parents- your experience with a gfcf diet?

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Last year I went on a gluten free diet for medical reasons and noticed a general lighter feeling in my mood. Things just didn't get to me as much as they had before. This past week, I decided to put the whole family on a gluten free/casein free diet to hopefully help my 4 year old AS daughter. After three days, we had an AMAZINGLY great day, with no aggressive behavior or outbursts from her. Then, the next day she was back to her usual aggressiveness. So I'd like to hear from others who have tried the diet and have stuck with it for some time. Is there a period of adjustment where one day is great and the next is not? How long until things level out? I truly believe that we all (4 of us in the family) will feel better for going gf/cf. I'm just discouraged by the morning we had today before school. I would love to hear how this type of diet has helped others, and also how things went in the beginning.

Most AS people don't have bad reactions to gluten and casein. Often, it can seem like it's working at first, but that's just a placebo effect. A gf/cf diet should only be followed through with if your daughter shows significant negative reactions after ingesting wheat or dairy. But most AS people will only get more irritable if you cut 1.5 food groups out of their diet without good reason.

Although we have never gotten onto the diet, I've read that you need to allow a full month before deciding how effective it is or isn't, because the body needs to adjust.

You can also separate the two components, for many AS that have tried it on themselves with success seem to feel it's the gluten that clouds the mind. Casien seems most likely linked to digestion issues. Totally unscientific, I am under the impression that about 1/3 of those on the spectrum find the elimination of one or both to be helpful.

Isn't this also the same diet Jenny McCarthy uses with her son, her "cure"?

My daughter is dairy intolerant and has been off dairy since she was 6 months old. One of her uncles and two of her cousins are diary allergic so there is a family history of dairy problems.

We tried a gluten free diet for a few months but it made no difference.

Well, yes, but the fact that it isn't a cure and the fact that Jenny is big on it doesn't change the reality that some AS find it helpful to their thinking to eliminate gluten, and some AS find they have less digestive issues if they eliminate casien. She didn't invent the diet, and she wasn't the first to promote it for ASD. Fortunately, because communities like this have high functioning subjects testing things on themselves, we can refine the concept and make note of exactly what it will and won't do for a percentage of affected individuals. It doesn't help everyone, and most who find it effective only need to eliminate one of the two components.

I purchase gluten free products for my girl because a blood test showed she was allergic to wheat amongst some other allergies which rated extremely high. She will not gluten free bread and so she still does consume wheat. The wheat allergy was among the lowest score of being moderate.

DW, I didn't mean it as a slight at all. I'm more disturbed by her tossing around the term 'cured' like her son was broken or sick when that's not the case. As I said in another forum on a similar topic, I don't consider my son to be broken or sick, I look to certain things like supliments or diets as helps or easements but never as a cure because he doesn't need a cure, he is who he is and I love him for who he is.

Agreed.

I guess I'm so used to "we hate Jenny" threads elsewhere that I went straight into defensive mode, of a sorts. I don't agree with her on pretty much anything - she has trouble with nuance - but I've found people can't just toss out diet changes as potentially mitigating.

Thanks for sharing your responses. I have noticed that she seems much more relaxed on this diet. Her favorite foods were full of gluten and casein, but thankfully she hasn't minded switching at all. I have noticed that I seem more able to "go with the flow" when I am on this diet, little things don't seem to upset me as much. For example, for the last 6 1/2 years I have always bought gas at the same gas station, even if I was closer to another one. This week, I went to a new one and was able to laugh about the routine I had kept for so long. I agree that it is upsetting when people use the word "cure". I still notice my AS traits and ways of thinking. But on this diet I just feel more at ease with it all. Hopefully that type of effect will last for both my daughter and me.

we tried it, but it increased anxiety levels here- mostly because the foods son & hubby love to eat the most are dairy and carbs