Changes we’ve seen with Gluten free!We put ds on a gluten free diet - it has been almost a week now. And while I can not say I have seen any changes as they relate to behaviors, one BIG thing we have noticed is his sleeping habits.... It used to be that we would put him to bed and he would babble "talk" for anywhere from and hour to three hours. Also, I would put him down for a nap and, again, it would take anywhere from an hour to two hours to fall asleep (often time I would take him out of his crib with out a nap if it got too long). Since we started the diet his sleeping habits have improved TREMENDOUSLY. He is napping more easily, but even better, it is taking him less time to fall asleep at night. I can't imagine that it would be anything other than the diet (he never ate much sugar, etc. anyway, so I guess it must be the gluten.) Oh - and he has only woken at night once or twice this past week. He only does that from time to time anyway, maybe once a night or every other night (sometimes a couple times a night) and then goes right back to sleep. Anyway, just thought I would share for anyone out there considering the diet. Regardless of any other changes, this one makes it worth it to us. Bet I just jinxed it, didn't I!  Has anyone else experienced better sleeping habits on the diet or are we imagining things? Charlie, are you feeling better? you have plans in place, that must be comforting! how are the babies?
kristin - the hormonal postpartum MESS! [QUOTE=basal1999]Charlie, are you feeling better? you have plans in place, that must be comforting! how are the babies?
kristin - the hormonal postpartum MESS! [/QUOTE]Arrrgh - still teetering on the edge, but thanks for asking. I am busting my butt to try and find an ABA therapist - can't seem to find anyone (EI isn't offering squat!). What a horrible process this is! Btw, my 'real' name is Kristyn too!! I think with my son, it was better overall health as we watched what he ate. Good for you for trying the diet. We are still on it and it has been over two years. I am happy that you are seeing results! [QUOTE=KathyK]I think with my son, it was better overall health as we watched what he ate. Good for you for trying the diet. We are still on it and it has been over two years. I am happy that you are seeing results! [/QUOTE] Thanks. Guess I should have stated that he is 27 mos. He is a picky eater, so it wasn't that difficult. But I hope we can keep it up - I am concerned that he doesn't eat enough. We have an appt with a DAN! Dr next week, so I am curious to hear his thoughts on the matter. Good for all of you ...great news.We also had amazing results! Glad it is helping you. I agree with you. I don't know where they get their statistics, ok, they are they Autism Spectrum Disorder specialists here in Houston but I am not sure they have done enough research on the diet to make such statements. I started ds on fish oil a while ago and he responded well. That tells me that I should look into the diet too. Now I have to convince dh to trust me on this. And I hear you on the 'keep you going' I need that more than anything as well. If nothing else the diet if done properly sounds very healthy and nutritious, why not?I am really curious to hear what the DAN doctor has to say. In my meeting today I asked the ASD people about the diet and they said that only 2% of the kids on the diet respond very well to it. I am not sure they are right though. I hear too many people getting good results so I want to hear another professional point of view. Please keep us posted. [QUOTE=Sweetpups]I am really curious to hear what the DAN doctor has to say. In my meeting today I asked the ASD people about the diet and they said that only 2% of the kids on the diet respond very well to it. I am not sure they are right though. I hear too many people getting good results so I want to hear another professional point of view. Please keep us posted.[/QUOTE] You know what??? That really bums me out that they said only 2%.... I mean, I don't think it would get as much publicity if it were only 2%. Nor would we Moms/Dads keep up the effort. Trust me, there are nights I'd rather order pizza and let him chow that down instead of making a special little meal for him and feeding it to him. Anyway, like I said, I don't see any behavioral changes, but I am STILL seeing an improvement in his sleep. Two hour nap today and he hasn't had a night waking since my last post! Hey, maybe it's not even the diet, but it's enough to keep me going. Hey!! He also just started signing "MORE" while saying "mo, mo" this weekend!! Maybe it IS the diet! I'll post again on Thursday. He is not formally diagnosed yet; I hope they are still willing to treat him. Though I did make that clear on the phone... [QUOTE=Charlie] [QUOTE=Sweetpups]I am really curious to hear what the DAN doctor has to say. In my meeting today I asked the ASD people about the diet and they said that only 2% of the kids on the diet respond very well to it. I am not sure they are right though. I hear too many people getting good results so I want to hear another professional point of view. Please keep us posted.[/QUOTE] You know what??? That really bums me out that they said only 2%.... I mean, I don't think it would get as much publicity if it were only 2%. Nor would we Moms/Dads keep up the effort. Trust me, there are nights I'd rather order pizza and let him chow that down instead of making a special little meal for him and feeding it to him. Anyway, like I said, I don't see any behavioral changes, but I am STILL seeing an improvement in his sleep. Two hour nap today and he hasn't had a night waking since my last post! Hey, maybe it's not even the diet, but it's enough to keep me going. Hey!! He also just started signing "MORE" while saying "mo, mo" this weekend!! Maybe it IS the diet! I'll post again on Thursday. He is not formally diagnosed yet; I hope they are still willing to treat him. Though I did make that clear on the phone... [/QUOTE] Just to clarify, I am not one of those types that would ever believe diet would affect anything. I am the WORST eater; I could live off of fried mozzarella and pizza and never gave cholesterol (let alone gluten) a thought. But I am sold. I bet giving up casein would be tough... I bet the DAN Dr will suggest that though. Charlie (uhmmm Kristyn I meant:), did you have your ds tested by a doctor before you started the diet? I am only asking because I really want to try it but dh thinks that we have no indication that ds has any GI problems... Anyway, on your 'other' problem, about finding an ABA therapist, let me tell you...it took me forever to find one and one that I really felt comfortable doing my child's therapy. I was becoming desperate, thinking that it would never come true because all the good ABA therapists were busy with no openings for the next decade or something. BUT, I found one after many many calls, and waiting lists, and interviews. Ds started a couple of weeks ago and he is doing very well already. It takes time but it will happen for you too, just hang in there and don't give up on the phone calls. EI has been almost useless in the whole process for us too, btw. [QUOTE=Sweetpups]Charlie (uhmmm Kristyn I meant:), did you have your ds tested by a doctor before you started the diet? I am only asking because I really want to try it but dh thinks that we have no indication that ds has any GI problems... Anyway, on your 'other' problem, about finding an ABA therapist, let me tell you...it took me forever to find one and one that I really felt comfortable doing my child's therapy. I was becoming desperate, thinking that it would never come true because all the good ABA therapists were busy with no openings for the next decade or something. BUT, I found one after many many calls, and waiting lists, and interviews. Ds started a couple of weeks ago and he is doing very well already. It takes time but it will happen for you too, just hang in there and don't give up on the phone calls. EI has been almost useless in the whole process for us too, btw.[/QUOTE] Thanks Maria - Wow, nice to hear a happy 'ending' for someone. I contacted NINETEEN ABA therapists today. I contacted EIGHT last week and didn't get a single call back. Grrr. NO! I did not have ds tested. In fact, we have an appt with a DAN Dr on Thursday, and I can't help but wonder if I screwed things up by starting the diet already. Billy eats so few foods, though, that it was easy to make the switch. Literally, I just bought new gf waffles, syrup and some new snacks. He still eats a lot of baby food and will eat some veggies. I gotta find GF chicken nuggets. He's never had irregular poops or a bad stomach - though he was on soy formuls as an infant. But I thought I would give the diet a whirl. Oddly, I think he has been a little menace since the diet started, and he is usually soooooo mild mannered. He whacked me when I was putting him in his car seat - he's NEVER hit before. It's hard to say what is the diet and what is the terrible twos!! It will happen for you too, I know that. When I started my search I was very hopeful, I thought, ok, money is not a problem (for now) we can get this therapy started ASAP....How wrong I was! I spent weeks calling and leaving messages and weeks waiting for someone to call back, the waiting lists...oh my God, I could not believe that there is such a demand for ABA therapists. And the funniest thing (hmmm, not ha-ha funny) was that when I found one that I liked she almost 'fired' me!!!!!!!! We were talking about combining VB/ABA and doing Floortime at another facility and when she thought about it she decided that it would be confusing for my little guy and reneged (sp?) her services. After I thought about it, I almost begged her to take him, since I was still on a waiting list for the Floortime school....talking about desperate. So he started and I am happy with her and his progress, still on a waiting list with the floortime school. I found that the most difficult part of all this was the actual setting up of his program, so I've been in your shoes as most of the parents in this forum as well. It will happen though. Re: diet, on Monday I have a meeting with the clinic that evaluated my son to go over their findings, officially, and discuss treatment. I am planning to ask them about the diet and their recommendations on it, so I will keep you posted. All I have to say is hang in there and big hugs.Thats great that some positive changes happened. That must be so fustrating about the aba therapists not calling back!!! Good luck at the dan appt thursday!We have been GFCF for almost 2 yrs, Charlie (err.. Kristin ;) ) I am glad you are seeing results. Do not be discouraged by other peoples statistics. Do it for a trial, test a product back in his diet, and note changes. If the GFCF brings positive changes in your child, then it is working for you and that is what matters! We were amazed. We are only testing back every 6 months to make sure its still necessary.. And, here, it is! I add Benefiber to everything. I am going back to low carb/ high fiber/ dairy free. I can see how this diet would help the kids with the runs, but my kid is miserable. Yikes, it's tough - Billy LOVES pizza and mozzarella sticks! But we found other things he loves... We buy gluten free chocolate chip cookies that he LOVES, and fritos are GF... And there are some other things too. We found a GFCF cereal he asks for and some chocolate covered vanilla wafers. It's been tough - last night dh and I ordered a pizza (thinking ds wouldn't care) and the poor guy wanted it soooo badly! We ended up letting him snack on cookies b/c we felt so bad. Anyway, it is definitely worth a shot. Look for ideas on line too!! You'd be surprised what is out there that is GFCF!! I am PSYCHED we tried it! Good luck! we *try* to order pizza after our girl is in bed for the night... Also, Amy's makes a great pizza now that is gf/cf. Let me see if I cna find it: Scroll down to "rice-crust spinach pizza"--there are many, but only this one is without gluten or casein. For those of you who have done the diet for a while. How long did it take for you to see results. We put our son on it for 2 months and didn't see much results but did I take him off too soon? Sandra
For those of you who have done the diet for a while. How long did it take for you to see results. We put our son on it for 2 months and didn't see much results but did I take him off too soon? Sandra
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I know it takes about 6 months for the gluten to fully leave the body. We started Ruby out on only gfcf, but over the past 3 weeks have moved her into the Specific Carb Diet and she gets no breads, dairy or starches. Now I am seeing some changes. The thing with being GFCF is if the child has yeast issues, the rice products will still continue to feed their yeast, unless you're using an anti-fungal with the gfcf diet. Ruby has a chronic yeast problem which is why we took the breads away. Ruby is also sensitive to phenols in foods. I think the diet needs to be done for at least 6 months and strictly to see any changes. It's all about healing the gut and ridding the body of yeast. I'm just about to start my 11year old son on the GF/CF diet out of the "Special Diets for Special Kids" book. I'm worried about the rages and response I will get with him since he is so addcited to spaghettio's and all things unnatural. Any new thing is met with disdain and the idea of a vegetable puts him into a rage. I know others have been there, please give me some adviceSarah lost her dark circles under her eyes too. Benefiber & apple juice are lifesavers for constipation if your child hates veggies or fruits. Well, I thought I'll add on now since it's been 6 weeks of cassein free and 3 weeks of gluten free. Jacob has been chronically constipated since birth and going dairy free really helped that. I also noticed less gas and pain and totally better sleeping.So that part was great. Since going gluten free, his terrible constipation came back. He also seems irritable. I'm going to stick with the agreement of 6 weeks on gluten free- at least to use up the $ I've spent on the crazy lineup of products, but if he is still constipated, we're back to high fiber /low carb products and we'll stay dairy free. I've noticed no improvement with the dark circles or sniffles either. Drat. But we are of slavic origin so it may go with the genes. It is great that he is sleeping better and you are seeing positive results. You may see even more as time goes by. I noticed Ruby's sleeping has gotten better. I think the biggest thing we've found is she is no longer a picky eater. She eats a lot and she tries new things all the time now. I am doing a lot of the Specific Carb recipes and she loves them. The good thing about that diet is there are a lot of things with hidden veggies inside and she has no idea. All she would eat before was chicken nuggets, toast, pizza and apple juice. Now she eats a bigger variety and very very low carb. I love it. I think it's more like 50% of the kids improve on the diet, 2% can't be right, there wouldn't be so many people trying it. [QUOTE=Charlie] [QUOTE=Charlie] [QUOTE=Sweetpups]I am really curious to hear what the DAN doctor has to say. In my meetingtoday I asked the ASD people about the diet and they said that only 2% of the kids on the diet respond very well to it. I am not sure they are right though. I hear too many people getting good results so I want to hear another professional point of view. Please keep us posted.[/QUOTE] You know what??? That really bums me out that they said only 2%.... I mean, I don't think it would get as much publicity if it were only 2%. Nor would we Moms/Dads keep up the effort. Trust me, there are nights I'd rather order pizza and let him chow that down instead of making a special little meal for him and feeding it to him. Anyway, like I said, I don't see any behavioral changes, but I am STILL seeing an improvement in his sleep. Two hour nap today and he hasn't had a night waking since my last post! Hey, maybe it's not even the diet, but it's enough to keep me going. Hey!! He also just started signing "MORE" while saying "mo, mo" this weekend!! Maybe it IS the diet! I'll post again on Thursday. He is not formally diagnosed yet; I hope they are still willing to treat him. Though I did make that clear on the phone... [/QUOTE] Just to clarify, I am not one of those types that would ever believe diet would affect anything. I am the WORST eater; I could live off of fried mozzarella and pizza and never gave cholesterol (let alone gluten) a thought. But I am sold. I bet giving up casein would be tough... I bet the DAN Dr will suggest that though. [/QUOTE] I was told it would only help 1-2% of the US population that has a wheat allergy? Europe it would be much higher, 1 out of 250-300 are allergic to wheat. Just to make everyone feel better , if you are a genetic carrier of casein allergy, your ancestor came from northern Europe I have to confess that I am prone to eat only carby foods...and I am considered NT (allegedly)!!!!!Sarah never had the miracles I wanted but her awareness and eye contact improved enough for us to believe in it..she also had normal bm's for the first time:) She was on it for a year straight religously and then weaned off with enzymes...to now she eats everything again. I sometimes want to try it again just to see if I see any new improvements since she is still prone to eat only carby foods. She was tested for glutien and casien and came up positive for both protiens so we were really compelled to do it for her:) NO regrets:) Netty, my DD had chronic constipation, too -- from the time she was about 2 weeks old until age 4 when we went GFCFSF. She has no BM problems at all anymore. Here are some things that helped: + Try going soy-free as well as casein-free (a LOT of gluten-free products are loaded with soy flour, and kids who can't digest dairy protein often also react badly to soy, according to our naturopathic Dr. You say you spent a lot of $ of GF foods, so I'm wondering if the soy might be causing your son's problems?) + Use probiotics (we give them in DD's a.m. water, before breakfast) + Make sure your child gets plenty of fat -- just make sure none of it is dairy (butter) or hydrogenated (margarine). Both our DDs now get 3 main sources of fat: flax oil, canola oil, and olive oil. I thought this would be a big battle, but it was one of our easiest changes. You just stir a tsp. or so of oil into their oatmeal, veggies, mashed potatoes, etc. + Give your child a daily tsp. of cod liver oil. (Use the purified kind from the health-food store so it doesn't contain mercury.) This really helped with BMs and also improved eye contact and speech in our DD. Good luck! |
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