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.

I have just read the IBS misdiagnosis story ([537], Jan 2007). After countless examinations, a colonoscopy, a couple of (very nice) women's physios, being told by a "bum specialist/surgeon" to lose weight and get fit (I lost 13kg, got fit), I still have my IBS. The basic solution I was offered by a specialist physio was to reduce stress, avoid cream, butter and rich, spicy food - a couple of failsafe tips there, but not enough. Yet another '"bum specialist/surgeon", not gastroenterologist, suggested a good dose of Epsom Salts to clear any backlog (not a regular occurrence, just when needed) and glycerine suppositories to relieve constipation. I and my kids have some other signs of food intolerance. Looks like I'm in for a rough time until I adopt the full failsafe regime and find out what our intolerances are – by email.

I'm just reading the latest FIN newsletter (#51) and came across Reader's Story [539] “The school counsellor … went on to tell me that it is coincidence that withdrawing a food substance or chemical would have a positive effect on our daughter. She then proceeded to tell me that Lily probably has Aspergers and that the paediatrician probably didn't want to tell me that. I am feeling so enraged. She hasn't even met Lily.”

As a Psychologist who used to work in education, I am so disappointed for this family. There seem to be a number of responses that I would hope were the exception rather than the rule of a counsellor's professional practice. Diagnosis should never be made without interaction with the person in-question. Theory and empirical-based study are important, however that "importance" should be balanced with a few other thoughts - 1)  the causes/criteria for illness are frequently "refined" over years despite each change being based on the alleged omniscience of empirical data, and 2) life on earth has never been 100% contained and explained by research based theory - there are always exceptions, and to dismiss the possibility (particularly when the individual has possibly never done a literature search on the topic themself) is to choose ignorance. Carl Jung made a profound statement on this - "Learn your theories as well as you can, but put them aside when you touch the miracle of a living soul." I know the difficulties I face getting parents and other professionals to even consider diet as a factor in their children's behaviour and/or learning challenges. I want to commend and encourage these parents for their intentional pursuit of their child's wellbeing. Perhaps a respectful suggestion to visit (or provision of) the extraordinary list of research links on the FIN website might open the eyes and mind of this counsellor. In the end, it is still our responsibility as parents to make decisions (albeit informed decisions) for our children - not doctors, not teachers and not counsellors. Well done for standing firm. – Psychologist, by email (Note that we now have a number of failsafe-sympathetic psychologists on our list of health professionals – you can obtain the list by emailing Howard: This email address is being protected from spambots. You need JavaScript enabled to view it.)

I am a New Zealander living in the Middle East as the climate and lack of huge amounts of trees, flowers and grasses makes my quality of life much improved. Unfortunately, foreigners are arriving and corrupting the food practices here by introducing all the things we are trying to have removed in processed food, as well as bringing in all the junk food and fast food chains. Currently the food producing companies coming from Europe have introduced synthetic antioxidants into all the types of oil, including safflower and sunflower, which used to be available in abundance unpolluted. – by email.

My daughter, now in her late 20s, first got asthma in her early teens. Recently she told me the story of her very first asthma attack. She was away from home camping with friends, when they treated all the children to a soft-serve ice-cream. Within a short time she was having troubles breathing. The other adults identified that she was having an asthma attack, severe enough that they were contemplating taking her to hospital. Prior to having this first attack, my daughter did not have many additives in her diet. I just didn’t let my children have lollies, cordials, snack foods, etc as I didn’t think they were healthy, and I did a lot of home cooking. Soft-serve ice-cream was just not something that she had ever been given. Over the years, she noticed for herself that if she had soft-serve ice-cream, or drinks and lollies with a certain yellow colour in it, that this would quickly trigger an asthma attack, and that if she didn’t consume these things that the number of her asthma attacks were less.

With hindsight (isn't it a wonderful thing) all of my children have got asthma as a result of additives. It was only watching your "Fed Up" DVD that let us work it out. My daughter already knew that certain ice-creams and 102 gave her asthma, but we hadn't realised that other additives, that don't give such an immediate effect, could also be involved. Asthma is in their father's family and their grandmother gets bad asthma, so I was expecting that at least one of my children would get asthma as well. When none of my children had any symptoms of asthma I was relieved. That was, until all three of them got asthma about the same time. My daughter was aged about 13 and the two boys were about 10 and 8. It was very confusing at the time as why all three would suddenly get asthma when none of them had had any symptoms previously. The only thing that changed about that time was that all three of them were getting access through their friends to types of foods that I had never allowed them to have before, like processed snacks that I have now learned are high in additives. At the same time as this, realising that I was not going to be able to stop them from eating whatever they wanted to when they weren't at home, and because of other family pressures, our diet was changed at home so that the snacks, foods and drinks that I now know are full of additives began to be consumed at home. The change was therefore from a largely additive-free diet to the average Australian additive-packed diet. So three asthma-free children changed to three asthma-prone children who all needed to be put onto medication. If only I had known then what I know now.  – by email

Our oldest son reacts to Vanillin.  His reactions are behavioural. He stops listening or following instruction and becomes disagreeable. We also see really distinct rough behaviour towards his younger brother. We usually notice a reaction the next day and it lasts for quite a while compared to his other reactions. After Marshmallows it lasted a week!  It also doesn't seem to take a very high dose to start the reactions. For us it is an absolute avoid-at-all-costs additive, we never compromise on this as we do with other things. It is simply not worth it.

I've heard so much conflicting info about this additive, so many people seem to think it isn't a bad additive. Sadly, I must disagree – Ruth, by email.

I'm 51-years-old. Tonight I went to Subway and purchased a Chicken Bacon Ranch Wrap. I hadn't eaten a low-carb tortilla in sometime and had forgotten the affect one had on my stomach. It wasn't until I finished eating that I, unfortunately, remembered. Every time I eat one, I have severe spasms in my stomach, with some nausea and gas. Tonight, it was so severe it felt as though a knife was cutting into me. I see your web site focuses on, mostly, children. I just want someone to be aware to the fact adults can have the same intolerances as children. – by email [see the Subway ingredients list on http://subway.com/subwayroot/MenuNutrition/Nutrition/frmUSIngredients.aspx).

I have been so inspired by the stories of others that I felt the desire to share my "salicylate intolerance discovery" story. I had been sick for many years and when I think about it probably since birth. Back in those days not many topical products had herbals in them so my salicylate intake was confined to food and aspirin products. And my symptoms were mainly digestive, brain fog, and numerous bouts with asthma. When I grew up and flew the coop things became increasingly worse. For years I have been in and out of the doctor’s office (I am in the military health care system) and all tests ran negative, of course.  And so the multiple diagnoses began - arthritis, mental illness, fibromyalgia and so on.  A few years ago one of my co-workers disclosed to me that she had fibro and referred me to the guai-support website.  I knew that it would be hard to convince the military doctors to put me on the Guaifenesin treatment so I decided that I would pay for it out of my pocket if it would give me back my quality of life.

On any given day I was experiencing 10-15 symptoms daily and was hardly functioning - it was very, very difficult. There were days I could not walk and my husband had to carry me to the bathroom. Just lying in bed was painful - the good days were marked with a raging fever, flu-like feelings, and a ringing headache. I did get to a point where I got used to the pain and learned to live with it - I really had no other choice - live with it or kill myself.

For some reason I knew deep inside that I didn't have fibro, it didn't seem right. But I reasoned what do I have to lose and on a long holiday weekend I set upon the closet to remove all topical sal-full products from my life. Within a week I felt incredible. When I talked to my co-worker she said maybe I didn't have fibro at all but a sensitivity to salicylates I was quite stunned. A few weeks had passed and I felt better and better but I still had some digestive tract symptoms so I went back to the guai-support site and re-read the information and one line jumped out at me - that you did not have to worry about salicylate in food as the body would break it down and it would not interfere with the guaifenesin. That led to another Google search and to other sites. I never had to beg the doctors to put me on the guaifenesin protocol as removing sal-full products and food from my life relieved all of my symptoms (listed below).

But there was still a period of "struggle" for me.  I am a gardener by hobby and trade so I had to learn to cover up my body and wear gloves to eliminate contacting plant salicylates. I also have been growing and eating my own food for years. That was the hardest part and I went through the denial stage for while - abusing my body with foods I knew I could not tolerate. How do you grow vine ripened tomatoes and perfumy exotic melons and not eat them?!  The mind would say - oh come on a few bites won't matter - but it really did matter!  So I finally decided to quit seeing my "problem" through the eyes of a victim (poor me, why me? why am I being punished?) and changed my point of view to a position of personal power. What a huge difference. So I can't eat some food and wash my hair in botanical goodness - so what. When I totally eliminated the foods/products that caused me trouble I felt so great that I could not believe that I could deal with
that much pain. And I never want to feel that pain ever again!

The nice thing about giving up the victim role is I could reclaim that negative energy and put it towards something else - last year I bought myself a motorcycle and began riding - something I had been wanting to do for years (I rode trail bikes as a kid and loved it) but couldn't do when I was ill. Regaining my quality of life and being able to work, exercise and play again (and I am quite sure my husband is happy that sex no longer hurts) is worth giving up "bad" foods.

For all you new to this I know it can seem just miserable - take it one day at a time, be gentle and forgiving with yourself, and know that life can be rewarding and fun without some pleasures of food, drink, and beauty products. Wishing you good health -  by email (with permission from another group)

Mind, emotion and behaviour symptoms: accident prone • anxiety • anger for no apparent reason • blankness • brain fogging • clumsiness • confusion • depression • detached/unreal feeling • difficulty waking up/getting out of bed (due to lack of sleep and aching muscles) • disorientation • dyslexia • hearing without comprehension • inability to think clearly • indifference • irritability • memory loss • mental exhaustion • mood swings • panic attacks • poor concentration &memory reading • restlessness • slow to process information • slurred speech • suicidal feelings

Physical symptoms: abdominal pains (thought I might have IBS) • acne • asthma & wheezing, tightness of chest • athlete's foot • bad breath • bloating (lost three dress sizes when I gave up the sals) • blurred vision • breast pain • constipation • crawling/burning sensation on skin • diarrhea • insomnia • itching • joint pain, stiffness & swelling • fatigue & lethargy (thought I might have CFS) • menstrual problems, pre-menstrual pain • metallic taste • migraines • mouth ulcers • muscles - aching, weakness, tremors & cramps nausea palpitations & racing pulse • poor balance • rashes • difficulty in swallowing • dizziness • eczema • excessive thirst • feeling drained • flushes - both hot & cold • frequent need to urinate • headaches • restless legs • sensitivity to light & noise • sleep disturbances • sore, itching, puffy, burning eyes, stiff neck • temperature fluctuations • ringing ears • weight problems.

I am a 55-year-old woman who recently worked out for myself that I have a muscle spasms as a strong reaction to 220 (sulphites) and minor reactions to others which I haven't identified yet. The muscle spasms are usually in the limbs and are worst when I sleep. I am a very fit and active person, so when I finally sit in front of the TV after tea and relax, this is when I feel the spasms. When mild it is usually any one muscle at a time in my legs and usually every 30 seconds. The affected muscle tightens or twitches and can occasionally jolt my leg or finger etc. When I have a worst reaction during the night, again it is like a tightening of, possibly, a muscle in my chest, or hip, or shoulder, head etc. When it is in the chest, some times it actually knocks the breath out of me as I awake with a jolt. Have you ever had the electrical impulses on your body when you are at the physiotherapist and a muscle tightens - that is how I feel. Sometimes of a night I feel as if I have a "motor" running in my chest or sometimes my head (sounds crazy doesn't it!) I can also quite often get a tingling (or motor sensation) feeling down my legs.

I went to four doctors last year and not one knew what was wrong, with one referring me to a neurologist. I become hyperactive in the evening – full of energy when everyone else is wanting to go to sleep - and have constant insomnia. When I am at my worst my muscle spasms (during sleep) wake me every few minutes and I experience hallucinations or bad dreams. Strong sleeping tablets don't eliminate these muscle spasms. It wasn't until I realised the 220 preservatives were in the "healthy" foods: dried apricots, sultanas, most yoghurts - that I was able to get my health back into order. It took me nearly a year to work out what was wrong with me.  Since watching my diet I am sleeping so well it is unbelievable; I haven't slept like this for possibly 7 years and only have mild muscle spasms resulting in bad sleeps occasionally when I'm not aware of the preservative in the food. I guess I am still finding it hard to check everything before eating!!

The last 12 months have been very scary for me when I didn't know what was wrong - I feel so strongly for our children who also must be suffering and unable to communicate how their body feels. - by email, Victoria.

My mother and I have known for years that we are allergic to aspirin. We both react with ringing in the ears, nausea, vertigo, lethargy, and I even lost consciousness once.  I avoid salicylates in cosmetics and toiletries at all costs, but my health has steadily declined (I am 24). My mother and I both have had doctors mystified for years with strange and debilitating health issues. They told my mother oh you have lupus, no you don't, yes you do, no ... so on and so on. Now they have
decided that we both have fibromyalgia. None of my doctors have ever mentioned that salicylates are in foods. After coming across this information I realised that almost every diet change recommended to me by the doctors has caused my salicylate intake to be astronomical. It's no wonder I've been in and out of emergency rooms.

Everyone made fun of me calling me a "health nut" because of the supposedly ultra-healthy diet I was on. I was trying to follow the USDA guidelines and eating lots of fruits and vegetables - especially citrus, broccoli, and spinach. The heart healthy recommendations include lots of processed tomato products and using as many different herbs as possible (to give flavor instead of salt). I also was trying to eat as many "naturally sweetened" things as possible. I was eating a lot of fresh oat granola, but it was loaded with honey, almonds, and pretty much anything that comes up high in the sals. I also was using olive oil for cooking, salad dressing, and with herbs instead of butter on bread.

It's no wonder that I was getting worse. I was having so many migraines that I only had about two days a month that I could function without excruciating pain in my head, I had chronic tendonitis, chronic fatigue, if I ever did get to sleep I felt more tired when I woke up than before I slept and I was still gaining weight. Now that I am on the right track I have only had two migraines in two months, and I have only had a tendon problem one day. I was diagnosed with adult onset asthma and was using an inhaler every day and now I only have to use it when I get exposed to salicylates. My mother and I have both been improving so drastically that everyone is asking us what is going on. – from the USA

Our 13-year-old daughter suffers extreme sensitivity to salicylates and our 12-year-old son suffers mildly (or so I thought). During Easter we had relatives visit and I had gone for a walk with the younger children. My son had a growing headache when I left, and our care for that is a warm carob and lying down in a quiet room. While I was gone he asked if his aunty had anything for a headache. (Incredibly irresponsibly!) she gave him an aspirin. By the time I returned from my half hour walk he had developed severe swelling of the eyes, upper lip, ear lobes and generally puffiness of his face; also urticaria over his whole body centred on his neck and under his jaw line. At first I didn't know about the aspirin. After much questioning, research and deliberation I came to the conclusion that it could only have been the aspirin. He became very agitated, very frightened, and very unlike his usual self. It took over 48 hours for all the symptoms to disappear. Needless to say, my children have never been given aspirin before, and it will never be allowed in my house again. – by email, see Salicylates factsheet for the aspirin-salicylate connection.

Thank you for helping us to get back the children we were meant to have. We have been failsafeing for about 2 1/2 months mainly for our 4 year old daughter who was defiant, argumentative, oppositional, angry, sometimes violent, sometimes hyperactive, deliberately annoying, and would be awake for 2 - 4 hours after bedtime before falling asleep. The contradiction being that she could also be charming, loving, insightful, enjoyable, happy, playful, caring, enjoy an activity (craft, colouring, building etc) for extended times, clever, calm and inquisitive.

About two years ago we learned about colours and preservatives (from "The Chemical Maze") and pretty much took them out - apart from occasional treats – with good results and we had no idea there was so much more to the food chemical story. I never would have considered fruit etc, I just thought I somehow had to be doing a bad job at disciplining my child and that must be why she is still the way she is. While reading Fed up with ADHD my hopes were ignited for a better life
for all of us as I worked up the courage to go failsafe and give this a try. It was a daunting thought with a new baby as well but we really had no choice as far as I could see so we started! Amongst the initial flurry of the first few weeks the results were incredible as we saw emerge this delightful child and hardly any of the pre-diet behaviour. I now feel it is our way of life and I am learning to manage the work load of the constant cooking, baking and planning around food. My once skeptical husband is a beautiful support and really helps out with the kids and the washing so I can keep up with the food etc. We have seen some remarkable changes but there are still some things that concern me though.

After 3 weeks on elimination, our first challenge was salicylates and we had a severe day 3 or 4 reaction, stopped on day 5 and I think we were just starting to come good after about 6 days from stopping when we had a friend's birthday party the next day. We had been so strict, everything to the letter and the girls’ attitudes toward the diet was so amazing that we thought we'd have a day off and give them a "treat". The party food wasn't as bad as it could've been. A lot of home cooking. But they did have some lollies, fruit and chocolate. The girls couldn’t believe it after about 5 weeks on the diet!  Anyway, behaviour started that evening and it was pretty foul for about three weeks. We also made the mistake of giving her Nurofen for a sore throat in the week following the party but apart from that we were back to 100% failsafe the day after the party.  So after about 3 weeks of reaction type behaviour she started to become progressively better but still with some D.F.Asleep (down to 1-2 hours) and still to many times of defiance and aggression etc. amongst the good behaviour. We are now 4.5 weeks after the party and 5.5 weeks after the end of our salicylate challenge and I feel like we are not yet back to how it was in the first three weeks. – from a country failsafer  [this family is now doing well]. Their problems included daily Sakata rice crackers, accidental exposure to lawn fertiliser, and Nurofen. Although Nurofen doesn't contain salicylates, most salicylate sensitive people have cross sensitivity to it and other non-steroidal anti-inflammatory drugs such as naproxn and diclofenac. You can regard one dose of aspirin or Nurofen as the equivalent of a week’s salicylate food challenge, ref: Jenkins C and others, Systematic review of prevalence of aspirin induced asthma and its implications for clinical practice, BMJ. 2004;328(7437):434.For more possible reasons for diet not working, see Checklist of Common Mistakes]

My son was restless from the day he was born. His paediatrician told me to not feed him dairy or wheat and suggested I feed him meat and vegetables and fruit for the first year of his life. When he was one, I decided to broaden his diet a bit and started feeding him vanilla ice cream. I didn’t understand at the time, but he started throwing the most awful tantrums and head banging. He became obsessed with the colour yellow. He only wanted to wear yellow clothes, draw with yellow pencils and chose toys that were yellow. My friends constantly commented on his yellow addiction. I used to feed him corn and cheese omelettes for dinner with vanilla ice cream and banana for dessert. I’d mix the banana in thoroughly so the ice cream looked more yellow. It wasn’t until 18 months later that I started learning about nasty food chemicals, and learned that annatto 160b natural yellow colouring was causing a lot of problems. When we got together with other mothers, he’d go straight for yellow food and always want yellow drinks. It was a bit of a joke really. He’d choose yellow lollies over other colours and when I asked him what colour he wanted his room painted, he of course said Yellow. I stopped allowing him food with 160b in it, but still let him have it when he went out. My friends thought I was over the top with food.

One day after meeting with my friends, and my son eating their yellow food, he went off the rails. I managed to get him into the car, (which is hard when they stiffen their bodies like a board) and drove him to my friend’s house. He was screaming in his car seat, Let me out, let me out and was struggling like crazy in his seat. We drove up her driveway and my friend said Oh my god, what’s happened to Liam?  I explained this is what happens when he eats bad food chemicals. It was only after this that she actually believed me. I then became strict and totally eliminated it from his diet. His headbanging stopped and his outrageous tantrums stopped also. I then realised that his obsession with yellow was caused from an addiction to yellow food. When I eliminated it from his diet, he began to choose other colours to wear. He’d choose other coloured lunchboxes, drink bottles and hats. I’ve never heard any other parent mention the colour phenomenon, but I still believe it was connected to his addiction to 160b. – Helen, NSW (see similar stories [880] and [983])

In reply to the Reader’s Story [537] in the last newsletter about salicylate intolerance misdiagnosed as Irritable Bowel Syndrome, our story started 5 years ago. We have fraternal twins who were born at 37 weeks and seemingly healthy at the time, no problems within the pregnancy was diagnosed in regular scans or when they were born. My first clue, looking back, that twin 2 may not be all right was her failure to use her bowel until day 3. I remember her gagging on day 1 and being told by the nurse that this was common in newborns until they had their first motion.

We then continued on a very long path during her first twenty-one months of life with an unsettled baby. Both twins were breast feed however twin 2 was always unsettled. At 6 months we decided to introduce solids - starting out with farex and progressing to adding small amounts of pureed fruits, ie pear, apple, etc 'all the safe ones'. To our shock twin 2 started to get the most horrible nappy rash with excoriation and bleeding. We couldn't understand it and were regular with her
nappy changes, we also noticed that she would strain whenever she tried to use her bowel. We went to see her Paediatrician who prescribed hydrozole cream and amoxil drops, suggested we try some small amounts of vegetables and sent us on our way.

Four months had passed and we were increasingly worried for our daughter who still suffered from the terrible nappy rash and constant visible straining when using her bowel (most unusual in a baby) and was generally unsettled. By now we had tried cows' formula (which resulted in vomiting) and soy formula (which resulted in diarrhea) and we had also noticed that with fruits the problem was worse. Things didn't improve and after many calls and visits to our GP and Paediatrician we decided to see another Paediatrician.

The next Paediatrician suggested we trial a prescribed formula for 2 weeks of 'Alfare'. This resulted in violent vomiting and trip back to him whereby an ultrasound was performed and we were informed that she in fact had chronic constipation, with a large mass in her colon. Our daughter was now 11 months-old and had to have immediate surgery to remove the mass which resulted in her having a colostomy for 3 months.

We were assured by the Paediatric Surgeon that in fact her problems were not food related and that she was born with an 'anorectal anomaly' and that all would be ok once the colostomy was reversed. To our disappointment as soon as the colostomy was reversed we went straight back to the problems of severe nappy rash and excoriation on her full diet. Our daughter at 15 months was then seen by a Professor at the hospital who diagnosed disaccharidase deficiency (sucrose
intolerance) to be the cause of the excoriation and unsettled behaviour; not the case.

Somehow eventually after breaking down many times and a visit again to our GPs rooms in desperation we were finally sent with a referral to the RPA Allergy Clinic (daughter 21months old). This was like a dream come true, they did a skin prick test for allergies; which showed no positive reactions (as suspected it would by the clinic Paediatrician). We were then talked through food intolerances and naturally occurring chemicals in foods which caused intolerances in some people! The evidence was there in front of us and we couldn't believe it we finally had answers. Our daughter is now a healthy 6.5 year old, on a low salicylate and mainly low chemical diet who continues to thrive and hasn't looked back. We do trial new foods occasionally and are starting to add small amounts of moderate salicylates to her diet and some dairy (her main drink is now rice milk). We know straight away if she has overloaded as this results in usually loose motions or not being able to control her motions. For us the evidence is overwhelming and we are just very grateful we have our daughter and we can now give her answers and solutions so that she continues to enjoy good health and happiness. - by email.

I was suffering with what the doctor said was normal for my age 39, higher blood pressure, heart palpitations, not able to sleep on my left hand side, rash around my groin and armpits that I couldn’t get rid of, weekly headaches and to top it of waking up at 2-3am  every morning with a anxiety attack.

I was attending a anxiety meeting every week and seeing a psychologist but the problem was that I couldn’t identify with any of the other people that came to the anxiety meeting. It seemed all of their complaints of the 100 or so different people that came to the meeting related to cyclic thought process that brought on the anxiety and kept them in that loop. I on the other hand felt a little on edge but was very relaxed about life. I delved into unresolved tensions with my psychologist but still no relief. Yoga and relaxation exercises seemed to help but what it truly did was let me watch my body go through the symptoms while I watched it happen in the third person. Because my symptoms didn’t fit the norm I refused to take any form of medication. I felt it was stupid to compound the problem until I knew what was causing it.

Finally I had yet again another anxiety attack. This time it was unbearable and my heart went over the 199 bpm that my machine could measure. I tried everything to relax but my system went into overdrive. My mother came around and my wife was there to help. I am amazingly good at relaxing my body but nothing seemed to help. I called nurse on call and they called an ambulance immediately upon hearing my symptoms. The ambulance arrived and went through the routine of checking me over and in the time they were there my body stabilised to around 100bpm. They gave me the option of going to hospital and waiting in the waiting room for 4-6 hours or stay at home and try and get over it. I took the wait at home option. The interesting thing from all of that is the male ambulance officer who leaned against the door frame for the whole time they were there said “gee you look like my wife does when she has a attack of 635” I thought he was full of
it and ignored him at the time. I felt like I had run a marathon.

The following day I looked up 635 on the internet and noticed the rash and the headaches that I had were the same but nothing else rang a bell. Having nothing else to go on I looked into what had 635 in it as an ingredient. I was amazed to find my pies, pasties from the local bakery had beef booster and hence 635 + 621 that was Monday nights explained then a lot of chips + crackers that I had for lunch - even ones from the health food section of my local supermarket that state quite clearly on the packaging that 635 is not 621 and therefore is not bad for you. What a laugh! I must stress I had no belief that 635 was the cause of anything but my rash and headaches. I have not changed my lifestyle in any way except for removing 635 + 621 from my diet and only very recently removed 282. But a key interesting note is the 12 hour delay from eating the food to the full blown symptoms.  I still eat selected junk food, I still exercise the same amount, I have even more pressure at work and I still get broken sleep from my now 2 year old.

When I would go to my doctor, her face would drop in that “not you again look” she would listen to me with bored expression and write in her notes, anxiety related. Please also note that my doctor since then acknowledged she has absolutely no knowledge of food intolerance re 635 – 621 and their symptoms. How are you expected to be helped if they are blind to these issues? The way I wish to truly express myself as to how I feel re their mainstream blindness is limited by my overriding desire to keep this letter polite. I have not read anywhere a person with my exact same experiences but I know it is simple. I have stopped eating 635 + 621 and I am back to how I remember the way I used to be.

From that week….

My multiple rashes of many years cleared up completely!

Not one single headache!

I have not had a single heart palpitation!

Not one single anxiety attack!

No hand or body tremors!

No racing heart!

No feeling of tension!

The only exception to this was when I went to a mothers’ group party and ate some salt and vinegar chips laced with 621 + 635. I had a bad night sleep that night. I checked the chips at the supermarket the following day and found the suspect ingredients. I will not eat any food that I cannot check the ingredients. Hungry Jacks will not return my calls to tell me what foods have 635 in, and Nandos will not return my calls as well. It is of interesting note that the American version of Hungry Jacks (Burger King) + KFC list their ingredients but the similar Australian version of the web sites have the ingredients list missing. I FEEL LIKE A NEW MAN – Wayne, by email

More Articles ...

  1. [565] One-liners (May 2007)
  2. [547] Patchy baldness and the gluten connection – reader’s stories (April 2007)
  3. [524] Open neglect by medical establishment (January 2007) COURAGE AWARD STORY FOR JANUARY 2007 NEWSLETTER
  4. [525] “a second lease on life” (January 2007)
  5. [526] Diet has been a lifesaver (January 2007)
  6. [527] Maya’s story (January 2007)
  7. [528] “When we started the diet to help our daughter, we didn't realise it would help our son’s asthma too …” (January 2007)
  8. [529] 635: Hives from 635 and swimming (January 2007)
  9. [530] Salicylates are our nemesis (January 2007)
  10. [531] ODD reaction to spring flowers and Floriade (January 2007)
  11. [532] Soy and depression 3 - unexplained “fevers” and hallucinations (January 2007)
  12. [533] Soy and depression 2 (January 2007)
  13. [534] Soy and depression 1 (January 2007)
  14. [535] PMS, period pain and diet 2 (January 2007)
  15. [536] PMS, period pain and diet 1 (January 2007)
  16. [537] Is there anyone else with salicylate intolerance misdiagnosed as Irritable Bowel Syndrome? (January 2007)
  17. [538] My three sons (January 2007)
  18. [539] Possible autistic spectrum if not failsafe (January 2007)
  19. [540] Heading towards a diagnosis of autism before - the difference in him is so dramatic the paediatrician was in shock (January 2007)
  20. [541] Unable to focus eyes properly after additive-laden treats (January 2007)
  21. [542] Palpitations and MSG (January 2007)
  22. [543] Covered in eczema at age of three (January 2007)
  23. [544] "parlate dell'introduzione in Italia del farmaco Ritalin per i bambini con ADHD" (January 2007)
  24. [545] Failsafe Vacation Care program (January 2007)
  25. [546] One-liners (January 2007)