What should I look for when there's a diet infringement?

April 8, 2001

Hi, I hope it's not obnoxious to post this again, but I only got one

response and I am really in need of answers. Thanks!

My son, age 3.9, has been gf/cf since March 3. Dh did let him eat a

very small piece of pizza crust the first week but since then we have

been consistent. I read labels carefully & if there's any doubt, I

just don't use a particular item. I've reviewed mentally all the ways

we could be messing up, and don't think we have. We are doing the

diet under the supervision of a DAN doctor and one of the reasons we

started this...although it was always in the back of my mind...was

that my son's behavior began to steadily regress since December. He

has not lost or forgotten skills, just getting more stimmy, more

talking to himself, rigid, easily upset and perseverative. This has

not changed since starting the diet.

Anyway, we had an infringement today. My son got hold of some

pretzels at a party when I had my back turned (changing my other

son's diaper). I don't know how much he had before I caught him.

My question: what type of indication should we look for that this

might cause a problem for him...especially since overall I don't

really see the diet helping? Does it mean anything that in the early

days of the diet, my son didn't seem to miss the stuff he couldn't

have but now is asking for bread and almost pounced on a piece of

cheese he saw? Does that mean he really is addicted to these foods

or just that he likes them and misses them? Also, do we have to

consider ourselves as being back at square one in terms of the time

we need to stay on the diet to determine if it makes a difference?

Our doctor wanted us to try for 3 months and see what happens...even

though he felt it was most likely that if it would help, it would be

evident before that. Do we now start over and go for three months

from today?

BTW, our doctor has not done any testing for peptides or antibodies

to casein or gluten. He says the tests are not always reliable and it

is a better indicator to just go on the diet...but then I read that

it could take a whole year to see results. After that much time, how

would you know it's the diet and not just maturity or other therapies?

I don't want to stay on this diet indefinitely without SOME indicator

that it makes a difference.

Thanks,

Donna

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