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gluten free diet - how long for results?

(17 Posts)
luckylady74 Fri 23-Feb-07 23:10:55

my ds1 has as and although he has no outstanding symptons, because we have a family history of bowel disease, we had his urine tested by the sunderland university autism research unit and they said he was gluten intolerant. i visited a nutritionist on their advice and have also limited his sugar and dairy. it has been 4 weeks of no gluten and there has been no significant change in his behaviour - anxiety/ understanding/ language and so on. Should i keep going or would i have seen an improvement? thanks for any replies!

Jimjams2 Fri 23-Feb-07 23:13:37

TBH I owuld have expected a change earlier. Even if initially it was a bad change. IME dietary things that work take days (as our most extreme example ds1 was headbanging concrete, we removed peanuts and within 3 days all the headbanging went).

What have you replaced it with? I'd also remove soy, MSG, and aspartame.

IN ds3's case (not autistic but leaky gut and IAG in urine) we saw a big difference on switching from cows to goats milk (again within days).

luckylady74 Fri 23-Feb-07 23:18:26

thanks jimjams - i've removed msg and asarteme, but i have been cooking with soy milk and he eats soya beans - so will try that -it's his birthday soon and i'm so tempted to make a cake with flour!

luckylady74 Fri 23-Feb-07 23:20:27

will also try no cow's as he likes goats milk.

Jimjams2 Fri 23-Feb-07 23:21:56

Try removing soy as well. I think this was the mistake I made with ds1 and cows milk. We trialed him twice, absolutely no difference, but I put him on soy. Lots of children with gluten probelms apparently have soy probems. Ds3 (NT) has the same urinary profile as ds1 (severely autistic). We had some concerns about ds3 (who was gluten free from birth). At 17 months we switched to goats milk and it was like the lights went on. within a wek pointing and talking- he;s 2 now and fine. We haven't banned cows milk completely- just limit it, so bread it made from goats mil and pancakes etc.

Jimjams2 Fri 23-Feb-07 23:23:31

I have a feeling that soya beans are OK (tofu etc). But perhaps remove for a week or so.

Seriously in my experience (and from watching friends) a good food removal result generally comes within days. If the change is minimal you could always try enzymes instead of gfcf.

Jimjams2 Fri 23-Feb-07 23:24:12

sorry meant to say have afeeling tofu etc is fine, but soya milk not can't remember why!

luckylady74 Fri 23-Feb-07 23:30:41

are enzymes a supplement? thanks for advice i will cut out cow and soya and see how we go!

Jimjams2 Fri 23-Feb-07 23:36:41

Not in the same way as others. You take them with food and they break it down so even if you have aleaky gut only small molecules will get through and so its kind of an equivalent too going gfcf without having to go gfcf. Some people do better both gfcf + enzymes, some do better just enzymes, some better gfcf.

2mum Sat 24-Feb-07 00:19:47

Ive been reading this with interest and was wondering what shops sell the enzymes? TIA

KarenThirl Sat 24-Feb-07 07:51:42

Luckylady, is your son OK with nuts? If so, try this recipe for his birthday cake, it's really really good!:



8 oz plain chocolate
4 oz butter
6½ oz caster sugar
5 eggs, separated
3 oz ground almonds
1½ oz brown rice flour
½ tsp vanilla essence
½ tsp almond essence
½ tsp baking powder

For topping:

5 oz plain chocolate
5 oz soured cream or greek yogurt

Note on ingredients:

The chocolate for the cake and topping should be good quality plain cooking chocolate. Don’t use Bourneville otherwise it will be too sweet. As for chocolate flavour cake coating – forget it!

If you can’t get proper essences then miss them out rather than using ‘flavouring’.

For the topping you can use either soured cream, crème fraiche, Greek yogurt or ordinary plain yogurt. All are OK, thought he first two are probably best.

Preheat the oven to Gas 4, 180ºC, 350ºF.
Line an oblong tin 8” x 11” or thereabouts, with greaseproof or bakewell paper. You can use a 10” round tin if liked.


1 Melt the chocolate and butter together in a large bowl over a pan of simmering water.
2 Meanwhile, separate the eggs – put the yolks in a small bowl and the whites in a large bowl.
3 Whisk the yolks with the vanilla and almond essences.
4 When the chocolate is completely melted, whisk until smooth, then remove from the heat. Whisk in the egg yolk mixture, then the nuts and flour.
5 Whisk the egg whites together until the foam turns to fine bubbles. Continue whisking whilst gradually adding the sugar until the whites are stiff and glossy but not dry, and all the sugar has been incorporated.
6 Fold the egg whites ⅓ at a time into the chocolate mixture with a large rubber spatula.
7 Turn the mixture into the prepared tin and bake for about 40 minutes. The cake always rises alarmingly and then collapses once you take it out of the oven. Leave it to cool.
8 To make the icing, melt the chocolate in a bowl over simmering water. When it is completely melted whisk in the cream or yogurt.
9 When the cake is completely cold, lift out of the tin, strip off the greaseproof paper and cover the top and sides with the icing.

Also, I've had ds on the gf diet since last July with no effect. Also reduced dairy and replaced with cows milk, have had him on a probiotic food supplement, no msg, aspartame, colourings etc - zero effect.

However, he's been really unsettled generally in that time so it's difficult to know if there's been any benefit but he's been to stressed for it to be obvious, although I do believe I would have noticed as most people report a very quick and obvious reaction. I'll be challenging the diet in a few weeks time but I don't think we'll be continuing with it after that, tbh.

Jimjams2 Sat 24-Feb-07 11:16:49

You can get kirkman's ezymes from nutricentre (who I just find impossible to deal with), or HNI ones from madimart (sorry don't have a link but should get on google). The HNI ones are in a vegetarain capsule so worth taking half an hour before food. Gelatin capsules, chewables or powder, can be taken at the same time

luckylady74 Sat 24-Feb-07 13:20:03

thanks jimjams
karenThirl - really lovely of you -he loves nuts - have added ingredients to shopping list- really interesting to hear your experience - did you follow a plan such as 6 months trial then see if a slice of bread has an impact? i'm at least going to get through the vast amount of gf fishfingers and rice milk that i purchased before i give up! please keep me informed on how the challenge goes.

KarenThirl Sat 24-Feb-07 15:34:59

I was recommended to give it about a year, so I'll be challenging just short of that. Yes, the idea is to give small amounts of gluten-containing food. So that ds doesn't suspect anything and consequently act accordingly, I plan to add some normal flour to his gf buckwheat pancakes and watch for sparks flying. I've been very, very strict with the diet so I know he's had no gluten at all (he eats only very plain foods, meat and veg mainly, no sauces or gravies etc so no hidden ingredients) so if the diet has had an impact I should see it. Will let you know though!

Enjoy the cake! I quite fancy making one for us but I'm feeling a bit fat at the moment so don't dare.

PeachyClair Sat 24-Feb-07 15:56:08

It took literally hours with Sam (something I have replicated with myself and am no longer as shouty as I was ) but BIBIC told us that if we didnt see a result after a year we could give up. The effects on Sam were hige and with me it seems to have sorted my panic attacks a lot so its worth a shot but doesnt work for everyone- have you tried salycylates???? That worked as well for ds1.

DS1 and ds3 (both on the spectrums albeit wildly different presentations) are both also reactive to vcasein, and have been dairy free since shortly after birth.

Vaguely trying (ie Dh works night shifts LOL) for number 4- who will hypothetically (very hypothetically grrr ) be dairy free and gluten free until at least 3, we can't tkae the risk again. I am dairy free too, and the difference with me is functiojning and not.

Jimjams2 Sat 24-Feb-07 16:35:33

They say a year, but everyone I know who has had it work found it works very qiuickly. I do know people who have tried a year, then given up, and no difference seen (although I think they all had "negative" sunderland results).

KarenThirl Sat 24-Feb-07 18:49:46

J's Sunderland test was positive for gluten.

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