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GF and CF diets???? Shall I give it a go?

9 replies

Shugarlips · 13/05/2011 15:23

Hi all, my DS is 5 and diagnosed with AS in Feb 2011. Hoping to try out lots of things but I keep coming across GF and CF diet success stories. Anyone found that this really works?

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sickofsocalledexperts · 13/05/2011 15:42

It didn't work for me. Are there any indications that your boy can't tolerate wheat or gluten, are his bowels dodgy?

IndigoBell · 13/05/2011 16:00

I think you can do the sunderland test to tell you whether you should go GF/CF.

Here's an old thread on it....

sickofsocalledexperts · 13/05/2011 16:08

Has anyone ever done the Sunderland test and been told NOT to try a gluten free, casein free diet. Just interested.

silverfrog · 13/05/2011 16:20

we do gf/cf with dd1.

we had her Sunderland tested - it is the way to test whether it might work for your ds.

some indications that your ds might have an issue woudl be:

restricted diet (especially restricting to foods that ocntain gluten and dairy)
red flushed face/cheeks/ears after eating gluten/dairy
hot and sweaty at nighttime
manky poo or constipation
obsessive about foods containign gluten/dairy
pica (especially thigns like carpet underlay - gluten containing!)
atypical pain response (usually no notice of being in pain)

sorry, can't remeber anymore - try gettig Marilyn Le Breton's book (Diet, Intervention and Autism) from the library - she goes through it all in great detail.
it has worked wonders for dd1. a completely different girl. she was practically non-verbal, had no pain response, was unfocussed and dreamy, rages, tantrums, nightsweats - the lot.

within a month she was talking (slowly, bit by bit - it's not a miracle cure!), had an appropriate pain response, better bowel health (although this has taken years to properly "heal up" - we went gf/cf when she was 2 - she will be 7 this summer, and it is only in the last 6 months that I would say her poo is "normal")

most of all, it brought her out of her own world, and gave her the headspace ot be able to learn.

sickof: dh got tested (he is dairy intolerant, and has gut issues, so wondered whether gf woudl be a good idea for him). he tested minorly positive, but Sunderland recommended he didn't bother with a gf diet, as ti probably wouldn't be worth ti for him. he uses enzymes instead. dss tested too (gut issues!), and tested more strongly positive, but Sunderland felt they could not recommend such a huge change for him either, as he is not on the spectrum (they said their remit was to advise on spectrum related stuff). dss cut down on dairy for a long while, and also expanded his food options away form perennial sandwiches (lazy teen!) and did see an improvement in his bowel health too.

dd1 was off the scale... and I wish we could persuade dsd to test, as she is a gluten junkie (has AS), but she won't (I htink she strongly suspects they will recommend she go gf, and she cannot face giving it up - says it all!)

sickofsocalledexperts · 13/05/2011 16:41

What percentage would you put the improvements from ABA against GFCF Silverfrog? I know another pal whose boy is on gfcf put it at 15% the diet, 85% the ABA when it came to improving her boy. But I have another pal who believes so firmly in GFCF that she really doesn't pay much attention to the ABA at all (she does it, but doesn't really care too much as believes she is going to "recover" her child from autism via the diet)

silverfrog · 13/05/2011 17:01

hmm, interesting question.

we did gf/cf before we did any "proper" ABA (I say it that way, as all the backward chaining, reinforcement, asks broken into tiny steps was what I did anyway with dd1, and how she ever learnt anything - I wa sobviously not as efficient as an ABA programme, though Grin)

gf/cf gave dd the ability ot concentrate. she was switched off, stimming and mostly unaware of other people's presence except to use them as tools. you have met her - her sociability only came about as a result of gf/cf - the absoute joy she gets form talking (quite often gibberish Grin) to people - the desire to communicate for communication's sake, rather than the imperious demands-of-necessity.

she was unfocussed and dreamy - in another world completely (you know the theory, right? the addiction/high stuff?)

we could have done ABA with her in that state, but it would have been a longer, harder slog, without a doubt.

gf/cf allowed her to have the space ot learn. ABA taught her.

the % split has changed over time, I think. initially, she was os hyper-sensitive to so many different htings (perfumes, soaps, washing powder etc, as well as the dietary things) that cutting everythign right back (only neutral soap, no perfumes anywhere, only neutral soap-free washing up liquid - I even changed the dishwasher tablets! all one step at a time, and all double-tested, and she was reacting to it all. she used ot scream at bathtime - was a water-refuser. we stopped with the soothing chammomile/lavender bubble baths, and shampoos, etc - she stoped screaming. it wasn't the water (although she wasn't keen!) it was all the smells, and the itch of it on her skin.) so at that point, it would have been like 80% diet, and 20% ABA - the diet was everything in getting her to the stage where she could attend/focus/learn (it still needed ot be shaped up - she was an ants in your pants girl!)

but that has changed ove ritme - she doens't react as severely anymore. we still use neutral soap-free for bathtimes, but I can use normal dishwasher tabs, and can use PErsil again.

and when we travel, it no longer matters that she has a different cereal. or the week we spent in Disney - fantastic gf food eveywhere, but way more processed and preserved than she has at home (we are a pretty organic, lentil weavery household). even last year, this woudl have had an effect on her. this year, she did get a bit giggly if she had a sugar overload (eg too much maple syrup on her waffles), but bowel health was ok.

and, she has needed the ABA for control issues all along. now, she can tolerate a bit of goat's milk if cooked (I make her pancakes with it), and the odd bit of apple (previously fruit of the devil behaviour wise). so now, the percentages are reversed, probably - she needs the ABA more than she needs complete rigorous strict diet. but she does still need diet control.

EllenJaneisnotmyname · 13/05/2011 17:24

DS2 did the Sunderland test age 4 and came up as an extremely small spike for casein and a small spike for gluten. They recommended trying casein free first for 3 weeks as it leaves their system quickly and they didn't expect much of a result. No change, so tried gluten free for 7 months, also no change. Stopped that and waited 6 weeks, no change, so tried eye-q fish oils and got a significant leap about 5 weeks later. Sunderland people were very nice and always said the spikes weren't very high. So worth a try but don't bank on it. We did these diets with the support of our paediatrician and under the advice of a clinical dietician. You don't want to harm their health by missing out some vital nutrients.

Shugarlips · 24/05/2011 14:03

Thanks for your advice/suggestions. DS's poo has always been smelly and (this is gross) always sinks to the bottom of the loo. It's not buoyant at all. It is almost always a bit loose too. What do you think?

OP posts:
Shugarlips · 24/05/2011 14:27

Just googled it and have mailed Espa coz I didn't find much under Sunderland Test.

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