Calling everyone with ASD kids doing GF/GFCF - question on regression

[kitegirl]

I am puzzled, and was wondering if anyone has any thoughts on this: DS1 (3, ASD) has been doing great since we cut gluten out of his diet three months ago. His eye contact got better, speech got clearer, he has been more 'with it' and aware of us and everyone else. We had been trying to potty train since December but he kept pooing in his pants several times a day, but with the diet we finally cracked it. Well, sort of - we had our first day without accidents, then last week we had three consequtive days without accidents, and he went from pooing several times a day (like, five!) to once a day and in the potty.

However, something has happened as it feels like we are back to square one. He is completely spaced out, no eye contact, lots of stimming, avoidance, tantrums, he has lost his appetite (which he discovered on the diet - couldn't shovel food in fast enough) and has eaten practically nothing since Saturday. He is pooing non-stop - yesterday eight times, in his pants, and his poo is runny. Do you think this sounds like he had some gluten by accident? We had lunch in a restaurant on Saturday, and we did check with the chef - but I am guessing that he was either ignorant or just thought 'whatever'. If this has happened to your kids, how long does it take to heal? Or could it be something else? Thanks!

It does sound like he's had some gluten - we've had minor versions of this when DS2 has managed to steal bread. Mind you, going gf hasn't had such a dramatic effect on him as it has on your DS - I'd say it's a good sign, iyswim!

I think I remember that the stuff we got from Sunderland mentioned that children can experience a second withdrawal period some months after going gf. Will try to dig it out for you.

Is he sickening for something?

Hi, I'd think that it could be that his meal at the restaurant wasn't 100% GF, the chef, might have thought it was, but it takes ages for us to know these things, as we know gluten hides in lots of foods, but he wouldn't have thought so. Hope it will be better soon.
My son was on a strict diet for over 2 years, last august, unfortunately I started being lazy and gave in to some forbidden food, and god am I regretting it now. My son is at the moment being rather imposible, and since I am now a single mom, I can't go to shops without him, specially on school hols, so kinda am in a place now where it is either I refuse to buy what he wants and put up with a HUGE tantrum (he is almost 9, so imagine the scene) or give in and feel sh## for having spoilt 2 and half years of efforts and pretty good results (he was never an angel, but these days he is nearing devilish behaviour, stereotypes x10)... Keep going with diet, and avoid restaurants, or maybe you could give digestive enzymes a go (for when you go to restaurants).

Have reread the Sunderland stuff but can't find the reference - must have been getting muddled! What did he eat at the restaurant?

thanks for your posts
He had a beefburger patty and homemade chips and ice cream. Could have been contamination. We are doing a bit better now, only two accidents yesterday, and stimming has calmed down (thanks also to my wonderful ABA team!) so it must have been food. It's extraordinary. Hopefully stupid MIL gets the message now - she thinks we are daft.

Maybe breadcrumbs or some sort of filler in the patty?

Can I ask, Kitegirl, how do your ABA team reduce stimming?

sure!
DS1 does 30 hours a week. His favourite stim atm is wrapping string around his fingers. He is very imaginative in finding things to wrap around his fingers - eg plug chain in the bathroom sink! We just block it, and redirect him to something else and appropriate play, with lots of reinforcement. He's a lot easier to redirect these days, and now if he is stimming it's mainly when I am on my own and busy unloading the dishwasher/feeding the baby/cooking lunch etc so haven't got time to distract him with one on one attention. Another one is grinding his teeth, so I am massaging his gums and it seems to do the trick.

Thanks Kitegirl
DS2 has just started clothes chewing, but as you say, it's mainly when he's not occupied elsewhere, eg when I'm driving him somewhere. I had thought about getting him one of those chewy things to save his sleeves, but hs stims tend to be quite transitory and i don't want to embed a love of chewing, iyswim!