Have I imagined the awful affect that gluten has on DS???

[homemama]

My MIL thinks so! I wish I hadn't listened to her and given in yesterday as the last 24h have been a nightmare.

After 6wks without it, he had weetabix for breakfast followed by pasta and bread for lunch. By teatime, he started acting a bit hyper and by bathtime he was what I can only describe as manic. He was literally clawing at the wall, sofa and carpet and at himself. He then started trying to bite everything and ended up banging his head repeatedly off the wall. By this point I was in tears. We couldn't get him to sleep at 7 and he eventually fell asleep at 1.30. This has continued today but to a slightly lesser extent.

Went to the doctor this morning as I'd been up all night sick with worry but he agreed with MIL that there is no evidence that gluten can affect behaviour. He suggested colic!!! DS is 10mths FGS! So I guess I'm asking if anyone else has experience of this so I know I'm not going mad.

BTW, we started giving him gluten at 6mths and by 8mths I thought he was constantly hyper (though nothing like yesterday) I posted on here and someone suggested removing the gluten. Within a week I saw a difference though nobody (other than DH) believes me.

TIA

Not experienced it myself - but if he is better without - well that's certainly proof it doesn't agree with him !

Can you ask to be referred ?

This is EXACTLY how ds1 is on gluten. The day after gluten exposure we get 24 hours of headbanging. You can get a urine test done for IAG at the autism research unit (having IAG does ~NOT mean that someone is autistic-it means they have leaky membranes- lots of "normal" people have it as well- but does suggest gluten would be hard to tolerate).

Cut out sweetners and msg as well- if he does have leaky membrtanes he won't be able to tolerate them.

Let me know if you want more info about the urine test.

Thank you so much Jimjams. What is IAG? If it's a recognised condition with a urine test why was my doctor so dismissive? It def was not colic. He was not clutching his tummy in pain. He really was manic in the true sense of the word.

I really would appreciate info on the urine test. I know it was the gluten.
Thanks

Doctors don't know about it (and it strays in Andy Wakefield territory - almost- so they won't get to now about it).

Basically you contact the University of Sunderland - ARU (autism research unit). They send you sample tubes- you collect the first urine of the day - freeze it overnight- send it off and they analyse it for you. I think it costs around £50 although they do do it fro free if people can't afford that (IIRC). You dont need a diagnosis, they just collect the data- there are quite a large number of people with IAG in their urine who have no symptoms at all. Basically having IAG suggests that your cell membranes are leakier than they should be- gluten when not completely broken down will pass into the bllod stream if your membranes are leaky. If not completely broken down it has an opiate type effect- hence the headbanging- an overdose of opiate type substances!

mentions autism and analysis , but they'll happily analyse non-autistic children/adults. I'm thinking of asking them to check out ds2's (he's got no developmental problems at all) just because he's had gluten for a year now and I want to check it can't cause aproblem.

Thanks. I will definately contact them. You mentioned sweetners and I've just realised that I gave him ibuprofen yesterday morning too (he's teething) Usually he's had calpol but chemist had run out. Noticed it has saccharin (sp?)so he seems to have had a double whammy yesterday.

I'll stick with gluten free for the moment and see what the test says. Thanks again for your help.

oooh yes- gave ibuprofen once and never again. Best bet is the sugar containing calpol - although it still contains sorbitol which isn't great.

many brands of ibuprofen also contain wheat starch so could be an added possibility. At 6 months my ds2 had a huge allergic reaction (hives, vomiting) to Nurofen (ibuprofen) for babies. We were not yet aware of his wheat allergy as he hadn't had any as yet (tested later). Have since been told that many medications contain forms of wheat starch etc so you may have to keep an eye out for it.

if he does have leaky gut may be worth trying dairy free too but sunderland urine test will tell you if he can tolerate dairy [casein] or not.

Thanks mymama and ruty. The dairy thing is interesting as at the same time as we cut out gluten before, we also cut back on his milk as he was having more solids. I'm now wondering if this did him some good too.

We will def be having the test done. I'm trying not to think about the autism link as that's been on my mind a little since someone suggested it last month. But since then he's started clapping and has pointed using his index finger four times in the last 2wks although still more often with his whole hand but I'm hoping this is the start.

Thank everyone for your advice. I've never seen him like that and it scared the hell out of me.

If he's starting to point at 10 months he 'aint autistic

jimjams-thanks

Just sent an email to UoS ARU. Hope to hear soon.

my 12 month old has just started pointing the last two weeks on holiday. He's been on gluten free casein free diet since Sunderland test. Can't tell you how thrilled i am.