GFCF Diet. How do we know it's working?

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our ds aged 4 has autism and started on the gfcf diet in January. Although we were open-minded about the 'success stories' we eventually decided that there was nothing to lose and if we didn't try it we would never know. We have been as strict as we can but I think that occasionally small amounts of offending foods sneak through because it is all quite confusing and sometimes I find out that an ingredient that I thought was fine isn't!
At first we were quite excited because his playgroup reported big changes in his behaviour, for example sitting with the other children for snack time or story time which he had never done before and we started to see an improvement in his bowel condition. Although he has made no startling improvements (he is still completely non-verbal) he has made steady ones. His eye contact is much improved as is his concentration and most of his stimming has ceased.
My question is this. How do we know it is the diet that is working and not the many other factors? It could be just a natural progression of him growing up or the excellent early intervention group that he attended. Or it could be that he had 'toddler diarrhoea' after all and he is outgrowing it. (We never really believed the doctors on this as we thought they were trying to avoid acknowledging any possible links with his autism-but maybe we were wrong).
We had thought to just carry on with the diet as we are in a routine at home which isn't too difficult now that we have worked out where to buy things that he will actually eat and have finally perfected the gfcf yorkshire pudding! Tbh I'm a bit scared of stopping it in case ds loses all his new found skills. I wondered if anyone else had taken their children off the diet and what had happened. Did you notice any effect straight away or would it be a gradual response? Does the fact that his test for coeliac disease was negative mean that we have been wasting our time with the diet? Sorry, lots of questions I know but I haven't really been able to ask the doctors as they don't approve of us trying the diet at all (except for our wonderful hv)
I felt so mean today. Ds usually uses a major buggy but we do try to practice his walking when possible and today he ran into the sweet shop. By the time I got in there he had found the 'wotsits' which he adores but has not been allowed to have for the last nine months. He was so pleased and took them so gently and politely off the shelf, I was really proud of him for managing to recognise the packet but I still had to take them away from him. I can still see his little face and feel like a evil witch so it has got me wondering about carrying on with the diet. One last question. Does it always have to be dairy and gluten free or can some children be intolerant to just one or the other?

Hi my son is gluten free- not dairy (we've tried cf free twice- abslutely no difference and his diet is very limited). he went gf when he was 2 and is now 5. We saw immediate effects- and very obvious ones when putting him on the diet. The most obvious being that he stopped counting stairs obsessively- and just walked down them. Whe we had an ifringement 2 weeks into the diet he started counting them again. The other food item that had a BIG effect on him was peanuts. He started eating pure organic peanut butter (ground peanuts- nothing else added) and basically turned into a headbaging loony. He was whacking his head about 20 times a day and had permanent brusing. Took me a while to make the link, but once we removed the peanuts- the headbanging stopped within 2 days.

So the point of this being that for us the effect of removing dodgy foodstuffs has always been obvoious and very quick (which is why I didn't perservere with the casein, or for that matter apples- again no effect).

The fact that the diarrhoea has cleared up is I think important (a lot of people I know have linked that to casein- so maybe he just needs to be casein free). DS1 has never had diarrhoea.

Other things to consider would be switching to enzymes rather than an exlusion diet. I haven't used this approach as ds1 does seem very sensitive to gluten (if he gets any now he will spend the next day screaming- so again we are getting an immediate obvious effect). I have added them to food when giving casein but again saw no effect.

The other thing you could try is seeing a nutritionist. But one who understands what they are doing. A network has recently been set up called nutrilink We see Mike Ash who set it up and he is excellent. I have a PhD in Biology but found myslef getting totally lost with all the biomedical interventions so having ds1's diet etc overseen by him has been great. Their approach is very gentle- they start with small changes, but also they carry out tests so that they can really adapt to each individual child. So far all our consultations have been by phone so we haven't had to drag ds1 to see him. We have done a couple of saliva tests so far and will soon be doing a urine test (big one)- so nothing too invasive yet- we've been wth him for getting on for a year- so all quite gradual. They are quite expensive though, but we are getting good effects and he reins me in a bit- changes are made one at a time and enough time given to see whether they are having an effect.

The coeliac disease test is irrelevent, as coeliac is more like an allergy - whereas gluten casein problems are caused by gut permeablity. Have you had the urine test done at Sunderland?

Hi Jimjams, thanks a lot for your helpful and quick reply. When I read it out to dh and got to the bit about the coelic test being irrelevent he said 'well that answers that then' as we had both wondered. No, we haven't had the sunderland test although ds has had all sorts of tests at the hospital (urine and blood-nightmare)which were all negative.
I have seen enzymes mentioned on the PAAINS website but tbh it all makes my head spin a bit. I'm assuming that it is something you add to their food but have no idea where I would get them. Do they have to be prescribed by a doctor or by the nutritionist that you mentioned? We had an appointment with a dietician at the hospital but I cancelled it as there didn't seem much point. ds is very self limiting and I am already getting as much fruit and veg, vitamins, efalex etc into him as I possibly can. Maybe I should have gone though as I was very interested that you mentioned apples. I didn't realise that they could cause problems and they are ds's absolute favourite food.
From what you say it does seem that any benefits of being on the diet should have been more immediately obvious. Ds doesn't really have any wild reactions to specific foods. We just noticed that his obsessive behaviour seemed to gradually stop. We no longer have to have cupboard doors open 'just so' or video tapes lined up in a certain way across the carpet, or small toys arranged everywhere in groups of three. And he has hardly looked at his Thomas brio for months even though he used to sit and push a train through a tunnel for hours and hours. People who haven't seen ds for a while are stunned that he acknowledges their greetings and that he is so much more aware and interested in his surroundings.
Having weighed it up we are going to try introducing casein again and see what happens ie if his diarroeh gets worse again. We'll do it in a couple of months though as he has just started school and we want to give his teachers a chance to really get to know him otherwise they won't be able to judge if his behaviour is affected or not.
The nutrilink thing looks interesting but as you say it is expensive it will have to be something for the future I'm afraid. Thanks for helping to clarify some things for us.

We saw a hospital dietician- and she was useless. They really don't know enough about the biomedical side of autism.

The Sunderland test is here It's about 50 or 60 pounds I think but they do it for free if that's too much. It is worth doing as it does give an idea of whether gluten and or casein is going to be a problem (although check with them if you decide to do it- it may be worth doing after introducing casein and or gluten back into the diet).

Apples are a big problem for some autistic children. I think these are children who are affected by phenols. No difference to ds1 at all.

I used kirkman's enzymes but there may be better ones out there. I think we ordered them online in the UK from nutricentre. I think all the enzymes are made by US companies. I havent looked into enzymes in big detail though. They come in capusles which ds1 won;t havce (he's non-verbal as well btw) so I used to break them open and mix the powder with whatever he was eating.

Thank you. The Sunderland site looks very interesting but I can see it's going to take me a while to read through it all.

Are the enzymes 'safe' or are there any possible side effects? I'm quite scared of giving him anything without the doctor's say so but on the other hand my GP is pretty clueless. I asked him about chelation and he had never heard of it. I have only recently heard of it myself but then I am not a doctor.(I can't be cross with him though cos he is lovely. Takes parental fears seriously instead of fobbing you off as a 'paranoid mother'. When I told him ds had had single vaccines instead of mmr he asked me for more information as lots of other parents had been asking him about it!)

I am in contast amazement of the knowledge on MN! I feel so ashamed that I don't have a clue about any of this.even
luv. Dingle

Enzymes are safe as they act on the food not the child (much safer than chelation anyway!) TBH they are probably the safest biological intervention out there!

Dingle don't worry- the GFCF diet is specific for autism (occasionally can help ADHD etc)

We thought chelation sounded dangerous, that's why we didn't pursue it. I'm sure I remember seeing a programme about a child with cystic fibrosis who took enzymes. Have I got that right? Something to do with helping digestion?

Yes- but they will take different ones.

Kirkmans do several different enzymes- but they are all aimed at autism so particularly concentrate on breaking down gluten and casein. I know there are enzyme message boards and I know some families have switched from the gfcf diet to enzymes instead. Expensive - but then so is gfcf!

I think if you were using enzymes you would probably still have to avoid things like MSG and aspartame, but it definitely widens the diet.

We found the Kirkman's site and it's definately worth a go especially as they do a trial size tub. Didn't know they did gfcf foods as well though. Typical!! just as we are thinking of giving up the diet we find a gfcf doughnut mix!Ds loves doughnuts and we haven't had them for ages because we feel too guilty having them when he can't. Oh well!
Thanks for your help Jimjams.

pixel, I assume you've tried all the UK-based companies that provide GF food? I've got a list somewhere, I'm thinking of Glutafin for example. Can dig out info if you want.
A note of caution from me though (no surprise there). My experience is that some children are unwell, feel pain etc and a change in diet makes them feel better. Allergies aren't usually the problem but intolerances etc (jimjams understands this better than me). If this is the case, and you mention that your DS had diarrhoea that has improved, then a change in diet makes sense. HOWEVER, if this is not the case, my experience of observing perfectly healthy children who have autism is that their autism does not improve, certainly not in the long term and, if there are improvements it could often be attributed to other interventions. But I have seen extremely difficult issues that go along with a GF(CF) diet in that it means that children have to be watched like hawks (unless they have enough understanding to monitor themselves), the lack of freedom and ability to be even remotely independent is extremely tedious and, after some years, downright horrible. A number of my friends who swore by the diet and could see no reason not to try it, are now giving it up and enjoying the freedom. Some believe that their children benefited at the beginning but that did not continue and the monitoring and provision of acceptable food is just too hard and the social difficulties outweigh the now undetectable benefits. Maybe the best thing is to try it, but don't get stuck doing it for years and years if there are not tangible benefits.
I do absolutely believe that there are children with autism who should be on a GFCF diet and for whom other biomedical interventions work but I think there are far fewer of these children than there are on these interevntions (IYSWIM?!)

and just occured to me...... I have a data sheet thingy at home that lets you record behaviours etc whenever you introduce a new intervention (including diet). This can make it easier to see whether a particular intervention is having an effect (good or bad). If you want a copy CAT me and I'll email it to you.

Also the children that do tend to benefit from the gfcf diet tend to be the ones who had stacks of antibiotics etc when younger. Also if the gut heals they can come off the diet (which is why I quite like the tests we get done as they give some idea of what's going on metabolically).

Davros, I do see exactly what you mean and we have been coming round to that way of thinking ourselves. At first there did seem to be a lot of improvements all at once but now things seem to have levelled off (even the diarroa has been making a reappearance lately)and it is becoming more difficult to enforce the diet. 'Tedious' was exactly the right word! Ds is starting to notice what other people have but cannot understand why he can't have them too. We managed a few days break in a hotel this summer and it was impossible to find him anything to eat apart from what we took with us. The hotel even refused to put his rice milk in a fridge so he could have cereals for breakfast!
So...I think the plan of action is going to be...to start introducing dairy and gluten back into his diet and if there is no obvious effect all well and good. As you said FREEDOM.
If on the other hand we do notice a change, rather than go back on the diet (which will be even harder on ds 2nd time round I am sure) we will take Jimjam's advice, go for some testing and maybe the enzymes route if the tests show that could help.

This all seems quite obvious now that I've written it down! It's strange that it was hard to make the decision to try the diet but just as hard to make the decision to come off it! The trouble is I think, that you feel like you are making these decisions on your own as the professionals are all slightly disapproving when you mention interventions especially if you mention the internet in the same breath! Also, the more you look in to it the more complicated it seems (who'd have thought apples?) so you very quickly start to feel out of your depth. I have looked at some other sites where the people are all absolutely obsessed with trying every possible intervention and I wonder how they have any family life. I thought Mumsnet seemed to strike the right balance and had to pluck up the courage to post. Now I think I'm addicted!

Thanks a lot.

Pixel, I see you will have to go on an MN-free diet! But how tedious would that be?! I don't want to influence anyone agaist GFCF, just that there are more issues to it than there may seem at first. The enzyme etc route sounds a good idea and, of course, fish oils. Scarily there are hotels that cater for GF diets! (for Coeliacs).

We've been doing GF/CF for three months now and have seen a huge difference, we've had a big development spurt with DS since starting it. He is only 2yrs10months, so maybe we'll be like the parents Davros knows and find it too difficult when he starts school - it is hard to have a social life and impossible to go to restaurants with DS at the moment because there's nothing he can eat. But for now, I can't imagine giving it up, it's helping so much.

My understanding is that the children who respond best to the diet are often the ones who exhibit certain symptoms - these include bowel problems, red ears and lots of others. Pixel, I'm sure you already know about the AiA website, if you search in the 'forum' section it can answer most questions. It's been my bible since we started the diet.

The problem with apples is that they contain tiny amounts of cyanide/cyanate. This is fine for most people, but apparently for children with this kind of gut condition it can cause problems. Other cyanide offenders are rapeseed oil (and pollen) and cut grass. Anything that lists 'vegetable oil' as an ingredient probably contains rapeseed oil - so most crisps, biscuits, everything.......aargh!! I'm chained to the cooker.

I've read that the cyanide problem can go hand-in-hand with a sulphation problem. If child has this problem, main things to avoid can be bananas, chocolate and citrus fruit. But agree with what everyone else has said, all children are different.

DS started nursery recently and his diarrhoea immediately came back with a vengeance. I couldn't work out what I was doing wrong...then realised I'd said it was OK for him to have banana and apple with the other kids at nursery, although I'd previously removed them from his diet. I now take pears to nursery for him every day and everything's back to normal - and he is now potty trained. Miracles do happen! Hurrah for poo conversations

As Jimjams says, the coeliac test doesn't pick up leaky gut problems - but if someone did have coeliac disease and had test after they'd removed gluten from diet, it probably wouldn't pick it up anyway, as the antibodies gradually disappear from the blood.

By the way Pixel, would love that yorkshire pudding recipe if you've got a copy?

I think the social problems with following the diet depends on your child as well. DS1's diet is incredibly limited (was before we started the diet) so we have no problems giving him one lot of food and ds2 different food as he wouldn't eat what ds2 eats anyway. We don't go to restaurants now but that has more to do with ds1's behaviour! On the very rare occasions when we do we just take a packed lunch and ds1 is happy. The only non gf thing he goes for is chocolate biscuits but he's happy to eat a gf one instead- I just have to remember to take them with me.

I think restaurants probably find it more acceptable for parents to bring food for a baby or toddler too. I don't know how some places would react to tupperware boxes being produced for an older child or teenager. But most coffee places seem to do soya milk now, which is great for this latte addict - I've given up dairy along with DS, and feel better for it. Gluten is another story too - sometimes the smell of fresh bread just gets the better of me

They're fine- ds1 is 5 - and I just tell them that he's on a special diet. In fact last time I told them they expressed surprise that I'd told them (this was in a soft play cafe area) and said most people didn't bother telling them!

I'll have to try it - still a novice at this and haven't been very brave at venturing out yet. Watch out Gordon Ramsay, here we come!

The friends I've got who've given up on it or relaxed on it mostly have children aged 8, 9 10ish. Its not just the social side, although this has proved very important esp when trying m/s inclusion, but the difficulty with control when the kids do more away from home and without parent or other trusted person. I think they also feel that it has less effect than at first.

It's a problem that my friend has with her dd as well Davros (she's cf) she wants ice creams etc and her brother wants to eat the stuff in front of her. We were having a conversation earlier in the week about whether or not she should give up (the benefits aren't very clear with her dd either). I encouraged her to get further testing to see whether her dd really needs the diet- but I think she's fed up with shelling out (and who can blame her- I feel the same). I suspect she'll stop and watch to see if their are any particular changes- her dd eats a much better diet when she's not cf as well (unlike ds1 whose is appalling whether on or off the diet).

Less effect in what way Davros? Is it that the children don't have such a bad reaction if the foods are reintroduced? Or is it that their behaviour slowly goes back to pre-diet patterns even if offending foods are excluded? Just curious as to what the future might have in store.

This is not my own experience remember, but my interpretation of what a few friends have said and seem to think. At least one felt that her DD no longer reacted badly to gluten and her intuition was that her system had matured/healed? Another never had any idea how effective the diet was in the first place and her DD has just changed m/s school to a location where her mother can't take her lunch in for her (not sure why she can't send it but she doesn't). Another has tried anything and everthing over the years, except chelation and secretin, and she often says that she wishes now that she'd never done any of it and seems to feel somewhat that some of it may have been harmful (but I think she's just going through another phase of adjustment/sadness).

It's definitely true that if the gut heals then gluten etc can be reintroduced. There are ways of testing the permeability of the gut (or at least getting an idea of how healthy it is).

Any thoughts about how long one should try the diet for before making a decison, sending further tests etc? Our ds1 (7, Aspergers) has been gf for three months after the Sunderland test suggested he might have a problem with gluten but was OK with casein. Initially he was worse, then better, and we took these as good signs, but we were away on holiday at the time so loads of other things were different too. Once back at school, his behaviour has been as bad as ever, or worse, and he's also getting much stroppier about the diet.
Today he told me he didn't want to go to a friend's birthday party (and he isn't exactly overwhelmed with invites ) because he wouldn't be able to eat anything at Pizza Hut, and I moved a step closer to abandoning the whole thing.. He's also got rather thin, as he rejects so many GF alternatives, and his eczema is much worse than it was (?eggs). My gut feeling (ha!) is that we should just go back to normal and see what happens, but would that be completely mad?

Thanks Davros - good to hear that the gut healing is at least a possibility. Jimjams, what are the tests for this? I hear that Sunderland will no longer do a second test, their ethics committee have made a ruling.

jmb1964 - I think with gluten it can take a long time to see the full effects. The theory goes that casein leaves the body really quickly, but gluten is stored in the organs, so it can be anything up to a year before the body gets rid of all its stores. They say that the younger the child, the quicker the detox - I guess because they've had less years of building up gluten reserves? But I haven't been doing the diet long enough to tell you how this plays out in reality - maybe someone else here will be able to give you a first-hand account.