Talking to others and the GFCF diet

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I took our son off of dairy in October and saw an immediate increase in energy. We saw an allergist last month who said he was allergic to all kinds of environmental things like pollen, mold, etc. and said that we should try a Gluten, casein, and sugar free diet. He's been on it for like 3 weeks.

Now all of a sudden, he is talking to his classmates, talking to their parents, talking to our neighbors...having actual conversations and answering questions. I haven't heard him ask any reciprocal questions, but he is off with the other kids most of the time now so I'm not sure what he is saying. But the affect behind his conversations is very relaxed, very participatory, if that's even a word. This is very different from the clingy child that I once knew who would get very anxious and visibly stressed around other people.

A few weeks ago, he never said a peep to anyone but me. He started playing with the other kids at school in October, like monsters, chase, etc., but he never talked to them. Now he is saying all kinds of stuff, including some not so nice stuff like, "get out of my way." But also, talking about toys, birthdays, etc. not just his obsessions.

I would love to hear from other parents of aspies about when your kids started talking to others. Also, what is the quality of their conversations? Is this typical for them to come out of their shells around the age of 4?

I was attributing my son's progress to his new behavior therapist, who has done amazing things with him in the last 6 weeks or so, but I am also noticing huge changes in another child, whose mother told me to try the GFCF diet. This child is HFA and is much more affected than my son. He has language delays. When I first met him, he did not look at anybody, played by himself, had very repetitive movements with his fingers and jumped around quite jerkily. Very obviously on the spectrum to any observer. Yesterday at the park, he said hi to me, came and sat next to me on the bench, said, "come here," to another child. He doesn't even have a behavior therapist in the home right now, only at school. Yet he, too, is making a lot of progress all of a sudden. He is suddenly very interested in playing with other kids. This seems very un-autistic to me.

Could it be the diet? or is this just the normal progression for PDD-NOS and HFA kids?

I have not tried the diet, but I have noticed that with L he will often make cognitive jumps. He will be behind in one way or another, then suddenly one day it will "click". I tend to hink of his AS issues as a developmental delay in many ways. Perhaps this is partly what is happening with you son.

I havent tried the diet yet but I have heard good things about it but your lucky you got suck a quick response I was at an autism question and answer session and some mom was using it on a non verbal child and he did say one word but shes been doing it for several months with little result but some drs say it can take years to see responses from it and it doesnt work for every child but it cant hurt to try it its not like your using some type of experimental medication or something its just removing items from the diet. Now did you get the diet from your dr. or did you find it in a book is there a list out there that has the items on it that should be removed from your childs diet. I am interested to see. Thanks Kim

I think that this is the big question -- and I don't think that anecdotal reports can ever give a good answer for a lot of reasons:

1. The improvement could be due to a natural developmental progression. My son's social skills have significantly improved in the last year also, sometimes suddenly. Well, he has never been on GFCF diet. Imagine what I would be tempted to think if I (by chance alone) started him on a GFCF diet just before one of his sudden improvements.

2. The improvement may be due to some other therapy that the child is getting. Most kids on the spectrum get a lot of therapies of various types. So, if a child's skills improve, how can we know which therapy should get the credit?

3. Most human behaviors (good and bad) fluctuate and change over time. Parents are most likely to try something new (like a GFCF diet) when their child is at his worst. Well, when someone is at the lower end of his normal range of functioning, he has nowhere to go but up. So, it is very likely that a child will improve after the parent tries a new therapy, even if the therapy itself is totally useless.

4. Most parents don't want to believe that they spent money and time on a therapy that didn't work. So, human nature will be to sing the praises of anything that you have already tried because it makes you look and feel smart for having tried it.

For all of these reasons, I think that carefully controlled studies are the only way to find out whether or not things like this work. Unfortunately, I am not aware of any well designed controlled studies that have looked at this in detail. So, I think that the best answer is that "No one knows" whether or not a GFCF diet is effective.

An allergist recommended the diet when we went to figure out why he was coughing for 9 months. He discovered that he was allergic to almost all the environmental allergens- pollen, mold, etc. When I mentioned his dx, he said to try a gluten-casein-sugar free diet because allergies tend to pile up on top of each other. We had already eliminated dairy the month before because another mom saw good results with the GFCF diet at school. I started with dairy because I was too overwhelmed to do the whole thing.

The allergist also put my husband, who is definitely an aspie, on an additive-preservative-artificial coloring free diet because of his life-long stomach issues and the fact that he is also allergic to environmental allergens but is not allergic to any foods. So the whole family went on a gluten-casein-sugar-additive-preservative-artificial coloring free diet.

What is remarkable about that is that we saw pretty instant results within a week. My husband all of a sudden was sleeping less and had a ton more energy. He also seemed a lot more lucid and actually was able to concentrate on our son for extended periods of time.
He usually has to rest quite frequently during the day, and he went on a bike ride and still had energy to finish the day without a nap. Didn't really solve his stomach problems, but he only sticks to the diet in spurts.
He relapsed after the Thanksgiving meals we had, went back on and saw another burst of energy, then relapsed again because he eats very irregularly and tends to cheat when he is at work. Plus he and I are polishing off all the leftover candy from my son's bday party. /:(

My son also started to run around and shout, which is very unlike him. He used to be very, very, very quiet and preferred stationary activities. Now he is quite energetic.

Anyway, I suspect eliminating dairy had the most to do with the progress, as my son will get a cookie from people here and there and not have a reaction but had some cheese pizza at a party and had stomach problems the next day. We also saw the greatest change in activity level after just eliminating the dairy. But the behavior suddenly improved remarkably with the whole diet.

I guess my original question for parents of aspies is, what is or was the quality of their conversations with peers and adults at the age of 4? Do they participate in back and forth conversations and answer questions? Did you ever hear them ask other people questions about non-special interest topics? Are they able to switch topics to keep up with the flow of the conversation? Do you always notice a rise in pitch or an odd voice quality, or do they sometimes use a very calm, regular voice? Not to say that my son does ALL of these things, but just curious about how much progress he is actually making and is capable of making.

Hello

That sounds so interesting now I know one of my aspie boys doesnt have a gluten allergy I had it tested by blood work but he does have bad allergies Im allergic to everything under the sun. I did when they were younger cut out juices with additives we do not have soda in the house they are only allowed that for a special occassion . Is the diet listed online as to a food list that contains all the additives and perservatives Id like to try to adjust them a little at a time. Like what do you give as a milk substitute ? Then what type of foods contain casein and such like that and where do you find substitutes for them I am on a tight budget and I had weightloss surgery lap band and things they eat sometimes I cant eat.

Now for your husband with the stomach problem if hes drinking like a lot of seltzer or carbonated beverages that can cause a ton of stomach problems I cant drink it anymore because of my surgery and it helps with reflux. Certain foods hurt my stomach like Im allergic to wheat so its hard .

Im sorry to ask so many questions but if Ic ould do simple things Id like to try

Hi momof4,
Wow, it sounds like you have your hands full. Well, here are some things that I have learned along the way:

Well. first of all, not everybody who can't digest gluten is allergic to it. It is pretty hard to digest, as is the casein in dairy products and also soy. But basically we can have spelt, quinoa, corn, and rice. No wheat, barley, rye, or buckwheat. I have found lots of gluten and casein free things at Whole Foods, which is rather pricey but very convenient. Otherwise, you kind of have to make a lot of things yourself, like breads, pancakes, pizza crust...

The casein is basically all cows milk products. We use Earth Balance buttery spread, Enriched rice milk, almond or other nut milks, and occasionally like a tofu or almond cheese, but those have other additives in them so I only use them for pizza and tacos, basically.

A lot of the ethnic foods are completely gluten and casein free, so we do that a lot- Mexican except for the cheese, Chinese, Japanese, Indian, etc. You can find corn tortillas that are made from just corn, lime, and salt. My husband has to have free-range and organically fed meats. They even make very simple uncured hot dogs with very few ingredients.

We have never had sodas in the house, although he's had them at parties. Our son only gets orange juice now because we cut out milk and give him the calcium fortified one for breakfast. Otherwise he has Enriched Rice Milk or water. It is actually not that hard to do if you have a good market around. I think of it as making foods that you would have if you lived out in the jungle or something- very basic.

Thanks for your input its good to hear of items that you are and are not supposed to have because im just hearing about this diet . Its tough for me financially right now because I had to have surgery and my insuracne didnt cover it so im in debt up to my eye balls and this special diet seems more expensive to do but I will try cooking differently . What do you do for like hamburg, turkey things like that do you not use these products anymore. I know I prob sound dumb but what do you use for those to substitue. Thanks for all your help

Hi,

You can totally use any of those meats because they do not contain any wheat or dairy additives, except in the case of hot dogs and deli meats. My husband has to have free-range organically fed, but that is not a part of the GFCF diet, so you can use any hamburger, turkey, etc, that you would normally use.
You will have to replace the bun with something that doesn't contain any wheat flour. Also, if you use cheese, you can use an alternative cheese- tofu, almond, vegan, etc. If that is too hard to do, you can always have the patty separately and serve it with rice (brown, if the kids need the fiber.)
What my husband really likes is steak, pork chops, etc, served with rice and a veggie. That is a good basic meal without any gluten or casein, and it's very easy to do. All you need to do is salt and pepper the meat and bake it or broil it.
You can also do the substitute the rice for potatoes or corn. Last night I cut 2 potatoes in wedges, covered them with like 2 Tbsp of olive oil, 1/2 a tsp of salt, and 1/4 paprika, baked 30 minutes per side, and they were delicious!
You do not sound dumb at all. Believe me, I didn't know any of this until I started pouring over recipes and doing a lot of research.

Thanks all of this is new to me just so much info out there on this I cook a lot with potatoes and vegs. we eat chicken,burgers,turkey,we eat hot dogs but I ll have to really read a lot of labels to find the right kind of hotdogs and such. Are there any gluten free buns and such out there do you know or just going without them. My kids like buns with there buns and baked beans and stuff.

I did buy some gluten free buns once from the Freezer section at Whole Foods, but I have only seen them once. They do not look like regular buns at all, though. They looked more like a scone, but they held up pretty well and tasted pretty good considering they were frozen.

Bread and cheese are the biggest challenges with this diet for me. We are lucky to have a GFCF bakery near us, because we live in a big city. Corn bread is pretty easy to make. You just need gluten free flour and xanathan gum instead of regular flour, soy or rice milk instead of regular milk. There are usually recipes in the package of gluten free flour. It does take a little bit of time to read through, plan, and then go back to the market to gather the ingredients, but once you make it the first time it is as easy as a regular recipe.

Thanks I appreciate the assistance I hope to clear up some financial stuff in the next few months then start with the diet slowly and introduce new foods alittle at a time my boys dont like change too much an dI have tried new things and they dont like them. Of course one of my sons is taking health class right now and they are talking dietary stuff on fats and said i used a little gravy with the meatloaf so he wasnt going to eat it so I said well then your going to be really hungry thats whats for dinner.