We are currently doing the elimination diet and challenges with our son. Interestingly enough, I have discovered that every time he has a food reaction I find it very hard to understand his talking and he also seems to drool more. Just thought these were interesting side effects... – by email

Our six-year-old son is intolerant to many preservatives, colours, flavours, gluten, dairy and food chemicals. Unless we control what we feed him on his very restricted diet, he reacts behaviourally and cannot learn at school or go forward in his treatment by his paediatrician.

In early 2007, we started giving our son a gluten free bread mix which states on the packet, ‘preservative free’. We had reason to trust this product because it was listed on the ‘safe shopping guide’ issued by the Australian Royal Prince Alfred Hospital, supplied by our dietitian.

This product was wonderful with it being so versatile in producing pancakes, bread, crumpets, wraps and pizza bases all from this one mix. Our son was able to enjoy more variety without feeling deprived. Once I increased the dose of this product for our son, i.e. pancakes for breakfast, French toast for lunch and a wrap for after school, within a day he displayed explosive behaviour and was unreasonable.

We did not suspect foods as it was listed as safe and the company was a reputable company.

We rang our paediatrician who advised us to cut down on his supplement. After a week there was no change, even at school our son’s teacher was noticing a big difference in behaviour and learning. The paediatrician advised a blood test, another week passed for the results which in turn came back within normal range. Only then did we suspect foods. The Food Intolerance Network always advises their members to check products containing fats or oils for hidden synthetic antioxidants. I rang our supermarket to double check if there were any changes in their sunflower oil that we use, and they advised there were none. I then rang the bread company and spoke to their Quality Operations Officer. I asked if there were any synthetic antioxidants in their product in question, he said he was pretty sure there wasn’t. We insisted that he double check because we were at wits’ end and we were ready to have our son’s head scanned because he was so aggressive and erratic in his behaviour. The man rang back in shock and was very apologetic, because the oil which was supposed to be ‘pure canola oil’ as stated on the ingredients list, in fact had synthetic antioxidant 319 in it.

We were relieved but angry, our son was put through four weeks of hell, not to mention us as well, because he could not control what he was doing, and it took well over a week for the affects to wear off. We had our good boy back and he even said, ‘Mummy please don’t give me bad food any more’!

When our son has had foods with hidden synthetic antioxidants in them, we consider the reaction our son displayed as life threatening, for example, when our son becomes enraged with fury, usually over something trivial, he has run out onto the road. Another time when I was driving down the mountain on hair pin bend roads, enraged, our son got hold of my hood on my jacket and was pulling on it while I was doing my best to manoeuvre the car down the road without hitting the guard rails and going over the cliff. We believe that these antioxidants should at all times appear on the label. – by email, NSW [Thanks to this mother and the helpful people at Laucke’s, their gluten-free bread is now free of nasty antioxidants]

My 10 yr-old disabled daughter was on neocate advance which she didn't tolerate and I was told she was past the hospital’s expertise so they didn't know what to do with her. She was getting sick, looked shocking and her behaviour was very hard to manage (especially as mentally she is about two-year-old) so I gave her ricemilk instead of neocate advance. After four days I realized she wasn't tolerating ricemilk. So in desperation I tried A2 milk after seeing what it did for a friend’s son - his behaviour improved dramatically, he stopped screaming, his ear infections stopped and he started to talk.

My daughter has been on A2 milk for a week now (due to underweight issues she is tube fed over a litre a day) and she looks heaps healthier. Since commencing A2 milk the diarrhoea has stopped and nappies are becoming more solid, no vomiting, rashes are gone, wheezing gone and she is wanting her tube feeds - and more - plus solids, usually we have big problems getting her to eat orally. In a week she has gone from 18.2 to 19.4kg (400g being in the last 2 days) that's the best weight gain she has ever had. Her behaviour is wonderful. She is so calm and she has started to talk (she was non verbal before). She even sat with her baby sister for an hour and actually played with the baby’s toy with her. That's amazing as usually she hasn't got a very good concentration span - one minute if you’re lucky is all I've managed out of her - and she doesn't play, never has done - so her changes are amazing and very strange as she doesn't tolerate cows milk so I don't understand do you have any idea … – Catherine, Vic [For research about the effect of a peptide called BCM7 in A1 cows milk on neurological symptoms, see the book Devil in the Milk: illness, health and politics, A1 and A2 milk, by Keith Woodford, 2007. High levels of BCM7 have been found in an elemental infant formula but we don’t know about Neocate – it is usually but not always well tolerated.]

My reaction to red coloured ibuprofen is an insidious slowly building feeling of being unwell, stuffy head like the flu, but no nasal symptoms, and a queasy stomach like eaten too much rich food. The effect is slow growing over several days. When I stop the coloured ibuprofen it takes several days for the symptoms to clear up till I feel well again. It was difficult to diagnose. I have learned much of the last five years thanks to your work. When I take the white Brufen I am OK. The red ones were available on prescription thus cheaper but as I found out cheaper is not better. To get the right dose (200 mg) I take half a white tablet. – Steve, by email

My son began getting diarrhoea and severe stomach pains from tomatoes and other high salicylate foods upon introduction of these foods from 6 months. My GP wasn’t concerned about my son having constant foaming revolting smelling poo for three months but I certainly was! Thank you for your wonderful website which helped us to sort out this problem. He has shown similar reactions to salicylates in foods as he has to Nurofen – stomach pain that makes him scream for hours in agony and diarrhoea within 24 hours. This was when he was quite younger and we now know better than to give it to him. – Kate, by email

My husband has had a serious tooth ache on the weekend. He has taking Panadol and needed more relief, so I gave him some Nurofen. Well, within 5-10 minutes, he was irrational and aggressive, along with a huge anxiety attack. He then took some more two days later with the same reaction. – by email

I was diagnosed with asthma last year. I am 43 years old. This year I took two Nurofen tablets - after eliminating them from my intake last year when I went on the elimination diet - before a minor medical procedure. (I had not related Nurofen to my asthma at this stage).  Within two hours of taking the Nurofen and while I was still in the doctor's surgery I had an asthma attack. Both the doctor and I were very surprised. The asthma attack lasted for four hours!  I had had no other introduction of foods etc in the lead up to this minor procedure, and the doctor told me that many asthmatics are finding that they can not take Nurofen. I have added Nurofen to the 'don't take' list. – Kathleen C, by email

I was horrified when I served up some grapes for a snack and noticed that the packaging stated - 'these grapes may have had contact with sulphur dioxide'.  I had felt a little asthmatic over the days since I bought the grapes and once I read the label it solved the mystery of my unwell feeling. – by email

My 4 year-old daughter has had eczema and asthma since she was 12 months old. Once a month she would come down with a cold and have to use her Ventolin and she was constantly scratching at her skin. Six months ago I concentrated on removing preservatives and MSG from her diet, and have noticed a huge improvement. We have not had a cold since and her skin has cleared up. – Kate, by email

Our food journey started with me picking up your Fed Up with Asthma book from the bookstore after our three year-old had just experienced a bout of wheezing. I read it all in one sitting and was left both horrified and hopeful. We decided that since we had nothing to lose that we would try the diet as a family in an attempt to pinpoint the trigger of our daughter's asthma. I was optimistic about finding a trigger but not really expecting to find it. Grace did the sulphite challenge with an apricot fruit bar as recommended by our dietitian - she had no reaction to the salicylate or amine challenges. I gave her the bar at the start of a short car journey. Within 5 minutes of finishing the bar, her breathing had become so laboured and wheezing so loud that I had to stop the car to give her Ventolin.

Over the next few months I repeated the challenge with a different brand of fruit bar, berry flavour and again with 4 dried apricots. Same results each time. Prior to the diet she would eat dried fruit, sausages and non-organic grapes quite often and was on a substantial twice daily preventer medication regimen as well as Ventolin about 1-2 times per week. Funnily enough it had never occurred to us that ‘healthy’ food could possibly trigger asthma.

We had been told by the paediatrician that Grace had severe and unpredictable asthma and required aggressive preventative treatment to avoid the life-threatening attacks that she had experienced. Obviously we now strictly avoid any sulphites and Grace no longer requires Ventolin or preventers. We have found that her asthma is indeed predictable and is treatable without any medication. I would even go as far as to say that she no longer has asthma, she merely exhibits asthma-like symptoms in response to sulphites.

Grace’s growth had been stunted by her asthma medication. From her growth chart you can see the month she swapped to the stronger medication and also when we took her off it (post-diet). She grew 1cm a week for two months after she came off the meds. Her rate of growth is now normal .– reader, Qld

We did the elimination diet for my 13 month-old son (see story [634] Silent reflux, gastro, extreme nappy rash – months of needless medication). The other amazing thing is that after two weeks, my husband is a completely different man. He is no longer depressed, low, moody, disengaged, angry at everyone, abusive to himself (putting himself down). I had been on the verge of asking him to see a GP who is a specialist in beyond blue stuff but now there is no need. Since the diet, he is helpful as anything, has positive comments, is physically touching the kids so much more, is enthusiastic, has initiative and is just an all round changed man!!!!!  He can feel the difference himself as well.  My mum has been blown away with his changed attitude to everyone. – Fiona, ACT

I have had depression since a late teen, which got worse with each of my pregnancies, to the point where after my youngest was born I was told by a leading post-natal depression psychiatrist that my depression was incurable and medication resistant. He said I would require weekly ECT (shock-therapy) treatments in order to lead a normal life. I said no and didn’t see him again after that. Another doctor prescribed an anti-depressant that I hadn’t tried, which kept me alive. The milk allergy manifests in me as depression, mild to moderate oedema and headaches - not your usual allergy symptoms, which is why it wasn’t diagnosed earlier. Without milk in my diet I suffer no depressive symptoms whatsoever and do not require any medication (and the associated side-effects). If not for your book, I would still be popping happy pills morning and night. – by email, Qld

Fragrances have been my bugbear for years, and I find if I go anywhere where there are fragrances, I am usually ‘unwell’ for 2 - 3 days afterward depending on the length of time of exposure. As a consequence, I try to avoid doing my shopping myself, and also avoid attending church in the hot weather, as this increases the effects of the fragrances in the air. – Merryn, Vic

When I was a child I used to be unreasonably uncomfortable when in the hairdresser, and could not handle being around people with strong deodorant or aftershave or perfume, and I still can't. -  Michael (now 25), NSW

I always get a rash from perfumes but never suspected that perfume could be the cause of my headaches too, until I read your website. -  Marilyn, Qld

I read in your newsletter about a mum who has trouble with her kids when she enters shops and toilets – in the past I have bought various ‘Impulse’ type body sprays, and within a few minutes I feel anxious and very touchy. – Michelle, by email

I posted very early on when this site first started with my son's story of very severe eczema (on the soles of his feet) which took three months to clear, and was related to salicylates. We started Failsafe though because of behavioural problems and had the added bonus of the eczema clearing up completely. He also reacts badly to heavy chemical fumes such as chlorine, ammonia etc (airborne salicylates).

Anyhow, recently he had a major behavioural reaction, I was absolutely sure it was not food related. He was attending Vacation Care at the time. Recently he came home and just happened to mention that one of the ladies had sprayed something on the table he was sitting at, and when he asked what it was, was told ‘Don't worry Chris, it won't kill you’ (grrrr from me - what if he had been asthmatic?). Anyhow I decided to investigate this, as I could find no food reason for the deterioration of his behaviour.

Turned out that they had been spraying Dettol (or something that smells very similar) on the lunch tables, and regularly spraying air fresheners. (I have since talked to them and they now make sure he is nowhere near when they are spraying stuff around, and he has been fine since).

Anyway, that was the same time he started complaining that his feet were sore - I checked and there was eczema on the soles of his feet again (first time in two years of being Failsafe). Just thought this might be helpful to some out there! It can be more than food! – Jenny, NT

The writer of the following letter wins our award for persisting despite all the paid ‘experts’ being against her:

My 13 month-old son has had silent reflux (just weaned him off losec now), and yet still has bad gastro problems - excessive burping, difficulty swallowing/coordination with swallow and breathing, tummy aches (frequent back arching, screaming and night waking all the time).  My paed has recommended an immunologist but reading your website it seems we need to do a diet approach for intolerances.

I have always been careful with my diet as I breastfed him avoiding foods that were known to cause wind. I even saw a dietitian out of desperation when he was a little babe - who took my money and told me breastmilk is not affected by what Mum eats. My instincts told me otherwise. I know that strawberries, tomatoes, stock, gravy (to some extent), sausages (two nights in a row), citrus, onion and ham produces bad painful gastro reactions in him. Yet despite avoiding these, our problems still continue. If we eat out, guaranteed he will have a bad night in the next 24 hrs and bad poos for days after. My son has never had a normal poo - even on breastmilk.  Acid smell is very common, and it produces the worst nappy rash I've ever seen with skin completely gone and large patches of exposed sores.

Two weeks later …

In the two weeks since I first emailed you from sheer desperation, I almost cry every time I think about how my little son's severe gastro problems have so simply and easily disappeared. He slept through the night 48 hrs from our first meal of chicken fried in golden syrup with pasta (the only quick makeshift meal I could make the first night after I emailed you!).  His reactions of reflux, pain in tummy, badly burnt bottoms (v. extreme), excessive night waking and festy burps have all disappeared!!!!  I have spent the past 13 months in a sleep deprived land (lasting on about 4 random hours a night on average), with my daughter not getting much quality mum attention and my husband declaring ‘no more, this is it re: kids’.

Now I have a son who in two weeks has spoken five extra words, gained 600g weight, sleeps hard, eats hard, plays hard (every mum's dream), plus two new teeth  - and generally very alert, smart, and most of all, wakes from his sleep playing in his cot – no screaming. Two days after I started with that first crude meal I woke in the morning to hear his toy whizzing around, and not him – a dark cloud just physically lifted from my body and I just knew this was the last piece of the
puzzle of our long journey. I continued the diet from the info on your internet site and saw the dietitian you mentioned. The other amazing thing is that my husband is a completely different man (see story [630] ‘No need for Beyond Blue due to diet’).

I have now seen three dietitians, three paed's and a whole swank of GPs. I could have saved my son months and months of pain and high levels of losec medication. The medical profession has a lot to answer for, not listening to Mum's intuition. We had attended a feeding clinic where they have sessions with a dietitian, speech pathologist, and child health nurse (3 with you and bub) to work out reflux issues.  My son had all three problems - still has swallow/coordination problems, and is very very cautious with food textures. So I spent most my time in these clinics (been 3 times already) talking diet - and you know I remembered this morning out of nowhere that the dietitian in these clinics did say something like: ‘tomatoes, strawberries, stock - yes they contain salicylates, ahh but you don’t need to worry about that. That's too much detail.’  I did question her again on it, but I forgot what the 'salicylate' word was at our next visit and ended up sounding stupid. I was nearly there with my list of existing reacting foods but did not have the expertise to link them together. I thought it was acids affecting my son and sugar affecting my husband. Oh well. Move forward. At least I have my husband back again and a gorgeous boy we can all enjoy.  :) – Fiona, ACT

My husband has severe and crippling arthritis - failsafe foods have given him relief and mobility. – by email, NZ

My daughter was diagnosed with juvenile arthritis when she was three. By the time she went to school, at five, she was crippled with it. She's now 25. Three weeks after she started her elimination diet, she told me: "Mum, the pain's gone. For the first time in 23 years, I have no pain". - by email, NT

My maternal health nurse suggested that I contact you about my 18-month-old son’s sensitive ears. They were tested when he was young and were fine. He has started speaking a few words and seems to comprehend things you ask him to do, but when he is around noise he cries his eyes out and needs to be taken away, simple things like singing happy birthday in a group, a group clapping, and sporting venues will bring it on. He also puts his fingers in his ears and blocks them every now and again as if they are annoying him. He eats a lot of organic veg and fruit. [two months later …] I bought your cookbook and started cutting down on tomatoes, dried fruits and fresh fruit, and I have noticed a huge change. We even took him to the soccer in Melbourne. We’ve done that before, but it ended in screaming and us leaving! This time he was fantastic, we stayed for the whole game and he loved it. The noise didn’t bother him at all. If I feed him spaghetti or anything with lots of tomatoes, he holds his ears and tells me 'ouch, ouch'. – by email, Vic [See hyperacusis symptom discussion]

Just thought I would let you know, after your recent talk in Maitland I went back to work and told a friend about annatto 160b as her two-year-old daughter had been splitting her head open head banging. My friend has kept her daughter off the annatto for a week now and her daughter has stopped head banging. She still gets in the position when she is throwing a tantrum but doesn't bang her head. Amazing! This is only additive she has removed! – by email, NSW

My four-year-old son has peanut, egg and dairy allergies and is anaphylactic so as you can imagine I spend hours reading labels. We have been buying So-Good products for about two years and generally he is fine. Recently he has been having the creamy vanilla for dessert and having what I thought was a croup cough. I soon realised the nights he didn't have it there was no "croup cough". After several calls to Sanitarium and speaking with the dietician, I have worked out that it must be the annatto E160b causing a reaction. – by email

My son was a premie with a family history of asthma and as a little one had wheezing episodes throughout his life.  We were very experienced with asthma attacks and had all the medicines and equipment at home. My son had always eaten natural, homecooked foods as we just tend to not be junk food people. Just before Christmas when he was 19 months old I had commercially prepared eggnog in the house and gave him a tiny glass as a treat. Within 15 minutes he went into the most severe asthma attack we had ever seen. We gave him his medication and used his nebulizer, but he was not coming around.  He had had a number of asthma attacks and this was nothing like it.

Our pediatrician had us rush him to the hospital. He was given immediate care - very unusual in US hospitals. The doctors didn't really know what to do. They gave us megadoses of all his medicines, put him on pure oxygen, put IV's in him but he didn't come around. They called Children's Hospital who sent down a team of 4. Our pediarician stayed with us for hours and his daughter was due in at the airport, so we knew it was serious. The doctors from Childrens ended up using Atrovent, a medicine at that time used only for adults. Our hospital didn't even know to use it on children. Ryan came around but it was very dicey.

After Ryan got out of the hospital I looked up asthma and found a British book that mentioned major chemical triggers for asthma including tartrazine a yellow food dye. So I had an idea that it might have been the cause. I then met with a specialist who felt that I was probably right, but there was no test because it was not a true allergy, but that I should avoid it because the next time we may not be so lucky. He said that often it is subsequent exposures that are more serious. Ryan did bite an Andes mint about a year later and once put a green M&M in his mouth and then rapidly removed it.  Both times he had microscopic amounts of the candy and both times had very dramatic reactions. So we avoid it very seriously. – Heather, USA

My 37-year-old husband recently had suffered from racing heart beat twice in two weeks. When I was checking out your website for stuff to do with our daughter I happened to find the info on heart palpitations etc and straight away remembered seeing empty [yellow extruded flavoured snack with flavour enhancer 631] packets in his workbag! The racing heart beats came in bursts of maybe 5 to 10 seconds, 2-3 times an hour, a few hours after eating 631. It even happened when sitting down under no exertion. An ECG ten years ago showed his heart was fine. Since seeing your information, my husband hasn't had any more of those snacks or heart irregularities. – by email, Qld

I would like to add my objection with regard to the recently approved flavour enhancer 635. In August of 2006 I developed a rash over various areas of my body. Scratching resulted in raised welts, little sleep and caused quite a disruption to my life at work and home.

My local GP referred me to a dermatologist at a hospital in Victoria. The usual allergy tests were negative and 2 lots of blood tests were normal. His suggestion to control my symptoms was to keep on taking up to 4 (24 hour) anti-histamines per day. I then consulted a naturopath/kinesiologist in December and am continuing on with this treatment.

All of the above has cost me not only money, but has taken an emotional toll through tiredness and the feeling of, 'Will this ever stop?'

I stumbled across your reports of 635 earlier this year, but as I was at the stage of trialing a gluten free diet, didn't follow up. Then a few weeks back I made chop suey and pumpkin soup using my traditional 30-year-old recipe. I ate the chop suey for tea and the soup for lunch the next day. The itch had started to calm down over the few weeks preceding, but after the lot above, I itched for a good four days. Guess what? Flavour Enhancer 635 is in the packets of Chicken Noodle Soup
(which I have been using for 33 years in my chop suey and other recipes), and the dry stock powder also has 635.

Trial and error has shown me in a really rotten way, that anything I use with 635 gives me the itch, the rash and the ‘what is going on’ feeling. I have now also reacted to [dry stock powder containing Hydrolysed vegetable protein (Maize Derived) and yeast extract] as well as [flavoured rice crackers with Vegetable protein extract (Soy Derived) and yeast extract]. I am starting to think that 635 has triggered off a yeast sensitivity. - by email [Vegetable Protein extract, yeast extract and Hydrolysed Vegetable Protein are a way of adding MSG to foods without saying so. It is common for people who have suffered from long term Ribo rash to become more sensitive to other sources of MSG, and sometimes to other foods as well - S].

Previously from story [569]: I'm sure that my symptoms intensified as we have been planning to do some long walks and were trying out pre-packaged and dehydrated foods (all containing 635). Ironically I was going to go on a course of prednisone to dampen it all down so that I could walk, while I would've been eating the very thing that is causing the problem.

Update: I did the Jatbula Trail (six day hike in the NT) last month and ate well without taking any commercially prepared dehydrated foods. Since avoiding flavour enhancer 635 my condition has improved 99%. I still occasionally get small outbreaks of itchy welts. I haven't needed to take any Claratyne or use topical hydrocortisone cream as these mild outbreaks generally settle overnight. It hasn't been too difficult to avoid, mainly changing types of crackers and avoiding precooked
chickens, sausages, frozen lasagnas and pies. The kids are onto checking out all the labels now too and we have stopped nearly all precooked sauces and anything that has an oversupply of numbers on the ingredients list even if it doesn't have 635. I am extremely happy as it is no longer a daily problem and the solution has been very easy. Eat mainly homecooked whole foods and cut out the processed products! – by email, NT

I came across your fantastic website in my search to find out what was causing my 19 year old son’s hives and angioedema. As a baby he was intolerant of formula and soy, and had an anaphylactic reaction to penicillin. He is now 19, and has been very healthy up until a couple of months ago. He awoke one morning and his upper lip was quite swollen, he had no other symptoms, it was quite bizarre and the swelling lasted for 24 hours. One week later the same thing but this time it was his bottom lip. Being a typical young man he didn't see the need to go to the doctor. Then three weeks ago he awoke one morning covered in a rash and very angry looking weals all over his body, swollen eyes, lip, ear and even his arm. He went to the doctor who said it was an allergic reaction to soap, deodorant or washing powder etc. It took nearly 10 days for his body to return to normal. He has since had another 3 attacks, the swelling hasn't been quite as bad, but still present. I did not believe that the doctor had any idea and I was sure it was something that he was eating. So I started keeping a food diary and we had managed to narrow the offenders down to four things. Then I found your factsheet on ribo rash, which I am positive is what he has. I have always tried to feed the kids a balanced diet, meat, chicken, fish, fresh fruit and vegies, junk food is a rare treat. I was absolutely astounded when I went to my cupboard and started checking labels. One that really caught my eye, that I had assumed was a fairly healthy choice of snack was seaweed rice crackers, yes there it is clearly on the list of ingredients, 631 and 627. Then on the front I looked at the packet again, ahhh, seaweed FLAVOUR!! Maybe you could put this on your nasty foods page. – by email

Three months ago, my father aged 74 who has never reacted to anything - plant, animal or food - had a major reaction of a welt like rash on the trunk especially in the groin area and under arms. It was enough to go to the doctor who simply dismissed this as hives and prescribed steroid tables with no real explanation of what had happened. His wife thought there must be a connection as it was half an hour after eating a packet pizza containing 635 that they hadn't eaten before. A similar incident then happened about a week later, after eating [a ‘healthy’ prepared frozen dinner also containing 635] for the first time. Now they avoid such packaged food and he has not experienced it since, although he has often eaten in restaurants with no ill effects. – by email from NSW

Additive-free antibiotics from compounding pharmacist : Our 3 month old breastfed baby has to take oral antibiotics so I explained to our local pharmacist that I wanted no added colours, preservatives or flavours. He had no idea what was in antibiotics other than the active ingredient, conceded that I knew more about it than he did, and gave me a contact for a compounding pharmacist. They made me up a liquid that is just the antibiotic suspended in water, with nothing else added and made it concentrated so that I could give her less at one time. It tastes bitter but she takes it squirted into her mouth with a syringe with no problems.  – by email

Additive-free supplements from compounding pharmacist : When my son needed an iron supplement with Vitamin C, I spoke to our compounding chemist - a very useful person, I think everyone with dietary issues should have one! He went through everything and came up with three alternatives - two were the supplements listed on your web site, the third was to put his skills to work and make up a special mixture in the necessary dose for my child. I think I need to get a tattoo on my eyelids that says ‘if child requires medicine - speak to Compounding Chemist’. [Search the Yellow Pages online under Compounding, there are 66 Australia-wide]. – by email

My husband and I are doing the diet to support our grandsons. As a spin off, my headaches which I blamed on shift work and lack of sleep have disappeared except two times when we didn't have the boys and ate Chinese or Thai, both times I woke through the night with a raging headache. My husband who has been short tempered through our 28 years of marriage, has had a change in temperament/ behaviour, for the better. -  by email, NSW

My daughter who is 16 has Generalised Anxiety Disorder, with panic attacks. So I have tried to keep her on a mostly additive free diet. It has been a bit tricky, but so long as I have something ready for her after school, she doesn't care what she eats. I haven't tried to restrict her when she's out with friends, but she takes her lunch to school and only eats the bad stuff probably on the weekend. After getting serious about cutting out additives I suddenly noticed one night that our house had become a lot calmer. I guess it wasn't overnight (didn't really expect it to be) but I all of a sudden realised that things were travelling very smoothly. So I definitely believe that cutting out additives have made a big difference to her whole personality, and produced a calmer household all round. [Update one month later, this family is now reducing salicylates]. – be email

I was recently on a forum, having a whinge about my 2.5 year old son, and how terribly difficult he is. I was asking advice on ADD and ADHD. A lady on the forum offered to lend me your books ‘Fed up’ ‘Fed up with ADHD’ and the cookbook. I took her up on this offer so as not to appear rude, but have to admit to thinking ‘It's not going to help me’. I started reading ‘Fed up with ADHD’ first. Well, you could have substituted your daughter's name for my son, your name for mine and
so on. I nearly cried.

After that, I was determined to start Failsafe. It was pretty daunting, and I have made many mistakes. I have been doing it for about 3 - 4 weeks now. I still haven't gotten it right, but even so the difference is amazing. My defiant son is starting to listen and follow instructions! I was able to take him grocery shopping and he walked next to me putting items in the trolley. He never screamed, ran off, threw a tanty or pulled anything off the shelves! This has never happened before!

My husband gave him vegemite on toast yesterday (I was outside feeding the >animals) and within 3 hours he was right off. Last night he woke frequently, screaming and running through the house. He was up super early and has been non-compliant and very annoying all day. He used to eat vegemite daily!

I wanted to thank you for your books and for sharing your story. I'm so glad that I gave it a go. It has made such a difference to our lives in such a short time.

My husband and I watched a news program on the children at Nana Glen Primary School. We were so impressed we thought we d try it with our two boys, aged 10 and 6. Both boys suffer with asthma and croup and both are very loud and active. Our oldest has always found it very hard to go to sleep, most nights he was still up at 11.30pm. We’ve tried various relaxing techniques, CDs, quiet reading and after two weeks on the diet he is asleep in 15 minutes. Fantastic!!!!! He is happy to sit quietly with a book and wants to talk about stuff going on. The standard answer I used to get was ‘nothing’s wrong’. He was always so sad and serious about everything. The biggest change has been him giggling and throwing his arms around his dad and saying ‘I love you guys’.

Our 6-year-old has been a very emotional child. Always close to tears, unable to put into words what is making him frustrated, angry, and teary. Now he is talking about how he feels and reasoning with other children rather than coming to me crying. They are both filling our house with laughter once again.

We bought your failsafe book and the difference in our boys is amazing, to the point of other people are commenting. Thank you for simplifying all the numbers and facts and giving us back our two beautiful boys who for a long while had been lost.

My husband and I now sit on the couch and listen to the sounds of two boys playing well together and enjoying each others company, no more fighting to the death near enough. - by email  from WA

In 2006 my quiet 7 year old daughter was diagnosed by her paediatrician as having severe inattentive ADD. He offered Ritalin to help the symptoms. I was not comfortable giving her this as a first step because in the 2 weeks since our last appointment I had read 10 books and scanned the net. A common theme kept coming up. If your child has an intolerance to a food group there is a likelihood of more than one intolerance which can lead to behavioural issues. I felt I had to investigate this before trying medication because we already knew she had a dairy intolerance as a baby.

I chose to follow the Fed Up elimination diet by Sue Dengate.  Following are the results when food groups or additives were re introduced.

* Colours - anger followed by tears, inattention, lack of concentration, memory loss, head banging and rocking
* MSG/635/Glutamates - nausea and stomach cramps
* Benzoates - aggression
* Antioxidants - 310-312, 319-320 - nightmares and trouble going to sleep and staying asleep
* Propionates 282 - bedwetting and daytime bladder control issues
* Dairy - nausea, stomach cramping, diarrhea, inattention, fatigue
* Soy - stomach aches

It has been 14 months since adapting to my daughter’s dietary needs. She has been reassessed for ADD with a normal out come. Her school work has progressed. She is able to concentrate. She can tie her shoes, hold a knife and fork, remember her phone number, ride a bike, and skip a rope. She is able to follow multiple directions and hold attention to the task at hand. She has friends. We have also discovered she is a budding artist.

Through dietary changes we helped many of our daughter’s physical and behavioral issues including fatigue, tearfulness, emotional outbursts, inattention, lack of short term memory, lack of application at school, bedwetting, vaginal irritation, rash, insatiable appetite, imbalance and clumsiness (she could not ride a bike, skip, hop), nausea and stomach cramps.

My daughter did not need medication. She has food intolerances. As grandma said ‘Whatever you are doing keep doing it. She is a different child’ - Trudi, NSW

 

 

•     We were pressured to put our child on medication at the age of five, and it had a negative effect on him. We then began to rethink our options and decided to go totally failsafe, within days we had what could be considered a normal child (from talking point)

•     Thank you for writing your fantastic recipe book. We have been using it for a while and have recently gotten "Friendly Foods" as well and as good as it is for a lot of stuff, I'm SO grateful for the simple, family friendly recipes in your book. – by email

•     I was happy to see our school tuckshops changing their menu but disappointed they only looked at fat content and not additives. Our tuckshop sells an icy drink which is loaded with preservatives and artificial colours. No wonder there are so many children going to the Behaviour Support Room. – by email, Qld 

•     We have just spent 3 weeks on the elimination diet.  We are amazed at the positive change in all of us, (a hyperactive, asthmatic, eczema-stricken three year old boy; a 40 year old dad who has suffered from chronic asthma all his life; and a 34 year old mum who thought she felt pretty healthy ... until the last three weeks, where I have felt better than ever) - Julie

•     I am 32 and have been feeling ill for a while. Without realising it I had been filling myself with additives in soft drinks and packet snacks. Now after two weeks additive free I am feeling great, lots of energy, no muscle aches, no headaches! – by email

•     Through the elimination diet I have learned I am sensitive to salicylates, amines (very) and milk. I never expected milk. When I dropped mil, my nose opened up. When I challenged it, my nose got stopped up again. – by email, USA

•     I recently went to eat some store bought Coleslaw from the supermarket and had a look at the ingredients: colours 102, 110 and preservatives 211, 202, boy was I shocked!  I want people to realise how easy it can be to read the back of a packet. Taking the no additive challenge does not cost a cent more, if anything it is cheaper in your weekly shopping. - Angie

•     We have been trying our best to avoid all the nasties on your list and our son has finally begun to say words sometimes linking 3 or 4 together (he is 3 and a half!) and he is an angel to live with - I never thought he would talk, so it is a true miracle and we are sticking to our new diet! – by email, ACT

•     We saw the school program on Today Tonight and my eight-year-old son looked at me every time one of his symptoms (asthma, bed wetting, sneaky poos, cradle cap, irritability, poor concentration) was listed. I thought I was a pretty healthy provider of food as I do a lot of home cooking but it is scary to see what is in some of your everyday foods.  – by email, SA

I am an ordinary person in the community who happens to believe the work you are doing is fantastic. I have therefore nominated you for Australian of the Year. I hope you don’t mind. I included the following in the nomination:

‘I have been a follower of Sue Dengate's books/website regarding the effects of food additives on the health and behaviour of people, particularly on children.

‘I recently viewed a story on Sue educating six-year olds in schools to eliminate harmful food additives. The children were intelligently choosing appropriate foods from the supermarket and school tuckshop. Grades went up, detentions were almost eliminated. Children were happy and well behaved.

‘Apart from the obvious benefits to the health of the children, and making life easier for parents and teachers, this has many long-term benefits. There will be little need to target obesity, as the foods that contain harmful additives are mostly the same foods that cause obesity. Health problems in children and later into adulthood will be greatly reduced.  This would do more to reduce the load on the hospital system than any federal or state government could ever do.

‘Our kids are our future.  I cannot think of a greater contribution to our society than educating children to be intelligent about the food they eat, and to be aware of the consequences and results of their choices. Please refer to following website for further information:  http://www.fedup.com.au'  - Helen, by email

Near the end of 2006 I was getting sick and tired of all the kids at my old school ripping me off and teasing me for being on a ‘diet’. In October I had a school project to do, something that we were passionate about. I asked my teacher if I could talk about the diet. So I spoke in front of 380 children, parents and teachers at Maitland Public School. See my speech below.

Parents, Teachers and Classmates,

In June 2005 mum put myself and my brother on a diet as I was very hated and always getting into trouble and even being called ‘Hekyl and Jekyll’ by our school counsellor. No matter how hard I tried, I could not seem to behave better.

At first we hated the ‘diet’ because we couldn't have our ‘normal’ food and we did not like being teased some of the kids at our school, some of you did not invite us to birthday parties because of the diet. We soon realised how much better we felt and how much better we were behaving, the food wasn't that bad, it was really good and good for us, so we both decided that when people ripped us off we would say ‘We are not on a diet, but an ‘Adventure’, we are not made to do it, we choose to because it will make us healthier’. So everyone in our family and friends call it our Adventure, not a diet.

On the adventure we have found that I react to Amines as well as the artificial stuff and especially 160b, and my brother reacts to Sulphites and the artificial stuff as well. Mum also found that I get very sick when I eat stuff with 160b which is advertised as natural, which I guess it is but they do not tell you it can make you extremely sick. When I eat these types of foods, I get very irritable, cranky, aggressive, violent, black bags under my eyes and sometimes would bang my head against things to try and make the pain go away. I do not mean to do this but I cannot stop myself from doing it.

I have not had and neither has my brother any problems since June. It feels so much better to able to control myself and not get into trouble. I know that some people especially teachers I have already upset, and sadly I know no matter how hard I try or how good I get, you will not change your thoughts about me, so I have decided with my mum, dad and brother to move to the new school that is being built, just around the corner from our house to start a new ‘Adventure’ and hopefully will make new friends and people will accept me for who I am.

We cannot believe that the big companies are watching out for us, because they aren't, if they were, they would not be putting all of this stuff in our food when it makes us sick. They are more interested in getting money, which is wrong. Once you start looking at what is in our foods, it will make you sick to think that is what we are putting into our bodies.

Just by cutting out the additives, preservatives and natural things like 160b, you will see how much better you will feel, not just for us kids, but the adults as well. Our Adventure really has made a huge difference. Give it a try, it is a lot of work to make sure you don't eat the bad things, but if you have the support of your family and friends, it makes a great difference.... My brother and I are very lucky, we have mum, dad, grandma, grand-dad and our church all supporting us. Church, Before & After school care phone mum when they are having ‘party’ days and mum makes something that we can enjoy.

Parents, all you are pretty much doing is going back to basic eating like my parents and grandparents used to do not that long ago. We are all tired, but mum & dad both work full time and can manage to do this for us - to make us healthier. The more people that do this then the quicker the big companies will click and realise we won't be buying their unhealthy food.

Thank you for listening. I hope it makes a difference.

 

 

When Chris was born he was a big, boofy boy. For the first six month of his life he was a placid, calm, happy child. At six months, he changed to being very, very active, fidgety and demanding. Looking back at that time, three things changed – he started long daycare, solids and formula. I also remember very clearly that his face changed as big dark circles and creases formed under his eyes. He was labelled ‘naughty, disruptive, hyperactive and violent’ by daycare when he was
only 10 months old. He was walking at that stage and continued to escape from the childproof room, or to snatch toys from non-mobile babies.

Since that time he has been variously diagnosed by health professionals as having Tourette’s Syndrome, the hyperactive type of ADHD, Oppositional Defiant Disorder and others. Whatever the term, the symptoms are the same, including unmanageable behaviour, poor impulse control, loud voice, vocal tics, word and phrase repetition and lack of empathy.

Coupled with the behaviour has also been a range of other medical problems including croup, asthma, headaches and stomach aches, unexplained temperatures and eczema. Chris also suffers from glue ear and for the last four years has had grommets inserted every winter to enable him to hear clearly. (As I know now, these are all indicative of food intolerance.)

Last year I took Chris to a paediatrician, looking for a solution to his constant illness rather than his behaviour. The doctor took one look at him – he was making duck noises and running in circles around the waiting room – and diagnosed food intolerances.

We went home with a complex list of foods to avoid. Although his health improved, his behaviour seemed to become worse, as it always has in summer. Just before Christmas, I found the Royal Prince Alfred Hospital’s elimination diet for food intolerance. This diet was stricter but far more logical than the one we were using. It worked by identifying the chemicals that people react to, then the foods that contain them. Interestingly, the research showed that most people with food
intolerance react to the salicylates in fruit. I had been loading Chris up with cherries and nectarines in term 4. No wonder his teacher was ready to send him to Alcatraz late last year.

I switched the family to the RPAH elimination diet during the holidays. Gradually, as we removed foods from the diet and found acceptable replacements, Chris’ behaviour improved. Living with him became easier, there were less sibling fights, and when he did misbehave it was easy to use normal parenting techniques to modify behaviour – something that had never worked before.

By the end of the summer holidays, I finally had a calm, reasonable, sensitive child, who was able to play at other children’s places without causing mayhem, would look at people when talking, and would allow other people to talk without interrupting. Amazingly, Chris was keen to stick to the diet, having realised how good he felt.

First day back at school and I had lots of positive comments about how calm or grown-up Christopher seemed. A good start to the year. However, as I write this, I am back to having a child who runs around making chicken noises, uses a loud voice, is prone to crying and is violent and aggressive. What happened? He got to school and started to cheat. He ate chocolate cake, m&m’s, muesli bars and lollies. For him, even the smallest amount results in a reaction. It is like being on a trip – he can’t control his behaviour, and trying to discipline him has no effect.

So what do I need, or more importantly, what does Chris need? He needs the support of the school community to assist him to stay on his diet – he needs recognition for the fact that he does suffer from food intolerances – he desperately wants to feel in control of his life, and he likes feeling calm and relaxed, so please, please, please don’t feed my child, or encourage him to cheat. - by email, Sydney

My husband said he was supportive of our boys' [RPAH elimination] diet though I suspected secretly skeptical. Last weekend he indulged the boys in various 'treats' including non-failsafe lemonades, popcorn, etc. This morning I had the first meltdown in a couple of months from our son who has Asperger's. He was back to headbanging, crying, not wanting to eat, refusing to go to school, hand flapping, vocal tics, etc. It was full on. I talked to him about it (after he'd had a calcium tablet and calmed a little) and he said he would give up all those foods he loves if it meant he was able to be calm again. - by email, Sydney

We have been following the diet for several years and we have seen the positive effects a failsafe diet has on our hyperactive 6 year old daughter. She does have trouble with expressive language and has been having therapy for a year.  If she eats something eg a chocolate or lollies for several days, she starts to stutter really badly and she also makes "jerking" movements with her body. - by email

My son very suddenly developed mild facial (rapid blinking eye and lip biting) and vocal tics (sounds like a quiet grunt or throat clearing sound) at a time when I think his hyper/silly behaviour and other food intolerance symptoms escalated, probably in response to his increased consumption of summer fruits, salads and juices. Other symptoms included: loud voice, bed wetting, sinusitis, teeth grinding.  All of his favourite foods were high in salicylates: strawberries, apricots, rockmelon, tomato, cucumber, capsicum, broccoli, vegemite, spag bol, apple juice etc.  His diet contained few foods with colourings, flavourings and preservatives as I've always tried to encourage "healthy" foods which he has been very willing to eat.

We noticed some improvement (in behaviour, bed wetting, teeth grinding but not tics) over a week just by changing fruits to pears and bananas, stopping vegemite and tomatoes and switching to low sal veges and Bakers Delight bread.  We visited a dietitian and Joe (not his real name) started on the elimination diet. He had a very obvious reaction to sals - hyper like I've never seen him within about 4 hours of starting the challenge.  I wouldn't have believed it but my parents witnessed the reaction too!  When they visited, he was his usual self, undertaking some quiet activities requiring concentration (jigsaw puzzles, colouring etc), chatting and on his (usual) best behaviour.  Within about an hour and half of their arrival he changed into this wild, racing, hyper thing heart racing, unable to stand still, almost a "mad" look in his eyes, silly silly silly etc...the worst of it finished within about two hours and he basically collapsed exhausted and couldn't even stay up to wait for dinner guests that he had been looking forward to seeing.  Very strange but so similar to the stories I've read on your web site.

We didn't manage any other challenges before Christmas - felt it too unfair to restrict his diet so severely during the holidays, although I did continue to restrict sals and he doesn't eat many processed, flavoured or coloured foods anyway.  We continued along on this basis, watching his sals intake over a day and over a week, and the tic went completely. His behaviour was much more predictable and stable and very much like the boy I know.  He is still bed wetting although I am convinced it is worse when he has had sals (e.g. salad) in his dinner and this seems to be improving, particularly since we have been focussing consistently on his sals intake. Teeth grinding and sinusitis very improved. So I am absolutely committed to continuing our new approach to Joe's diet as we really have seen some big improvements. - by emails over a period of 3 months

Our son was diagnosed with Tourette's at the age of six. He had substantial tics, but no behavioural problems. I decided to apply the complete elimination diet (not an easy process.) By day 7, I was quite despondent with no obvious improvements and then miraculously, by day 10, his tics had disappeared. He had been experiencing severe eye, mouth and head jerking tics for over 2 years. I haven't yet narrowed the tics to any specific reaction. Thanks for your amazing website - it definitely saved our boy from a very troubling syndrome. - by email

"A great improvement in my son who has Down Syndrome"

Your books are fantastic and I have noticed a great improvement in my son who has Down Syndrome and was recently diagnosed with ADD. Apparently Ritalin was our next step! This information should be given to all Maternal Health Centres and it would save families a lot of unnecessary arguing and disharmony! - by email

Diet, sneaky poos and Down Syndrome

I have been reading your website for over a year now, after stumbling across the information on sneaky poos.

About 2 years ago our son who is now 11 and has Down Syndrome, began soiling his pants on a daily basis, rarely at school but often up to six times in the evening. I stumbled across some information about Failsafe on a parenting website and when scanning through the fact sheets, found the information on "sneaky poos" It described our situation perfectly. So after reading lots and lots of information on the Fed Up site, we, or should I say "I", along with one extremely sceptical husband, set about reducing salicylates in my son's diet to see if it made any difference. His diet was basically a salicylate feast - spaghetti bolognaise probably 4 -5 times a week, laden with hidden vegetables (mostly zucchini) and followed by a bowl of either grapes, strawberries or cherry tomatoes (that was lunch), peanut butter on toast for breakfast, dinners included tacos, lasagne with hidden high salicylate vegetables, various stir frys with worcestershire, soy, tomato, oyster sauce etc. He was also hugely into fruit salad. As I'm sure you've heard over and over, I thought we were providing him with a really healthy diet and couldn't understand why he would be unwell all the time.

Anyway we took the plunge, and within maybe three days the soiling had ceased and there were no more stomach aches. I was pleased with the results, however my husband still believed it was another of my harebrained ideas until I tested the salicylates about a month later with a huge fruit salad. My son scoffed a bowl after dinner and another for breakfast the following day. And by lunch time the next day we were back to square one. From that day on my husband has been as
vigilant as I am. I must admit, I missed all the summer fruits last season, but only having one pair of undies in the wash each day is worth it.

After going low salicylate and cutting out other nasties, we also noticed a definite behavioural improvement in our son. One thing in particular was his change in motivation, especially getting ready for school. Before the diet, I had a daily struggle with him to get dressed, as if he had the choice, he would stay home every day. After getting strict with his food, he started to just take his clothes from me and say "thanks mum" and next thing he would be dressed.

On the strict diet, he seems to be so much more agreeable and able to be redirected or reasoned with. He used to lose his temper regularly especially with our older son. Now, instead of losing his temper, he will asking calmly for help - like to find a DVD or figure out which remote he needed to change channels. His school teachers have commented on how well he concentrates this year, they were unaware that we had made any changes to his diet. The teachers have also commented that he no longer acts the fool to gain attention, and is much happier to sit and do school work, and be like everyone else.

I have also discovered that he is intolerant of MSG. He used to be addicted to corn chips, we cut those out early on in our failsafe journey. When he later ate other flavoured chips I noticed every time he had them he would cough continually for several minutes. At first I thought he was choking on the chips, as he sometimes has trouble swallowing but then it clicked - it was basically MSG causing an asthma attack.

The low salicylate diet has been a life saver for us with our son. I am a huge fan of failsafe!!! - by email

“Low salicylate diet for DS”

I have a friend who is into failsafe also, she has a 2-year-old with Down Syndrome on a low salicylate diet. Behaviour can be a definite challenge when it comes to DS and I'm sure most families never suspect food intolerance as a contributing factor. - by email

: ‘Our 4 year old has been diagnosed with life-long, tartrazine anaphylaxis requiring instant medication/epipen and hospital observation upon accidental tartrazine ingestion. We first learned about this when eating out one day. He took one bite of his meal and suffered instant and severe itch and rash with swelling of his face, lips and neck, facial, lip and neck swelling. We rushed him to hospital. From now on he has to avoid all foods with tartrazine including cordials, drinks, snackfoods and even play-dough.’

I am a new convert to failsafe eating and I am a sufferer of epilepsy. We initially began the diet for my son's problems but having read the information on the effects of additives I am also taking care to follow it myself.  My doctor recently changed my medication back to Lamictal and I was surprised and annoyed when I found the drug has had blackcurrant flavouring added to it so that it can be dispersed in water or chewed. This hasn't always been the case. A number of years ago I was taking this tablet and it was free of artificial flavours. I continue to swallow the tablets whole as they are not large or difficult to swallow and find this new format totally unnecessary. I am very disappointed with the fact I have no option to take a tablet that does not contain flavourings as I need this medication for seizure control. I believe many sufferers of epilepsy are sensitive to additives and I remember as a child of 12 when I first started having seizures that I made a connection with dark coloured icy poles and the simple partial seizures I suffered. I voluntarily stayed away from the raspberry flavours.

Many of the anti-convulsants used for seizure control are coloured to differentiate the strengths of the tablets so this problem is not just peculiar to my medication.  I would be interested to know if you can help in this area. [In our experience, the most effective action is to complain frequently to the manufacturers. It’s also worth complaining to the Australian Commission on Safety and Quality in Health Care, This email address is being protected from spambots. You need JavaScript enabled to view it.

Since 1997 I have suffered with what I was told is chronic urticaria especially affecting my hands and feet. For about a year I had constant welts and itching on the soles of my feet and would develop huge welts on my torso and back at times. It then seemed to settle a bit and was more intermittent, sometimes not happening for several months. I was investigated for SLE and other autoimmune disorders - all negative.  Over the past year it had worsened into what looked liked an urticarial vasculitis where my fingers swell, become intensely painful and itchy and small watery skin eruptions would develop into purple swellings, like blood blisters but dry. I also had episodes of joint and bone pains that lasted 24-48 hours and always had patches of welts somewhere on my torso or thighs. Some months ago I again saw a GP about it and he felt I had probably developed mixed connective tissue disorder. However all my blood results were normal and yet again I was left feeling extremely despondent about any chance of management of what had become a very debilitating condition.

Then about six weeks ago I came across your articles and letters re riborash and stopped all foods with these enhancers. Within 48 hours my symptoms had gone and I am elated to say that since, I have had only 3 welting episodes.  I'm sure now that my symptoms had been intensified in the past months as we have been planning to do some long walks and trying out all sorts of pre-packaged and dehydrated foods (all containing 635). Ironically I was going to go on a course of prednisone to dampen it all down so that I could walk, while I would've been eating the very thing that is causing the problem. Now I have done a couple of day walks wearing boots (for months I have only been able to wear crocs as any pressure or rubbing around my ankles would result in a similar outbreak to my hands) with absolutely no problems!  Once again thanks for sharing your knowledge on the web. – see photos on Ribo Rash factsheet.

Our daughter Beth is five and a half. At four she was diagnosed with Pervasive Development Disorder - Not Otherwise Specified, a bit of a mouthful but it sounds like Asperger's shadowing. She is not ASD but has a lot of symptoms in common: developmental delay in speech, fine motor and gross motor, attention deficit, poor eye contact, argumentative, very poor social skills, being in her own world.

… THEN we went failsafe and what a blessing it has been!!!!  … Ten days after starting failsafe, Beth suddenly began running around with all the other kids talking and interacting with them!! Every week, I hear new things that she is doing at preschool. At home she is constantly surprising us with new things that she says and does. It's great!! It is as if a block has been removed in Beth's brain and suddenly she has the possibility of being a normal little girl. Going failsafe is not easy but I had to give her the chance. Even though it may not fix all of Beth's difficulties, it seems to have removed a lot of them, see the full story.

How long have you been failsafe?

My 8 year old son Matt is a severe asthmatic who has been on the diet for almost a year.  We of course have our good days and bad days in making him stick to it, but regardless of that he has done so well and has not had to go to hospital since he has been on the diet, and for a child who has been hospitalized multiple times every year since he was 6 months old this is quite an achievement.

What made you decide to try diet?

I love my children and as a mother I could not continue to blindly pump drugs into Matt every morning, night and during the day, it made me feel sick and I couldn't see that it was actually making an awful lot of difference to his asthma, in fact it seemed to be getting worse. Just before we started the elimination diet Ventolin seemed to have no effect on Matt at all, only prednisolone seemed to alleviate an attack, which as you can imagine frightened the hell out of me. The doctors all said the same things, either give it to him or he could die.

How quickly did the diet kick in?

Amazingly, within a few days. We could not believe how quickly. I remember Matt had been 'trying' to play basketball, we would give him two puffs of ventolin before the game as the doctor had instructed and then the poor thing would try in vain to run up and down the court, but he really didn't want to play and used to ask to be 'subbed' off.The first week of the diet he had a game on the Thursday, so rather than pre-puff, I asked if he needed a puff - he said no - and went out on the court.I sat there nervously with his puffer in my hand at the ready, and off he went - running up and down the court, he was only subbed off when the coach did the normal process of taking equal turns between the players. He came off at the end with a bright red face, sweaty head and a big smile - and a noticeably absent wheeze. I could not believe it - that was when I knew this was going to work.

Which food chemicals affect Matt's asthma (e.g. sulphites, salicylates, benzoates, colours?)

Artificial red colours seem to have the most dramatic effect. Salicylates definitely, although salicylates by themselves e.g. apples, tend to creep up on him, taking a few days and even then the reaction seems milder than artificial colours. Sulphites definitely. Amines do not seem to present the same level of problem, but I am extremely cautious with them also.Have you done challenges or did you work it out from mistakes?

I am very loathe to do challenges, we tend to learn from his or my mistakes. The results are so obvious, usually that night he and I are up all night with his terrible croupy cough, he becomes unreasonable, eczema flairs up, his feet crack and bleed.There is no mistaking it when it happens, and I can't bring myself to deliberately create the situation.The only real trial I have done is with fruit because it is what he misses the most, golden delicious apples for three days, third day severe asthma attack, cracked feet - lasted 3 days.Bananas  no apparent problem.Half a mango - within hours agitated, croupy cough leading to an attack that night, but gone within a couple of days. 

What happens when he breaks his diet?

It depends on what he eats. Sometimes it kind of creeps up on me that he seems to be a bit wheezy, but nothing dramatic happens, which concerns me because I think maybe the 'build up factor' is occurring, so I put him back on the elimination diet and start again (we are doing this at the moment, because I have found out that he has been 'sharing' lunch at school and also put in a tuck order without me knowing!) I have reviewed his lunch box and was able to buy your cookbook, so now he is getting enough interesting things and variety so he feels that he is not missing out!

Sometimes it is so painfully obvious that he has eaten something, he just comes home and starts coughing. This happened before Christmas with those rotten candy canes that all the kids give at school - Christmas is a nightmare for me and Matt, he has to say no to things he loves and I have to be the 'lolly detective' to make sure he survives! He came home one day from school and was clearly having an attack, in addition to all of the horrible behavioural issues that accompany such food, I just said point blank - what on earth have you had at school? - and of course it had been a candy cane. School presents the biggest challenge on this diet.

What kinds of foods is he most likely to eat when he breaks his diet?

It depends, lollies, chocolates - things he sees all of the other kids having that he can't. When he did his 'secret' tuck order it was a ham and cheese sandwich and a strawberry milk. Funnily enough most people would think this was quite a 'healthy' lunch!! That night it meant a serious asthma attack for him, and all types of horrible behavior!

Has he been able to reduce medication?

He hasn’t needed steroids since he started the diet 12 months ago and over summer he went for three months without any Ventolin. He really only has it now if he is having an attack usually because we have made a mistake or he has had something at school that he shouldn't have.  After the ham sandwich and strawberry milk incident he had one dose of two puffs per night for a week, prior to that it had probably been about two months since he had a puff.

How about exercise?

Matt is very active, he plays basketball and football and swims four nights a week in a squad team.

Has Matt's doctor been supportive of diet?

No, I gave up discussing much of anything with the gp/specialist some time ago.Their answer has always been puff at all costs, nothing else will work, his asthma is totally unrelated to diet.

Do you have an asthma plan drawn up with your doctor for Matt?

We do have for school, but it is pretty standard stuff and says he should be puffed twice before any physical activity. He no longer needs and because of his age now the school more or less leave it up to him unless there was an emergency.

Do you measure peak flow readings? if so, do you have any examples of  what certain foods do to Matt' readings?

No, we have never measured peak flow - the doctor has never suggested it.

Did you join the failsafeasthma group and if so has it been helpful?

I just joined - so will let you know.

Did you see a dietitian about the diet?

I met with the dietician you recommended - she was fantastic, gave me some really good tips and excellent guidance.  Other than a couple of lunch box modifications she thought we were very much on the right track.

Any other comments?


I would love to see an action group in schools - school lunch is the hardest part of this diet. I would love to be able to refer the school to some committee etc that are educating the educators.

Also, I need to mention something else in relation to Matt's school work. Mid last year Matt's teacher told us that she thought he would have to repeat the year, due to his inability to focus and complete work, also his reading and writing were below standard for his age. She couldn't understand what the problem was, as he is obviously an intelligent boy, however nothing she did was working. We started the diet in the school holidays a few weeks later. We had a parent teacher interview at the end of the following term.The teacher told us that she couldn't believe the difference in Matt, and wanted to know what we had done as the change was quite profound. He was now able to focus and when he couldn't he actually removed himself and asked her if he could go to a quiet place to concentrate!! His reading, writing, completion of tasks, virtually everything had improved out of sight. So much so that she said there was absolutely no need to
hold him back a year.

I can tell if Matt or I have made a mistake - as much by his behaviour as his coughing.

Once again THANK YOU so much for continuing this wonderful work - it has changed our lives.

Over the course of a couple of weeks in September 2006, our daughter became progressively more lethargic, withdrawn and emotionally fragile (cried easily for no particular reason). She was getting upset quickly in a teary way and blowing things out of proportion. After the holidays her teacher commented she thought it was unusual for Lucy to be so lethargic, quiet, teary, keeping to herself and not playing, not interacting.  As an example, the teacher had asked all the kids to pack away the books. Normally Lucy would do this fairly promptly but she just sat there mesmerised in her own little world and didn't appear to hear the teacher. The teacher came over to her after all the other kids had left the area of the classroom and said gently to her ‘Lucy it's time to pack away now please.’ Lucy just dissolved into tears and it took a while for her to regain composure. The teacher said it was very out of the ordinary for Lucy who was usually full of energy, vibrant, bubbly, friendly and always very, very happy.

That night, after ruling out illness, and with much careful consideration and dissection of her diet and environment, I discovered from Sue's website that Kraft had introduced preservatives (sorbic acid, 200) in the tubs of Philadelphia Cream Cheese tubs. Lucy eats this on a daily basis on her sandwiches and sometimes as a dip as she had done for years. I rang Kraft and they informed me that they had only just started putting this ingredient in a couple of months earlier. After checking old containers I figured that she had consumed at least two tubs. The change in her demeanour had been gradual but still clearly noticeable by us as well as her teachers as this was not the Lucy we knew. Once we switched to the preservative free Philly blocks, she became ‘better’ within a few days and had returned to her usual energetic, happy, amenable self within a week. I now check labels every time, even if it is something I have bought many times before.

 

We put my 6-year-old grandson on the failsafe diet for ADHD and his 4-year-old brother (who has had 2 serious hospital admissions for asthma) has seen his asthma disappear!! Another off spin from the diet my headaches which I blamed on shift work and lack of sleep have disappeared except two times when we didn't have the boys and bought Chinese and went out for Thai both times I woke through the night with a raging headache.  And my husband who has been short tempered through our 28 years of marriage, has had a change in temperament/ behaviour, for the better. - Kathy by email.

•     I love your books and I love this diet, I have a completely different daughter.

•     My husband and I heard you talk when you came to Albury/Wodonga. Thank you, you have changed our lives! We have cut out all colours, preservatives and additives from their diet and it's like having different (normal) children.

•     We have just been lucky enough to go to Vanuatu for a week, self-catering, where we bought fresh food at the market every day and guess what? We all felt SO good. What are we doing to ourselves in the so called developed world?

•     I love the failsafe cookbook! - it has made cooking so much easier for me and the whole family enjoys what I am cooking.

•     Thank you for all the work you have done and continue to do, I teach in one of the largest primary schools in the state and over time I really hope that I can get the school to undertake some of your methods.

•     I enjoyed your seminar at Frankston in April - I could have stayed there all night listening to you.

•     My autistic son has gone without Gatorade, PowerAde and coloured drinks for just three days, and already his behaviour is improving - such a small thing to do for such a great result.

•     For the last two months I’ve had no additives, no kiwi fruit, no oranges, no strawberries, no tomatoes, no juice and have had 7 weeks without a mouth ulcer. Usually I only go about 2 weeks pain free before the skin on the roof of my mouth peels, the tip of my tongue becomes extremely sore together with a badly infected ulcer anywhere in the mouth.

•     My daughter was a very sick and unhappy child five years ago and after visiting RPA, eliminating and using your cookbook like a bible we have a happy and well child (she cannot tolerate preservatives and is extremely salicylate sensitive). I must admit five years ago when we started all of this if anybody had ever said that strawberries, broccoli and bottled tomato sauce could send my three children into crazed animals I would have not believed them. Bring on the pears!

•     My grandchildren's asthma is now much better. I managed to convince one of my daughters of the connection between the 'healthy' apricot bars she was feeding him and her son's attacks (despite a very dubious husband and other grandma!) and my granddaughter's behaviour and asthma has improved after removal from her diet of the highly coloured treats which she was so fond.

•     I have had my daughter on an elimination diet for 12 months now - the behavioural changes were literally overnight once I found your website. I want the DVD for her school because they still serve trash in the tuckshop and the teachers don't believe me when I say they wouldn't have anywhere near the problems they are having if they looked at what the kids were eating!- Sheryle by email.

•     We have just spent 3 weeks on the elimination diet, using " Fed Up with ADHD" and the "Failsafe Cookbook".  We are amazed at the positive change in all of us, (a hyperactive, asthmatic, eczema-stricken three- year-old boy; a 40 year old dad who has suffered from chronic asthma all his life; and a 34-year-old mum who thought she felt pretty healthy...until the last three weeks, where I have felt better than ever - Julie, email.

Earlier this year, we were giving Patrick a gluten-free bread mix which states on the packet, “preservative free”. We had reason to trust this product because it was listed on the ‘safe shopping guide’ issued by the Australian Royal Prince Alfred Hospital, supplied by our Dietitian. Once I increased the dose of this product for our son, i.e. pancakes for breakfast, French toast for lunch and a wrap for after school, within a day he displayed explosive behaviour and was unreasonable. 

We rang our Paediatrician who advised us to cut down on his supplements. After a week there was no change, even at school our son’s teacher was noticing a big difference in behaviour and learning. The Paediatrician advised a blood test, another week passed for the results which in turn came back within normal range. Only then did we suspect foods. The Food Intolerance Network always advises to check products containing fats or oils for hidden synthetic antioxidants. I rang Coles to double check if there were any changes in their sunflower oil that we use, and they advised there were none. I then rang the bread mix company and asked if there were any synthetic antioxidants in their product in question, he said he was pretty sure there wasn’t. We insisted that he double check because we were at wit’s end and we were ready to have our son’s head scanned because he was so aggressive and erratic in his behaviour. The man rang back in shock and was very apologetic, because the oil which was supposed to be ‘pure canola oil’ as stated on the ingredients list, has in fact got synthetic antioxidant 319 in it.

We were relieved but angry, our son was put through four weeks of hell, not to mention us as well, because he could not control what he was doing, and it took well over a week for the affects to wear off. We had our good boy back and he even said, “Mummy please don’t give me bad food any more”!

I have stumbled upon your latest newsletter in the search for what might be wrong with my daughter and found the brief note about IBS and salicylates. My daughter (15) has had gut problems for over a year starting with what we assumed was a gastro bug. A biopsy confirmed Coeliac disease however, a gluten-free diet did not clear up her symptoms of stomach pain, constipation and bloat and she lost a lot of weight and ended up in hospital for re-feeding (and no she is not anorexic!). She was also put on pain medication which doesn't seem to help. We are about to start eliminating salicylates from her diet under the guidance of a dietician, and will keep you posted on the result. She has always loved fruit and vegetables! – by email.

In reply to the Reader’s Story [537] about salicylate intolerance misdiagnosed as Irritable Bowel Syndrome, in June 2004 I was referred to a gastroenterologist in with symptoms of IBS to check for coeliac disease. I had had IBS symptoms for 15 years. I also had a SIGA  (immunoglobulin A) deficiency which made diagnosis of coeliac from blood tests more difficult; and lots of other symptoms not connected with digestive tract including fatigue, recurrent sinusitis, joint/muscle pain, skin rashes and urticaria. I had a gastroscopy and biopsy and two pathologists reports were both positive for Coeliac disease, although the gastroenterologist was not sure that the tissue changes were completely typical of coeliac. I was diagnosed with coeliac disease and followed a very strict gluten-free diet for 9 months with no improvement in my symptoms and was eventually given a blood test checking for gene markers HLA-DQ2/8. The results were negative and made coeliac a very very unlikely diagnosis.

In May 2005 the gastroenterologist finally referred me to a dietician to do the RPAH elimination diet and we discovered that removing salicylates and preservatives from my diet improved most of my symptoms. He must have been aware of the possibility that IBS symptoms could be related to preservatives and other food chemicals. The help that I got from the dietician put me on the right track but the Food Intolerance Network website, Sue Dengate’s books and the RPAH cookbook were much more helpful in providing detailed information about foods and food chemicals and managing the diet. The dietician did not refer me to those resources but I found out by doing my own homework and searching on the internet – by email.

I have been aware of the RPAH diet for over 10 years and largely stuck to it during that time to help with symptoms of MS (multiple sclerosis). I have also suffered bowel issues for many years, predominately constipation but sometimes diarrhoea. My symptoms primarily include bloating, constipation and terrible pain. Initially, I thought it was the cause of my MS (bowel and bladder disturbance can be a problem) so just figured I had to live with it. When my lower bowel pain became quite severe - particularly after eating wheat and despite being failsafe - I decided to consult my GP again. She referred me to a gastroenterologist who preceded to do a colonoscopy to see if some inflammatory bowel disease was present and an endoscopy so she could take a biopsy and take a definite diagnosis on whether I had Coeliac disease or not.

Fortunately, all my results came back clear and the gastro told me that after examination she concluded that I had a 'nice big healthy bowel' (I guess that's a compliment to the gastro fraternity!) As she had eliminated all other possible diseases, she further concluded that I simply had IBS which has no real treatment. She said that dietary modification could help however, and referred me to a bowel dietician.

The dietician explained to me about fructans (a natural sugar) found in the onion family, wheat, chicory and asparagus. Having been failsafe, I knew about the amine and salicylate intolerance I have but thought that eliminating fructans could help considering I found leeks, spring onions and wheat appeared to affect me despite them all being failsafe and despite my not having Coeliacs. This all really helped so now I have refined my diet again and have eliminated all the trigger food chemicals (MSG, Salicylates, Amines) as well as fructans (leeks, spring onions, wheat, asparagus). This has helped my IBS greatly. I am now just trying to give up percolated coffee every morning as that appears to trigger IBS symptoms. This fructans information may just be another piece of the puzzle for some people who suffer IBS. – by email.

More Articles ...

  1. [551] IBS: Some failsafe tips but not enough (May 2007)
  2. [552] A psychologist comments on story [539] (May 2007)
  3. [553] Food additives in the Middle East (May 2007)
  4. [554] All three children got asthma at the same time (May 2007)
  5. [555] Vanillin is an absolute avoid-at-all-costs additive (May 2007)
  6. [556] An adult food reaction (May 2007)
  7. [557] “Giving up the victim role”: a story of salicylate intolerance (May 2007)
  8. [558] Muscle spasms (May 2007)
  9. [559] ‘Ultra-healthy’ diet led to asthma and debilitating health issues (May 2007)
  10. [560] Reaction to aspirin (May 2007)
  11. [561] Nurofen mistake (May 2007)
  12. [562] 160b: Yellow addiction (May 2007)
  13. [563] IBS: colostomy for 11-month-old baby (May 2007) SHARED COURAGE AWARD STORY FOR MAY 2007 NEWSLETTER
  14. [564] 635: “An attack of 635”: anxiety, racing heart, headaches, rash (May 2007) SHARED COURAGE AWARD STORY FOR MAY 2007 NEWSLETTER
  15. [565] One-liners (May 2007)
  16. [547] Patchy baldness and the gluten connection – reader’s stories (April 2007)
  17. [524] Open neglect by medical establishment (January 2007) COURAGE AWARD STORY FOR JANUARY 2007 NEWSLETTER
  18. [525] “a second lease on life” (January 2007)
  19. [526] Diet has been a lifesaver (January 2007)
  20. [527] Maya’s story (January 2007)
  21. [528] “When we started the diet to help our daughter, we didn't realise it would help our son’s asthma too …” (January 2007)
  22. [529] 635: Hives from 635 and swimming (January 2007)
  23. [530] Salicylates are our nemesis (January 2007)
  24. [531] ODD reaction to spring flowers and Floriade (January 2007)
  25. [532] Soy and depression 3 - unexplained “fevers” and hallucinations (January 2007)