
He was stimming a lot today but that could totally bebecasue we were meeting a bunch of new people
Friday his speech therapist actually mentioned that she was seeing a lot of good things that she had seen before ( and I had given him Wheat triscuits- on the way over and was prepared to see mega regression)
R NEVER has been a milk drinker thiugh and I dont think we will start
Wow - that's amazing! I did non-dairy for a few weeks with the girls and it was hard to say if there was anything different. I did non-gluten for a day and *thought* there was a difference, but attributed it to placebo affect (and DW wouldn't allow for diet modification). She's going away to a wedding next week, though, and I had been planning a stealth GFCF experiment while she's gone to see if there's any difference :)
It's awesome that you found something that works so well! Did he have any symptoms of milk intolerance and such?
My goodness - I wish it was that easy for all of us. Good for your family!!! Fred - stealth GFCF experiment - LOL. Let us know how it goes.We give my son soymilk instead of reg. milk. We didn't change anything else. My son has icecream and stuff just no cow's milk. Has it made a difference? I really don't know he's been on soy milk for 8 years now. He's improved a lot over the years but that could be to a number of things (ie maturatity, his prescription meds, interventions, ect. ) To be honest I'm afraid to switch him to regular milk because it may have made a difference. I say if your son doesn't mind soy then stick with it, it can't hurt
Patty
That is so encouraging! I hope things continue to progress. I've been preparing for the diet, but haven't gone full force yet. I've eliminated several things, but gave in to my son's request for goldfish crackers yesterday. He has been a train wreck today. Don't know yet if it's related, but I would think if you saw such a great improvement with the removal of milk, I don't think it would hurt to try the wheat removal too. I have an appointment with a DAN doctor this month and my son is having the full blood/urine/stool/hair workup. Once I get the results from that, I plan to try whatever diet the doctor recommends. I too was very skeptical of the whole diet thing, but after attending an autism conference dedicated to biomedical interventions just last week, I am believing more in the link between food and behavior. Also, I just finished Karen Seroussi's book, which talks about her son's "recovery" using the diet and such. Keep us posted on your son's progress! my son drinks so much chocolate milk, now i give him the milk but 1% with ovaltine cause it has vitamins. it sway better than nestle quik poweder or syrup. soy milk i have been wanting to try it but it comes in small half gallons and my son would drink that in 1 day. i dont know how to stop the milk. it even got him with anemia now and he is taking liquid iron for that. Cole hates the taste of milk, always has, and except for cheese (and yogurt once in a blue moon) he gets no dairy...so that's not it for us. I am so happy that this simple step helped your boy so much! Congratulations!We did the potato milk:) The wheat aspect was easy because she only ate chic nuggets so I made huge batches from GFCF Mrs. Robbins baking mix and she gobbled them up:) We made french fries and got rice cream(ice cream) and many snacks items at healthfood store like cookies and crackers~MILK is a big pronenent in allergies so I am not surprised at all...even now that we are off the diet if she gets too much dairy she is real zoney. Congratualations on the wonderful success~I wished it worked this well with all our kids:) It worked for us too. But my son was drinking around 600-800 ml milk/day at 2 -3 y which is too much ... I think. I used almond and rice milk and now goat milk.Thanks for the post. I'm always looking at 'other' alternatives out there for Lachlan. Given we having major food issues right now I wonder if this might be something for me to look further into.
Fred - I wish Lachlans dad would put even a tenth of the effort into looking out for Lachlan like you do for your girls.
Mysh
I am happy its working for you! It has also worked for my nephew, he has had alot of success with the no milk diet.
We tried the GF and DF diets without success. But we had alot of success with fish oil and vitamins. Its weird how one thing will work for some but not others. Glad you found something that works!
You know what i do now? i mix the regular 1% milk with water and then add ovaltine that has some vitiamins. he didnt notice anything!Just want to mention to parents planning to go off dairy, a lot ofAiden is on GFCF diet for a month now and I have seen a lot of progress, he is very responsive now, and so much better eye contact as well.
I have spoken to his teacher too, and she said that he is doing very very well:-)) in thr last couple of weeks, so I guess there is something that makes sense here.
Definately interesting how some have such dramatic changes in their kids. I think it's great! I unfortunately didn't see any change in my dd when I took her off dairy and reduced gluten (that's REALLY hard!). Did it for about 3-4 months but she's such a big milk drinker she was thrilled to have it back!
Milk was once touted as being the ultimate source of calcium but now we know that the human body has trouble digesting the lactose in the milk. If u have to go with dairy, less of it and try diluting the calcium enriched milk with water.
Congratulations! I am going to print your message because me DH is a sceptic. We are keeping my son diary-free. When he gets diary on his skin, he gets a red mark so I thought "what is it doing to his insides?" Anyway, we've been trying to be completely diary-free. He stopped drinking milk a year ago and that's when I remember the biggest improvement in language. Now he says he doesn't like milk, he says 'it hurts my hair'. Cute. Anyway, we've been trying for weeks to keep him completely diary-free; it's hard, diary is in a lot of stuff (white bread, English muffins, etc). I have been working hard trying to get a consistent 3 weeks, but somehow he keeps getting contaminated. So it's a work in progress. His main issues are behaviorial now. He is a tough kid. He puts me in timeout! I'm hoping that when he is completely diary-free, the behaviors will be easier to deal with. Even the doctor that evaluated him said it they saw him a year ago, from our description of him then, he probably would have been dx on the spectrum. Because of his progression, he was dx with just a language disorder (which to me is similar to ASD). Anyway, thanks for everyone's feedback on this issue. I thought I was just being "desperate" (as my pedi describes parents who use diet intervention) - of course, I didn't enjoy his comment. Good luck and keep us informed.I want to thank you for this post. My son has been experiencing some agression issues as of late. I attribute a lot to puberty! He is 12 and screaming through puberty at an alarming rate!! He is 5'7" and 148lb and has hair EVERYWERE
We first tried soy, vanilla and chocolate. He was unimpressed with the taste but the difference in attitude was immediate. Now, as Fred stated, could have been a placebo affect. Whatever! I will take it. We have since tried rice milk. He likes the chocolate rice milk better and I have been told the silk soy very vanilla is awesome by his scout master so we will try that next. Bottom line is it has been a couple of weeks since the change and no more aggresive outburst. He is still a pre teen and has to be corrected for the attitude but now it is nothing like before. He has even stopped getting mad at his big sister when she teases and has learned how to tease back(which had her asking, "what have you done to my brother"!)
I suggest trying a gluten-free diet in conjunction with the casein-free thing you've been doing and see how it works...it certainly can't hurt. However, it is not a good idea to go "cold turkey" with wheat; you should ween down slowly. Gluten and casein have opiate effects in the brains of ASD people and actual physical withdrawals can result, just like if one were to give up codeine or heroin suddenly. Make sure to learn all the names wheat and gluten-containing products and additives go by, as there are very, very many. Good luck!