Calling all GFCF MNs?

[springgreens]

My ds has been on a Gluten and Casein Free diet now for 18 months and over time I'm getting a bit more 'flexible' about what he can eat.

I'm very lucky in that he eats fruit, veg and meat and so its not too much of a headache getting him to eat. AS a resultI've not really bought the processed products available because they're expensive and I'm never confident about whether they're 'safe' as I'm no good at label checking. For those of you who are better than me, could you tell me which brands are truly GFCF and what to look out for on the labels?

ALSO are people being careful about toothpaste and soap??? If so, which are the best ones to use?

Thanks

We're gf and on goat's rather than cows milk.

The soya ice cream- swedish glace??? is worth getting. Yummy!

I use the Sainsbury's bread flour as well- seems to be the same mix as Barbara bread's.

Have you noticed a big improvement doing this sg?

Hi Sg - haven't heard from you since PECS. We're gf novices - 23 days! I've given DS2 the Trufree crackers, which he seems to enjoy. Gf sausages from Waitrose (I think they're called Cambridge) go down well. Like JJ we're fans of the Swedish glace ice cream. Apart from that we're like you - tend to stick to meat, fish and veg + some fruit, though he's sensitive to all berries, citrus, apples and we avoid too many bananas.

Our problem with making gf bread is that DS2 is allergic to eggs, so haven't yet found a recipe that doesn't result in a soggy brick!
We buy various supermarket gf breads and a rice bread from our health food shop - he loves them, God knows why.

We use Kingfisher toothpaste but must admit, I haven't checked if it's GF. Don't use soap at all because of eczema.

I'd like to know if you've seen much difference too - I feel that DS2's motivation to communicate has really improved in the last week, but am wary of putting it down to the diet or hoping too much - we've had so many of these sudden 'surges' before and then been disappointed when it doesn't continue. Sleep is much better though (she whispered cautiously). The mood swings I mentioned on an earlier thread seem to have gone, but he's MUCH more stroppy - this is good though, as he was abnormally compliant before.

Off the subject but how is PECS going SG?

Thanks for getting back to me. As ever some brill ideas that I will try. I'm sorry I haven't replied quicker - I alloted some MN time yesterday wrote a nice long email and then sent it wrong and lost it !

JJ I've always wanted to try goats for ds and me actually (as like him I get eczema). I'm pretty sure that the transition would be pretty difficult though as ds really likes the rice milk I give him at the moment and goats does have a strong flavour. How did your boys find the change to goats?.....was there a protest? Do you know whether there's casein in goats?

[What do other people give their children to drink? Rice and Rice is what we use, but it's so expensive for the amount ds drinks and of limited nutritional value]

JJ I went to Sainsburys yesterday and found some ice cream...livened up our tea a treat, thank you for that
Also got the bread flour buthaven't had time to do anything with it yet. Whilst I'm picking your brain, can I ask how you do your buckwheat pancakes? I remember you mentioning your ds1's cheesy ones before. Any good GFCF recipes people are up for posting would be greatly appreciated. I started the diet attempting to bake, but in the end I decided it was wrong to subject ds to anymore of my 'creations'............v.bad!

Blossom - YES I really believe in the biomedical stuff and the removal of casein in particular has made a real difference to the way ds behaves and is in himself. We did the Sunderland urine test and no probs were exposed but I did the diet anyway as I just felt that there was more going on than the test suggested - pre-diet ds was bloated, farty, a poor sleeper, swinging between dodgy poos and constipation and so on. He had all the symptoms and the test can be skewed by things like the use of fish oils so I took the result with a pinch of salt. I don't think gluten or cows milk is good for him at all.
When we started the diet he very obviously withdrew from gluten and was horrid and seemingly desperate for it (uncharacteristically communicative!) and taking casein out seemed to change his behaviour alot and sort out his nappies. I felt that he very quickly made much better eye contact and seemed to be more aware of and interactive with me. As in Luke Jackson's book on the subject it seemed to bring ds back from 'planet autism' and it's very interesting what Luke writes about it reducing his anxiety - it's a very compelling read if you're considering it, tho I think some of the info is a little out of date now? Anyways, the early changes in ds were wonderful to see (I couldn't believe it) and thankfully spurred me on in the beginning when the diet can feel the most difficult to do, as the child (or adult) withdraws. As sphil suggested it may just have been a stage he went through (it certainly didn't last forever) but I guess that's the nature of ASD! I know for sure that lapses in the diet change the way ds is, most clearly in terms of his poos and his sleep and he is 'further away' iykwim. Are you considering the diet for your dd?

Sphil - great to hear from you and thanks for the ideas. Ds loves those crackers too...well done you for baking it must be very hard without the eggs. Have you tried Barbara herself at Barbara's kitchen? SHe's pretty good at talking you through how to make things taste nice/work without the lovely bits. She helped me alot when I was trying to get started but don't let her tell you about the list of things to avoid as it can make the diet feel really impossibly hard.
We have to be careful with fruits too. I used to cut out apples as they're meant to be paticularly bad, but ds only eats these and pears fruit wise (both without the skins where the salycilates [sp?] are I think? Am crap at the science )) Berries, citrus and bananas are complete no nos for us too...they make ds go bonkers and have a BAAAD result nappy-wise.
As for PECS, I thought the course was great and would recommend it to other 'stranded' parents. When i got back home (inspired and ready to go after a break in Brighton!) I worked pretty intensively on the travelling and persistence stuff and it has really helped ds alot. Am now on the verge of teaching him to use the sentence strip but need to brush up on the course info on this first before I go for it.
I felt really nervous about getting PECS wrong with ds in the 'early days' after diagnosis and wish I'd done PECS training sooner (my SALT told me not to bother before ). Would really urge people to get trained - was most empowering and has changed ds's life considerably. Where are you at with it all? WOuld be great to hear how you're doing. Stay in touch and take care

p.s. Oh yes I forgot, I also found that ds self-limited more and more to just eating toast and cereal and drinking copious amounts of milk before the diet. Once we had removed these things his diet became much more diverse and he now eats brilliantly (much better than I ever did apparently!)

That's all really positive Sg. We're now down in Somerset for DS2's BIBIC assessment and a two week break at my parents' house. My Dad (not given to saying things just for the sake of them) said he could see a real difference in DS2 communicationwise. Interestingly, DS2 had two bits of a normal bread roll this afternoon (stole it from the table). Then had a two hour nap and woke up very distressed - cried for ages which is very unlike him.

We are just about to start the sentence strip too! You need two people for it, so though I'd take advantage of being down here. Am also intending to start toilet training - but we're leaving both until after BIBIC on Mon/Tues. I agree - it's made a huge difference to DS2. Checked his BIBIC notes and the SLT report in Feb said he wasn't initiating any verbal communication at all, so they'll see a real difference (hopefully!).

Update on the homemade gf bread saga - my Dad has made a passable loaf in terms of texture, size etc using Orgran Harvest mix flour and following the recipe on the packet. I think it's got a strong aftertaste - like when you put too much baking powder in something, but DS wolfed it down.My Dad was very pleased - bless him, bread is the only thing he cooks!

I've just started the gf diet for J at the beginning of the summer holidays. Not doing cf just yet, it's important for me to have him 'on board' and he certainly is with removing gluten, but I know I'd have a battle on my hands over dairy as well, although it's a possibility for the future.

Here's a nice bread recipe if you want to try it. It's adapted from one I was given on another board to suit J's tastes:

500 mls warm water and your choice of soya or rice milk (50/50)
3 medium eggs at room temperature
125 mls oil
1 tsp wine vinegar
70g tapioca flour
70g gram (chick pea) flour
280g brown rice flour
3 tbsp of mixed seeds eg poppy, sunflower, pumpkin and linseed etc
1 tbsp xanthan gum
2 tbsp muscovado sugar
1 ½ tsp salt
1 sachet yeast
1 ½ tbsp quinoa flakes
1 tsp baking powder

Place half the yeast in the bottom of the bread pan followed by the dry ingredients. Add the wet ingredients followed by the remainder of the yeast.

Choose basic 1kg loaf setting and dark crust. You may need to check the mix a few times before the bake programme begins to ensure that the ingredients are fully mixed and not sticking to the side of the pan.

Just before the bake programme begins, sprinkle the surface with more seeds of your choice.

Continue the programme, remove from the bread maker as soon as it is cooked and allow to cool thoroughly before cutting.

I spoke with J's dietician before starting the diet and she said his intake was very good, but pointed out that you lose a lot of fibre on the gf diet so it's important to put it back in where you can. I've been using quinoa flakes in my bread and bakes, they give lots of extra protein and calcium as well (handy for cf diet too). Buckwheat's useful too.

A word on gf sausages - we don't have Waitrose here in the Frozen North so I can't speak for the Cambridge Sausage sphil mentioned, but I've found that loads of supermarket gf sausages (and those from farmers' markets, to my horror) contained MSG. So far I've only found one brand of sausage that fits all the requirements and that's only available at specialist shops or online. Remember to check the list of ingredients, as ever.

Thanks KT - that sounds great (as long as egg replacer works instead of the eggs!). BIBIC nutritionist said same thing about lack of fibre on gf diet. She said seeds are great for this, but we have to try them out carefully with DS2 because of his eczema/nut allergy.

I'm worried about sausages now! Will check lablels carefully - I always forget the different guises that MSG can take.

Something else to be aware of with seeds/nuts/grains is that they deplete calcium, so it's important to balance that out. Very important in a vegetarian diet where seeds are used a lot to provide protein. Quinoa is great for that - you can barely tell it's there and it adds so much nutritionally.

Are we allowed to recommend products on Mumsnet? I hope so, because here's the link for fab sausages (if you'll pardon the pun):

www.richardwoodall.com/