Starting CGCF diet, any ideas on websites with recipes or list of foods in the U.K.?

[mamadadawahwah]

Hi, took ds (2) to clinic and assessed his teeth problems. Turns out he probably has inability to cope with milk and undoubtedly gluten. I am starting him on casein free diet today. Want to go and throw everything out of the cupboard but dont know where to start in terms of "hidden" casein and gluten.

I have seen lots of sites that "sell" books etc. But I havent got the time to read a book. Need to do this now. Has anyone got ideas what web sites would be good in the U.K. for info regarding our foods and which are GFCF free? Further anyone got any recipes to replace these foods?

My biggest worry is milk replacement (calcium) If your child is on GFCF, how do you replace the milk addiction? I dont like the idea of soy, but would try rice milk. I didnt know there was calcium in rice.

many thanks in advance for your help

Green foods have calcium

Why not soy? You'll find it hard to go gfcf and soy free.

I would recommend Marilyn LeBreton's books- clearly written , lots of recpipes etc.

Have a look on AiA or autism medical as it is now. I think you're going to need to read a book though.

Marilyn le Breton's book "Diet Intervention and Autism" helped me immensely. It explained about the diet, the foods to avoid and why, along with many recipes. My ds really likes the Alpro soya chocolate milkshake. Good luck with the diet, I found it extremely difficult.

Does anyone know of a gfcf breakfast cereal you can get or make. thanks for all the tips!

You can get bottled waters with calcium added, but they might have a high sodium content so you'd need to check.

I've got a whole list of GFCF sites, will have a look when I get time. There is an Yahoo EGroup called something like GFCFkids.

Have you decided how to monitor the effects? You eed a few tangible behaviours or similar to monitor as objectively as possible. Otherwise you won't know as an intervention like this will seem to work as you are concentrating on it and giving a lot of attention to that specific matter. I think the book Special Diets for Special Kids by Lisa Lewis PhD might have monitoring sheets in it, not sure. Another interesting book is Can't Eat, Won't Eat by Brenda Legge. Both from Amazon I think.

Sorry, haven't checked if all these work and can't do so many links in one go, have just cut and pasted them. HTH.

Mail Order gf food companies:
Glutafin: www.glutafin.co.uk/
Gluten Free Foods: www.glutenfree-foods.co.uk/
Beany: www.beany.co.uk

Various Biomedical Yahoo EGroups:
groups.yahoo.com/group/Autism-Mercury-BioMed-UK
groups.yahoo.com/group/Desperate4DMPSEurope
health.groups.yahoo.com/group/chelatingkids2/
groups.yahoo.com/group/abmd/

Website: www.gfcfdiet.com

Rice milk often has calcium added but check the specific brand.

Calcium also in apricots and sesame seeds (according to my MIL - I would check!).

You could also try 'Allergy Free Cooking for Kids' Antoinette Saville, Thorsens.

We bought rice milk from Tesco that had added calcium. It wasn't with the other milk but in a carton in the Freefrom section. There a several cereals in the supermarkets that you can use but my ds's favourite was 'gorilla munch' which looked a bit like golden nuggets.

Tbh I spent ages looking for websites and lists for GFCF foods and though I found a few they weren't really much use. A lot of the stuff is quite hard to get hold of (some of the speciality flours for example) plus my ds is VERY fussy about what he eats which ruled out a lot of recipes. I did manage to feed him a varied diet in the end but there was no substitute for getting to know all the shops in my area. The supermarkets are getting more clued up, especially Tesco and Sainsbury's (who do things like fish-fingers for when you're in a hurry). Also small shops, for example there is one near me that sells several varieties of GFCF sausages. Health food shops are good although Holland and Barrett are a bit limited. I found a small local one which was very helpful (they would order in my ds's favourite bread after my efforts to make it failed dismally)and they were good for GFCF versions of 'everyday' things like dairy-free cheeses, chocolate spread, gravy granules as well as treats like easter eggs. They are expensive though so be prepared!

You can get into the swing of the diet quite quickly at home once you build up a list of things that you can use (and if your child likes fruit,veg, rice etc) and you will be adding to it all the time. It is going out that is really difficult as you have to take loads of stuff with you. Going away for a few days was a complete nightmare!

Oh, just remembered that Jimjams recommended a website called 'Kirkman's' which was good if that's any help.

Hi pixel. thanks for the tips and to everyone who responded. No it hasnt been that hard, really. I am laxing on the gluten thing but the casein part is actually quite easy. I didnt give him his usual milk treat before bed and just gave water and he drank it all up.

I didnt think about "prepared" cereals being casein/gluten free. Must look them up.

thanks again!

The Coeliac Society does a directory which you could only get hold of in the past by joining with a letter from your GP!! I think its easier to get hold of now or you may be able to check them on-line. You have to decide where you're going to draw the line, e.g. oats etc and be careful with the Coeliac stuff as its not quite the same sometimes. Good directory though.
I also heard about this ages ago and not since, so not sure if its still going. The Inside Story and is a Club set up especially for children on restricted diets. It seems to provide a lot of services and support including a helpline, newsletter, access to discounts and the latest products/resources, an EGroup and a Childrens' Club plus more. For further info contact 020 7722 2866 or go to www.inside-story.com

Mama we've been doing the diet for over a year now. I would say don't panic, you will probably make mistakes (we did - loads) and it takes a while to work out where the hidden gluten & dairy is in some things.

Keeping a food diary is invaluable. You might not realise that he's reacting to something at the time, but you might see a pattern start to emerge over the weeks. Record exactly what he's eaten and any changes in behaviour/sleep patterns etc. I also had a section in my food diary dedicated to poo.....

You'll find it hard to get a gf cereal in the 'normal' aisle at the supermarket - for example, Kellogg's don't make a single one. But look in the free from section - we use Kallo Rice Puffs, and Mesa Sunrise.

We saw an NHS dietician when we started, and she gave me a little cardboard calcium calculator. It's quite hard to get the RDA of calcium into a child's diet if there's no dairy. We were told that if ds ate 2 or 3 Alpro yoghurts a day (the fortified one), then he's be getting enough.

Becca, when do you publish?

Alan Clarke, eat your heart out...

things to look for in processed food:

milk protein:
casein, caseinate, whey, whey powder, sodium caseinate, calcium caseinate, caramel (though fine as a pure unadulterated colour). also most vegetable fat or margerine also has milk in it.

gluten: rye, oats, barley, spelt, bulgur, durum flour, couscous, semolina, kamut, triticale
(as davros says you have to decide if you are going wheat or gluten free and how far)
and also be aware that some of the following may contain gluten:
starch, dextrin, malt, maltodextrin, hydrolysed vegetable protein, fillers, natural flavourings, chewing gum, malt vinegar.

HTH

Hi, mamadada, ds gf since march, cf since april. Jimjams recommended Nutrilink to me and ive found our nutritionalist to be very helpful. We use Rice milk (naturally sweet) and (the change over was a problem for about 15 seconds ds loves it), have to watch he doesnt drink too much and fill up before meals. We were advised against soy as if children have food sensitivities its easy for new ones to emerge and soy can be risky. Does your ds have problems with his movements at all? We were also told to remove refined sugar from his diet so treats now consist of bannanas, plain crisps, rasins and humdinger bars (when willing relatives will post over) We dont give fruit juice unless its no added sugar and diluted lots again mostly as a treat. We do give ds supplements to his diet also. Try health food stores but beware of Rice Dream as its got barley traces Larger Sainsburys stores are good for GFCF stuff.

Louismama, yes i am heading off to Sainsburys tonight. Thanks for all the wonderful tips. Yes, I have a problem with soy, in that it is alleged to heighten progesterone levels and studies have shown it might even cause infertility in boys if drunk as formula.

I found "tigers milk" which my son now loves. its made from the sedge plant which grows in southern USA. It tastes great and is full of omega fatty acids.

Tell me more about Tigers milk always looking for some variety. To be honest i havent really read any books etc. tend to just stick to home cooked simple meals and avoid processed foods wherever possible nutritionalist said its safest and their taste buds arent as developed as ours yet.

I believe that Soy is shown to contain higher oestrogen (sp?) and can bring on early puberty. There was a study, don't know where to find it but it can be evil!

I have been told to limit dd's soy intake to one item a day e.g one yoghurt, one drink.

Yes, davros, i actually cringe when i give him soy yogurt and i wont eat it myself. But he loves yogurt on cereal and its a bit of a treat really, now he is milk free.

The tigers milk (brand name) as i said is made from the sedge plant found in southwest USA (Nevada, etc) Your health food store can get it in for you. I didnt think my ds would drink it cause he didnt like the rice milk. But it has a much more "milk" taste than rice milk. It has "bits" in it (light light brown) but barely undetectable and for a younger child, they wont know the diff.

i get gluten free foods on preciption for my dd who is 15months, bread,pasta,biscuits etc have u thought of trying your gp for a prescription?

My GP offered me gf foods on precription some years ago, but we never did the diet so didn't take it up!

We've been all round the houses trying to get a gf prescription, but no joy . Seems to depend on your gp.