My jaw dropped to the ground after seeing your show on Today Tonight and thinking "that's my son!!" I thought I had tried everything to work out what was wrong with my son as a baby - he is 4 now. He wouldn't sleep. I was lucky to get 15 minutes sleep out of him day or night - doctors were saying it was colic, no remedies would help - nothing would work - he just constantly screamed and screamed and screamed. I thought I was going mad. It wasn't until I weaned him off breast
milk that he started to calm down a bit - but he is still difficult and hard to live with. My other two children are not like this at all.

I could never come to any conclusions and neither could anybody else. I noticed recently after I ate certain foods, I would feel tired and have to lie down and in two incidents recently I could not keep my eyes open and had to immediately lie down and sleep. I thought this was to do with fats (margarine etc).

But after seeing the show it is like the light has dawned. It has been one week now and we have been buying preservative free bread - and I am already noticing a slight difference in my son. I intend to eliminate other preservatives and get to the crux of it all. Thank you and I feel that I am at the beginning of the trek to a new and improved life.

I was extremely interested in the story of bread and ADHD on Today Tonight. I do not have an ADHD child however I used to have a child that could be quite erratic sometimes (like they all are at 5). He is dairy free and I have put him on preservative free bread over the last 2 weeks. Now I have a completely different child! No more tummy aches (used to occur every couple of nights) and very balanced behaviour. - email

My son was experiencing behavioural and learning problems. Through diet (eliminating 282, other additives and some salicylates) I have seen some wonderful changes in him, especially in his sleeping. For the first time in his five years of life, he is sleeping 12-14 hours a day. - email, WA

Congratulations on your fantastic work with the bread preservative research and media presentation. It certainly has a huge amount of people interested in our local towns. Many families in our district have tried avoiding 282 as a result and have had fantastic results, with much happier, easy-going kids. Our local school tuck shop is even considering switching to preservative free bread which I am sure will make a huge difference in the school as it is known to be a particularly bad school with very high teacher assault rate -both verbal and physical - and terrible bullying issues. I have also given their committee a copy of your tuck shop paper - they were very grateful for the info. - email, WA

Congratulations on the publication of your research on 282! I couldn't help but remark to my wife that Sue Dengate is probably a modern Rachel Carson. Her book, "The Silent Spring" about the consequences of using DDT, changed the way the world looks at environmental chemicals. Your books and untiring effort are starting to produce, throughout Australia and even the world, a general knowledge of food intolerance and its consequences. Truly a monumental effort. - Bernard Trudgett, Wollongong. [Thanks, Bernard, and thank you to everyone who has written to congratulate me on the study's publication  ]

"I will be trying the elimination diet with the whole family. It will be hard to start with, but after reading the shopping list on page 200 of the cookbook, it doesn't look as bad as it seemed at first. The first shop will take a while, but I'm sure it will be worth it." - email, Qld

I've read many of the stories on your website. It's amazing to me that manufacturers think it is necessary to add so many chemicals. People need to buy food all the time. If no one added colours or flavour enhancers and other chemicals, I'm sure the consumers would be happy to buy what was available, based on price and quality. I was very happy with the foods offered 30-40 years ago, before so many chemicals were added. Thanks for all you and your husband have done in these studies. I can only imagine what a battle it has been for you. - email

This week mum has started us on a failsafe diet with foods that have no colours or preservatives in them, I think it's good because I might get less migraines and not feel sick as often and maybe even do better in school. Hopefully this will help my sister who has learning disabilities and maybe she'll be able to read like me.

It's amazing how many colours and preservatives are in food, I checked all the labels when I went shopping with mum and I helped clean out the pantry too. Mum made some sherbert and it tasted like the real thing but without the horrible colours and preservatives in it. The new diet is good, it's fun to try out new things and they taste good as well.

Next week we are going to clean out the bathroom and laundry cupboards and buy more friendly shampoos and toothpaste and it's goodbye and into the garbage bin with all the bad things.

I wish our Prime Minister would realise what these things are doing to us. - Caroline, aged 9.

Antioxidants (310-312, 319-320) are the most frustrating additive by far. You can usually see colours and other additives are usually on the label in some sort of description. But antioxidants are not considered to be preservatives by regulators, and the manufactures are not always required to list them on the label, so antioxidants are a secret ingredient unless you go to extreme lengths to ask first the supplier of the food and then the manufacturer of the contents.

There are alternatives to the nasty antioxidants which are failsafe (300-309) and haven't been associated with cancer in rats, possible genetic changes, nausea, vomiting, ringing in the ears, delirium, collapse and children's behaviour, just to name a few.

Even failsafe foods like Betta Natural Cone Cups can't be trusted. I found this out after my son experienced an adverse reaction to these cones. When I telephoned the supplier, I was told that they had changed their oil and it now included BHA (320) and tBHQ (319).

What hope have we got for our children if such nasty additives are hidden in our foods? – Jenny, Warragul, Victoria

.I think it is a very cruel thing for parents as well as children to go through. Please send me as many brochures as you can. I would like to leave some with my doctor and also at my child health clinic for them to learn about it and be able to help other mothers identify food intolerance as a problem - email, Qld

One of the guys at work has three kids, including one who had major behavioural problems. He and his wife had been to see professionals, including psychologists, to try and find out what the bloody hell was wrong with their son. In the end, they actually thought they were bad parents. When I spoke about Sue's book, they bought it and started giving their kid preservative-free bread instead of supermarket bread. Guess what. The little boy's behaviour changed dramatically for the better. That was nearly a year ago and they no longer seek professional advice on how to bring up their kids. Amazing.

There is no doubt about it, Sue Dengate is definitely on to something. I just wish more people would listen. - email

You mentioned the additive 282 in bread causes behavioral problems in children. What about adults? I only started eating 8-10 slices of bread a day in June. It started out with 4 slices of toast for breakfast. Two of the slices were for my 2 year old, but when she didn't eat hers, I ended up eating all 4 pieces. I started eating 1 sandwich for lunch but was craving more so I have been eating 2 sandwiches now. Sometimes at dinner we have toasted sandwiches. I'm hoping it is the bread that has been making me feel so hateful and easily annoyed. I never used to be set off so easily. Now it seems that I can't even talk to my husband without getting upset and he is probably one of the nicest, easiest-going husbands around. I'm going to go off bread with 282 in it and see what happens. I'll let you know in 3 weeks if I'm feeling more normal.

Two weeks later: After the first couple of days I started feeling less uptight. By the end of the first week I was feeling great. Then we went on a trip over this last weekend. I'm not sure if it was some toast I had both mornings where we stayed but the last few days I have been feeling all uptight again. We also stopped at McDonalds for breakfast on the way home yesterday and I'm not sure if there is 282 in the muffins. Now that I'm back home I will not be buying bread with 282 ever again. - email

Q. I have a son with ADHD, behavioural problems and a learning disability and another with a learning disability. I would like more information about the brands of bread/bread mixes that are free from the calcium propionate (282). Are you going to run a trial in Victoria ? If yes, I am interested in participating. Any extra additional information that you can give me I would greatly appreciate it. - by email

A. Sorry, there are no future trials planned, although many parents have volunteered. You don't need to take part in a study to trial the elimination diet. The bread preservative is not the only food chemical which can cause problems. Ask the phone contact in your area (see website)s on the website or email me for the name of a failsafe-friendly dietitian who will supervise this diet for you.

Q. I decided to try removing the additive 282 from my families' diet to see if the behaviour of my children would improve. So far they appear to have only be behaving worse. Have you heard of this happening before?

A. There are at least three possibilities. First, it could be withdrawal symptoms. Food additives are addictive. When you eliminate them, you can expect withdrawals which usually only last two days sometime in the first two weeks. Second, it could be that some other food chemicals - including natural ones like salicylates in fruit juice - are affecting your children and you have unknowingly introduced more of those at the same time. Third, are you sure the bread you have switched to is preservative-free? There are numerous instances of mislabelling or misinformation. If buying unlabelled bread, insist on seeing the label on the premix. If they won't show you the premix label, don't buy it. Note that Bakers Delight bread boasts 282-free, but it does contain 223 (sodium metabisulphite) which affects some kids just as badly. If buying labelled bread in a supermarket, ask to see the premix label for an instore bakery (although this does not guarantee the baker has used the correct premix, and there have been problems with that too). If the bread comes from out of store, ask which bakery, phone that bakery and ask about 282. There are many instances of wrongly labelled out-of-store bread. Brumby's is very safe - they do not have 282 in any of their breads.

Q. I asked at our local bakery whether they had preservative and they swore they didn't, but my sons and I reacted to it.

A. Many hot bread shop attendants will say there is no preservative in their bread because they don't add any and it isn't always listed as preservative. It is often listed as mould inhibitor (282). You need to see the premix label with your own eyes.

I believe that 282 is the worst food additive. It is hidden in a healthy food (bread and crumpets) and most people don't know about the problems it causes in children. Doctors don't know about it, so therefore it doesn't cause a problem (yeah right!!). It turns good kids into screaming, tantrum throwing, horrible children with no idea why. That's why I hate 282 more than all other additives. I don't like the others much either!! - this is an entry in the Worst Additive competition, winners to be announced in the next newsletter, out soon

Q. You mentioned the additive 282 in bread causes behavioural problems in children. What about adults? I only started eating 8-10 slices of bread a day in June. It started out with 4 slices of toast for breakfast. Two of the slices were for my 2 year old, but when she didn't eat hers, I ended up eating all 4 pieces. I started eating 1 sandwich for lunch but was craving more so I have been eating 2 sandwiches now. Sometimes at dinner we have toasted sandwiches. I'm hoping it is the bread that has been making me feel so hateful and easily annoyed. I never used to be set off so easily. Now it seems that I can't even talk to my husband without getting upset and he is probably one of the nicest, easiest-going husbands around. I'm going to go off bread with 282 in it and see what happens. I'll let you know in 3 weeks if I'm feeling more normal. Please let me know if you have heard this happening to adults ?

A. One of the mothers in the bread study reported similar effects and there have been others. A number of people have reported the same kind of cravings - gradually eating more and more preserved bread. The bread preservative is not the only food chemical which can cause these symptoms but if it does affect you, you should feel better within days of avoiding it.

Q. Calcium propionate and related preservatives belong to the GRAS list of chemicals, "Generally Recognised as Safe". The public has been assured for decades that the safety of these chemicals is conclusively proven. If indeed propionates are found to be unsafe, what assurance do we have of the safety of other food-additive chemicals on the GRAS list? - email, Sydney.

A. Additives are never tested for their behavioural toxicity, that is, their effects on children's behaviour or learning. There are no assurances regarding behavioural safety of any additives. There are 50 "safe" additives that have been associated with behaviour problems, see list on the website.

Q. Thanks for interesting article on the effects of bread preservative. I went to my heart specialist a couple of weeks ago and told him I that when I eat bread, it makes the rhythm of my heart go absolutely crazy. It misses one beat in four and makes me feel quite unwell. He told me that was absolute nonsense, but he would get me to wear a 24 hour heart monitor. So I did that and when they analysed the data, sure enough, 35 minutes after I ate four slices of bread, the graph went wild. But he still doesn't believe that it was caused by bread. So I'm going to look for another heart specialist who will listen to me. It was a real comfort to realise that there is a doctor (Dr David Brewster) who does believe beyond the textbook. Have you had any experience in 282 adversely affecting heart rhythm? I would be really interested to know whether you have had any other reports of 282 having other health side effects. - by email

A. See Factsheet for report of fast heart beat (tachycardia) linked to 282.

Thank you Mrs Dengate, I think you have answered my questions. I took my 4 year old daughter to a naturopath a year ago because I was sick of doctors giving her antibiotics for the flu which she got at least twice a year. One of the major suggestions was that I take her off wheat, so I did for the past year and she hasn't had a flu at all. We also noticed that her behaviour was much better and a rash that she has had for most of her life, mostly around the bottom area, had disappeared.

During this wheat-free year she did occasionally have some wheat and sometimes she would misbehave and sometimes she wouldn't and we couldn't work it out. I am positive the calcium propionate (282) is the cause. Over the past 2 months she has been eating wheat again, full on, but the bread that we eat is preservative free, and she has been a perfectly behaved child. I am not game to test her on a loaf of bread which has this preservative in it, but no doubt in the future she will have some at some time and we will be monitoring her behaviour. Thank you!!! - by email.[Comment: calcium propionate has very recently been linked with immunosuppression, which might explain the frequent flu.]

I was very interested in the Today Tonight segment. I have some real difficulties when I eat some breads yet I can eat other breads without them upsetting my stomach. - by email

I just wanted to say thanks for doing your study on 282. I am the mother of a four year old girl who has seen many specialists and had heaps of tests in the last two years with no real answers. Since she was 12 months old she had persistent diarrhoea, stomach cramps, what we called "bottom burns" (very severe reddening and blistering of her bottom from front to back which meant she couldn't wear nappies or sit down) and mood swings (one minute she'd be on top of the world, the next she would be screaming and crying and have no idea why).

After seeing a "paediatrician" (I'm still not sure how he qualified) we put her on an elimination diet (it was our idea, he said to let her go and see if she grew out of it). We found her symptoms stopped when we removed all gluten containing products from her diet. A coeliac test came back negative so we reintroduced it to her diet and the symptoms started again. We eliminated wheat products and the symptoms stopped again. We did allergy tests and when they came back negative we were confused. I was sure that wheat was the problem, but apparently not. The gastro registrar that she sees was confused too. We decided to put her back on the full diet and then retest her for coeliac disease, but again it came back negative. She no longer has the diarrhoea and bottom burns, but the cramps and mood swings are still there.

Now we have a Plan B. I'm going to try eliminating 282 from her diet and see what happens. My daughter has been classified as gifted and does not have ADD, but her cramps and mood swings very much affect her and the people around her. Again, thanks for getting Today Tonight to show that story and I really hope it helps. I'm also going out today to get a copy of Fed Up. Just goes to show you: as a paediatric nurse I thought I had all the answers when it came to kids and I really had no idea at all. At least the paediatrician had less of a clue than I did!! He still tells me that because all the tests were normal there is nothing wrong with her. He said it's my parenting that's the problem, not my daughter's body, yet my two year old son is fine! - by email [Comment: it is possible to have an intolerance to wheat which will not show up on allergy tests - or it could be 282. Some of the children in the bread preservative study reported stomach aches, and see stomach cramps letter above and below]

Q. I am curious as to whether the 282 mould inhibitor you have been looking at in children, is likely to have any effect on adults? Am I more at risk because I have to take daily medication for an illness? - by email, SA.

A. Calcium propionate (282) can affect adults as well as children with a wide range of health, behaviour and learning effects. Both illness and medication can increase intolerance to food chemicals.

Q. I saw the bread preservative segment on Today Tonight. I checked the bread in my freezer and it did have 282. Do you have a list of which bread manufacturers make the bread without 282 or do I need to make my own bread? If you could please advise as I have 4 children under 5 years and desperately need some answers as to why all my children have behaviour problems. - by email

A. See list of safe breads in the Failsafe Shopping List.

I am delighted to read the results of this study, as I have had serious concerns about preservative 282 for several years. I have been interested in the Failsafe diet since I discovered it a year ago through a web search.

My interest is based on two reasons. Firstly, my son developed behaviour problems when he was 2 or 3 years old. Although he was a bright child who did well at school, he would sometimes have uncontrollable rages, often had headaches and felt sick and missed school. At thirteen he became obsessed with drugs, (we lived in a beach suburb which fostered this), refused school, and became sporadically psychotic. Although this was blamed on drugs, I had always known that certain foods might cause his problems. Testing for allergies did not reveal anything conclusive. After eight years of trauma, which caused a deep family rift, during which time there were regular attendances at courts for his uncontrollable behaviour, he became a heavy wine drinker and was accidentally drowned in the sea at the age of 21.

Secondly, I developed a very irritable bowel in my early forties. Trying a rotation diet showed that commercial sliced bread caused severe constipation. Other foods, obtained from the delicatessen, also caused overwhelming sleepiness, headaches and bouts of stomach aches and malaise. It is now so bad that eating any commercial bread or products such as commercial schnitzels, causes an attack which is characterised by bowel cramps, pain, burning sensations in the gut, nausea, headache and muscle spasms in my neck, back and legs. It usually takes three days of fasting, or a rice diet, before the symptoms subside. My medical advisers would never take seriously my claim that bread, cakes and pastries were associated with the problem, although I underwent food challenges under the direction of a respected dietician. Semolina and some home made bread does not cause me any problems. The received view still seems to be that there is a psychiatric component to irritable bowel syndrome, especially as it seems a majority of women are diagnosed with this disorder! Consequently, there is little sympathy for the sufferer, and no treatment other than antispasmodics and anti-flatulence drugs.

I must say that my family and friends still see my disorder as unacceptable, so that I often have to eat things which I know will cause an attack I have been aware of the bicarb antidote for many years, but now find that only a dose of Durolax laxative taken the same day will head off the problem. I want you to know how grateful I feel to you for your persistence in pursuing this research and for publishing the findings so that further research may be undertaken to give your findings scientific credence. - by email, Sydney

Thank you for writing your books, I have just about finished "Different kids" and can relate very well to the book, as I'm sure many parents can. Last year I read "Fed Up" and that spurred me on to look for a bakery in Sydney (close to me) that was selling or prepared to sell preservative free bread with NO LUCK. I did however find a place in Western Australia called All About Bread, and we have been buying our bread premix from there for some time now. If it can help anybody else out there, the website address is:

We passed the bakery in Mundaring (WA) this morning on our way to the supermarket and there was a hand written sign in their window saying that none of their products have 282 in them and … 'U Bake it' do a line of preservative free bread mixes. - by email, WA

I am very interested in your research re calcium propionate. I thought that it may be of interest to you that as a migraine sufferer, I have found that 282 is one of my main triggers for a migraine attack. I have them very infrequently but very severely. By keeping a food diary I have been virtually able to avoid them. Calcium propionate has been off my list for at least five years. Thanks for drawing the attention of the world to the effects of this preservative. - by email

I have always tried to be careful in regard to buying processed foods, eg cakes, biscuits, chips, lollies but never thought that bread was a big issue even though there are many varieties. Recently on a media program (Today tonight) I became aware that nearly all bread brands contain a preservative 282 (calcium propionate) and the effects this may have on kids' behaviours. This again made me sit back and look at what is available in supermarkets that we take for granted as being healthy and safe to use.

Just standing in front of the yoghurts I was overwhelmed with the number of flavours and colours added to these products. Where do you start? I thought yoghurt was healthy, next came the deli and sandwich meats with all their preservatives and colours, but even walking through the fruit and vegetable aisles you start to wonder about genetically modified foods and the pesticides used. Going shopping has become a nightmare, I am turning everything over and finding very little that has no colours, flavours or preservatives in it. I have 3 children and each one has their own problems, but I often wonder how much of this is brought on by what they eat. - Kathleen from Canberra

My eldest son (15) has always been very calm, but even he notices an anger building up following the ingestion of 282. Everyone puts the blame of "out of control children" on to working mothers and their subsequent tiredness but what's in our "healthy" meals? Here is our conversation last night, verbatim:

T: "Mum, can you put down "no 282" in our bread at school camp?"

M: "Do you find 282 affects you that badly?"

T: "HELL YEAH, I find a huge almost uncontrollable anger building up inside me, for no reason, and I feel I just want to punch something or someone. I don't, though, of course."

M: "Is 282 worse than MSG?"

T: "Yes, sort of. MSG gives me a really flat, dead feeling along with the anger, but the effects of MSG are easier to control."

This is from a young man who poo poohed my suggestions a year ago, when I put the whole family on the elimination diet because it was easier for us all to do it than just the younger boys. He is now the mediator when conflicts arise. I, too, am affected badly by 282.- by email

I have always eaten a lot of bread, mainly wholemeal bread, muffins and bagels. I would often eat 6 English muffins a day. I used to get very moody, stressed out and anxious, in fact the people who I work with have asked me numerous times if everything is ok. I used to get very angry quickly and then in a split second I would feel like crying my eyes out. I also had an ongoing rash on my body, a feeling of ants crawling over my skin, was very tired and couldn't get up in the morning.

I really didn't want to be like this any more, so when I saw the previews on the telly about the bread preservative I watched with much interest, and decided to stop eating bread. Within a day I was feeling better, not irritable or anxious, and actually feeling happy, a change to how I normally feel. After three days I felt really different, better than I have for 6 or 7 years. Even my boss has said he's seen a huge change in me. I used to be a school teacher. If the kids in my class were feeling like I was, I can understand why they behaved the way they did. - Tim from Melbourne

I realise you must be inundated with people contacting you about your research but I would like to personally acknowledge and thank you for your perseverance in bringing food sensitivities to the attention of the medical profession.

My three-year-old son, Jack, is a classic example of a reaction to preservative 282, except he also gets telltale extreme eczema, usually on his stomach and folds of legs and arms, which he scratches until it bleeds. It has been the latter symptoms that has made the effects of 282 so easy to identify in the end, after three years of spending thousands of dollars on medical specialists, allergy testing, cortisone cream, antihistamines and every type of traditional and alternative remedy available to mankind.

When my cousin introduced me to your book it was an absolute godsend. I was at the point where on many days I could have easily have put my son up for adoption. He was uncontrollable, irrational, stubborn and virtually beside himself with frustration and irritated skin.

My main frustration now is getting people to accept that this is Jack's problem, as so many people 'boo hoo' it as nonsense that it's related to food, and will often be found giving him these foods regardless of what I say. The other irritant for Jack is antioxidants used in cooking oils.

If you ever need a subject to test these out on, Jack would be ideal due to the tangible nature of his reaction.

Good luck with communicating this to the community at large. - by email, from Sydney

In response to the articles I have seen on your website, I am 99% sure that my 30-year-old husband has a nasty reaction to 635. He had been complaining of a maddening itch at night on occasion, like he was shedding skin, and it was almost impossible for him to sleep. The last time it happened he had eaten Maggi 2-minute noodles earlier in the day. It was serendipity that a few days earlier I had been researching food additives in relation to migraines and found mention of the dreaded 635 and then thought to check the labels on everything he had eaten. We now consciously avoid anything containing 635, and to date he has been itch free. - Rhonda, by email

"Congratulations on an excellent website, I wish I'd found it a few months ago when I was scratching myself until I was bleeding from the worst rash I have ever had. Just in case some people think that food additives only affect children, I'm 56 and another victim of 635.

"I believe that packet soup was what triggered the rash, then things like BBQ chicken from Woolies, pizza and even KFC, although I can't prove that it contains 635 (but I bet it does) … The most amazing thing is that neither my allergist nor my dermatologist had heard of 635. I could have saved the $1000 that I spent at the specialists. My allergy specialist says I can now safely eat those foods again because the rash has gone but I won't be charging into a 635 diet to see if it comes back. Nine months of hell was long enough for me." – by email.

"I ate just a few CC's at a staff function. Within an hour I had a red rash and itch like that from a caterpillar inside my right elbow. By the time I went to bed I was scratching myself all over the armpit and upper body. Having a shower really made it go, across my chest and up my neck on the right. The next morning at an aerobics class I had a red rash over my entire right body from the waist up to my neck, where it formed an unsightly and extremely itchy vivid red high-water mark around my neck.- by email.

"Three days later I still have lumps and itches in my right armpit and up to my face. I seem to have become hyper-sensitised to other allergens that rarely affect me, sneezing, scratching and itching. If I hadn't seen this all happen to my son I wouldn't believe that it was caused by such a small amount of an additive. And I know that it will last a week, based on his experience."

"I have a story regarding flavour enhancer 635 from the eight-year old boy next door.

"Last year he ate a pie bought from a bakery shop near his mother's workplace. Not only did he get the skin reaction he also suffered a life-threatening anaphylactic-type reaction with swelling of mouth, tongue and throat. The doctor (fortunately a doctor's surgery was just around the corner) who treated him said that he was probably a matter of minutes away from death. He remained on antihistamines for weeks and missed a lot of school. For days his lips protruded four inches or so! The family was unable to find out what was in the pie and so the cause of the reaction remained a mystery.

"A little over a month ago this child was given two or three CC's by a friend at school. Within a short time his arms were itching and his chest was covered in red and white wheals. This reaction was not as severe as the pie incident (the dose was no doubt much lower). I think that reaction took a week to subside.

"His mother has commented that this boy has had no problems of this kind until last year, although he does have a history of mild asthma.

"It wasn't until I was looking through your web site that I found the more-than-likely culprit. The family is very grateful. Once again

"THANK YOU! Surely 635 cannot go on being legal - if it was a drug it would be taken off the market or used, if deemed necessary, with extreme caution under hospital conditions, I'm sure!

• Soon after its introduction an NT pediatrician asked us which ingredient in Maggi two minute noodles could cause 'a dramatic skin eruption' in a four year old boy

• nearly 6 year old girl from NT developed an intensely itchy skin rash 24 hours after a class party with party pies, pediatrician at hospital prescribed Phenergan, 3 others in class with milder rashes

• 55 year old woman from SA, developed a dramatic rash that lasted two weeks after eating Gibbs party pies, antihistamines were not very effective

• 13 yo boy from NT developed an intensely itchy skin rash from the soles of his feet to the top of his head after eating a pie at a friend's place, the contents of the pie could not be determined

• 11 yo boy from NT developed an intensely itchy skin rash from 30 hours after eating party pies at a class party, the rash spread from chest to feet, then from chest to top of head, reappearing for 10 days. Missed one week of school. One other in class with milder rash.

• 2 yo girl from Victoria, developed a dramatic all-over itchy skin rash after eating Maggi instant noodles for dinner. Rushed to emergency room at midnight, needed antihistamines for two weeks. The family's regular brand of noodles (all the same ingredients except for 635) do not affect her.

• 50ish woman from NT, developed a mild but persistent skin rash after changing brand of frozen pie eaten once a week. New brand contains 635.

• 40ish man from Qld, developed constant itchy rash over the last two years, eats CC's corn chips (containing 635) every day

• 50ish man from NT developed a dramatic itchy rash within hours of eating "a few" CCs corn chips.

• A pregnant woman in the NT who developed all-over itching was told it was due to pregnancy. Sure enough, after the birth, the itching stopped. When the baby was four months old, the woman watched a grand final on TV with a plate of party pies to hand - the first time she'd eaten them since having the baby, although she had eaten them constantly during the pregnancy. The next day the itching started again.

• 8 yo boy from NT, ate one packet of Lays Country Style Sour cream and Onion chips on Easter Saturday (wanting the Pokemon card inside). The next day he ate another half a packet and developed a "head to toe itchy rash like a map of Australia, huge and bumpy" according to pharmacy assistant. Eyelids started to swell. He presented to a pharmacy with the chip packets and his parents saying, "we think it was these". Contents included 635.

"I woke up at 3.30am on a Sunday covered with a rash, particularly bad on arms and torso. My face was very swollen and lumpy. The rash was terrible, the facial swelling was quite frightening and I felt as though I was gasping for air at times. My doctor said because it was all over my body, it was likely something I had eaten. The only thing different I had was a vegie burger from Hungry Jacks that I ate shortly before going to sleep. I went back later and asked about the ingredients. The only thing that I was not sure that I had eaten before was additive 635 (it was the only additive). I’ve never experienced a reaction like this. In the past, when I have had allergic reactions, the result has been hives, not rash, and always cured quickly by an antihistamine tablet. This time I had to take a course of antihistamines and steroids. I assure you I won’t be consuming this 635 again. It has been a most distressing experience for me and caused me to cancel my holiday. It is almost incomprehensible that this additive is allowed (without any sort of warning) if this sort of reaction can occur." (Brisbane)

"My 16yr old son had a bout of hives last year. Covered his arms, legs and body in large swollen itchy welts. Telfast 180mg stopped the itching and reduced the swelling, but we could still see the red welts. For almost a week he woke each morning with the welts raised and itching again. We couldn't identify anything different in his diet or environment. Two weeks later he had another outbreak, similar in intensity. But this time I realised that both times it happened after he had worked an 8hr shift at a charcoal chicken shop. He has worked at this shop for over a year, and eaten there with no problems. However, it was unusual for him to eat both lunch and dinner at work, and for him to choose chicken and chips, smothered in gravy, for both meals in one day. He read through the ingredients of everything used in the shop, and found that the 'chicken flavouring' added to the stuffing includes E635. This same chicken flavouring is mixed with salt and sprinkled on the chips. The gravy mix used also has E635, and the chicken flavouring is added to the gravy, so there's a double dose there. He has since avoided eating large quantities of E635, ie. he doesn't eat the gravy, he leaves the 'chicken salt' off his own chips, and he's careful to monitor the quantity of 'chicken flavour' added to the stuffing mix. He's had no hives at all since those two episodes. I'm very concerned that the shop owner had no idea that E635 could cause reactions, and that there is no real control over the amount of E635 in any one meal. E635 is in the 'chicken flavour' added to gravy, stuffing and salt. The 'chicken salt' is liberally sprinkled on chicken and chips. How much my son ate that day depends on who made up the gravy and stuffing, and who salted the chips, because there are no exact measurements." (Kiera)

A mother from Melbourne who reacts with a quick, dramatic skin rash (excellent photos are available) to flavour enhancer 635…in Doritos, CCs and a particular flavour of rice crackers. Her 9-year-old daughter also reacts to this additive (after eating only two CCs), with "crabbiness, itchy eyes and black circles under her eyes, like someone has punched her in the face." (Food Intolerance Network letter in response to query from TV producer).

"One of my friends had a frightening experience on Christmas Eve, which we thought may have been caused by 635 in corn chips. She has never had a reaction like it before, but had eaten quite a few corn chips (and not much else) at a family is part of what she wrote: - there was one bottle of mineral water, one bottle of wine, 2 packets of corn chips and a salad consisting of lettuce, tomato and cucumber!! Not only that but halfway thru the nite I started to get these itching lumps on my neck and legs. Felt ordinary for the rest of the nite and next morning I noticed more lumps and my ears were red hot and swollen. Managed to get thru the day okay but I didn't feel much like eating and was tired. Next morning…I woke absolutely burning and covered in lumps (or hives as you have probably figured out). I tried to get up and shower but I fainted…my lips swelled up and (my husband) was in a panic. The doctor came and gave me an anti-histamine and within an hour I was better but my blood pressure remained low and I had to stay in bed til my body battled whatever I ate that I was allergic to. Today I am better…the hives are beginning to go and no new ones are appearing. I can walk but I have to tell you I am scared. I don't know what I ate…I think maybe the corn chips...they were flavoured." (Melbourne)

"I had an itchy rash a few weeks back that kept me up all night. I thought it might have been a reaction to a new soap, but then I remembered the 635 in CCs…I had dug into a larger packet than usual. I hadn’t had any other processed food. I haven’t had CCs or the rash since then." (Sydney)

"I realise that Jake is very sensitive more than most, but he also had a very severe reaction to 635…He broke out in a hive/welt rash and also had swelling in the throat and breathing difficulties. The doctor gave him an injection which helped, but the redness was there for days along with headaches. And I also react…I also get welts the size of plates and severe headaches for days where I can’t move." (Sydney)

Our family is what is commonly referred to as a "blended family". When we were arried in January 1992, Steve inherited a "package deal" which included my two children, auren and Mark, from my first marriage. Nicholas was born in October 1993.

Our six-year journey with Nicholas began early in 1996 when he was almost three. We were living in Wagga Wagga. Steve and I were in our late thirties, and Lauren and Mark were 13 and 10 respectively.

We are a Defence Force family, which means we are required move around a fair bit. This also means that we endure complications and added stresses that most non-transient families can only begin to imagine.

When Nicholas was born he came into this world in the usual way, a normal pregnancy, and no problems during labour or childbirth. He was a completely normal child in every way until around the age of three. He started to become difficult to manage from a behavioural point of view.

I was 30 weeks pregnant at that time, with Elise, and due to complications I was confined to bed for the last 10 weeks of my pregnancy. Steve was not allowed to take leave so we had to fly my mum down from Brisbane to help out for the first five weeks, and then for the last five weeks we had Steve’s parents, also from Brisbane, stay with us to help out until I was back on my feet. We put Nicholas’ bad behaviour down to having to cope with different people, different sets of rules, different ways of doing things etc. and told ourselves that everything would return to normal in time.

Elise was born in August and things did not improve. I mentioned Nicholas’ behaviour to the clinic sister when I took Elise to be weighed and measured, and she felt that perhaps he was feeling neglected because his new baby sister was taking a lot of the attention way from him. We enrolled him into preschool. We felt that perhaps if he were to ecome involved in something special just for him, something to improve his self-esteem, his behaviour would improve.

He settled into preschool really well and thoroughly enjoyed it. He was always very well behaved at preschool but the behaviour at home did not improve. This became the pattern of our lives for the next six years. He became obsessive about little things such as his bath. It was either too hot or too cold. It didn’t really matter what temperature it was, it was just never the way he wanted it no matter what we did.

We survived fairly well for the rest of that year and remained in Wagga Wagga until the end of 1997. Nicholas’ behaviour did not get any worse, nor did it improve. We told ourselves that since we seemed to skip the terrible two’s that perhaps this was just a bad case of the terrible three’s instead. I hasten to add that I did not experience any of these behaviours with Lauren or Mark, nor did I go through much in the way of the terrible two’s with them. Lauren and Mark were always very well behaved both in the home, and out and about, so this was a whole new experience for me.

At the end of 1997 Steve was posted to Darwin, and we spent an enjoyable Christmas with our families in Brisbane en route. We arrived in Darwin in mid January of 1998 and this is where our journey really started to get rough.

Nicholas started preschool five mornings a week and he became very tired with no energy. We put the tiredness and low energy levels down to the humidity and extreme heat of the tropics and the fact that up until our move to Darwin, he had lived all of his life in a cold climate. Nicholas was born in Canberra, and had spent the past two years living in Wagga Wagga before moving to Darwin. He started to lose weight, which we put down to the fact that Steve is very tall and that Nicholas had inherited the "tall" gene and was starting to grow. We decided he was going to be a tall, skinny child and didn’t think too much more about it. The behaviour was getting steadily worse but still only at home and never at preschool.

In March of 1998, I decided it was time to take Nicholas to the doctor because he was now 3½, still a bed wetter at night, and still no improvement in his behaviour. We were referred to one of Darwin’s best paediatricians. Nicholas had an ultra sound done on his bladder to rule out any nasties. This indicated that he had a large bladder capacity, which meant that he should be able to store the urine and make it through the night without any problems. Our paediatrician only ever used medication as a last resort after exploring all other options, and we were in total agreement of this. It was decided to put Nicholas back into night nappies, which we did, and given a bit more time and maturity, hopefully things would fall into place.

Initially, the bed-wetting was the bigger concern and the behaviour was secondary. Gradually, the priorities were reversed. Nicholas’ energy levels deteriorated and his weight loss continued. The dreadful behaviours worsened. As time went on all these things became serious issues. The volume of urine each night was no longer contained in the night nappy, and the behaviour went from bad to worse, to down right disgusting, with many violent outbursts. He became more obsessive. He had to have the yellow bowls and plates in our multi coloured dinner set, and he had to have his shoelaces the exact same length. If he didn’t get his own way, a huge tantrum would ensue.

Nicholas’ weight loss continued and he was now looking so thin and unhealthy that he looked like a prisoner of war. His energy levels were so low that he would be playing on the floor of our living room and tell me he was tired. I would tell him to go and have a rest but he didn’t want to. By the time I turned around to do something, and looked back at him, he would be asleep on the floor mid play.

Our paediatrician decided to try a medication called Periactin, which was supposed to kick start Nicholas’ appetite. Unfortunately it didn’t seem to work. Our paediatrician then decided the behaviour might improve with a change in diet. He started to tell us about the chemicals in food, both natural, and added. He had a basic knowledge of this but decided to refer us to a dietician.

The dietician that we saw also only had a basic knowledge of food chemicals. She did her best but really couldn’t answer any of my questions and was of no real help except for one very important piece of information. She wrote down the name of a local lady by the name of Sue Dengate, whom she said had a support group for people like us, and knew a lot about diet. She did not have a contact phone number or any other details. She also recommended that I buy the book Friendly Food that was recommended by RPAH. The book was about avoiding allergies, additives and problem food chemicals.

I went straight from the dietician’s rooms to our local bookshop where I purchased the Friendly Food Cook Book. The woman who ran the bookshop asked me if I’d read the book Fed Up by Sue Dengate. I hadn’t, and the store was out of stock. This prompted me to try to find Sue’s phone number in the local phone book. Prior to contacting Sue, I phoned my mum in Brisbane to ask her to try to get hold of the book and send it to me.

I eventually got my copy of Fed Up and was shocked at what I read by both the natural and the added food chemicals. Nicholas was much worse in Darwin than he was in Wagga Wagga and our paediatrician said that it could be as simple as changing our bread. He said that in Darwin, because of the humidity, the breads had a lot more preservative in them than the breads down south. In the tropics the bread goes mouldy much quicker. I began reading food labels for the first time in my life and discovered that our bread which we all ate at least once a day, had preservative in it. This was only the beginning. After making contact with Sue I began to realise how fortunate I was to have her, especially living in our local area, because she has saved our lives on numerous occasions over the years.

The biggest hurdle for me in coming to terms with the failsafe diet was that I had to completely change my way of thinking when it came to foods. I had been raised on a diet of fresh fruit and vegetables and this was how we were raising our children. The obvious additives and preservatives were things that I could comprehend very easily as being "nasty" and I was more than happy to eliminate things like red cordial and "junk" food, although we really didn’t eat a great deal of junk food.

The most difficult thing for me then, and even now, was coming to terms with the natural food chemicals that seemed to be in just about every fresh fruit and vegetable imaginable. In our early days of the failsafe diet, I went through a very real period of mourning. I mourned the fact that my son could no longer eat many of the fresh fruits and vegetables that most people ate and took for granted in their daily lives. I also mourned the fact that I had to take away many of the things which he truly loved, such as bananas, cheese, burritos, and much more. I was concerned about his nutrition because this new way of eating did not leave him with very much, and his weight from the age of three had always been a concern to us.

I quickly discovered the importance of reading the labels on everything I bought at the supermarket. It is something that you have to be totally diligent about because what is considered "safe" one week could be considered "unsafe" the very next week. A simple thing like a change in the ingredients can make a huge difference between a "safe" product and an "unsafe" product. One mistake could be the difference between whether the diet was successful or not.

In the beginning we made many mistakes but with trial and error, and the guidance of Sue, we managed to make our way through this dietary minefield and come to some semblance of what could be called our new normality. A diet with very limited fresh fruit and vegetables in comparison with our past life of a diet, which consisted of no limits at all, when it came to "healthy" foods and fresh fruits and vegetables.

We implemented the failsafe diet (the elimination diet recommended by RPAH), and with Sue’s guidance we managed to avoid a lot of the common mistakes and pitfalls. It is not an easy diet to do as a beginner and so to have her help in this was invaluable. Initially, the whole family went failsafe in order to support Nicholas. We remained failsafe for quite a long time but eventually we all went back to our normal diet, except of course for Nicholas.

We still don’t eat chocolate or any of the stuff he really loves in front of him. We try to "escape" if we feel the urge to be a bit naughty as we are very aware of his feelings. Nicholas did show considerable improvement once we got past the dreadful withdrawal symptoms, however, the improvement although noticeable was not enough and so we continued in our search to get our lovely little boy back. The calm, gentle beautiful little boy that we once had and were not prepared to give up without a fight.

We noticed that Nicholas used to get particularly irritable just before meal times, so when Steve mentioned this to our paediatrician he told us to try an over the counter complex sugar called Poly-Joule. We left the surgery shaking our heads in exasperation and thinking "yeah right" that will work. We were extremely surprised to discover that it did in fact work and he was the best he’d been in a long time.

Nicholas had already been tested for diabetes because his paternal grandfather is an insulin dependant diabetic, and so are two of his cousins. The success of Poly-Joule prompted our paediatrician to put Nicholas in hospital for two days and a night for some specialised fasting tests. Bloods and urine were taken at specific intervals over a 24hr period of total fasting except for water. At about ¾ of the way through the testing Nicholas started to have a "hypo" which resulted in an immediate halt to the tests.

The official results of these tests were that Nicholas had a very rare form of Hypoglycaemia called Ketotic Hypoglycaemia. We were then advised by our paediatrician to give Nicholas regular doses of Poly-Joule so that his sugar levels remained stable instead of up and down like a roller coaster. We then decided that the Ketotic Hypoglycaemia was the main cause of these dramatic mood swings and behaviours.

We continued with the failsafe diet as well as the Poly-Joule and again we saw some
improvement, but once again it was not enough. The disgusting behaviours continued and I again contacted Sue in desperation. She suggested we implement 1,2,3 magic and very generously loaned us the video. We were very impressed with this simple technique so we decided to try it. The implementation of this behavioural technique saved our lives, and to this day, continues to play an important role in our lives. Once again, over time, we saw some improvement, and once again it still wasn’t enough.

We again went back to our paediatrician who decided to put Nicholas on a one- week trial of Ritalin. By this stage we were desperate people and willing to try just about anything. At the end of the week we again contacted our Paediatrician and told him that it really didn’t seem to have any effect on the behaviours. We now know that medication, like diet, requires fine-tuning, and adjustment to be effective. It was unfortunate that the paediatrician did not mention this to us at the time. We were, at this stage of our journey, very much in a period of trial and error.

He referred us to a visiting psychologist who said he’d like to hypnotise Nicholas and put Steve and I on medication. I decided this was somewhat extreme to say the least and informed our paediatrician that I would not be going back.

We resigned ourselves to the fact that this was pretty much as good as we could get, although things were still not good, and that is putting it mildly. The bed-wetting continued and so we were referred to a visiting neurologist who asked us to measure the capacity of Nicholas’ urine output. We did this and were told that he definitely should have the capacity to be able to store his urine overnight. He also recommended the bell, pad and alarm system to try and rectify the problem.

Our paediatrician decided that Nicholas was too young for the bell, pad and alarm system, so he prescribed Minirin, a nasal spray medication that is designed to stop bedwetting. We were told to give him half the minimal dose for his age and weight and after only three doses Nicholas was rushed from school to hospital in an ambulance because he was having a seizure. Blood tests taken at the time showed low sodium but nothing more. Seizures were one of the known side effects of this drug but it was extremely rare. Nicholas was one of the rare ones.

During these years Nicholas’ behaviour remained disgusting and it continued to be that way, but only at home. He never showed any of the violence at school, and never at the paediatrician, or our local GP. I would tell the doctors and teachers about his behaviour at home, and they would look at me as if I was some kind of neurotic woman. I began to feel as though I was from another planet. I also began to doubt my skills as a parent.

Relationships in our house were strained to say the least. There were times when Steve felt like leaving, and there were times when I felt the same way. Fortunately, we never both felt this way at the same time. I had many desperate teary phone calls to Sue during this time and several similar desperate calls to our paediatrician. I enquired about respite care because I felt I desperately needed a break. As a Defence Force family we were completely on our own with no extended family for support.

Relationships between Nicholas and our two teenagers were also strained. My eldest daughter wanted to leave home because things were so bad and so desperate, and she’d had about as much as she could handle. My eldest son just couldn’t stand Nicholas and every time he was near him he would pinch, prod, poke, or annoy him in some way. I would never catch him doing it but I would always catch Nicholas retaliating and that would result in immediate time out for Nicholas.

In those days Nicholas had such dreadful behaviour that I made the mistake of blaming him whether it was his fault or not. It took me a number of years to catch on to what big brother was doing. I remember one occasion where things got so desperate that I went back to our GP and asked him what we should do. We had been going to our aediatrician for over two years and still did not have the result we desperately needed.

Our GP gave me this piece of very important advice. He said, "love this child, he is not doing this on purpose, no child ever wants to be like this". I have remembered this piece of advice and over the years it has helped to keep me going. I kept telling myself when things got rough that it was not deliberate, but that these behaviours were uncontrollable.

Time out and behaviour management strategies were effective up to a point, but Nicholas would never go to his room voluntarily. He always had to be carried there, kicking and screaming. I lost count of how many times he broke my watchband in the ensuing struggle to get him up two flights of stairs to his room. The older he got, the bigger and stronger he became, which made him much more difficult for me to deal with. He was super strong when he was in full tantrum mode and I started to have real concerns about how I would manage him, as he got older.

The years of difficulty and stress really took a toll on us as a family. My enquiries into respite care led to a dead end because there was none available to us in Darwin at that time. I had reached desperation and was seriously considering fostering Nicholas out because I was reaching the point where I was afraid that I might lose control one day and hurt him. At that stage the only thing that stopped me was my love for my son, and the determination I had to keep going, and to keep trying, and my unwillingness to give up. I felt that if his own mother couldn’t deal with him, then who could?

I used to suffer badly from hormonal, monthly mood swings with every menstrual cycle so I made the decision to have a hysterectomy. I felt that if I was in one of my "moods" at the same time Nicholas was having one of his violent tantrums, that this was a combination, which was destined to end in disaster.

My GP was supportive of my decision because I’d had four children, two girls and two boys, I had just turned forty, and I definitely did not want any more children. My hysterectomy was never considered to be a drastic measure on my part; it was simply necessary for me to survive. It was, for me, the best thing I could have done, and I have no regrets about that what so ever.

Nicholas in the preschool year was never disruptive or badly behaved in that environment. He did not join in very much with the other children, particularly in singing or dancing, or anything where he had to really let himself go and have fun. He was always very stiff and controlled. I remember seeing his teacher once grab both his hands and physically move his arms to do the actions for a song they were singing up on stage. He hated it. He showed very little in the way of emotions, he very rarely smiled, and was very rarely spontaneous with anything, both in conversation, and in the form of gestures. He had a marked delay in his speech and I was forever explaining to people that if he did not answer a question straight away, he was not being rude; it simply took a while for him to process his thoughts.

In his first year at school he was fortunate to have a teacher who was very supportive and who also had a son with ADD. She asked me if Nicholas had ADD and I said no, our paediatrician had never even mentioned this as a possibility. Nicholas has always been an excellent reader, and very good at maths. His writing however, was very poor. It was very difficult to read and I was worried at one stage that he might have been dyslexic. He wrote a lot of his letters and numerals backwards or like the mirror image. He never completed any of his written work. In the first year of school this was not too much of a concern, and on his report it was written that he is a good, well-behaved little boy who daydreams. His teacher suspected processing problems of some sort and so it was recommended that we take him for hearing and eye tests, both of which came back
saying that everything was fine.

In his second year of school his teacher had trouble getting him to stay on task. She tried keeping him in at lunchtime; but he didn’t seem to care, and still did not complete his work. I mentioned his inability to stay on task and complete his work to our paediatrician. He was not overly concerned because Nicholas was so good at reading and maths. Nicholas became very clever at covering up his weaknesses.

At the end of his second year of school, our third year in Darwin, we were offered a posting to Sydney. We thought long and hard about accepting this posting because our eldest daughter had just completed year eleven, which would make this move a particularly difficult one for her. In the end we decided to accept the posting because we felt that in Sydney we would have access to a greater number of experienced professionals. We pretty much thought that if we had no luck in Sydney with Nicholas then this was perhaps as good as it was ever going to be.

We were referred to a very experienced paediatrician in Sydney who listened to what we had to say and gave us two questionnaires to be filled out and returned. One was a parent questionnaire, and the other was a teacher questionnaire. The result of these questionnaires was that Nicholas had, in her opinion, ADHD. Our paediatrician felt that Nicholas was not bad enough to require medication even although the disgusting behaviours continued.

Once again, I had to explain to yet another paediatrician that these behaviours were only ever exclusive to us at home. I began to get the feeling that we were being perceived as having some sort of bad home life that was causing these behaviours. My gut feeling was and still is, that two things caused these behaviours. One was diet related, and the other was frustration from learning difficulties at school. I learned very early that if I allowed Nicholas to digress from the failsafe diet that we were in for a very rough ride, always with violent behaviour. School was something that I was unsure about until we started to have huge battles over homework.

A month after arriving in Sydney, Nicholas’ behaviour became worse. We put this down to the fact that we had just moved, he was missing his friends from Darwin, and all the stresses and strains associated with changing schools etc. We felt sure that with the passage of time things would improve. They did not. He started punching, head butting, kicking and screaming. When he was sent to time out he kicked a hole in the wall. This became a common occurrence.

After one such session I phoned our paediatrician in tears and said that I couldn’t do this for much longer. I tried increasing the Poly-Joule and this seemed to have no effect. Our paediatrician decided to admit Nicholas to hospital and re do the testing for hypoglycaemia. The result of this was that Nicholas had now outgrown the hypoglycaemia, which we were originally told he would outgrow at around the age of nine. The decision was made to stop giving him the Poly-Joule.

We were then referred to the enuresis clinic at Westmead Children’s Hospital to try and address the bedwetting. Nicholas was 7½ by this stage. The specialist that we saw recommended the bell, pad and alarm system. We had great success with this method and within three nights Nicholas was dry for the first time in his life. He has never wet the bed since.

Prior to leaving Darwin, Nicholas’ eyes became very sensitive to all kinds of light from different sources including, sunlight, and computer screens. He had a CT scan to rule out any nasties. In Sydney he was referred to the eye clinic at Westmead Children’s Hospital where we were prescribed two different types of eye drops for viral conjunctivitis. The eye specialist was very good and when I explained Nicholas’ sensitivity to foods he prescribed preservative free eye drops. The viral conjunctivitis was cured, however the light sensitivity remains.

Our paediatrician told me that she believed only 4% of children were affected by food intolerances and so I began to educate her on this matter. At every visit I would tell her "we had pizza the other night, I let Nicholas off his diet and he went totally off the planet". Another time we had Chinese take away as a treat for Elise’s birthday, (something we hadn’t had for years), I let Nicholas off his diet and within minutes of eating it he had thrown a major tantrum and broke one of our kitchen chairs. After two weeks of swimming at school, on a Saturday at home, he was told "no" to something and he broke a solid wooden door on our entertainment unit.

Our paediatrician always listened to me but I always felt that I was still being perceived as some kind of neurotic woman who was speaking a strange language that no one else could understand. I phoned her one day in tears after one of these episodes and said that I was afraid that I might hurt him if things didn’t improve. She told me she could arrange for respite care if I needed it. After that phone call, at every visit, Nicholas was asked to take off all his clothes with the exception of his underpants. He was checked thoroughly from top to toe. I know that these children are considered "at risk of abuse" and I realise how close I have come to hurting this child on a number of occasions, but I have to say that this was one of the most humiliating experiences I’ve ever had to deal with.

At this point, I started asking questions like "who protects the parents?" It seemed that it was okay for Nicholas to kick, punch and head butt me, but it was not okay if I lost my temper one day and hurt him.

I remember sending him to time out on one occasion and I was bending down holding one leg to remove his shoes. He swung around with the other leg and kicked my nose. On another occasion he threatened to break my glasses. Another time, he told me he was going to break my arm and he kicked me so hard in the forearm that I actually thought he did. I went to our local GP who said that it wasn’t broken but that the deep muscle tissue was badly bruised.

There are other instances where he has kicked and bruised my legs, and these have been recorded on my medical documents. These dramatic violent outbursts were always followed by periods of remorse where Nicholas would come to me crying and feeling bad about whatever it was that he had done. I always took full advantage of these times and we would sit down on the couch and have a cuddle and talk about it. These times actually reinforced to him, that we did still love him very much, and they reinforced to us that he truly didn’t want to be the way he was. Nicholas behaviour continued its decline. Who would have thought that this was possible? He spent a lot of time in his room in time out. He would throw a tantrum for no apparent reason. He would kick, punch, and head butt. All it would take was for us to look at him in the wrong way, whatever the wrong way was, or to tell him "no". It got to the point where every time he was sent to time out, he had to be physically restrained otherwise there would be another hole kicked in the wall.

Often it would take 20 to 30 minutes for him to calm down. At times I would have to lie on top of him on the floor to restrain his arms and legs. He was always very strong during these episodes and he could easily lift me off the floor with his legs. If I let go to steady myself then he would be free to kick, punch and head butt.

Our paediatrician referred us to the Department of Nutrition and Dietetics at Westmead Children’s Hospital. We were concerned whether Nicholas’ very limited diet was adequate on a long-term basis given that he had now been failsafe for four years.

We had to measure, weigh and record everything he ate and drank over a three-day period. This included his medication and brand names of the food that he was fed. This information was entered into a computer and analysed, the end result being that with a few minor modifications his diet was not ideal, but adequate.

Moving to Sydney brought with it some complications that we weren’t expecting. Brumby’s bread, which we took for granted in Darwin was no longer easily accessible. Our failsafe sausages were hard to come by. I bought a bread maker but Nicholas did not like the bread we made. I found commercially available failsafe bread but Nicholas did not like that either.

I decided to let him try Helga’s bread because he liked it, and remembering that our paediatrician believed only 4% of children were food intolerant, I thought I’d give it a go. Nicholas’ behaviour got worse over a period of time so we made the decision to get the bread that we knew was safe and that we knew he liked. We decided to make the effort and do the one hour drive to the closest Brumby’s bread shop.

He started to eat his school lunch again. Prior to this he was throwing it in the bin. We knew this because we happened to be at school one day and actually caught him doing it. Sausages were another problem. I had asked my local butcher to make up a special batch to a recipe out of Fed Up. He assured me there were no preservatives or additives in them. I was not totally convinced about this, so we again made the decision to travel to a butcher that we know we can trust. Unfortunately this was in the opposite direction to Brumby’s.

Our paediatrician decided to refer us to a psychologist for a behavioural assessment with a view to using medication. The referral stated that in her opinion the mother was maternally depressed. I was pretty annoyed about that to begin with but after some thought I decided she was right. Who wouldn’t be? Given the number of years and the many stresses we endured during this journey. At this stage she still felt that Nicholas wasn’t bad enough to need medication.

We had the assessment and the psychologist initially thought that he had Aspergers Syndrome. She did a questionnaire with us and decided that he did not meet the criteria. However she did recommend medication, even if only as a temporary basis, to help restore very fragile family relationships. An anti depressant was also recommended and because of Nicholas’ delayed speech she asked that we see a speech pathologist. Our paediatrician decided against an anti depressant for Nicholas but agreed to try him on Dexamphetamine. Nicholas started taking Dexamphetamine in July 2001.

Nicholas did not do well on Dexamphetamine. He became very teary and emotional, more so than usual. He lost weight more rapidly, which was not good as he was under weight to begin with. He also had a lot of trouble getting to sleep at night; often he would get out of bed and play with toys late at night, in the dark, before falling asleep out of sheer exhaustion.

We persevered with Dexamphetamine for a while because we wanted to give it a fair go and also because we noticed that Nicholas’ written work had improved dramatically with his homework. Prior to medication homework was like a battleground. He would sit for hours and write three words, some days he would write nothing at all. He would now complete all of his homework and sometimes even illustrate his stories.

In the end, the weight loss, lack of sleep and the emotional ups and downs just weren’t worth it so we asked our paediatrician if we could try him on Ritalin. I had heard of some excellent results with Ritalin and I wanted to give it a try. Our paediatrician was somewhat reluctant to make the change because we were finally booked in, at my request, to the Immunology Department at Westmead Children’s Hospital, to do the double blind capsule challenges. She did not want to make any unnecessary changes at this stage.

I had seen such an improvement in Nicholas’ written work with the Dexamphetamine, and also glimpses of a lovely little boy, in between the nasty tantrums, that I decided to stand my ground on this issue. We started the Ritalin in November 2001 and after a couple of "settling in" weeks Nicholas started to improve out of sight. A month later at our next visit to our paediatrician, Nicholas’ weight had remained the same. This was a good sign because it meant he had not lost any more weight. He had started to sleep much better at night and the emotional ups and downs that he experienced with the Dexamphetamine seemed much less once he started taking the Ritalin.

Our paediatrician recommended that Nicholas should only take Ritalin during the school week, never on weekends or during school holidays. This has proven to be very effective.

At the same time we were referred to a speech pathologist that also thought that Nicholas had Aspergers Syndrome. In September 2001 she did a language assessment that showed that Nicholas has high-level receptive and expressive language problems in the areas of semantics, pragmatics, auditory processing and verbal reasoning. He relies on visual information when listening to instructions, and finds listening alone, without pictures, more challenging. He has poor semantic organisation, including weak word finding skills. Verbal reasoning and critical thinking in the form of problem solving is also a major area of weakness.

The speech pathologist still felt that Aspergers Syndrome was a consideration and recommended that we see another psychologist, one who is very well known, and who specialises in the Autism Spectrum Disorders.

We saw this psychologist who also thought that Aspergers played a part in all of this. He did the Aspergers questionnaire with us and decided that Nicholas did not meet the Aspergers criteria. However, he phoned me a couple of hours later and said he’d had a rethink after reviewing the results. He now felt that Nicholas did have features of Aspergers Disorder. Nicholas has now been diagnosed as having a variety of developmental disorders. These include ADHD, high-level language impairment, and features of Aspergers’ Disorder.

We implemented some anger management strategies, and learned other ways of saying "no". We re-trained ourselves to say, "not right now, maybe later" instead of using "no" as an answer; this strategy is simple but very effective. Other strategies included the use of social stories. These are stories that Nicholas wrote with the help of the psychologist about what he can do when he feels angry. We also used many types of small rewards to reinforce good behaviour.

Our psychologist report stated that Nicholas required Integration Support in the classroom to assist attention, on task behaviour, to adapt tasks, and to specifically implement social, communication, and empathy programs. This report assisted the school in obtaining Government funding to provide some extra assistance for Nicholas in the classroom.

We have been very fortunate to have a school that is supportive of special needs children. They have placed Nicholas in a class with a girl in a wheelchair who has an aide on a full time basis. When the aide is not required to assist the girl, she is free to give Nicholas whatever assistance he needs. He has an integration teacher who assists him for one hour each week, one on one, and he also has access to other integration teachers on an as needs basis. He has visits at least once a term at school, from both his psychologist and speech pathologist, who will jointly monitor his progress over the coming years.

The double blind dietary capsule challenges were only ever done on weekends and during the Christmas school holidays. Remembering that Nicholas only takes Ritalin on school days to enable him to stay on task and complete his schoolwork. This enabled us to get a very clear result and record only the food related behaviours. It also enabled us to record the behaviours accurately without any other outside influences.

We began the double blind dietary capsule challenges at the beginning of December and they were completed at the end of February. The results were as I’d suspected. No great surprises. He is highly sensitive to MSG, calcium propionate, sodium benzoate, sodium metabisulphite, salicylates, antioxidants and food colourings tartrazine, sunset yellow, erythrosine and azorubine. It was a huge relief for us to finally have an official, clinical diagnosis from the immunologist. These results confirmed my suspicions in relation to food related behaviours.

Most challenges that he reacted to were with violent reactions such as kicking, punching, head butting, throwing things or ripping posters off the wall in his room. There were a couple of challenges where he reacted with babbling and increased hyperactivity.

It took me five years to find the courage to do these challenges and when we were almost finished them, Nicholas came to me, and said that he didn’t want to do any more because he didn’t want to be naughty. He realises that some foods exacerbate his oppositional behaviour. He also realises that some foods make him unwell.

We occasionally have burritos for dinner, which is one of his favourite foods. On these rare occasions I let him off the diet. He always has at least three or four, plain, with no filling, exceptfor maybe a small amount of grated cheese. At bedtime when we are tucking him in and saying "goodnight" he often tells us that he "doesn’t feel well". In addition to this, and because of the additives and preservatives in the burritos, he becomes noticeably hyperactive.

Since Christmas 2001, Nicholas has undergone a complete transformation. Time outs are no longer a big part of his life. The delay in his speech is all but gone. He smiles, laughs and does things spontaneously, something he seldom did before. He comes home from school, takes his afternoon medication and sits straight down to do his homework with no prompting from me and no arguing from him. Homework is no longer the battleground that it once was. He completes all his written homework and pretty much all of his written work in class.

He is developing a wonderful sense of humour and is an absolute delight to be with. So far this year, he has earned three merit certificates at school. He was voted as a school representative council member for his class. He received a special smiley pencil award for sitting up straight and behaving beautifully during assembly. He was also Super Kid for the month of April, which earned him a Super Kid badge that entitles him to politely go to the front of the queue at the canteen. Unfortunately this was not very useful for him because he couldn’t really buy much that is failsafe, however, it was great for his self-esteem and he was very proud of this achievement. He also got to have morning tea with the Principal. He was let off his diet for that special occasion and when he got home, I asked him what he ate. He said, "I can’t remember, but it was fun".

I cannot put my finger on any one thing that we have done differently, for these wonderful changes that have taken place. After five years of the failsafe diet, almost five years of behaviour management in the form of 1,2,3 Magic, the final piece to our puzzle has been medication, in the form of Ritalin. It is my firm belief that no parent ever wants to medicate their child, especially one so young. We had spent the past five years exploring and implementing diet and behaviour management. During these years we saw some improvement but not enough for us to survive. Medication was our last option. In our case, we needed the multi-modal approach, and no one thing would work without the other. The combination of diet, behaviour management and medication was, and still is, the key to our success. Diet for us was not enough, however, I believe that without implementing the failsafe diet all those years ago, Nicholas would have needed a much higher dose of medication. I also believe that his developmental disorders, ADHD, high-level language impairment and features of Asperges Disorder would have been much greater. His behaviour was often so violent that I was convinced he would one day be in a juvenile prison, or worse.

In conclusion, all of Nicholas’ violent behaviours and reactions were in my opinion, caused by two things, food intolerances and the frustrations associated with learning difficulties. The food intolerances are controlled with diet. Without diet, the violent behaviours return. Medication helps Nicholas to stay on task, which enables him to complete his schoolwork and homework. This helps to overcome the frustration associated with learning difficulties.

Regardless of whether or not Nicholas is taking medication, we know that if we allow him to break his diet, and we sometimes do on special occasions, we can expect a return of the violent behaviours. On these occasions behaviour management is still required.

We still have a long way to go in terms of monitoring Nicholas’ education and assisting him with overcoming these learning difficulties. We are fully aware that there will be some rough patches as our son navigates his own path in life, but for now, the most important thing for us as a family, is to finally have our loving, gentle, caring, beautiful little boy back with us again. He is a pleasure to be with, and a son to be truly proud of. Relationships during these past four months have started to heal and we have finally found the light at the end of a very long tunnel, something that for many years we thought we were never going to find.

I would like to thank the following people for their support and the individual roles they played in helping us to achieve our happy ending.

Paediatrician: Dr Ross Diplock – for his advice in trying diet before medication.

Author: Sue Dengate – for her continued support with helping us to navigate the dietary
minefields, and for keeping us on track with her unfailing belief of foods and the way in which they affect behaviour.

Paediatrician: Dr Patricia McVeagh – for assisting us in the final stages of our journey, and the implementation of controlled medication.

Consultant Psychologist: Lizette Campbell – for her recommendations for speech therapy and medication.

Speech Pathologist: Philippa Greathead – for her continued support, her referral to psychologist Anthony Warren, and for her language assessment, which really brought home to us the many learning difficulties that Nicholas was experiencing.

Psychologist: Anthony Warren - for his continued support and for his report that was integral to obtaining Government funding for extra assistance in the classroom.

The Failsafe Discussion Group: This group of people primarily discuss the failsafe diet, but also discuss many other challenges faced by special needs families. Their wealth of information and support knows no bounds. I would not have survived these "challenging" years without these people. I have learned so much from this group and we are all still learning. Together, we can all make a difference, and we can all find that light at the end of the tunnel.

- Susan, June 2002

Three years ago, my son had such terrible candida you could smell the yeast on his breath and his skin. We learned to avoid yeast, almost as a reflex. It's a habit that's hard to unlearn. But unlearn it we must, because yeast free breads are dangerous if you react to amines.

My son reacts to amines. I knew anything fermented was bad, and that foods cooked for long times are bad. But I didn't know that the "alternative breads" fit this category.

The label says: wheat, water, salt. It doesn't say how long the bread is baked (slow-rising), it doesn't say there are amines, and the bread doesn't smell or taste different. It's just bread, and yet it's not! Alternative breads, made without yeast, are invariably long-rising, via a fermentation process. They are high in amines and should be avoided. I always thought wheat was bad, precisely because of these alternative breads.

My son is happy to be back on wheat and dairy again, as you might imagine. There's even a commercial pizza he can have, Hungry Howies (may not be available in Australia), original crust, cheese, ground beef. The cheese is pure 100% mozzarella, and he can have that once in a while. And now, probably because he is failsafe, yeast doesn't bother my son at all. No sign of candida. So we are back on yeast. - Karl from the discussion group

My sons are severely food and chemical intolerant. Their diets are severely restricted, just to enable them to cope with day to day life. Their adherence to the restricted diet literally enables them to survive. We avoid additives in food at all costs, and we avoid chemicals wherever possible as they affect the boys equally to the wrong food choices. They are aged 6 and 3.

My eldest son has commenced school and is in Year 1. Considering his dietary challenges, he copes with food and school incredibly well – but there have been and will always be the occasional slip ups. Pressure from peers is already impacting and will continue to do so as he journeys towards adulthood.

Late in the Kindergarten year, he was with some team mates after a Teeball game. He was eating his customary rice and drinking plain water whilst the other kids were tucking into soft drink and a box of pizza snack biscuits – the kind people might eat with dip. He was fairly unfazed as he is used to it, but the problem kicked in when he had finished – still hungry - and the others still had plenty to eat. He resisted their offering and the temptation to indulge until they reached the bottom of the box. It was then that he succumbed to the hunger and I daresay, the curiosity, (he has never eaten them before!) and he ate some crumbs from the box – less than would cover a 10 cent piece. He later remarked that he didn’t even like how they tasted!

Within 3 hours, the reaction started. He was due to go to a birthday party – I always stay with him for moral support because he can’t indulge in what others enjoy at parties – and as we arrived, the rot began to set in! He was no longer able to communicate with me in the way he usually would. His responses to questions were more a grunt than a reply. I had to physically manipulate his face to make eye contact with him and get his attention – and his eyes were wild!

He generally perspires freely even though he is only 6, but now he was perspiring profusely. His shirt, hat and shorts looked like the ones on Pat Rafter after a 5 set Final – and this is truly without exaggeration. He was soaked. He was moving in an agitated manner- his actions were jerky rather than smooth, and he was lashing out at things and people. He became surly and very defiant. He was irrational when compared to his usual behaviours. He hurt 4 friends at the party in 4 separate incidents whilst playing tips on and around some playground equipment. I had been observing and intervening – there was nothing malicious, but he had lost his finesse and the ability to be able to judge the other kids level of involvement. He had become face blind – oblivious to their anxiety and distress, and unable to see that they wished to cease the game. His need to continue the game was insatiable.

For the first time ever, these kids were actually scared of him and what he was doing, and they thought he had hurt them on purpose. He was at this point doing some real damage to the fragile relationships he had worked so hard to develop. The area the party was conducted in was also open to the public, and my son managed to get into 3 fights with slightly older boys he had never met before. In each instance, both parties were equally at fault, however the new children seemed to take an instant dislike to his overall behaviour and this was the impetus for the conflict. He was now unable to make good judgements about his actions and he took offence at the situation. Instead of altering his behaviours to become more socially acceptable, he lashed out and hit the other child – and so the fights began. My time was spent alternating between apologising to everyone profusely, heading his ill-considered choices off at the pass and repairing his crumbling relationships whilst helping out his inadvertent victims – his mates were suffering his horrendous reaction to flavour enhancers, flavours and preservatives vicariously.

Going home was no better – we were only two hours into the reaction and things weren’t going to get better in a hurry. I tried to keep him doing things outside to wear off as much energy as I could. Something happened and he was hurt. I think he took a bump on a tooth that was threatening to come out, but was nowhere near ready just yet. The bump made the tooth a little looser and it bled. I tried to soothe him and clean the blood without his knowledge, as blood worries him. It was no use because he became hysterical. His hysteria was very different to his usual teary fussing (as many 6 year olds do when in need of TLC). He began to scream and squeal a very high pitched squeal, he was rocking and flapping, he was panicking, he wanted comfort but kept pushing me away and he interspersed the screams and squeals with frenetic pleas of ‘Help me! Help me!’ He was inconsolable and it took me more than 1 ½ hours to calm him down to a reasonable state. He then continued to rock and sob on my lap.

Without the pizza shape irritants in his body, I would have been able to calm him right down within half an hour and he would not have exhibited the rocking, flapping and squealing behaviours (which are found on the Autism Spectrum along with face blindness and tactile defensivity – not wanting his personal space invaded, oversensitivity to touch, pushing me away despite wanting comfort). He also would not have pushed me away after the initial pain subsided. Consequently, he distressed his baby brother and his father – the whole house had been disrupted by the ingestion of the miniscule dose of pizza shapes only hours earlier.

The next phase of the reaction involved him not being able to go to sleep, and then once finally asleep, waking all through the night. He finally succumbed to sleep at 11.30pm after his usual Catapres dose and some Panadol several hours earlier. His body was still too irritated to properly settle down. Massage was useless because now he was oversensitive to touch. Whilst asleep, he did not lie still all night. He was thumping, wriggling, tossing and squirming all night. You could not say he had a restful evening and neither did we.

He was awake at about 6 am despite his late and unsettled night and the irritated, angry behaviours commenced immediately. He had an argument with his brother over the TV that ended in a fight, because he couldn’t step back and get help to sort it out without using his hands and body. He was physically and verbally aggressive and violent. His defiance was escalating and every single thing that went on in the day was a bone of contention. If we said it was black, he swore that it was white despite any evidence to the contrary. If his brother looked at one of his toys, or dared go near his bedroom door, then he hit him without even blinking. I spent this day diverting, refereeing and taking my son out of the house to separate everyone and try to reduce the exponentially increasing stress levels. Bedtime was no better tonight either.

He also began to exhibit physical symptoms today. He now had patches of eczema under his armpits – these only ever appear when he is reacting to something – he had a pre eczema scale – like ichthyosis - all over his torso that he constantly scratched at. He had heartburn, his belching increased, he had wind that you could hear in his digestive tract, he had ‘allergic shiners’ (large dark circles under his eyes), he had greyish skin tone, he had a red burn mark with skin peeling off his behind from the irritants passing through his digestive tract and burning him as it went. There was nothing I could use to relieve his discomfort as nothing would stay on his skin. These physical symptoms would remain until his body was finally clear of what he had ingested.

Upon waking the following day, it was still evident that the aggression was present, although a little milder than yesterday. I managed to encourage him to have some solitary play in his room. He was still irrational and oversensitive and not coping and lashing out. By the time school began, he was in tears clinging to my legs. He was suffering terrific mood swings and his anxiety levels had really increased – he becomes very anxious when his body is compromised by the wrong foods or chemicals and this directly affects his behaviours too. I let his teacher know and organised to collect him early as I knew a whole day of school would be too much. His ability to perform his work had significantly decreased compared to the week before and he needed much more support to complete tasks. His behaviours in the playground were more frenetic and wild, but fortunately he didn’t get into any scrapes that might be finished physically.

In the afternoon, he exploded again – tiredness and the pizza shapes a volatile combination. I rode a rollercoaster of violence, verbal abuse, screaming, aggression, hugs and apologies. It was all I could do to get the situation calm enough for us all to co-exist when Dad got home from work. Unsettled sleep was still an issue. This pattern of morning irritation, school, early pickup, irrationality, abuse and calm continued for another 6 days before things significantly improved. It was a hell of a long time to suffer for such a piddling amount of additive laden Pizza biscuits! Another unfortunate feature that reared its ugly head during this horror period was a return to very negative self image; calling himself stupid and an idiot, saying and believing that no-one liked him and no-one loved him, and believing that his friends didn’t like him anymore either. When he has a reaction like this, he believes he is not a good person. This is a very heavy burden for such a small person, but it has been a part of his reaction pattern since he began to speak. When he was eating a lot more foods when very small - before we had pinpointed the problem (and life was hell for everyone), he would sometimes self harm and sometimes even say ‘I wish I was dead’. It is a very scary and affronting thing to hear your two year old say, "I’m a yucky person! I wish I was dead!"

I always take great pains to point out the wonderful things about him and his achievements and I try to provide lots of situations where he will feel success, but it is undermined very quickly when something like the pizza biscuit incident occurs.

Oh, and what additives were in the box? A combination of at least four glutamate flavour enhancers, some colours, added flavours, vegetable fat (that is likely to contain one of the harmful antioxidants but which doesn’t have to be listed because it represents less than 10 percent of the final product), cheese powder (also usually has added flavour enhancer in the manufacturing), spices… I think anyone reading this will get the picture!

What can be learned from this horrible but true story?

• Food additives DO hurt children.

• Food additives vicariously affect others.

• Possible reactions are many and varied. If you’re lucky, you may only exhibit a few minor irritations. If you are unlucky, it will affect your whole life until you can overcome the dosage.

• Physical, mental, social and emotional health can be affected equally.

• Reactions are dose related. The more you have, the more likely you are to suffer a reaction.

• Reactions are individual, and depend on your tolerance.

• Society eventually pays for the individuals who cannot cope with the additives in their diet but are not aware of the connection: mental illness, conduct disorder, depression, drug dependency, costly and often ineffective medication to treat a sufferer's great variety of symptoms, property damage, incidents of rage, family and relationship breakdown, compensation paid to people who end up the innocent victims of others who themselves are really the victims of the food industry… All of this has a cost, whether just an emotional one, or a monetary one. Incarceration of food ’victims’ is yet another cost – and one better spent in prevention and better health outcomes for all.

Many of the additives now permitted for use in our foods were not permitted as recently as 5 years ago. If we didn’t need them in our food then, and they can have a harmful effect on children and adults alike, then WHY are we allowing them into our food now?! - Sheryl, ACT

We are doing the elimination diet to try and help my oldest daughter.. She is 8 years old. Her main problem is that she has suffered from regular, unexplained and excessive fatigue for several years. We have also recently realised that she suffers a lot of dizziness and light headedness too. She has good days and bad days, as well as long good stretches and bad stretches of 1 - 4 weeks. When bad she can miss quite a lot of school, hates getting up in the morning, hates school, and spends all the after school period on the couch, until bedtime. Other symptoms which bother her are periods of excessive irritability, difficulty getting to sleep at night, being very sluggish in the mornings, difficulty focusing and applying herself, daydreaming and being slow to get anything done, being very pale in the face at times, fainting (at sight of blood), periods which seem like depression, and at times, poor appetite and feeling of nausea after eating. It was only after thinking through everything written in Fed Up that I realised she had so many symptoms. These things have become apparent gradually since she started school, but seem to be trending to get worse. On the plus side, she is very clever, has always put in a big effort at school and is consistently a very high achiever, is well behaved, patient, sensitive, thoughtful, kind, and hardly ever gets into trouble. In fact, one teacher thought she was "too good" - which could make it hard for her to stand up for her own needs.

She has had blood tests a few times, which found nothing, but she is absolutely terrified of medical procedures (and will faint) so we have chosen to explore dietary options. We are in the second week of our elimination diet, it has been very interesting. I think I believed nothing would happen. We took ages to get ready (mentally and in terms of stocking the pantry) so we were additive free for a month or so before starting. During this time she was gradually improving but nothing drastic. On day 3 and 4 of elimination she "lost it" - picked fights, became over emotional, almost hysterical, restless, teary, irrational, and claimed we were all against her. I was a bit scared as this was not in the least her normal behaviour. She also had some nausea. However thankfully these withdrawals eased off by day 5. The first improvement she noticed was that she didn't feel irritable any more. Then she started to say she had more energy. She has clearly been getting more involved in activities and spending much less time on the couch. She has been focused enough to do good piano practice, and she has stopped saying she hates school. - by

I wrote to you several years ago when I first read your book and put my son, now 10, on your diet. I followed it for approximately a year when I decided that I wanted a professional to confirm what I was doing. So I attended dietician appointments with my son for about 6 months. I would have been better off doing it myself all along. The dietician confirmed that my son had an intolerance to salicylates. Then she proceeded to wean him onto them - every second day. It only took one week for his teacher to come to me on bended knee asking me to return to what I was doing with his diet, and to cut a long story short he was banned from ever attending a school function again. I argued with the school, saying that if he was an epileptic they would understand it was a problem out of his control - bottom line - he is now allowed at school functions and we have had two years incident free, until recently.

It seems my son can react to salicylates just from handling them. We have a weekend house that has prolific orange trees. One Saturday afternoon when my son was picking oranges for the rest of the family to eat, he became "the monster". There was no improvement and on Monday morning he fought with his sister about juicing the oranges. At school he was worse than anyone had seen him before, running away from the classroom. When he was found and taken back to class, he locked the teacher and children out of the classroom. The deputy took him to her office to try to calm him down (she is a believer in the diet) and claims that he just continued to babble and talk gibberish. He was suspended from school for two days after this incident. All his regular teachers are at a loss to explain how this child who is by nature helpful, courteous and bubbly can suddenly become this "monster". After the monster phase he became very lethargic and fell asleep continually. He was still irritable and altogether it took two weeks for him to return to his old self. - by email

I'd known about elimination diets for a while, but when a friend recommended your book "Fed Up" I got a much better understanding of how it worked and was motivated to try it for my Chronic Fatigue Syndrome - my brain is working much better now than it used to. - by email

Thank you for such an honest and up front book (Fed Up) about what things are damaging our kids. - by email

My partner is sensitive to salicylates. He has seen a dietician and a team of doctors for his illness, but to be honest we have found 'The Failsafe Cookbook' and your website much more helpful with the salicylate part of the problem. - by email

I saw a story on your book Fed Up about 2 years ago in Perth. Since then we have been trying to watch what our eldest son eats. It has made such a difference. Before he was rude, disobedient and hyperactive. Just by cutting out a few things (especially commercial bread) he is now a beautiful little boy and I am able to keep my sanity. - by email

Congratulations on an excellent site, I wish I'd found it a few months ago when I was scratching myself until I was bleeding from the worst rash I have ever had. Just in case some people think that food additives only affect children, I'm 56 and another victim of 635. I believe that packet soup was what triggered the rash, then things like BBQ chicken from Woolies, pizza and even KFC, although I can't prove that it contains 635 (but I bet it does).

I must admit the one food I miss has been my cup of hearty soup. I'd have it by itself or use it in casseroles. I can't find a stock cube or stock powder that doesn't have 635 in it.

The most amazing thing is that neither my allergist nor my dermatologist had heard of 635. The rash just faded away when I stopped eating 635. I could have saved the $1000 that I spent at the specialists. My allergy specialist says I can now safely eat those foods again because the rash has gone but I won't be charging into a 635 diet to see if it comes back. Nine months of hell was long enough for me. - by email

Thank you for coming to our town to spread the word. There has been some very positive feedback, and a number of families are currently on elimination diets. One Mum is so excited. She, her family and the teacher noticed definite behavioural changes in her 6 yo son after just one week … One of our local bakeries is very happily baking failsafe bread. He has a son who had some intolerances to some foods, so he is very supportive and obliging … A parent on the school tuckshop committee (they currently sell chips, lollies and soft drinks) has done a survey where a majority of the replies supported some changes to a 'healthier' tuckshop. So they plan to slowly remove and replace the most offending foods … Also we have a butcher who is very happily making failsafe sausages for us … We seem to be having some great things happening in our town now, and it is to you we send our thanks. I feel we were just so lucky with the timing, that you were able to fit us in, it must have been meant to be!! - parent from a small town which recently hosted a failsafe talk.

"I came across your book by accident and decided to do the elimination diet before considering drugs for our son, as I have been on drugs for years myself for ADD associated with Tourette's Syndrome. As it turns out, I react VERY strongly to amines. We've only tested salicylates and amines so far. I have been able to reduce my medication by half. It's early days yet, as we've only been on the diet for 32 days and I daren't get my hopes up too much. My son didn't react to salicylates or amines. He is much calmer on the diet; certainly not in need of medication. We already know he can't tolerate gluten, as he has had a lifetime of diarrhea until he went off it. It's exciting to be able to take back some control of one's life through diet." - by email

I have been an insomniac since I was 16. From my mid 20s it has been a major issue in my life. I have lived on approximately four hours sleep a day. I have spent thousands of dollars in trying to find the answer. I have seen naturopaths, homeopaths, medical doctors, Chinese herbalists, acupuncturists. I have been to a sleep centre where they tried to teach me to sleep. I have tried every imaginable trick to try to sleep. For three years, I stopped drinking or eating anything with caffeine. I would drink warm milk before bed. I would take a run before bed. I would read a book before bed. Have a bath before bed. You name it, I have probably tried it. By the time I turned 30, I decided that I had to learn to accept my insomnia - 'this is as good as it gets' sort of thing. In the worst scenario I would read till all hours of the morning. Having said that, I had to also accept the fact that I was tired most of the time.

I had my son at the age of 31. He was a colicky baby, a terrible sleeper. He also had heartburn at night, which his ped attributed to the fact that my son still breast fed at night, up to the age of 25 months. I never understood the relationship between breastfeeding at night and heartburn, so continued doing it. My main resource and my inability to accept my ped's advise was due to my own travels to primitive cultures, where I saw babies and toddlers breastfeeding constantly; 24/7 days a week and these babies were NOT colicky, did not suffer heartburn. In fact, they seemed very happy, content, and rarely cried. When they did cry, it was more of a whimper rather than the cries I hear in western society.

Being a 30 something Mum, I also was fully aware of what sort of Mum I wanted to be. I had clear visions of being a compassionate Mum; this entailed no spanking, no yelling, but rather validating feelings, finding alternatives whereby both of us would be happy, and in the worst scenario just accepting that my child and I would not always agree, but I would still respect this difference rather than fight it. My son' s temperament, however, tested me to the core and I failed often in living my maternal visions. Yes, I have yelled at my son, yes I have spanked him (to date, three times - he is 2.5 years old and each time I think about it, I do cringe with disappointment with the evidence of my weaknesses). My son, from an early age was high need and wanted full on hands on care, was constantly on the breast, slow to unwind, wanted in-your-face attention, constantly in my arms. In a nutshell I found him draining, and highly strung. I remember when he was only five months old, having this real desire just to throw him across the room and the reality of my feelings shocked me to my core. I am by nature sensitive to other peoples feelings, gentle, gracious, etc. I took him to a sleep centre, where the staff tried to teach me to help my son to fall asleep on his own and all I kept thinking about was "seen this movie before". I thought I was going insane; my son took two hours to unwind before he would fall asleep and when he did, he
would sleep only for one hour, waking up and then would demand the breast to go to sleep again. After the sleep centre experience with my son, I decided to go by my instincts; one thing I was sure about was that I would never let my son cry it out, no matter what. Part of my reasoning stemmed from 'what if he has the same problems as me? Maybe its genetics?' another real reason for me was 'he must be waking up for some reason?' my mind, it may be hard to fall asleep, but once asleep, a person wakes up for a I decided that if my son woke up every hour, I would just learn to live with that too and together we would get through it. I put up with it literally till my son was 25 months old and by that stage, I am sure the night nursing was more a habit rather than a real need, ie, whatever was causing the night waking as an infant/baby, no longer existed by the time he was a toddler.

He was a very active little boy, who seemed too busy to sit for any period of time. His thoughts also were busy, talking constantly without taking a breathe. As a result, he always looked like he was misbehaving because he seemed to have no physical self control, although he was very gentle, loving and extremely aware of the needs of others. But then, he would all of a sudden display vocal aggression, and physical aggression, seeming to get pleasure in hurting. I could not understand this Jekyll and Hyde personality.

Most people that I turned to, either suggested more discipline, in the forms of spanking or severe punishment. Others suggested that I was giving him too many sweets. Others suggested that I train him at home, for instance sitting with him for ten minutes today, then fifteen minutes tomorrow. Others suggested that my son and I were too attached and he was playing on my weaknesses. Others implied that I was not a consistent mother regarding discipline. But I saw my son for the person he was. I had these real glimpses of his real personality. I thought about taking him to a naturopath or a homeopath. I resisted though because my real fear was that his behaviour would become an issue in our life like my sleeping disorder became an issue in my life. Again, I turned to my own common sense here and decided that I preferred to accept the package rather than fight it all the time. Then I stumbled on your book at a health shop and bought it.

I have only read probably one quarter of your book. But the next day I eliminated wheat, dairy and all preservatives/additives. Within two days, the son that I only had glimpses of suddenly emerged for a period of five consecutive days ... and I suddenly found myself able to fall asleep in ten minutes. My son would still wake up, and I would still respond in the same manner, but again, I would be able to fall asleep without any problems. Day six was the day that I cried. I have spent the better part of my adult life wanting to sleep and feeling tired. I have wasted years of my youth thinking about sleep. I am at times angry and at times relieved to just get out of the woods. I just can not believe that I no longer have to describe myself as an insomniac. My son now sleeps much better, but I have realized only today that I think he is also salicylate sensitive and probably so am I. Both of us, I realize now, demonstrate aggression for unknown reasons. I can control that side of me because I am an adult, but my son is more honest with himself and his world.

Today, my son was pushed over the edge, so tomorrow, I am getting stricter with salicylate and amine side of the challenges - but I feel good about it. I know where I am going now, I have direction and that my undiscipled boy does not need more discipline. In fact in the five days that he was his real self, I had absolutely no problems. There was such harmony between us that my heart upon just writing that, is swelling up ... more importantly, it has nothing to do with my adequacies as a mother, or my sons personality. It is all external to the problem. This makes me feel more confident than ever ...

I wanted to tell you my story and to thank you from the bottom of my heart. If only someone had told me at 16 what was causing my insomnia ... but then, I also know that my insomnia stopped me from resorting to ignoring my son's cries and if I was not going to find the motive of his behaviour and cries, I was just going to accept this boy as he was ... for better or worse ...

I have learned one thing in life and that is, that it is the worse situations that are character building and through them I can choose the path I decide to tread ... I am just happy that you wrote your book 'Fed up' and I am just happy that I chose to read it ... thanking you very very much ...

- Ingrid, Melbourne

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