gluten/ casein diet again

[pim]

I've been reading through the threads and trying to decide whether I should put ds on the diet. I got the results back from the Uni. of Sunderland, which shows that he has intolerences to both casein and gluten. But I'm still in 2 minds about the diet. Ds does suffer from diarrhoa (sp?) now and then and sometimes doesn't make it to the toilet in time. I put this down to when he eats apples. When I don't give him any apples, his diarrhoa seems to go away. But he loves apple and won't eat any other fruit except bananas.

I think I'll have to do a bit more research about this. Maybe the enzyme route might be better. I have been giving him omega 3 for over a year. There was no notable change in his behaviour. Even when I stopped it for 2 weeks, there was no change at all. But having read some posts here, I might change it to eye-q.

I was hoping the results would have come back negative.

 

pim

.

[KarenT]

I'm considering the diet as well, but it's flippin' hard work from what I hear and don't want to do it unless it's necessary. Good luck, whichever way you go.

 

As for Omega oils - apparently there is some concern about oils mixed with evening primrose with ASD/AS children (I think it can increase stimming, so I'm told), and Eye Q is mixed with it. Some kids go quite mental on it, apparently. You could try Eskimo Kids which is mixed with rapeseed and non-farmed fish. More expensive but it's a far more natural product. You can get it from www.nutriworld.co.uk.

 

Karen

x

[pim]

Thanks for the link, I will try it. My ds actually likes the taste of the Omega 3 and wants more than a spoonful!!!

 

I've just been browsing the allergy induced autism website. It all sounds so difficult. I was reading that some kids react badly to bananas, apples, peas, tomatoes, toothpaste, some mutlivitamin tablets, even paint in the house if you're decorating. The list seems endless!!!! They are about the only fruit and veg ds likes. If I cut those out as well as the casein and gluten there is not much left. I'm going to do some more research before I seriously think about it. But meanwhile I'll try and cut down on his gluten intake if I can. Even I read that it has to be a complete withdrawal of it.

 

I hope the diet goes well for you.

 

pim

[kazzdt]

Hi pim,

 

Can I just ask how did you go about getting Ds tested for intolerences. What made you suspect that he could be intolerant?

 

 

Thanks

 

 

Kazzdt x

[baddad]

Hi Kazz/Pim/Karen-

Not got much time tonight, but a couple of things from your posts...

No getting away from it, the diets can be quite hard work at first, which is why I always suggest going dairy free first and gluten free about 6 months later. That way you know exactly what is doing what (if there are benefits) rather than implementing both when 1 might not be necessary. That said, it is MUCH easier now than 3 years ago, and once you get to know the basics and adjust your regular shop accordingly it ceases to be an issue...

Primrose oil - hadn't heard this, but anything's possible... What I can say is that rapeseed oil gets quite a lot of bad press from the AIA (they're very particular about oils generally - at one point they were saying kids shouldn't eat McDonalds chips 'cos they're cooked in rapeseed oil); though personally I lost all faith in the AIA a few years ago, as their own 'recommendations' often offered contradicting advice and they get quite uppity if you point it out to them! I never feel comfortable when large organisations start endorsing 'brands' rather than making general recommendations, but I'll admit to being quite a cynic in the first place...

Long lists of 'problem' foods - certainly some kids have multiple allergies, but if this turns out to be the case with your own I think you have to take each problem on its own merits; omitting foods which cause huge problems and taking a more casual approach with those that are less problematic... It always worries me when a new food is 'added' to the lists some organisations promote, 'cos, if taken at face value, by definition it means the diet they were promoting before that discovery was inherently flawed. My method is much simpler: - if I can OBSERVE an effect first hand, and demonstrate it repeatedly by adding and removing the food periodically ('challenging', as it's known), then we'll work on that. If I can't observe an effect, I'll trust my own judgement rather than someone else who may not be as impartial as they seem...

As far as 'should you/shouldn't you' goes, that's down to individual choice, but if you've gone to the trouble of getting the tests done and they do indicate an intolerance, it seems kind of a waste not to give it a trial. If it doesn't help, you've lost nothing (bar a few months of aggro), but if there are tangible benefits, everyone's a winner.

 

Hope that's helpful

BD

Oh - one final thing... 'cutting down' is not, supposedly, an option. I've never quite got my head round that, 'cos given any of the four theories for how opiods cross the blood/brain barrier, you'd still think 'less' would be partially beneficial. My own observations with Ben suggest that he can tolerate very small amounts of dairy, but that Gluten is a definite no no, so I have to accept it as a general rule even if i don't understand it! Perhaps it's another thing that varies from person to person; If you think about it, not all people allergic to i.e. peanuts go into anaphylactic shock, so their must be degrees of intolerance ?

Edited April 24, 2005 by baddad

[Valiant_Skylark]

I take a very similar stance to BADDAD.

 

Valiant_Skylark xx

[Jadensmum]

Me too. Haven't mentioned the AIA on here before but I followed the forums for a week or so and ended up with a big headache and very confused. One day such and such was allowed, the next day it was banned - I think if I follow anything like g that J wouldn't be able to eat anything that is allowed!!

I think the diet is a case of trial and error - that's how I'm treating it at the moment anyway.

 

Denisex

[bid]

Hi

 

Hope nobody thinks I'm being picky, but I think it's important to realise that a food allergy is very different from a food intolerance. Very different things happen in the body. The two terms aren't interchangeable.

 

A true food allergy involves a rapid release of histamine by the body and allergic tissue swelling. In severe cases of allergy all the major functions of the body basically shut down, known as Anaphylaxis, and this is potentially fatal.

 

With food intolerance the immune system isn't involved, and it isn't usually life-threatening, although the symptomns can be unpleasant (abdo pains, etc). It can also vary with the amount of food eaten.

 

Food allergies are diagnosed by skin-prick tests and RAST blood tests. With food intolerance, there aren't any reliable blood or skin tests. Diagnosis is based on elimination and observation.

 

For example, you can have a gluten intolerance, but this is very different to a true gluten allergy, which is coeliac disease.

 

Sorry to be preachy, and I'm not 'dissing' the question of food intolerance and the role it may play in ASDs, just wanted to set the record straight!

 

Bid

 

If anyone is interested there is a very long and at times quite nasty discussion about Autism and allergies on the Jamie Oliver website...reveals interesting insights into Allergy Induced Autism!

Edited April 25, 2005 by bid

[pim]

Hi Kazzdt,

 

I got my ds urine tested at the University of Sunderland. I'm no good at links but if you google autism reaearch unit, UNi of Sunderland or Paul Shatock, who is the guy who runs the reaserch, you will find more info. The test costs �60 but if you're doctor is sympathetic you might be able to get it on prescription.

I had suspicions about ds as he often has diarrohea. Him and his sister eat the same food, but she is O.K. I remember when I started giving ds solids at 6 months, he got very bad nappy rash. He never had it before. I made sure I changed his nappy immediately. So I wonder if he was born with certain intolerances. He hasn't always had diarrohea it's just come back again. Now that I've stopped giving him an apple it seems better again

 

Hi BID, I popped over to Jamie Oliver's site. It was good to read a debate about the AIA site. No you're not being picky about mentioning the differences between intolerances and allergies as it so easy to get the 2 mixed up.

 

I'm going to start a very slow process before I go completely GF/CF. That is I'm going to start slowly changing over and introducing new foods to find out which ones ds will eat. I know it's advised to do casein first but he loves his milk. I'll try a couple of soya products and see what happens.

 

pim

[loranderc]

Hi guys Not been online for a while but nice to come back!

 

Not sure if this is the correct thread or not but has anyone seen in the newspapers over the past week or so articles relating to an "enzyme test" and antioxidants? Cant seem to trace what all this is about other than a "new test on an enzyme that those on the spectrum may be difficient in relating auto immune response and can be helped with anti-oxidants.

 

Re diet- does anyone know of someone in the kent surrey sussex/ london area who specialises on the gluten free diet and asd. Small group of mums in sussex(4) are really interested in starting the diet on our kids but looking for someone to help us. One mum got an appointment with dietician but apparantly wasn't very knowledgable about ASD kids, local HV says that she doesnot know of any local GPs who may be able to help but let her know if we find one!

 

Your input would be invaluable.

 

Also on a similar thread

Really curious abouts links with pollution/ auto-immune response. Does anyone know of any data about "hotspots" of ASD eg in heavily industrialised areas? Both myself and my husband both come from places of heavy industry and live near an airport and dont know if this links into our son being on the spectrum? M also has mild eczema and hayfever ( also auto-immune response problems as does my husband)

Does anyone elses ASD kids have similar hayfever/eczema problems and live or been brought up in highly industrialised areas?

 

Tried the NAS web page on research but was too high brow for me to comprehend.

 

Loads of questions to ask you all but my mind is "swimming" thinking about all this over the past couple of days

 

regards

L

[baddad]

Hi L.

No expert by any means, but my son has been gf/df now for around 3 years. A friend of mine asked me to put together some stuff for her for an 'earlybirds' talk, which evolved into a fairly hefty 'overview' of the diet and the theories behind it.

It wanders into 'rant' occassionally (professional arrogance/political rhetoric etc), but covers Paul Shattocks research in simple terms (surprise surprise!) + testing, trialing, 'symptom' indicators, and stuff like that.

Still have it as a WORD doc, so can e-mail it if you're interested: drop me a PM to let me know...

I WILL NOT be offended if you don't take it up, so don't worry if you'd prefer to take the 'DIY' route!

L&P

BD

[mellymel]

We (Flintshire Branch NAS) recently received a talk from Paul Shattock from Sunderland University on Gluten & Casein free diets I can send his handouts to anyone who is interested

Hope this Helps

[loranderc]

Thanks guys

Are there any menu/cook books on this stuff especially for kids?

[cjsmum]

hi all

 

i've just started to exclude certain things from cjs diet before i go down the full blown route of CF/GF diet and i've found that by cutting out all E numbers, artificial flavourings and additives as well as changing to multigrained bread, brown rice etc.

 

he's been on it for 3 weeks now and its had a marked improvement on cj especially with sleeping.

 

got an appointment with dietician in june to get him intolerence tested and look at ways of implementing other exclusion diets if thats what is needed.