big mamma Report post Posted August 28, 2005 Hello All. Daughter's results have come back as : - IAG present in urine but not the biggest 'spike'. They suggest that removing gluten could well help with her constipation, behaviour etc but because IAG wasn't the biggest comopund ( they don't actually know what the other compund is ) it's not certain - No peptides from casein were found I was kind of waiting for something a bit more striking to show the doctor as I'd like some support with implementing the diet but based on the findings ( a copy of which has already been sent to the doctor ) I've got a feeling he'll give me the bums rush again. How many others have actually got any support from their doctors on this and were your results a bit more conclusive ? Any help greatly appreciated as always !! Quote Share this post Link to post Share on other sites
call me jaded Report post Posted August 28, 2005 Have you spoken to them on the phone as well? If you can get Paul Shattock - he does answer the phone - he will tell you more than they can put in official results. I suggest you go to your doctor and ask for support in removing gluten and a referral to an allergy or metabolism specialist (or whoever Sunderland recommend) to identify what the other spike means. Quote Share this post Link to post Share on other sites
big mamma Report post Posted August 28, 2005 Hi Jaded, I have tried to call a few times but it was an answering machine. will try again next week. Paedetrician has already told me that she can't support the diet and won't refer me to a nutrionist or for other testings at the moment as 'they are totally overstretched'. As I said when I mentioned my concerns to the doctor he instantly dismissed them so I may have to go it alone and get some private testing / nutritional advice. What has others on the GF/CF done ? Quote Share this post Link to post Share on other sites
baddad Report post Posted August 28, 2005 Hi big mama - In reality, the only support you would be likely to get from a GP would be with scrips, and in real terms the biggest expense with the diets is not the stuff you CAN get scrips for, but all the nice, tasty 'extras' you end up paying through the nose for in the free from section, 'cos it's easier than home baking! It would be a bonus to be consulting with a dietician, but again, in practical terms all they can really tell you is make sure you don't cut any essential vitamins/minerals out with the gluten. It's not ideal, I know, but the problem is that dietary intervention is not 'officially' endorsed, so it all comes down to the willingness of the GP to keep an open mind... If he/she doesn't - you're on your own... If your daughter does have constipation etc, I can confirm emphatically that dietary changes did help my son, though in his case it was mainly dairy that overcame his bowel problem (gluten was more a behaviour thing). If you're not sure, just give it a trial for a while; 6 months should be enough to tell you either way, and measured against the possible good you could achieve, that's no great shakes... Hope that's helpful L&P BD Quote Share this post Link to post Share on other sites
call me jaded Report post Posted August 29, 2005 Actually my GP/paed weren't willing to help, so we have done it alone. I recommend Marilyn Le Breton's 'Diet Intervention and Autism' for getting through the first couple of weeks. It's packed full of common sense and encouragement. I'll go along with baddad and BMs. The second or third day in we had proper formed poos when previously it was the stinkiest diarrhoea (see, I even know how to spell dire rear!), and it's been more or less fixed ever since. It took 3 months for behaviour and 6 months in total to see a really big improvement, but my son is extremely sensitive to gluten. I was ready to give up. Most people see something in two-three weeks. My neighbour's just qualified with the Institute of Optimum Nutrition. They are familiar with GFCF and will give good advice. The only thing my neighbour says we have to be careful with is to ensure enough calcium, so I'm fixated with broccoli. You could use the ATEC scoring on the ARI website to see whether it makes any difference. Quote Share this post Link to post Share on other sites
big mamma Report post Posted August 29, 2005 Thankyou for your replies. I'm 99 % certain that i'm going to try the diet and I'm trying to get my battle plan in order so that I don't fall at the first hurdle. She has a big addiction to milk but can't stand the taste of soy or rice milk ( and neither can I ). What can I give her as her last drink of the day / first drink in the morning - do you just use juice ? So many questions !! Quote Share this post Link to post Share on other sites
call me jaded Report post Posted August 30, 2005 We were lucky because my son did like rice milk. He also drinks cranberry juice which is packed with anti-oxidants, or water. But you should be OK with milk if you're just going to do gluten free. There is a group called GFCFKids on yahoo which talks about all this. It has a very high volume of emails so I'm no longer a member. Also GFCFKidsUK which I still belong to which locates UK products, etc. I used to be a member of Allergy induced Autism too (there is a subscription charge for that one) which Marilyn Le Breton used to contribute to. Very handy if you are stuck or things don't go the way you expected. I do find it overly complicated to do everything the AiA way. They spend a lot of time contacting manufacturers to ascertain the exact processes involved, and it gets very confusing as to what is and what isn't approved. Over time we have moved away from substitutes and I make almost everything from 'scratch' in large quantities which I freeze. I have never made anything aproaching a reasonable loaf of bread and have long given up. I can knock up great varieties of pancakes, though! Just shout if there's something you're not sure about and I'll let you know what worked for us. Quote Share this post Link to post Share on other sites
baddad Report post Posted August 30, 2005 Hi jaded - That bread thing... Depending on what sends yours 'off' you may or may not be able to use Dietary Specials Multigrain. It is better than home made, and lovely for toast, but still not a lot of cop for packed lunch sandwiches! Also available on scrip if you have a reasonable GP... Ben also likes Antionette Saville's (?) White Rolls, which if you 'ping' to refresh in the morning actually stay very edible until lunch time! They're more like a bagel/muffin texture than a roll, but none the worse for that. He's also into Tesco's FF Pittas, and - lets face it, even wheat pittas are pretty chewy cold. I thought they had a bit of an after taste, but Ben likes them so what the hey. The latter two are expensive, of course, but spread out between the scrip multigrain it's not too bad, and I don't have to use the breadmaker any more. Very 'horses for courses' I know, but Ben has no noticable side effects with any of the above. BD PS: Great varieties of pancakes? Wasn't it you who bought the Ogran Pancake mix a while back? How VERY dare you!! Quote Share this post Link to post Share on other sites
call me jaded Report post Posted August 30, 2005 You have a mind like a steel trap! I say again in my defence that my daughter forced me to buy it! It has now become a proper family anecdote: The Time Mum [note it is now my fault] Made Pancakes That You Could Use as Wallpaper Paste. Personally, I need to move on from this disaster, but people won't let me. We found the Multigrain thing on holiday - v nice as toast, crumbled as sandwiches. And we like Antoinette's brownies - even the gluten eaters! Quote Share this post Link to post Share on other sites
baddad Report post Posted August 30, 2005 That's me, jaded, mind like a... whats that thing? you know it's made out of... that stuff that looks like baco foil only much MUCH harder... Bears cr*p in it - NO! that's a woods... bears get caught in it... ... ... Haven't found Antionettes brownies yet, but will keep an eye out. On the bread front generally, Ben recently got a newsletter from Juvela, and their 'country mix' (or 'rustic' - something like that) (?) is looking quite interesting for things like chapatis/Pitta's/nans... i think this also is available on scrip, so i'll have to do some experimenting. Will keep you posted BD Quote Share this post Link to post Share on other sites
call me jaded Report post Posted August 31, 2005 Oh dear baddie. Really did LOL there. Just in case there's any doubt, take it as a compliment that once something goes into your mind it doesn't escape. Literal thinkers, eh Antoinette's Chocolate Brownies 70g margarine 100g dark chocolate 170g caster sugar 2 large eggs 70g rice flour 1 tsp baking powder 1/4 tsp salt 1/2 tsp vanilla 70g chopped pecan nuts (optional) 11 inch long, 1 inch deep rectangular baking tray, greased with sunflower oil. Preheat oven to 180 degrees C/ gas 4 Melt margarine & chocolate in a saucepan over a low heat, stirring. Remove from heat, add the sugar and transfer to a mixing bowl. Let it cool slightly. Add the eggs, flour, baking powder, salt, then the vanilla and nuts. Pour into the tin and bake for 30 minutes. Cool in the tin and cut into squares. ******* I have real trouble in having any to put in an air-tight box. Quote Share this post Link to post Share on other sites
baddad Report post Posted August 31, 2005 Hmmm... Sound right up Ben's street. He can have the brownies, I'll eat the pecans, yum yum! BD Quote Share this post Link to post Share on other sites
big mamma Report post Posted August 31, 2005 Jaded, Baddad and any other Gf/CF fans !! I have seen a dairy free spread called Pure - can you use this as the margarine in this recipe - or any other that calls for margarine ? Also I keep reading that ASD children can also be intolerant to soya - although she doesn't like soya milk it hasn't made her ill or anything -how do you know if soya causes your child problems ? Quote Share this post Link to post Share on other sites
bid Report post Posted August 31, 2005 Hi B-M! Two of my children have severe multiple food allergies and we use Pure. I've used it successfully in cooking...cakes, etc. Hope this helps. Bid Quote Share this post Link to post Share on other sites
baddad Report post Posted August 31, 2005 Pure comes in two versions - One soya based and one sunflower oil. If you think your litlun has a problem with soya, go sunflower (personally, I prefer the sf one anyway, but ben seems happy with either and the sunflower one seems to have disappeared from my local tesco's - noted in another store that it has a 'new recipe' so may be a temp blip while they sort out stocks)! Problem with soya - don't know, 'cos Ben doesn't seem to have one... think it would just come down to observation. I have a friend whos littlun IS Soya intolerant, and with him it's good old 'runny bottom', but i don't know if this is a symptom in every case, or whether there are other effects on (i.e.) behaviour. Hope that's helpful BD Oh, and yes, it's fine for cooking in most cases, but can curdle if mixed with milk while melted, so take care. Quote Share this post Link to post Share on other sites
call me jaded Report post Posted September 1, 2005 (edited) We don't have a problem with soya, but don't have a lot in our diet - just the ocassional Provamel or Alpro 'yoghurt'. With my son his ears go bright red if anything disagrees with him. We use Organic Pure in the blue tub in everything. In my Tesco you find it in the organic dairy bit rather than where all the margarines are. Edited September 1, 2005 by call me jaded Quote Share this post Link to post Share on other sites
baddad Report post Posted September 1, 2005 As I was saying, PURE comes in three varieties... There's the sunflower one, the soya one, and then there's an organic one in a blue pack especially for smart arses... Thanks for the tip CMJ, I'll see if they have this one and give it a try next time there's no sunflower. L&P BD Quote Share this post Link to post Share on other sites
call me jaded Report post Posted September 2, 2005 he he baddie Quote Share this post Link to post Share on other sites
big mamma Report post Posted September 2, 2005 Just an aside - I'm going to a conference in Edinburgh on 15/10/05 which is all about dietary and other interventions which could help autistic kids and the keynote speaker is Dr Jacquelyn McCandless ( author of Children With Starving Brains ). Very strange that I should find out about this conference ( quite by accident ) when I'm looking at Juniors diet. Perhaps 'tis kismet !! Quote Share this post Link to post Share on other sites
big mamma Report post Posted September 11, 2005 Another question ! Are marshmallows gf/cf ? Any other sweets that you could buy in the shops ? Baked my first batch of gf/cf fairy cakes yesterday and they went down a treat ! I have never baked or cooked anything entirely from scratch before but I am determined to learn !! I have been trying junior with gf/cf versions of things she liked ie. chocolate and nice tasting breakfast cereals which she seems to enjoy for a couple of days but then starts asking for the 'proper tasting ones '. I also managed a completely gluten free day with her but next morning she was screaming for weetabix - she then ate one completely dry!! She never seemed to bother with weetabix before. She is now also resolutely refusing the DS toasted bread - even though she quite liked the taste of it before. Do you think I am just annoying her system by cutting back on the gluten during my 'testing' period - should it be all or nothing ? Just noticed that I've rambled on from more than one question !! Quote Share this post Link to post Share on other sites
baddad Report post Posted September 11, 2005 Big mamma - Firstly, I think you're going about it exactly the right way: testing different products to find what is and isn't suitable rather than just wading straight in and hitting brick-walls... The 'dry weetabix' isn't exactly surprising, and could be an indication that an exclusion diet is going to pay dividends... Marshmallows: Most of them are gf/df, but watch out for the wierd and wonderful ones (you know, the twisty 'barbers pole' varieties that taste like a mouthful of cotton wool - or a 'golden delicious' apple [aka golden crapple]. other sweetie options, many varieties of jelly babies. Some fruit Pastilles. SOME (sadly less and less) dolly mixtures. Candy shrimps/bananas (though watch colourings!)...there are a wide selection of quite tasty carob/non-dairy chocs in the freefrom sections or holland & barratt etc, and i also give Ben fruit and nut bars etc (like cereal bars but without the cereals!) and raisins/chopped fruit and nuts etc. Usually, I mix up a few items together to save monotony... Cereals: Instead of buying (i.e.) gorilla munch/mesa flakes etc try going for the Rice Krispie/Corn flake styles... Kellogs now mark that theirs contain Barley (in the malt extract), but most supermarket versions don't carry this warning; which doesn't necessarily mean they DON'T, so you might want to stick to the Doves Farm 'official' gf/df versions during the test phase... For ben, the trace elements in generic brands (if they are there) don't seem to cause a problem, but it's horses for courses and better to 'test' ('challenge') after the evaluation period... You could also try the 'Roseanne' con of putting generic of gf/df versions in Kelloggs boxes - amazing thing, the placebo effect!! HOME BAKING: Much easier than most think, with Doves Farm flours readilly available etc. start with easy options: pancakes/microwave sponge puds/rice crispie cakes/fairy cakes etc, and save the Fruit de mer/Bouffe en Croute/Tart Tatin signature dishes for another day (or decade!). gf/df Pastry is NOT on the 'home cooking' menu Hope helps, and KUTGW! L&P BD Quote Share this post Link to post Share on other sites
big mamma Report post Posted September 11, 2005 Cheers BD - I'll keep plugging away at the home baking - I've already eaten 6 of the fairy cakes - better look out my kaftan ! Quote Share this post Link to post Share on other sites
call me jaded Report post Posted September 11, 2005 My son never ate sweets (he just doesn't like them - he's a cake man) so I can't really give any suggestions. Just something to know is that glucose syrup can be made from wheat, so it's suck'em and see. There is definitely something in the Tesco Free From ready made chocolate cakes that doesn't agree with my boy. If I'm short on time I use DS chocolate cake mix to make brownies - no messing about with fudge icing. We also make some sticky rice crispy things by melting marsh mallow with Pure and folding in rice crispies. I pick out only white M/M for this as red/pink food colouring was something I knew sent him hyper long before we started. I wouldn't bother trying to do whole days GFCF here and there. Keep on trying out different products. When you're ready just go cold turkey and get it over with. My son ate nothing at all for three days and then scoffed an entire batch of muffins as they came out of the oven. We had our very first proper formed non-stinky poo later that day. I knew it was working even though his withdrawal lasted [cough] three months. According to Sunderland Uni this is how long it takes for gluten to come out of the body. We get infringements very occassionally. I can tell how bad it was by whether his night sweats return. You can use digestive enzymes to get over this. I never bothered importing them as it was a complete rigmarole with customs & excise, not to mention expensive, when we first started. It's now much easier to do, but we manage fine without. The other thing was I kept looking for a 'good time to start'. It never came and we just did it one weekend. Back to the decorating... Quote Share this post Link to post Share on other sites
baddad Report post Posted September 11, 2005 Jaded - Tesco choc cakes: Is that the individual bars or the 'slab' cake?, 'cos now you mention it... With the crispie cakes, try adding chopped dates into the mix - naughty, but nice!! L&P BD Quote Share this post Link to post Share on other sites
call me jaded Report post Posted September 11, 2005 Baddie Those minuscule cake bars that are gone in two small bites. Haven't had the slab cake for a very long time but seem to think that has the same effect. I stopped writing these things down years ago. We put dried apricots cut really small in our rice crispy melts. Shall have to do dates for a change. On the cornflake front I really like the Whole Earth ones. They taste just like cornflakes used to. Big mamma When we did the diet at first I put the whole family on it. I dropped a dress size without trying - in fact my role as quality controller meant I was eating more than usual. When I ate wheat again, it came back I should really give up my lunchtime sandwich, but find it quick and convenient. Quote Share this post Link to post Share on other sites
big mamma Report post Posted September 11, 2005 My daughter has horrendous night sweats - she looks like her head has been dipped in a bath of water. Doctor assured me that we all sweat like this during the night - we're just not awake to notice !! Did the rice crispy / marshmallow thing 2nite. The mixture was a bit sticky to work with ( probably just the right consistency for waxing your legs ) but again end result was quite tasty. Two home bakes in 2 days - I'm away for a lie down in a darkened area. Quote Share this post Link to post Share on other sites
call me jaded Report post Posted September 12, 2005 Ehhh what do doctors know. They're too busy focussing on getting you out the door in ten minutes or they won't meet their targets. I feel sorry for them really. You've got some really positive signs that this is going to make a difference. As for home-baking I've had a fair few disasters. I'm a big fan of Antoinette Savill: you can serve all her dishes to guests without any apology about the funny diet. Her pear and almond pudding is the dish I most often get requests for. Quote Share this post Link to post Share on other sites
call me jaded Report post Posted September 12, 2005 Forgot to ask - do the night sweats have a 'maple syrup' (kind of sweet/musty)smell to them? Quote Share this post Link to post Share on other sites
big mamma Report post Posted September 12, 2005 Hi Jaded, Yes - her head has a very distinctive smell at night and not that pleasant to be honest ! Also when she wakes up in the morning she is all over the place - like her mind has woken up before her body or something. I have to tread very carefully with her 1st thing as she can have quite wild meltdowns if I say the 'wrong' thing - she'll throw herself about and has hurt herself on the wall a couple of times. As long as I stay calm it will eventually pass over but it's very strange. Quote Share this post Link to post Share on other sites
baddad Report post Posted September 12, 2005 Forgot to ask - do the night sweats have a 'maple syrup' (kind of sweet/musty)smell to them? If they have a dank, urinary smell - it's not sweat!! SORRY SORRY SORRY!!! I don't mean to do it, it just sort of happens More seriously... I never made any connection! Ben used to sweat like billy-oh, and it phased out around the time we made the ditary changes (I think??) - Sort of assumed at the time it was just that thing about small kids not having a working temperature control, and he's just grown out (or rather 'in') to it. Hmmmmmmmmmmm. Off for a ponder... BD Quote Share this post Link to post Share on other sites
big mamma Report post Posted September 13, 2005 If the product says gluten free but has glucose syrup noted in the ingredients then can I assume it's ok ? What about Heinz baked beans ? Quote Share this post Link to post Share on other sites
baddad Report post Posted September 13, 2005 Hmmmm. If only it was that simple!! For the most part 'gluten free' and 'suitable for coeliacs' will be OK, but there are permitted 'trace' levels that these labels can conceal... SOME kids, apparently, may react to even tiny trace elements, but this is not the case for Ben or any other kids I know... In all honesty, if you look at the 'blood/brain barrier' theories, the argument for 'trace elements' causing problems is pretty thin; but with that said, I wouldn't deny the possibilty, 'cos some parents swear it happens and who am i to doubt them? Ben eats heinz beans with no obvious problems, and most supermarket brands too. I am wary about generic brands you might find in (i.e.) seaside cafes, but that goes with the territory! And just in case it's your next question Heinz tomato ketchup doesn't casue him any probs either! Brown is harder. Ther's a sainsbury's fruity one that seems ok, and a nice spicy one in the 'organic' section at tesco's, but definitely NOT daddies!! L&P BD Quote Share this post Link to post Share on other sites
big mamma Report post Posted September 14, 2005 Thanks BD - have always found 'Daddies' a bit problematic as well ! Quote Share this post Link to post Share on other sites
big mamma Report post Posted October 1, 2005 (edited) Hello all, Over the last 10 days I have changed daughters milk to Guernsey and only allow 1/2 cup in morning and 1/2 cup in evening. She had a bad bottom rash again but I persevered through it and it's now almost away. Have also stopped all yoghurts , cheese etc. After about a week I noticed that ( sorry about this folks ) her poos were normal looking and it didn't seem to be such a strain for her - she also has stopped complainging about tummy ache. My next step is to remove all forms of dairy completely but - she has drastically reduced her food intake in the last week - she used to have quite a big appetite and would have a go at anything - now she is picking at her lunch and refusing her tea. She's even refusing chips and she loved them before. I'm quite concerned - is this typical ? Edited October 1, 2005 by big mamma Quote Share this post Link to post Share on other sites
call me jaded Report post Posted October 1, 2005 This is where you have to have nerves of steel. What could be happening is that she is no longer getting her 'fix' from what she's eating and food no longer holds the same appeal. This phase does pass and it's over a lot quicker for dairy than for gluten. You could give her a multi-vit and mineral supplement (dairy free, of course) if you're worried. Good news on the poo front! he he Quote Share this post Link to post Share on other sites
big mamma Report post Posted October 1, 2005 Thanks Jaded, Think I will get her a multi-vit just to ease my mind a little. You can only imagine the excitement in this household caused by a nicely formed poo !! Quote Share this post Link to post Share on other sites
baddad Report post Posted October 1, 2005 Thanks Jaded, Think I will get her a multi-vit just to ease my mind a little. You can only imagine the excitement in this household caused by a nicely formed poo !! Don't need to imagine, lived it! Glad it's (sort of) going well... I'd agree with CMJ, that the evidence is that there are good things happening internally, even if it's currently problematic externally. Hope it ALL comes together for you soon L&P BD Quote Share this post Link to post Share on other sites
