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September 23, 2008 at 1:31 pm #57017AnonymousInactive
I have been posting a lot lately, but so much is happening. This question is for those of you who have done the gluten casein diet. I started my son on this diet last week. I am not sure if it is just a coincidence, but I have seen a few dramatic changes and I have no idea if it is solely developmental or if it is related to the diet. Here are the changes- more imitation of sounds, more gift giving, no crying when I wash his hair (he used to act like it was torture and today he giggled!), a lot more finger food eating, etc. Could just 7 days of the diet make this kind of difference? I read that gluten takes 6 months to leave the body, but that casein is gone much quicker. Sheri- any thoughts? Any input would be appreciated. The diet is hard, but if he needs it, I am going all the way!
September 23, 2008 at 2:28 pm #57023AnonymousInactiveI am no expert with this, but I am willing to bet that the diet has at least something to do with it. I am glad you are seeing these improvements. I know being a dietitian that the diet doesn’t work for all babies, but those that it does help it helps tremendously. I hope that is the case for you. It is very difficult and can be a pain in the rear, but it is so worth it in the long run. Am I remembering right that you are in NC? Depending on where you are, you may want to find you a good whole foods type grocery or health food store where you can buy in bulk to keep the GFCF stuff on hand. Best of Luck. I will be very interested in what Sheri has to say.
September 23, 2008 at 2:31 pm #57024AnonymousInactiveDoes this diet help only autistic kids? In other words, does this mean that he has some sort of problem? Or, can the diet be beneficial to other kids too?
September 23, 2008 at 3:02 pm #57026AnonymousInactiveYes, yes!! It can show improvements very quickly! I’m so happy to hear this – it means that he definately needs this diet, and you will only see better and better things to come. For Ben, we saw huge language improvements on his 3rd day of being casein free. We then went gluten free 2 days later.
And no, this diet does not only help kids with autism. Although kids on the autistic spectrum and with ADHD tend to show the most dramatic behavioural, developmental and sensory integration improvements, it can help many people with various issues. It’s been shown to greatly help people with autoimmune issues (arthritis, fibromyalgia, lupus, MS) and those with gastrointestinal problems, especially any type of GI inflammatory processes (Crohn’s disease, IBD). When I stick to the diet myself, my allergies, asthma and chronic sinus problems disappear. When I cheat, those all flare up within 24 hours and my mild arthritis symptoms return.If Jackson is showing the types of improvement you’ve listed, then he likely has some bowel issues like leaky gut and deficiecy in DPP-IV, the enzymes responsible for properly breaking down gluten and casein. With leaky gut, there is usually yeast overgrowth problems. I think he would likely benefit greatly from probiotics and digestive enzymes.Again, I’m so glad to hear of his improvements!! I know just how tough the diet is to implement, but after a while it just becomes your lifestyle. It’s not much different than someone with Celiac disease who needs to avoid gluten, or someone with diabetes who needs to watch sugar and carbohydrate intake. It will get easier with time, especially if you keep seeing gains from it. If you haven’t done so already, I would suggest looking at the GFCFKids yahoo group, as it is a GREAT resource on this diet. http://health.groups.yahoo.com/group/GFCFKids/September 23, 2008 at 3:13 pm #57027AnonymousInactiveJust one more thing – when doing GFCF it’s important not to overdo any one particular food, especially rice. Most things that are dairy free are either made from rice milk or soy (which most on GFCF avoid since soy protein is structurally very similar to casein). Add to that all of the rice in GF products, and you can easily overdo rice. We accidentally did that with Ben and within 1 month he regressed because he suddenly began reacting to rice. And pulling rice from the diet when you are GFCF is very hard! So my best advice would be to use varied milk subs or grain subs and don’t rely soley on rice.
Dairy alternatives include Vance’s DariFree milk substitute (made from potato), hemp milk, coconut oil or Spectrum Shortening (palm oil) as alternatives to margarine/butter in baking, and some companies are coming out with nice coconut milk products (ice cream, yogurt, etc.). For grains, try to use a variety like sorghum, millet, quinoa, amaranth, teff, cornstarch, potato flour and starch, coconut flour, arrowroot starch, tapioca flour/starch, etc.MFPIx22008-09-23 15:15:54
September 23, 2008 at 3:14 pm #57028AnonymousInactiveThanks Sheri. Last week, when we first started the diet, I felt like I was in H**. He started to fight me on spoon fed foods and he did not want to sit still for any meal time. I had to show him a Baby Einstein video at every single feeding just to get enough in him. He acted so wired and annoyed- could this have been withdrawal? Now, he sits there and acts content, and the peas on his tray are enough to entertain him. He is not really swallowing too many of the foods, but he puts them into his mouth the second that I put him in his chair! This is NOT my child! When he laughed about the water on his head, I was shocked. Then, when I was dressing him, he sort of helped me instead of fighting me- does that make sense? Again, that is NOT my child! Or maybe it is! I do think that Jackson would eventually be termed ADHD without this diet. Today I said “bring me that book” and he brought the book to me and handed it to me. He is feeding me his finger foods and is making all kinds of sounds. His improvement over the last 4 days has been strange, but very exciting. Sheri- will the gluten free definitely help even more or is it possible that is sensitivity is only to casein? Also, do ADHD kids tend to have sensory issues? I would definitely say Jackson’s sensory issues are limited- mostly just hair washing and getting dressed, which I think is pretty common.
September 23, 2008 at 3:55 pm #57032AnonymousInactiveGood to know about rice! Everything seems to be made of rice. I am giving him a Stage 2 formula that only has whey proteins, no casein. Is that ok?
September 24, 2008 at 3:32 pm #57071AnonymousInactiveIt is likely that he would need to be both gluten and casein free, since it is the same enzyme (DPP-IV) that breaks them down completely. If he’s deficient in this enzyme (which most responders to the GFCF diet are) then both gluten and casein would be a problem. What happens in DPP-IV deficiency is gluten and casein are only partially broken down into the peptides gliadorphin and casomorphin. Gliadorphin and casomorphin are known as opiate peptides, meaning they are structurally similar to opiates (like herion, morphine, etc.). When they bind to opiate receptors in the brain, they act like opiate drugs, affecting attention, speech, auditory integration, awareness, behaviour, development, etc. So essentially, the child is hooked on drugs! Withdrawal after removing gluten and casein can be very significant. When we took Ben off of casein, he was like a wild animal coming off of heroin! It was unreal. But enough to show me just how toxic milk was to him. Could you imagine the long-term effects on a child’s developing brain if it is constantly on an opiate substance? Scary.
I also wanted to tell you about a really good book on the GFCF diet. The child in the book had moderate to severe autism, but the same prinicpal of the diet would apply to any child on the autistic spectrum, or those with ADHD or sensory integration disorder. It is called: “Unraveling the mystery of autism and pervasive development disorder: a mother’s story of research and recovery” by Karyn Seroussi. The author is one of the pioneers of the GFCF diet and her son has fully recovered from autism with the GFCF diet and some other supplementation (particularly yeast treatment). It’s a little out of date when talking about supplementation, but still one of the best books I’ve ever read about the diet.And yes, a lot of ADHD kids have sensory integration issues too. Hair washing and dressing/clothes are common issues for these kids. Another common sensory issue is food – not wanting to eat certain types or textures of foods, or self limiting to only a few foods and refusing others. They could also not want to get dirty or wet – not like finger paint, play doh, can’t stand to have hands or face dirty or wet, wanting to take clothes off if they get wet, etc. Also they might not like walking in sand, or touching grass, etc. They might cover their ears or freak out if something is noisy (blender, vacuum, alarms, buzzers, etc.).Sorry for the long reply! Hope it’s not information overload.MFPIx22008-09-24 15:35:01
September 24, 2008 at 4:22 pm #57074AnonymousInactivePlease do not apologize. I am always impressed by how much you know on this topic! Jackson’s only sensory issues seem to be washing hair, shower and getting dressed. Sometimes I think that it is more of a patience issue. Noise does not bother him and he loves the beach and getting dirty. Thanks again!
September 24, 2008 at 9:44 pm #57083AnonymousInactiveKatie,
I am glad things are going well for you guys with the new diet. I am sure you posted this somewhere else, but can you tell my what prompted you to go on this diet? I am just wondering because McKenzie seemed to react to gluten, soy and dairy, but I am wondering what specific things you saw that made you take it out. Just for when I do try to introduce these foods to McKenize. 🙂 Sorry…does that make sense?
September 25, 2008 at 7:21 am #57092AnonymousInactiveSure, Emily. Just to give you some background- I had tried a dairy/soy free diet for Jackson’s reflux when he was younger (about 9-10 months old). We did Alimentum formula, which for some unknown reason, he loved the taste of. His reflux actually got much worse! So, I just assumed he did not have any intolerances or allergies. He also never got bad rashes, had bad gas or had problems with his bowel movements. But, he was always pretty hyper and intense in his play time. I can remember when we had done the allergy free diet, he was soooo much calmer. When we gave him a milk based formula again, he acted “drunk” by it. I did not understand it, so I continued to give it. Jackson is now 13 months old. He babbles and makes alot of jibberish, but does not point or say any words. He is also pretty intense and hyper. I thought that the diet might trigger some language development and calm him down a bit. The diet can be used for all different reasons, but that was what prompted it for us. What are your issues?
September 25, 2008 at 8:05 am #57098hellbenntKeymasteram late- stickied this bcse very interesting- maybe put links to your original post, etc- gotta get to work yikes!
September 25, 2008 at 9:04 am #57099AnonymousInactiveJust wanted to add an update. In addition to the other observations, Jackson is really mimicking me for the first time. When I bark like a dog, he is barking like a dog. When I make my voice go up and down, he does the same. When I say cow he goes “c.” I realize that this would not be very exciting for a lot of 13 month olds, but it is bringing me to tears of joy! He has never done this and it has always worried me! He also handed me a few objects that he was holding when I said “give that to Mommy” and held my hand out. He never did that either! I am not sure if it is the diet, but I can tell you that he has made pretty incredible strides within a little over a week. I do not believe that it is coincidental!
September 25, 2008 at 9:06 am #57100AnonymousInactiveMy other posts on this topic can be found at:
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klmccart2008-09-25 09:07:16
September 26, 2008 at 12:03 am #57137AnonymousInactiveKatie – that is so exciting about his mimicking you and attempting to verbalize more! I doubt that it is coincidence too. Especially since you might have seen some withdrawal at the beginning. We saw immediate language improvements when Ben started GFCF too, but he was much older than Jackson – 2 & 1/2 at the time. I totally understand how it can bring you to tears! I hope it continues, whatever the cause.
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