changes to diet - worse behaviour!!!

[hungryhippo21]

ds1 is awaiting dx of asd he is 2.6 I have cut out gluten in his diet since mon.with the little he eats near enough every meal seems to have gluten in it but yesterday and today his behaviour is worse. Has anyone else tried cutting things out and found they got worse or is it worse then better (please say yes)

not cut gluten out, but I gather that it's common to have a temporary worsening of behaviour as a withdrawal effect when you start cutting gluten out.

This can def be the case - hold on in there.

i second and third aforementioned opinions: DS5 had horrendous withdrawal for about a week , exhibited headbanging, self harm, screaming, it was awful to watch - but it was SOOOOOO worth it, he is so much better now its unbelieveable the difference!

Incidentally i took DS2 (11y) off gluten too and he cried and shouted for a week, and he is much better now too.

Absolutely stick with it!

From what I've read it's very common for behaviour to worsen before it improves. I posted this ages ago, but Marilyn Le Breton (author of Diet Intervention and Autism book) says:

"If you are worried about what might happen during this period of withdrawal, do try to keep it at the forefront of your mind that an adverse reaction to the removal of gluten, casein, MSG and aspartame from the diet means that your child is addicted/intolerant to these substances. Any such reactions are only serving to prove that you are doing the right thing by removing em from your child's diet.

If you are staggering the withdrawal of foods from your child's diet (ie taking out casein first before the other substances) you will be unlikely to notice any withdrawal symptoms, as your child will still be getting their 'fix' from gluten. It will be when you fully implement the gf/cf diet that you will notice the withdrawal symptoms, but these will be less marked than if you remove gluten and casein at the same time.

Some of the withdrawal symptoms that have been reported by parents are (please remember that it is highly unlikely that your child will suffer from any more than a few of these):

• diarrhoea, constipation, stomach upset, anxiety, clinginess, bad temper, agitation, distrubed sleep pattern, lethargy, hyperactivity, running a temperature, night sweats."

I was also told by the autism research unit at Sunderland that it may take several months for improved behaviour to show itself after gluten removal (in a typical three year old) - and the older you are, the longer it takes for improved behaviour to show as there's more gluten in the system to work it's way out. Milk works it's way out much faster.

can i hijack a bit, please? we've been reducing the amount of gluten in ds's diet, though i'm sure it's not very effective to use half measures like this. anyway, he had ordinary bread for the first time in a while today and i was really shocked to find his ears were burning this evening. i'd never noticed this before (his hair is quite long).

does anyone have any advice on how to go about getting the sunderland assessment done? and what kind of advice do they give you? for example, will they pinpoint a specific intolerance? thanks!

to add to what Catski has said, i noticed a marked improvement in DS5 after 5days of removing casein. however it has taken 7mths for a noticeable healthy difference (ie. more energy, more alert, better able to digest food (TMI!), loss of diarrhea (YAY!), finally gaining weight (YAY!!!)and he seems to be learning new things easier too)to be seen after removal of gluten. DS5 is currently 2.9y, and we can tell within 20mins if hes eaten something he shouldnt have.

Here is the link for the sunderland autism research unit which give you the details on getting a urine analysis done:
centres.sunderland.ac.uk/autism/urinary-analysis/

Costs £60. They will advise you if there are significant levels of gluten and/or casein in the urine (which does not necessarily mean an intolerance). They believe that a significant number of people on the autistic spectrum have high levels of one or both and that removing gluten and/or casein (milk protein) from their diet can help. You need to bear in mind that it's still experimental.

You will need to email them for a questionnaire first and then they will send the kit for taking the urine sample. They were open to taking phone calls before and afterwards if you have additional questions.

thanks for the link and the information!

thanks for that misscutandstick you scared me - he does not need more energy he has spent the morning pushing his table up and down the room at break neck speed for the entire purpose of making me chase him and as for gaining weight he is like his mummy and daddy he certainly doesnt need any extra. He has goats milk now but still has i yoghurt and one babybel a day I dont think milk is a problem as he is not bothered whether he has it but anything bread like he wants - if I have a bowl of branflakes if front of hime he basically helps himself stashes his lot and carries on taking them till they are all gone. How many kids can you get to eat bran flakes??? Its good to know though if the behaviour does change that its probably the thing affecting him already he is going poop once a day instead of nothing for a couple of days then maybe 4 in one day (sorry if tmi)
Quick question do cornflakes have gluten in????

Hi

We cut out gluten and casein (For DS aged 4)and had bad reactions too. You could try giving activated charcoal and epsom salt baths, and maybe some gentle massage with essential oils. Hang in there, it will get better. Promise.

I decided last week to cut out bread and pasta etc, partly cos i felt really lardy and partly cos i felt like i have a rock just under my sternum after eating... anyway, felt like sh*t for 6 days. Just starting to feel better now!
If you think about it, only in the last 10,000 years has man been a farmer/cultivator. Before that we were hunter gatherers... so best diet is meat, fish, fruit and veg.
Check out website Weston A Price foundation.
If your child reacts to food and has asd/adhd/excema/asthma or allergies you may want to read 'Gut and Psychology Syndrome' By Dr Natascha Campbell MacBride. The author has an asd son who is now in secondary mainstream and doing GREAT!

x

hungryhippo, the cornflakes themselves do not have gluten in, but often popular brands have malt flavouring (or similar) in, which can be derived form barley (which does have gluten in).

so it is best to go for ones that don't have any added extras in (ie just corn and a bit of sugar)

that would be a big YES - unfortunately. The ONLY cereal without gluten (excepting for the special gluten free ones) are rice crispies, ricicles, and cocopops. You really do have to remove EVERY sceric to benefit, and its hidden in LOADS of foods - its even in some ice-creams! be careful too of ALL prepacked meats and sausages (if it doesnt specifically state gluten free, then it ISNT!) also avoid all sauces (ie gravy, sweet and sour etc), including the coatings on frozen chips. McD's chips are fine (as are their burgers) but NOT Burger King or KFC.

SOrry to have scared you, in DS5's case it was a good thing as he looked permanently tired and practically 'hungover'... but i really do think that it was the milk causing that particular problem.

As for toileting, i understand completely. Milk constipates DS5 quite badly, and the gluten gives him violent diarrhea... so we had alternating constipation and diarrhea: nothing for 4days, pebbles, then 4 or 5 exploding times in as many hours... and the stench (please note thats not the green of envy!) could knock you off your feet!

I agree that it could certainly just be a temporary withdrawal. One thing to be aware of, when going gluten-free you can wind up using a lot of rice products. Not a problem unless your child reacts to complex carbohydrates and needs to be on the Specific Carbohydrate Diet.

I haven't yet started DS1 on a GF diet (although I really should as he is also getting to the point of the gluten exclusive diet) but a friend recommended this website to me when I do here

misscutandstick, Whole Earth cornflakes are ok (corn, sugar and salt) - both sainsbury's and waitrose stock them. Not sure about tesco as don't have one near me.