skye Report post Posted August 4, 2009 Hi, I am starting DD on GF/CF diet this week. She has had digestive problems since she was born and I am just really fed up of her always being poorly. I have read a lot of information on this diet and at one point I was not convinced to try it out. I am in a different place now and I am willing to try anything to make my daughter happier and healthier. I am very worried about trying the diet as DD is extremely picky and only eats a select few of foods at the moment, most of which contain either dairy or wheat. I was really hoping some people who are currently using this diet could recommend some good Free from items to try out on DD. I am going to Tes and AS tomorrow and was hopeful that someone had some practical suggestions for making food for such a picky eater that is free from everything. Also I thought some who uses this diet may know about some good products that are currently available in the supermarkets. I have seen some nice bread online at Tes.. and was wondering if it is any good? All suggestions, tips, tricks, advice or personal stories are welcome. Thanks, Skye Quote Share this post Link to post Share on other sites
Tally Report post Posted August 4, 2009 I have tried it because I have a lot of gut problems. I found it helped a great deal with my gut problems and also helped me feel less tired. After being really strict about it for 9 months, I found that I could eat small traces of gluten with no problems, and even larger amounts of dairy - the occasional yoghurt or piece of cheese for example. I have just moved house and am too tired to adhere to it properly at the moment and having problems again. I have not found it has had any effect on anything autism-related, only the tiredness and gut problems. Quote Share this post Link to post Share on other sites
call me jaded Report post Posted August 4, 2009 GF bread is vile most of the time - we don't eat it at all. We don't try to replace like-for-like. We cook a lot from scratch - much cheaper, tastes nicer, no additives to catch you out. Ideas: Roast and all the trimmings chicken curry -throw in any leftover veggies from the roast (delicious) I quite often use a 'free from' curry sauce, having been caught out by spices that were less than pure Rice salad (cook double the day before), corn on the cob (in season now!) Helen Browning Gluten Free tiny sausages (less is more), mash, soya soft cheese, baked beans GF pasta with either pesto or a tomato and meatball sauce, big salad Irish stew some kind of casserole (thicken with cornflour) - goulash is popular chicken & veg cous (using rice, not couscous) clear veggie soup (sometime use frozen 'polish' soup veggies) with toasted GF bread, if you must Youngs GF fish fingers, McCain original oven chips, not complete without birds eye peas - good for when friends come to tea GF pittas turned into 'pizza' - tomato paste and toppings - just grill them homemade burgers - I add worcestershire sauce, jacket potatoes and broccoli DS ate nothing for three days, then demolished a batch of GF muffins. I was determined, though, because the 'dire rear' cleared up within a couple of days. Wobbled about six weeks in and nearly stopped, but because I had kept a behaviour diary before, during and after I was able to see the difference and carry on. Been doing it for 7 or 8 years, it's a way of life. 3 out of the 6 of us do seem to have some kind of gluten and dairy intolerance of some kind. FIL died of cancer of the stomach, which was the catalyst that made me get a grip and do something about it. Hope it goes well for you - I'd say you'll know within the first week. Quote Share this post Link to post Share on other sites
call me jaded Report post Posted August 4, 2009 Grumpiness lessened and attention-span improved, both very significantly. He had obviously been in a lot of pain, because if he ever reaches for something that has gluten or dairy I tell him it's not for him and he drops it straight away, and that's many years later. His school see this too Quote Share this post Link to post Share on other sites
Kathryn Report post Posted August 4, 2009 Hi Skye, Good luck! If you browse through the threads in the Diet section, you'll see helpful suggestions that people have posted over time, including where to get CF/GF items. Let us know how you get on. K x Quote Share this post Link to post Share on other sites
baddad Report post Posted August 4, 2009 GF bread is vile most of the time - we don't eat it at all. We don't try to replace like-for-like. We cook a lot from scratch - much cheaper, tastes nicer, no additives to catch you out. Two new ones to look out for: Tesco's (and asda, I think - or maybe aldi, but one we haven't got locally) are selling 'genius' uncut bread which is really good and sainsbury's are doing a 'Mrs Crimbles' uncut loaf, which isn't quite as good or as natural looking but tastes much better than the stuff you used to get. i made a summer pudding with half a leftover Mrs Crimbles today and it is absolutely garjuss for that! If you can find it, genius is the nearest thing to regular bread yet. mrs crimbles tastes a bit like the 'best' home-made stuff I made but without the slightly bitter 'soya' aftertaste. 3rd fave now 9used to be number 1) is Energ 'gluten free loaf' - NOT to be confused with their rice loaf... Quote Share this post Link to post Share on other sites
Tally Report post Posted August 4, 2009 The Mrs Crimbles bread mix makes quite nice bread too. I add some seeds to it as it only comes in white bread. I find it's best to slice it and freeze it as soon as it has cooled as it seems to go stale quite quickly otherwise. Quote Share this post Link to post Share on other sites
skye Report post Posted August 4, 2009 (edited) Thanks for the replies everyone. Especially the meal ideas!! Yes the Genius bread is what I was referring to at Tesco's. It looked ok. I will look out for the bread mix as well. I will let you all know how I get on. I have also checked into the Sunderland test after reading about it on quite a few threads. I am going to ring and speak with them tomorrow. Does anyone know the costs involved? I guess I will find out in the morning. I believe the child has to be on a normal diet before the test for the peptides to appear, but I am doing a lot of research and trying to get my head around it before I jump straight in! Thanks, Skye Edited August 4, 2009 by skye Quote Share this post Link to post Share on other sites
call me jaded Report post Posted August 5, 2009 The last time I looked it was £60 - the price hasn't changed for years. Quote Share this post Link to post Share on other sites
baddad Report post Posted August 5, 2009 The last time I looked it was £60 - the price hasn't changed for years. With a supportive GP this can be done as an NHS referral... any subsequent tests (i.e., in a few years time you might want to confirm them when 'testing' diets and their benefits) are slightly more complicated and GP and parent/patient have to sign 'waivers' as more than one test is seen as 'research' rather than diagnostic tests (or some such ). My own GP didn't have a problem in either case, but i know I've been quite lucky in that respect. Hope that's helpful L&P BD Quote Share this post Link to post Share on other sites
skye Report post Posted August 5, 2009 Thanks. I have contacted the Sunderland Autism Research Centre. They are sending me some info in the post. Apparently they are now moving out of the University into a research facility outside of the college but will be back up and running again in a few weeks. I will bring the info into the GP and see what he thinks. XO Quote Share this post Link to post Share on other sites
purplehaze Report post Posted August 6, 2009 Hi my son was tested by the Sunderland Autism research team-after contacting them by e-mail and explaining my sons problems they offered me the test for free. However my Doctor didn't understand or think the results mattered and didn't recommend any changes in his diet. Have you got a dietian involved although my sons didn't recommend a gluten free diet she was willing to support us if I decided to change. After talking to everyone I decided not to as my son is so fussy he hardly eats anything any way. I do kind of wish at times when his stomach is really bad that I had done it. I would be very interested in hearing how it goes-good luck X Quote Share this post Link to post Share on other sites
baddad Report post Posted August 6, 2009 Quick update on bread! yesterday we had to travel to a different tesco's in search of skool uniform, and that branch carried the Genius BROWN loaf, which Ben tried for the first time this morning. Huge thumbs up from the boy, and it does have a slightly more 'grainy/nutty' flavour than the white, so well worth a looksee if you can find it. I can honestly say that if it wasn't for the cost i would quite happily eat either of the genius breads instead of buying seperate for me. let's hope the supermarkets they've launched it through don't mess up the distribution and out of stock it to the point of extinction! Quote Share this post Link to post Share on other sites
skye Report post Posted August 9, 2009 We do not have a dietician or anyone involved. I contacted Sunderland after reading about the test on this and another forum I go on. I am not really worried about what the doctors say as I trust them about as far as I can throw em! I am just getting the testing done because I have always suspected a problem with dairy. I am hoping there is not also a problem with gluten. I just want to know really what the culprit is and then remove it. Thanks for the idea about the bread BD. I looked at Tesco's and didn't see it. I didn't look too hard becaue I have decided to hold off until the urine analysis is done. I may still cut out both once I get the results through. I am just really sick of putting my fears through to the GP about food allergies or something to only get told to not restrict DD's diet at all and that they would not test for food intolerance except for in a last resort situation. As far as I am concerned this is a pretty dire situation. So once again it is up to me to get things sorted out for my child. I am pretty used to it by now. We live to fight another day!!! Quote Share this post Link to post Share on other sites
call me jaded Report post Posted August 10, 2009 Skye I had the same, but DS's schools (both of them) have been very supportive. Quote Share this post Link to post Share on other sites
trekster Report post Posted August 10, 2009 Hello To begin with your kid is likely to refuse any alternatives put in from of them. As for the testing the only real test is trying the diet for a year. You cannot tell if your negative is a false negative or a real negative. ive done no tests at all not one, ive just read the literature and if i think it could help i will do something. Alexis Quote Share this post Link to post Share on other sites
skye Report post Posted September 15, 2009 Well, We finally got the urine analysis sent off. I am not even waiting for the results before removing dairy from the diet. I know for a fact that that is the main culprit! I am off to buy some dairy free stuff. Any advice on the best cheese/soft cheese is really appreciated. Thanks, Skye Quote Share this post Link to post Share on other sites
baddad Report post Posted September 15, 2009 Well, We finally got the urine analysis sent off. I am not even waiting for the results before removing dairy from the diet. I know for a fact that that is the main culprit! I am off to buy some dairy free stuff. Any advice on the best cheese/soft cheese is really appreciated. Thanks, Skye Ah, Cheese. Sadly, cheese is one of those things that there's just not really a close alternative too. There are a few brands (Redwood's 'Cheezly' offers a good range, and in the mild 'melting' varieties (mozerella and edam) isn't too bad - if you 'google' redwoods you'll track down a website) and you can find slices and blocks from various manufacturers in many branches of holland & barrett. some sainsbury's carry a brand made in Ireland, but as my local branch dropped it i can't remember the name! Tofutti make a nice (ish) soft cheese and also various slices. Hard to find at the moment, but PURE, who make the 'butters' have recently launched hard and soft cheese through Tesco's... I've found the soft one, but so far have had no luck with the hard (fnar fnar)... For topping pasta you can get 'Parmazano' in little cardboard tubes and they now do a 'cheddery' one too. My son eats all of these, but none of them are what you could call 'cheese', so you're son's either gonna like them for what they are or you're going to have a bit of a struggle. I was quite excited when i saw 'Lacto-free', but don't be tempted... When i tried my son with their milk there was a gradual build up of problems, and then someone pointed out that 'Lactose free' isn't necessarily the same as 'casein free' (?) I haven't looked at the science, and it may have been a coincidence, but as my son went through a difficult stage at the time and there was no real need to switch (as he's happy with the alternatives) I didn't see the point in experimenting for longer. Good luck with the tests, and if indicated with the implementation. L&P BD Quote Share this post Link to post Share on other sites
skye Report post Posted September 26, 2009 Thanks BD. I will check into that shaky cheese in the tubes. So far she isn't keen on any of the cheese alternatives. I have tried everything. Dairy free cheese sauce, soft cheese, cheese slices and blocks of soy cheese. She seems to be embracing the dairy free lifestyle though. She hasn't had a belly ache in the week and a half since started on the dairy free stuff. It's great!! I got the urine analysis results back from Sunderland. They said that the Gluten readings are normal and that they would recommend removing the dairy straight away and possibly removing Gluten in a couple of months to see if it has any desired effects. I am happy with this! Now have loads of gluten free stuff around as I was buying bits here and there in anticipation of the results. I am sure we can still use it though. It's a good day!! On top of the diet going great I gave DD melatonin for the first time last night and she said she was tired, didn't want a bedtime story and laid down and went to sleep!! It was amazing. I hope it lasts with no side effects!! May post in the medication area about this one. Have a great weekend!! Skye Quote Share this post Link to post Share on other sites
baddad Report post Posted September 26, 2009 Thanks BD. I will check into that shaky cheese in the tubes. So far she isn't keen on any of the cheese alternatives. I have tried everything. Dairy free cheese sauce, soft cheese, cheese slices and blocks of soy cheese. She seems to be embracing the dairy free lifestyle though. She hasn't had a belly ache in the week and a half since started on the dairy free stuff. It's great!! I got the urine analysis results back from Sunderland. They said that the Gluten readings are normal and that they would recommend removing the dairy straight away and possibly removing Gluten in a couple of months to see if it has any desired effects. I am happy with this! Now have loads of gluten free stuff around as I was buying bits here and there in anticipation of the results. I am sure we can still use it though. It's a good day!! On top of the diet going great I gave DD melatonin for the first time last night and she said she was tired, didn't want a bedtime story and laid down and went to sleep!! It was amazing. I hope it lasts with no side effects!! May post in the medication area about this one. Have a great weekend!! Skye Great news... just remind her when she's missing cheese that 'no cheese means no tummy aches'... try her again with the milder cheese alternatives when she's had time to forget what the real stuff tastes like. She may like it then for what it is rather than what she would want it to be, IYSWIM. I wonder if you can whether it's worth holding off on melatonin for a while? It may be that the changes your making to her diet will help at bedtimes anyway, especially if you can plant the suggestion that it should (don't knock it - the powers of psychology/placebo effect are quite well documented ). Well done, both of you Big changes like this aren't easy to negotiate, so you've done a terrific job between you. L&P BD Quote Share this post Link to post Share on other sites
Sally44 Report post Posted September 26, 2009 My understanding regarding testing is that allergies can be tested for but intolerances cannot. I had tests done for my son via Sunderland university and it came back positive for peptides for both glutein and casein. I did change his diet for a while, but did not notice any dramatic improvement. So we went back to eating normally. However for the last 6 months we have all been having goats milk and not cows milk and school have noticed a huge improvement in his concentration, performance and contribution in lessons. Now I have no way of knowing if the change in milk had anything to do with that. I too have changed to goat milk because I am intolerant to cows milk. And I feel much better. I am no longer tired all the time and don't feel 'drugged'. I find the whole subject very confusing and complicated because intolerances can be quite hard to identify especially if you don't begin to feel ill until 2-3 days of eating a certain food. I don't know how it works and I tend to be very sceptical of other people telling me about their intolerances. Afterall, intolerances do seem to be a relatively new problem. My father and brother are also intolerant to diary. We also have a couple of chromosome differences that affect digestion and we also have hemochromatosis (don't know if i've spelt that wrong) in the family. So I am open to the suggestion that biological factors may well be causing some problems. I did talk to the paediatrician about the Sunderland results and she said that she had never come across anyone who ever had a 'negative' result. She was happy to write a letter into school saying my son was to be GF/CF. But trying a different diet is one of the less invasive things that can be tried to see if there is improvement, especially if a child does not appear to be thriving on food. Quote Share this post Link to post Share on other sites
Tally Report post Posted September 27, 2009 Most people cease to produce lactase in adulthood. Lactase is the enzyme the body needs to digest lactose, which is in milk. Most adults in the world are intolerant to dairy. Northern Europeans are the exception to this rule, and most Northern Europeans continue to produce lactase into adulthood - but not all. However, this is different to the intolerance which is thought to be common in ASD, which is to the protein Casein, also in milk. Milk proteins in cows milk are quite large, and a lot of people who have a problem with cows milk are able to drink sheep or goat milk, because they have smaller proteins. Humans are the only animal who eat another species' milk. Quote Share this post Link to post Share on other sites
joybed Report post Posted September 28, 2009 I have recently had food intolerance testing performed, apparently when you are intolerant to a food you produce IGG antibodies instead of the IGA a classic allergy would release. I did the test because I have little health worries most of my life, IBS, migraines, recurrent thrush, oesophagitis, iron deficiency, unexplained vomiting, severe constipation etc etc. My tests showed i was intolerant to eggs, cows milk, gluten, cashew nuts and white fish all things i love and eat frequently, as well as being mildly intolerant to other things that i have to reduce my intake of such as beef, corn yeast to name a few. Since friday i have been free of all the above and am still at the stage of feeling pretty rough but know i will get through it. I sat and cried the other night because i really wanted a cup of tea with milk in it but am now used to drinking it black (thanks Dad for telling me to make it weaker than usual). Have just had a discussion with my DH who thinks my new diet is too restrictive and have had to spend an hour reassuring him i am meeting all my nutritional requirements. Hopefully i will feel better soon. Marcus was gluten/ casein free for about a year and coped very well on the diet but his grandmother wouldn,t stick to the diet so he was constantly getting a hit of gluten/ casein. We abandoned it in the end as it was too confusing for him as to why nanna was more layed back than we were. I tried goats milk but was told by my nutritionist that it is very similar to cows milk so that too should be avoided, the trouble is i don,t really like any of the alternatives and am a little worried about calcium deficiency especially as i am nearer 40 than 30. i can tolerate soya yoghurt so will have to eat loads of them. DH is as we speak at the supermarket looking out milk alternatives for me to try. Quote Share this post Link to post Share on other sites
trekster Report post Posted October 9, 2009 (edited) i found it greatly helped my ME. i made the mistake of not cutting out the msg or the aspartame and did better after i did this. i had to include b6, mag, cal, milk thistle, b12 and a few other supplements as well as the diet. They often appear after going gf/cf since the addiction tends to hide them at the time. i hope you can try again sometime. ive been on it about 4 years now and im still improving. Alexis Edited October 9, 2009 by trekster Quote Share this post Link to post Share on other sites
LHutson Report post Posted November 25, 2012 I use www.freefromforkids.co.uk to order the foods I have trouble finding for my boys who are on the GF/CF diet. They have a super choice of products. I am not related to them, but have found them to be good value and helpful. Quote Share this post Link to post Share on other sites