Gluten Free Diet?

[Krit]

Just wondering if anyone could tell me how you find out if your child should be on a gluten-free diet, the doctor who diagnosed our daughter with Asperger's said there was no reliable test that would give us an answer.

My Ds is Gluten free and dairy and the doc is right there is no reliable test, even bloods are not 100% on the gluten. Ds is to be treated as a coeliac as if he has any food with gluten he has a bad stomach, green poos and a body rash plus generally miserable which is very noticable as he is a happy chappy.

You cut out the gluten totally for a good 4 weeks to make sure his system is clear of any and then try him with some food that contains gluten. If he reacts then you know!!!! Thats what we had to do. The other choice would have been to feed him lots of gluten foods for 4 weeks and then blood test him, but he would have been too ill so the pead didnt reccomend this.

Hope this is of some help and you get it sorted

I know jimjams son does it with good results, I am sure she will have some encouraging things to say

You can get tested at the Autism research unit They test a urine sample for problems with gluten and casein. I don't think they claim it to be 100% but it seems to be reliable from talking to friends (by which I mean those who had a negative result and tried the diet anyway- I include a friend who tried ot for a year!- saw absolutely no difference- whilst those who had a positive saw a difference within days).

The diet isn't all that simple though as you also need to avoid sources of glutamate and other things as well, so you need to avoid, MSG, apartame, yeast extract, sorbitol. It's also extremely strict on the gluten- no gluten at all. Foods are allowed to be labelled gluten free if they contain under 1% guten but children who need the diet are often far more sensitive than coeliacs so you really have to check everything.

On the other hand its trial and error- if you look at allergy induced autism you will get lots of helpful info. OTOH they are VERY strict- we are not as strict with the diet as my son just doesn't eat enough (he also isn't casein free- tried it twice saw no difference - but I think AiA would pass out at that! )

Ds1 was absolutely away with the fairies yesterday evening, had no idea what had got into him. Still spaced this morning. Found out today that he'd been making biscuits yesterday at school- so he was elbow deep in flour. Luckily they knew not to give him one to eat or he would have been screaming for hours today. Now personally I'd rather he did that (as it seems to just space him out for 24 hours) than missed out.

If you don't want to get the test done you can just try the diet- if its going to work it works very quickly ime. Sunderland say it can take a while, but everyone I know has seen a difference within a week.

RexandBen's little boy is gfcf as well I think.

Charlieplus3- the diet for autism related stuff isn't realy done for the same reasons. My son's poo etc has always been normal. Sunderland actualy test for a compound called IAG in the urine, and for gluten and milk derived peptides. If IAG is present it seems to tell you that the gut is leaky- bigger molecues than usual are getting into the bloodstream and crossing the blood brain barrier. Incomplete breakdown products of guten and milk happen to act like opium on the brain- so the child who has a problem is spaced- effectively drugged. Removing the offending foods is like removing a drug from an addict so you often get withdrawal.

If you can repair the gut wall then you can reintroduce gluten and casein.

In my son's case he had IAG and low levels of gluten breakdown products. No sign of casein. We tried him off milk first- no response (repeated after he was guten free no response). Tried him off gluten and he stopped counting stairs within days (had been doing it for about 6 months). 2 weeks later I used 2tsp of the wrong baking powder (contained flour) in some buns. Didn't realise - gave him the buns and he started counting stairs again (this stair counting was completely obsessive). Realised my mistake stopped the buns, and no more stair counting.

Hi. As Jimjams said my son is also gfcf. We also had the urine test done by the Autism Research Unit at Sunderland University.

In our case we had actually started the diet for a few months before we did the test, so the test for milk was negative because this only takes a week or two to leave the system. However we were pretty convinced that Ben had problems with milk anyway and this was confirmed later by our nutritionalist. The test for gluten was positive (the IAG can take up to a year to leave the body)

After starting the diet we noticed a dramatic change in Ben's level of concentration and he just seemed generally more 'with it'. He would actually LOOK at us if we caled his name!

As Jimjams said you will really notice the difference if gluten and casein are a problem for your child.

Thanks for all the responses and information - particularly JimJams, I have contacted the Research Unit and they're going to send me what I need.
I have done quite a lot of reading anyway and knew why a CFGF diet was a good idea but, when my daughter was diagnosed I was really disappointed with the doctors opinion about the tests.She was really quite dismissive, saying they weren't "evidence based" and obviously then you worry that your going to be yours and your childs, already pretty difficult life, even harder for no genuine reason....

Oh doctors haven't a clue. They're very anti it which is a shame as for some people (certainly not all) it can make the hugest difference. For us it really has.

OUr paed looked over his glasses and said "hmmm well its not very mainstream. If it becomes mainstream one day then we'll support it totally but not until then". So basically he couldn't be arsed to look into the evidence himself and make his own decision.

A lot of the children who seem to benefit the most tend to have gone into autism via the medical route- eg lots of ear infection, lots of antibiotics, autoimmunity in the family, vaccine reactions. Those that don't benefit often seem to have a very strong genetic history of odd uncles iykwim That's just from my very unscientific personal observations.

I'm probably preaching to the converted here, but this month's Sainsbury's Magazine has an article and some g-f recipes in it. There's one for a yummy-sounding orange cake, but I can't make it as it contains almonds, which dh is allergic to, bah.

We probably fall into the "odd uncles" bracket !!
She hasn't been vaccinated and do our best to steer clear of antibiotics...still we'll give it a try, her osteopath said that wheat and rye didn't agree with her when he gave her some food intolerance tests and I do really trust him, but I guess I wanted something more scientific and concrete, since removing all traces of gluten isn't exactly going to be a piece of cake - wheat-free of course!!
Incidently, was the test expensive? and did it take long?

The test was 50 pounds- but I think it may have since gone up. They don't make a profit from it, and if you can't afford it they try to do it for less/free- you just need to talk to them.

At the time we were told it may take 6 weeks but it only took 10 days.

Jimjams its amazing how the food can effect children in dfferent ways. Im amazed about your baking powder, it must be awfull for you. If my Ds has some wrong foods he will just be ill for a few days.

I have no experience with autism but it sounds like you have it hard, i know there is different levels but thats about it. I didnt realise food was a factor too.Sorry for my ignorence

krit if you fall into the odd uncles bit probably worth doing the test if you can. I found it much easier to start the diet with the positive test result. Once you get into it it's OK, although it can be quite daunting at the beginning.

charlieplus3- autism isn't fun that's for sure Food isn't a factor for everyone, but gut problems are common in autism and there seems to be a subgroup who respond quite dramatically to diet. The gut problems seen in the MMR damaged children are different again.

I just had a look at the sub group, special needs. I should have read it properply before jumping in. Its just DS has only recently been diagnosed since weaning and mums netters were a great help so i was trying to help back.

This might be of interest to you - it's an article about the Paed who diagnosed out DS with Aspergers. He has had success with dietary intervention, but in our case didn't feel it would make any difference. We had already tried it for 6 weeks so kind of knew it anyway. I will try and fish out the letter from him, as it might give you some pointers as to whether or not the diet may help, although I think it probably said pretty much the same as Jimjams has already said.
Hats off to all you mums that follow it - I know it's not easy!!

oh no you're aways welcome charlieplus3. There's always a lot of confusion about coeliac vs autism diet so I always clarify just in case someone who is trying to find out more about the autism diet reads the thread. There was a similar conversation last week.

Oh Tettenborn is good. Yeast man We thought about going to see him a while ago. Should have gone when we lived in London and were starting the diet (but we started it pre-dx and I thought strangely enough now - that it might not be appropriate).

No surprise to some posters (Jimjams!), but I would advise great caution with doing a GFCF diet, especially if you're from the "odd uncle" side rather than having a child with generally poor health. It seems like a no brainer when they're young, what harm can it do to try? Well, I know mums who've been doing it for some years and find it an absolute bain (sp?) of their lives. Its expensive, more socially excluding, restricts independence which is already limited with ASD and, for many children, doesn't show clear and measurable benefits, especially if you start any other interventions at or around the same time.
Don't get me wrong though, I know it is of great benefit to some children and have seen it with my own eyes but I'm sure there are many, many ASD kids on the diet who don't actually need it and it becomes a total treadmill to their parents (usually their mother). If you do it you MUST take some baselines before starting and choose very specific things to measure. DON'T do other interventions at the same time but start them well apart. DON'T tell other people about it (tricky as you will have to be with them when food is around all the time) and see if anyone makes independent comments.

OMG I am being referred to see Dr Tettenborn with my dd. I have been seeing the HACSG in Wimbledon and apparently my dd fits a lot of the criteria and would hopefully respond well to his treatments. Any more info would be gratefully received as I was a little sceptical, but if he can help then why not? Thanks BlossomHill

Whilst taking Davros' comments on board I think that if its going to work to the point where it makes sense to do it then you need to be honest with yourself- and the difference you should see if it is working- should be VERY obvious. You don't need to look for subtle signs of imrpovements. If it works the difference is clear and quick, and any infrigement is very obvious.

I do think that sometimes people stay on it too long (my friend who tried it for over a year for example). Also it is quite easy to test as if it is working then you should spot infrigements before you know you've made them. In other words you spend a day or 2 thinking "what the hell has got into my child" and THEN you find out that there has been an infringemnt. It's almost double blind.

Agree about listening to others how don't know what you are doing. Recently ds1's oil ratios were changed. I thought he was going a bit weird (had been told he may do) which was confirmed when school asked me if he'd not been getting his fish oils (as he'd had a very bad patch when off them). He couldn't do anything at school and spent 2 days running around outside- no work completed at all. Converting sceptics is always good. My mum and dad were very sceptical until they saw the difference in him (they lived 300 miles away at the time so only made infrequent visits). Also school were very sceptical about the bad patch being due to fish oils until they saw the change in him when he'd been back on them a week.

I do think though that if you are of the odd uncle brigade a urine test first may be a good idea. Especially if your child has food issues. (so any change in diet won't be easy).

My son isn't particularly unhealthy now and was never classed as failure to thrive (quite the opposite ) but he did have lots of ear infections, lots of antibiotics and a nasty viral infection- after which his eating habits changed completely and very quickly. Also choc a block with autoimmunity in the family- all of which makes us almost classic contenders for the diet.

SUEDONIM....if it's ground almonds...a great alternative is GROUND RICE....similar texture....can you use that on GF diet???? Then can you add ALMOND ESSENCE (NOT THE REAL ALMOND EXTRACT ETC....JUST THE CHEMICAL TYPE?)

If you decide to go ahead please listen to someone like Jimjams who I respect as not being a fanatic and knowing what she's talking about. If you go further down the biomedical route you will encounter some seriously strange people! DO pay attention to what she's saying about being able to see clear differences quite quickly and don't stick on it too long if you can't see much difference. Its much harder to change back the longer you leave it. Have to say though, we've always got phases where we have a few days or more of thinking what the hell has got into my child and I think that's autism to a large extent so you need to be very careful not to attribute everything, good or bad, to the diet.
I'm also not sure about the urine test. We had it done twice on my DS and I found the results impenetrable, I didn't seem to be able to get a straight answer and was told that the tests were very different but unusual. This was in the days before they charged and I know their testing equipment was not as good then. I used to threaten my DS's ABA team with taking a test tube of wee from each of them at a team meeting and sending it all in, on the high chance that they would all be told to change their diet (all that alcohol would have looked strange!). I think Paul Shattock is a wonderful person but I'm still skeptical about his theory and whether it would apply to a high number of individuals. I think diet change due to sensitivity/reaction to certain substances or due to gut problems are a different issue and make perfect sense. I haven't seen a drastic change in the level of autism in any child who is on the diet but definitely some need dietary intervention for their health. My view is not popular but on the occasions when I do comment as above I tend to find that there are a lot more people who think like me who don't speak up. I have found the "biomedical brigade" to be generally quite intolerant of people who don't agree with them and their absolute belief in many theories doesn't make them true! There are some moderates out there (JJ) and people sometimes seem to get less fanatical about it as time goes on and even relax their strict rules.

Ahhh a strange urine test result. All the people I know who have been told that have found the diet doesn't work for them. Ours was a fairly classic result. I think part of the problem is that Paul Shattock is unwilling to say that people shouldn't try the diet as there are parents who claim to have seen improvement despite a negative result. But of course they may be seeing things that aren't there, or a different intervention may have produced the improvement. The other thing to remember about diet is that if after removing a food you see an improvement you can "test" whether it was reponsible by reintroducing the food. If it is a problem you'll usually see a fairly major response on reintroduction. If you don't then it may just have been an up and down thing.

If you use the Sunderland protocol (devised by Shattock) it's actually quite conservative, introduces only one thing at once- and makes the point that the diet should not be continued if no improvement is seen. In fact Shattock was quite assertive with me in saying that ds1 should not be casein free unless real improvement was seen. I think AiA would find that shocking. The cannot handle autistic kids bieng gf not cf. I don't really want to be too rude about them as I think they do an awful lot of good, but they are very strict.

INterestingly- just form personal observation, the children who do the diet having regressed following vaccination (and Shattock claims that their urine sample are different as well) do seem to do very very well on it. The ARU is working in collaberation with people investigating gluf war syndrome which I think could be interesting (IIRC they have IAG in their urine as well).

I came across an article (pile of bile) from that GP loony with the autistic son Agggh forgotten his name. Anyway he referred to Shattock as "that biochemist". Paul Shattock is lovely though.

If you go heavily into dietary stuff I think it pays to use a nutritionist. Diet has such a big effect on our son (and I'm not just talking about gfcf- I've written on here before about peanuts) but I find myself geting lost in all the information. Using a nutritionist (who knows his stuff- VERY up on autism- it's his speciality) it ensures that one intervention is done at a time, and that dodgy responses are dealt with hopefully correctly. And he organises lots of biochemical tests so we get an idea of what is going on. He also has a gently gently aproach.

I totally agree with Jimjams on this one. I can see how and why some people can become quite fanatical about the whole diet (out of desparation!) but it is important to keep a very sensible attitude towards it.

Yes the diet is a bugger to do at first, but you and your child do get used to it. AND it can be surprisingly normal - Ben and fish fingers and sausages and bread and biscuits etc.

But IF your child is one who the diet DOES help then surely it is a good idea to do it? I will do anything to help Ben - personally I think it is more important to get his diet right and help his autism than to worry about him being upset at a party because he cant have a sausage roll.

As Davros said introducing more than one thing at once is extremely unwise because you dont know which one is having the effect!

I beleive that implementing GFCF diet has been extremely important to Ben. But I also think it is so important to tackle things from a behavioural direction too.

PS: Davros - I hope I am classed as a moderate too

We're doing the behavioural stuff now - and I have to say some peole do get quite fanatical about that as well I always think its a shame there are so many opposing "camps" in autism. It such a broad spectrum- probably with many causes so different things will help different people. I don't assume that diet will help anyone else but as Rexanden says I do think its worth considering. Same as we've chosen not to do son-rise, but it was worth considering. Just because of the anecdotal reports that it has helped. Also we did AIT and I wouldn't say it has helped but I don't regret trying it (easy to try anyway).

For us diet has worked and ABA is doing a lot of good as well, but you have to know when to stop. For example BIBIC was excellent for the sensory stuff, and provided a very good assessment, but when they rang recently to ask if we wanted a reassessment I said no. His sensory and motor stuff is coming on nicely, but the programme isn't really set up to bring on language- so I'd rather spend my money on ABA.

I think its just worth always being open minded and not getting too fanatical about any approach.

You sound moderate to me RexandBen

Oooh, lovely moderate group hug {{{{{}}}}}!! RexandBen, I also agree with what Jimjams says and I would hate someone to NOT do it if all the indicators show that it will be or is beneficial. Unfortunately I think a lot of people get stuck in and don't implement the diet and other interventions in a cautious way and can become quite unscientific, therefore JJ's advice about a nutritionist make so much sense. Yes, there are fanatics in ABA too And now there's this anti-ABA movement being lead by adults with AS (not MrsF as far as I know ) and other people with a lot of dire misinformation about how ABA is abuse and all parents who choose ABA are only interested in cure (ha ha, if only they knew!) and that behaviours are only to be eliminated. They don't understand at all about functional analysis being the cornerstone of ABA. Its sad.
I also saw that muck by the mad GP "MMR and Autism, The Facts".......... my arse!