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going back to gluten?

(13 Posts)
sphil Fri 01-Aug-08 22:38:54

Last day of our holiday today - whole family sitting in cafe having breakfast. Lovely sausages, bacon, thick white toast etc etc. And DS2 eating his horrid gluten free bread and rice cakes.What really got to me was him piping up 'toast?' at one point.

So I'm thinking - bloody hell, this child has a restricted enough diet as it is (allergic to dairy, eggs, berries, nuts, soya). We are quite a 'foodie' family in that a lot of our family and social life/ outings etc revolve around food (!) Is it fair to restrict him even further by denying him gluten? I think he might even order stuff in cafes now - but he can never eat ANYTHING when we're out, except chips. It just seems to exclude him even more than he's excluded already.

He has been gf now for two years, following a positive Sunderland result. We saw no really dramatic changes but his sleep has improved no end - he still wakes at night but we rarely get any hyper behaviour. He's made good progress in all areas in the last two years and his eczema/asthma have both improved hugely. But would all this have happned anyway, with maturation?

I would really like to hear if anyone has experience - good or bad - of stopping the g/f diet. Or advice as to whether I should do it or not. Am very torn!

rachaelsara Fri 01-Aug-08 22:44:20

bump for you

cyberseraphim Sat 02-Aug-08 07:55:11

I never started it. I think you have made the right decision for your son and your family. My personal belief is that developmental maturation and the hard work you have done is what has made the difference. My DS started talking to strangers (mainly in bakers) just to get hold of goodies !

sphil Sat 02-Aug-08 08:16:55

Yes, exactly Cyber - I wonder whether the advantages of a wider diet outweigh the advantages of being gf. But I haven't made the decision yet - I'm very worried about a return to more hyper behaviour, especially at night! And I do have some confidence in the 'leaky gut/immature immune system' theory - it seems to fit DS2 quite well - so am I being daft to reimtroduce something that may well be toxic to him?

cyberseraphim Sat 02-Aug-08 09:03:33

I can't answer that as I don't believe in the theory about guts etc so it's probably not one for me.

cyberseraphim Sat 02-Aug-08 09:06:37

Sorry - just realised you haven't decided yet - I was running ahead a but in the first reply

drowninginlaundry Sat 02-Aug-08 09:39:50

What about trying enzymes to get around the gluten sensitivity?
DS1 had a positive Sunderland result as well for gluten, we went gf and noticed an initial improvement in his behaviour, I and DS1 got so fed up with the horrid tasting food so we switched to AFP Peptizyde with no adverse effect whatsoever. When we started the enzymes we just introduced gluten straight away, and DS1 started eating like a horse... I mean EVERYTHING, asking for seconds! It might be worth giving it a go - it works for some as an alternative, but not all as far as I understand. We also give probiotics in powder form daily which has also done a lot of good.

sphil Sat 02-Aug-08 17:46:00

I had been thinking about enzymes DIL - thanks for that link. The effect on your DS is very encouraging - what sort of initial improvements did you notice in his behaviour when you took out gluten?

sphil Sat 02-Aug-08 17:50:45

Sorry DIL - what probiotics do you use?

sphil Sun 03-Aug-08 08:54:13

Me again, bumping for Sunday! Would like to hear from anyone whose DC has had adverse effects from a return to gluten.

silverfrog Sun 03-Aug-08 10:13:55

Hello, I hope you had a nice holiday smile

Both dds are gf/cf (dd2 just in case atm) - dd1's sunderland gluten result was way off the scale so we thought the diet was worth a try.

I have had a moments of wondering whether the improvements were due to the diet or due to general maturation/other stuff (supplements, ABA etc)

However, whenever dd1 does have diet infringement through carelessness (or her stealing a biscuit at pre-school wink) then the effects are clear - she starts blanking out again - just gazing through windows and her concentration goes downhill, and ability to focus etc, and as the gluten leaves her system she has tantrums etc as she withdrws again - the severity depending on how much she ate in the first place! She also gets the physical symptoms - shadows under eyes/flushed cheeks/nasty nappies.

Last term at pre-school I suspected she was getting hold of something somewhere (didn't manage to track it down, but post end of term she has improved no end) and coincidentally we had to have her SIgA re-tested, and it has dipped to an all time chronic low, which I think is connected to the as yet unfound source of whatever she was finding at pre-school - one to tackle in September!

dd1 is extraordinarily sensitive, though, and reacts to soaps/shampoos/household cleaning stuff/paint at pre-school (I think) so it could be another substance affecting her, not gluten.

If you are wanting to try your ds2 back on gluten, with enzymes, it is surely worth a go. It's a bit like everything else we do - no hard and fast rules that will suit everyone, and you have to do what is best for you and your family. If the trial back on gluten doesn't work out you can always go back to GF, after all. You may find that your ds2 is absolutely fine back with gluten and enzymes, and that would make life so much easier.

drowninginlaundry Sun 03-Aug-08 15:30:16

When we introduced AFP Peptizyde, DS1 went very hyper and stimmy for a couple of weeks, but I had been told & I had read that this could happen. After the two weeks, he became a lot more alert with more eye contact and like I said, he started eating loads (or maybe he was just thrilled about being allowed pizza and cake again!).

When we first took out gluten again he did become more alert, eye contact improved etc, but it was not permanent and we were also doing a full-on ABA programme at the time, so I am not sure whether there really is a gluten problem, however he has always had a sensitive tummy so I think the enzymes and probiotics at least help him feel better.

I order the Houston Nutraceuticals enzymes from Mandimart

We also tried No Phenol as I was convinced that he was sensitive to phenols, interestingly the new enzyme had no effect on him whatsoever - initial hyperactivity or subsequent behavioural improvements so we ditched it.

for probiotics we use Acidophilus from BioCare in powder form, I just give it together with the enzymes mixed with a bit of apple juice in a spoon.

sphil Mon 04-Aug-08 00:14:03

Thanks SF and DIL. Yes we had a great holiday thanks! I think I might go for it you know - it's worth a try. On the other hand Ds2 is a bit like your DD1 Silverfrog - sensitive to lots of things, food and environmental, so I may regret it!

Am going to contact Treating Autism to get their opinion. I know Mandi is a big fan of enzymes (was on a course with her once).

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