I am so excited! Improvements with my 6 year olds behaviour already today! She ate two serves of protein (almost never happens!), was actually hungry at dinner time, has listened to instructions and fell asleep beautifully! First additive/preservative free day! YAY! – Hayley from facebook group

I just stumbled on your web site. Wow! It's really great to see what you've achieved since those early days. It looks like more and more people, even the 'professionals', are coming on board. I guess hard evidence finally overcomes pride and stubbornness. As one of your early believers, it's great to see you get the success you deserve - Jack, NT

The diet is very effective. I am forever grateful to you both because my four kids were a mess on natural organic food and now they are very sweet and all we have to do is be careful what we eat. They get crazy when we mess up but thankfully I know how to get back to baseline and enjoy the peace again – Naomi, USA

We have proof here at my house that Mentos are made by the devil himself. 4 days of withdrawal and counting. Be wary of this demon drug! – Jo from Facebook group

My son has eye motor tics, since he has been failsafe his tics have vanished - Rachel, UK

The diet has been wonderful for my son. All the things that Sue wrote about with your daughter were what we were experiencing. My son is a bright healthy 7 year old who is doing very well at school. We have been failsafe for 12 months now. It's not easy but it is totally worth it. – Maryanne from facebook group

My daughter has recently been diagnosed intolerant to amines, we have been low amine for about 2 months. We have had great results, days we have cheated she has been lethargic, thrown up, looked pale etc. The difference on the days we have not cheated are amazing, my happy 12 year old is back. The results have been so startling that today we will become a FS family. She is intolerant to amines as she has been diagnosed with cyclic vomiting syndrome, you can add that in if you wish as not many people know about CVS and finding out that low amine diet helps took us 6 months of various doctors and A&E trips. – Sarah on Facebook group

My son has been diagnosed as ADHD however on the elimination diet he proved to be sensitive on the amines challenge, and bad - threatened to kill me, uncontrollable crying yelling, yet when we avoid the amines the ADHD symptoms all but disappear! I have a wonderful dietician, she has done wonders for us as a family far more than any of the paediatrician we have seen, it's amazing what a change of diet can do. – Katrina on Facebook group

I have been on the failsafe diet consistently for the last 8 years, and intermittently for the last 15 years, since I was diagnosed with amine and salicylate intolerance at the Royal Prince Alfred Hospital in Sydney. I have tried everything to improve my tolerance of amines and salicylates, including the failsafe diet, long term naturopathy, homeopathy, stress management, exercise, and an expensive and fruitless exercise involving spinal stimulation.

I thought you might be interested to hear that last month I came across what I could only term a 'miracle cure'. I had been reading about the subject of psychoneuroimmunology, and how even rats can display a powerful physical placebo effect in tests. So I visited a clinical hypnotherapist to see if she could uncover anything in my subconscious to explain or address my food intolerance.

She told me the story of a patient with multiple personality disorder, who when they were their "normal" self tested positive for Coeliac's disease. However when they were another personality, they tested negative for Coeliac's disease and could eat wheat products with abandon.

In a single one hour session, the hypnotherapist and I discovered that that the onset of my food intolerance coincided with an incident involving claustrophobia in my mid-20s, which we linked back to a trauma involving claustrophobia as a child. On both occasions, I had eaten spicy food, which of course are high in natural chemicals. The second incident triggered a subconscious trauma, and I haven't been able to tolerate spicy foods, among others, since. Under hypnosis, we 're-made' the traumatic events in my sub-conscious to become benign situations.

I had absolutely no idea of this link, and the revelation was extremely powerful. Since then, I have eaten grapes, peaches, melons, broccoli, cauliflower, milk chocolate and other high-chemical foods with no reaction. I had forgotten how wonderfully delicious these foods are after so many years on my bland diet. I do not know how many other people this technique could work for, but it is certainly worth telling my story. I know your philosophy in the Failsafe Newsletter is usually abstinence, but if this story helps one person, it is worth telling.

5 months later: I continue to eat lots more things than I used to - eg grapes, dried fruits such as prunes and apricots, berries, commercial sauces such as mint sauce and gravy, herbs such as oregano, rosemary and bay leaves, hard cheese, basil pesto, chocolate and curries, without any noticeable effect. I even add a tin of tomatoes into my bolognaise sauce. I do not eat every food, as I am so accustomed to the failsafe diet and am reluctant to push my good fortune. So I take a 'moderation' approach eg I do not eat citrus, wine or some other foods eg mushrooms or capsicum that I am not that keen on anyway. I feel lucky to be in the position I am in, after so many years on a very restricted diet – Lisa by email

I have found Fed Up to be amazing, a real eye opener. My daughter is 28 months old, and I now know that my daughter has Oppositional defiance. What a relief as I thought I was going to go insane with her. We have made a few changes with avoiding anything with 160b and 282 in bread and the difference already has been amazing. Now I want to undertake the elimination diet under supervision as I also have an 11 month old son who I know will also benefit. The book has really opened my eyes and has inspired my partner and I to push forward to get the best from our kids instead of living in a war-torn home. The work you are all doing is amazing so please keep up the good work. You have given me belief that life will get better and that the kids will have a better quality of life, because from small changes we can already see it happening so I can only imagine once we have completed the elimination diet the benefits we will receive. Thank you sooo much. - Gloria

My 4 year old daughter was headed for a life of labels due to her inattention and naughtiness especially at kinder, and I am hoping we have found the answer. She was advanced with everything up until the age of 2 and then has slowed down, especially in the last year, becoming more and more immature, naughty, silly and unable to concentrate, with only selective listening, especially in public and at kinder, but she wasn't like that all the time, so I knew it wasn't the real her.

It's been 5 days on the diet and she has been calmer, more co-operative and more focused, but I think we have made some mistakes each day, due to wrong vegetable oil and my ex-husband's insistence that only a "tiny bit" of curry powder would be fine. It wasn't fine, she went hyper. I also suspect dairy could still be causing problems, her bolts to the loo and sloppy poos have almost stopped with lactose-free milk, but she is still doing it occasionally and can't maintain concentration after a while if she's had products that contain milk.

A month later: We are still progressing well. The school holidays were great, as it was easier with less rush. My daughter has been wonderful. There have been some wow moments: I had to drop something off to a friend who works next door to a McDonald's, and she asked if I wanted to grab a quick coffee there. I explained to my daughter that I would not be buying her anything, but would get her something yummy when we got home - she went and played and didn't once ask for anything to eat or drink. Then, at a birthday party I told her to say good-bye to her friends because we were leaving, and after I had said my goodbyes, expecting to have to hunt for her and then have the typical battle to leave I'd always faced, I was shocked to find her inside, waiting for me at the front door.

Milk still seems to be a problem for her, even A2 milk, on the days she has more, I hear a lot of throat clearing and the more old behaviours I see for the next day or so - silliness, lack of concentration, irritable and more oppositional, but still nowhere near the pre-diet days. Her kinder teacher has noticed and commented on the change, and so did her Ready Steady Go Kids instructor (and that was on one of her not so great "after-dairy" days).

As for me I have not been as disciplined at times, especially when we are rushing out somewhere, I have skipped breakfast in favour of a muesli bar on the run, and paid for it later with headaches and irritability. But overall I feel so much better, clearer headed and my sinusitis, hayfever and headaches are, for the most part gone!!! They used to be frequent – Jenny by email.

It only took a year (!) but we have finally managed to convince our lower north shore Sydney primary school to delete the Slades "Quench" drinks from our tuck shop menu! After an unannounced presentation on the true ingredients and their potential for behavioural disruption (backed up by a teacher rolling her eyes in exasperation at the effect the drinks have on kids in the afternoon) AND passing them around for parents and teachers to smell (no one dared drink them) the case was won to remove them.

The front of these drinks reads "Lightly carbonated spring water with 10% fruit juice" in fact when I compared this drink it is about 95% like Fanta with 35mls of juice added to get into the tuck shop guidelines (and fructose added presumably to increase the sweetness while being able to claim say reduced sugar).

Kids taste red, orange, or green cordial/soft drink but as they are consumed at school parents rarely, if ever, see/smell/taste these shockers for themselves and so are unaware of the true nature of these drinks. No ingredient listing is on the ordering system - one needs to hold the product to find out what their kids are getting from the tuck shop. It was clearing out my daughter's bag that I found an almost empty one that reeked of a raspberry lolly.

I really think involving people's sense of smell and taste in these products makes their judgement of the drink - complex ingredients lists and marketing tricks aside - eg everyone can identify a red raspberry lolly smell - even if the bottle says spring water with fruit juice.

I have realised there is a serious disconnect between what our kids are TASTING and what parents THINK their kids are drinking.

Savvy companies are knowingly, or maybe unknowingly, taking advantage of this communication gap in schools.

Not perfect in the canteen - but much better - thanks to Clare

Thought I would just let you know that the school principal has still not responded to my offer to print your Failsafe newsletter for attachment to our school newsletter! Just shows - it is a small 70 pupil school which has some kids with strong behaviour concerns - how unopen the supposed leaders of the community are to options to help manage their own challenges! The food they serve in the tuckshop is just awful...

Anyway - I tried. Have however sent it to the local paediatrician, ed psychologist, GP and local Child Behaviour Unit for information - all of whom we spoke to for our own boys concerns and all of whom never considered diet as an area to look at for solutions!

Well that's my rant done - you are all to be applauded for the effort you put into it - Maria by email

I only got to your website after another bad reaction to a meal, this time at a very western pub in Fitzroy, where I had a meat-pie. Of course, it was not long after I was feeling very thirsty and restless. In the middle of the night, I was waking again and again from nightmares and spending long periods of time trying to fall asleep again, while feeling flushes of heat / itch all over my body. I know that again, I will have a second night of bad sleep as it generally takes about 24 - 48 hours to clear up, and not even sleeping pills help me most of the time.

I have actually spent all my life with incredibly bad sleeping patterns and bad asthma, especially when I was a child. I used to live in Peru and clearly remember an always present bottle of Aji-no-moto on the table. I am now 37 years old and still suffer from terrible insomnia, which got even worse when I spent time working in Hong Kong and Singapore, where I regularly ate the local food. The lack of sleep then included these vivid nightmares, where I was sometimes aware of being in dreams that I tried to wake myself from. I think I have become more sensitive to it and the bad sleeping patterns have led me to a level of depression.

At my return to Australia, I talked to a few people about this and suggested it could be the MSG used in food preparation. The more I read the more contradicting information I found, especially because I could still recognise the symptoms (flushes of heat, sudden short-breathiness, thirst, itchiness) like last night after eating non-Asian food.

5 months later: When it comes to improvement, I have certainly tested MSG as the main culprit. Most of the times I can recognise the symptoms within a short time if I ingest something with it unknowingly - Carlos, by email

Thank you for all your efforts over the years. I am certainly a champion of the cause after the success we have had with our daughter. Anyone that talks of issues with their children I talk about FAILSAFE, even buy the books for them.

In 2003 the teachers, doctors and paediatrician all wanted to medicate our daughter for ADD. She was behind in school, had trouble keeping friends, would have fits of rage then extreme bouts of depression, wanting to self harm or die. It was tragic and heartbreaking. Looking back we now see how we went from a really good baby to a terrible twos and beyond ... after the introduction of main stream solids. I was quite determined not to take the easy way out and spend $20 a month on subsidised dexamphetamine ... so my research led me to Fed Up. We haven't looked back, yes admittedly we have slipped over the years but behaviours and moods always bring us back. It's been a long and at times arduous journey but well worth the effort.

Our daughter graduated high school last year with one of the highest OPs in her school which guaranteed her entry into a number of top universities. Everyone (including the teachers) comments on how polite and engaging she is as a teenager.

My advice to those starting the failsafe journey ... hang in there ... the rewards are well worth the effort. Thank you Sue and Howard! - D from Brisbane

I've been concerned about brain fogging for some time, but never knew whether it was a real effect (or just 'me') or where it came from. After doing the Elimination Diet for about 6 weeks and then the RPAH Glutamates Challenge of 4 tablespoons of soy sauce over rice, I developed quite strong brain fogging within about an hour. As a former regular eater of strong cheeses, Marmite, and soy sauce with sushi, I then understood where my brain fog problem came from! I also think that my heart rhythm issues have decreased since I've started avoiding foodstuffs with high levels of glutamates. Your website and the RPAH book and challenges led me to my answer, thank you very much! I also recently learned that when my mother got bad arthritis in the 70s or 80s, she did some research and decided MSG was probably the culprit, cut it out and the arthritis subsided.- Neil, UK

My son is 3 years old and we have his asthma under control due to the low salicylate diet he has been on since 18 months.

He still has a problem if he eats to many salicylates, an example is a few nights ago I let him have a very small amount of a pasta dish which had tomatoes and dried herbs, that was at around 6.30pm at around 4.00am the next morning he came into my bed and his breathing was terrible - fast and through his mouth, I had to give him his ventolin and it took him over an hour to go back to sleep in my bed he would not go back to his own. I had to take him to the GP on that same day at around 3.00pm to have his tonsils checked as the speech therapist thought they were large (the GP said they are a little bit but not enough to be causing him any problems), the GP also listened to his chest and said it was very good. I should have known better and will not do it again in a hurry. I am convinced the diet works and it has really helped William.

His dietician put him on gluten free as after about 3 months or so of the as he was not putting on weight has he should be. I thought you might like to hear that the A2 milk is helping William's speech, it has improved a lot. Also his appetite is much better and he is no longer constipated as has been since we started failsafe eating. – Louise, by email

Our paediatrician advised us to try failsafe eating for our 8 year old boy after years of struggles with asthma and ADD. What a change. For the first winter in 8 years he has gone medication free - his usual line up was prednisolone, antibiotics, 2 x preventative puffers and constant ventolin.

We tried the benzoate challenge. Within 24 hours of trying one glass of lemonade he was coughing again (causing mucous/vomiting as well) and needing ventolin for the next 48 hours. The same happened after a neighbour 'kindly' gave him a blueberry frostee! 48 hours later we are still recovering, but this time from headaches as well! – Meg, NSW

FIN Comment

Most children's medications contain benzoate preservatives (also called hydroxybenzoates or parabens) - even asthma medications - and these too can contribute to asthma, eczema and hives as well as behavioural effects.

Asthma and intolerance to benzoates http://www.ncbi.nlm.nih.gov/pubmed/8952792

Clinico-immunological study of 16 cases of benzoate intolerance in children http://www.ncbi.nlm.nih.gov/pubmed/9162174

We are just amazed how much healthier our 8 year old son has been since trying to be failsafe. Have you ever looked into the relationship between additives and obesity? Since being on the diet my children's appetite has diminished incredibly. Simply because they no longer have cravings and feel hungry after eating a meal. (Obviously related to additives). With the amount that the government spends on obesity related diabetes etc, you wonder if the budget could be lessened if additives were directly proven for stimulating the hunger pains and creating all these health issues. Thank you so much for all the encouragement your website and books bring. – by email, NSW

FIN comment

Studies in China show that MSG contributes to obesity regardless of activity or caloric intake. The Western diet contains MSG in foods aimed at children and often labelled as flavour enhancers, hydrolysed vegetable protein, yeast extract or others. See MSG factsheet

References

Association of monosodium glutamate intake with overweight in Chinese adults (752 healthy Chinese aged 40-59 years, randomly sampled from three rural villages in north and south China) http://www.ncbi.nlm.nih.gov/pubmed/18497735

Consumption of monosodium glutamate in relation to incidence of overweight in Chinese adults (10,095 healthy Chinese adults aged 18-65 y at entry from 1991 to 2006) http://www.ncbi.nlm.nih.gov/pubmed/21471280

Behavioral and endocrinological effects of single injections of monosodium glutamate in the mouse. http://www.ncbi.nlm.nih.gov/pubmed/3785512

* Day 4 now and into withdrawals - my thoughts are scattered, disjointed, I can almost hear my brain "creaking" as it tries to work!! Even put some bicarb into a glass and then left it there on the bench, instead of adding water and drinking!!!! Found it 1/2 an hour later. My other physical symptoms seem to have improved since day 2, but we'll see how it progresses from here, carefully recording everything too. Boy you wqouldn't believe how long it's taken me to write this email!

* We are on Day 6 today and going fantastically! No withdrawal symptoms so far, just a bit teary at night time (she says her body just wants to cry) ...

* Our son's issues decreased within the first week of the diet. He was less hyper, more compliant, and able to sleep better, except for one noticeable withdrawal episode - his first on-the-floor kicking temper tantrum. - from story [908]

* We booked into a failsafe dietician and started the elimination diet. Our baby son improved a little, and then had textbook withdrawal after a week and a half. In week 3 he slept through the night for the first time in 15 months ...- from story 878

* About a month ago my daughter had developed a cold-sore as part of the withdrawals associated with going back onto the very basic elimination diet after we'd let a few too many fruits and veges creep back into our diet - from story [860]

* I only took out gluten about 1.5 years ago, as I still had some unexplained joint pain. Didn't realise it was connected with my moods, till I came off it and had severe withdrawals - headaches, depression, diarrhoea. On challenging it, I had severe depression, disconnection with reality, had trouble making my body respond to my brain, like I couldn't make a decision to move, and terrible anxiety. So even though I was doing very well on Failsafe and not gluten free, I'm doing even better off gluten. - from story [806]

* At this stage we think that too many amines make our son nasty and too many salicylates make him hyper. Since we took him off the cows milk as well and got over the withdrawals he no longer needs speech therapy, has a great appetite and is putting on weight, is able to enjoy play dates, is calm, doesn't complain of tummy ache etc and our life is much easier. - from story [716]

* We did the diet for our 9-year-old daughter's behaviour problems (fighting, defiance, stealing etc). Within weeks, apart from a few withdrawals, everyone noticed an improvement and now, nine months later – what a difference! - from [528]

* We are doing the elimination diet for my three children. I have been on the diet too and on the two occasions I had chocolate with my husband, I had a huge headache the next day. I have been a chocoholic all my life!! I also had a headache for the first week due to withdrawals, I presume. - from story [212]

* We are doing the elimination diet to try and help our 8 year old daughter. Her main problem is that she has suffered from regular, unexplained and excessive fatigue for several years. We have also recently realised that she suffers a lot of dizziness and light headedness too. On day 3 and 4 of elimination she "lost it" - picked fights, became over emotional, almost hysterical, restless, teary, irrational, and claimed we were all against her. I was a bit scared as this was not in the least her normal behaviour. She also had some nausea. However thankfully these withdrawals eased off by day 5. The first improvement she noticed was that she didn't feel irritable any more. Then she started to say she had more energy. - from [156]

* I went onto failsafe for symptoms that my doctors were calling irritable bowel. I had gone off antidepressants for about six months before testing for IBS, but the first thing the doctors did when looking into my bowel problems was to put me back on antidepressants. During this time I had still been eating my old diet of chocolate, plus other foods that are high in amines. So for my bowel reasons I went onto failsafe, cutting out everything including wheat and dairy. This was very hard, and the withdrawal symptoms were awful, my husband put up with me yelling at him for no except that he wouldn't go and get me chocolate! - from story [344]

* This is our second week Failsafe and the seriously awful headaches from the withdrawal seem to have stopped and I am feeling energetic again. - from story [1137]

I have found failsafe eating to be extremely helpful in controlling the symptoms of my mast cell activation disorder (far more so than the medications my specialist initially recommended, actually, and he subsequently agreed that the diet is fine as long as it works for me). I have a relatively mild mast cell problem that seems to result in amine and salicylate sensitivity, but I have felt much, much better since discovering failsafe eating.

Note that there are other forms of mast cell activation disorder for which the diet might help reduce symptoms but would NOT be sufficient on its own, and I don't want someone with one of those to maybe be misled by my comments into thinking that they should stop or reduce their medications without discussing very carefully with their doctor first.

My family's diet changed for the better as well, and my younger son's mysterious "growing pains" disappeared. Your books and www.fedup.com.au have been great resources - thank you! I greatly appreciate the way I feel much better every single day than I did before starting on failsafe! - Monica, by email

[new] mast cell activation disorder
I have found failsafe eating to be extremely helpful in controlling the symptoms of my mast cell activation disorder (far more so than the medications my specialist initially recommended, actually, and he subsequently agreed that the diet is fine as long as it works for me). I have a relatively mild mast cell problem that seems to result in amine and salicylate sensitivity, but I have felt much, much better since discovering failsafe eating.
Note that there are other forms of mast cell activation disorder for which the diet might help reduce symptoms but would NOT be sufficient on its own, and I don't want someone with one of those to maybe be misled by my comments into thinking that they should stop or reduce their medications without discussing very carefully with their doctor first.
My family's diet changed for the better as well, and my younger son's mysterious "growing pains" disappeared. Your books and fedup.com.au have been great resources - thank you!  I greatly appreciate the way I feel much better every single day than I did before starting on failsafe! - Monica, by email

August 2012: My 11yo son has had these allergic welts which start with his hands and feet itching so bad that he is in despair then he gets red blotchy welts on his torso and legs and his legs go purple and he has goosebumps the whole time. After numerous trips to the doctors to be told he has a reaction to the dog, may have a weird virus that will just go in time, to are you sure you have not changed his soap or washing powder product?.... I knew it was something else so started doing my homework.

January 2013: I took the Flavour Enhancers (621, 635, 637 and any other enhancer starting with 6) out of my son's diet back in August last year, and have not seen another episode of reactions at all. I have taken that number out of my whole families diet also, so I am sure it was the cause of these rashes and welts on his body. He was just having severe reactions to these enhancers.

My kids are super savvy now finding this number in foods, its like a game really and at times they are disappointed that they cannot eat certain foods containing these numbers, but elated to find other products that they really want that don't have that number in... so it is an ok situation.

I have been back to our GP and talked in depth to the nurses about these numbers and what they can do to young bodies and they said that it is so interesting and will look up information for future cases like my sons. Thanks a lot for your help.

Which foods? Foods that my son was eating were not things he had every day, but we were so surprised to find that these 6 Number Flavour Enhancers are in soooooo many foods that kids like and us Mums give them as treats and as spreads etc on toast in the am thinking that they are ok.

Our number one shocker was Promite (which has two numbers 627 and 631). So that went, my son loved Promite and would have it every day on toast...! Trigger and we did not even know. Things like spices, season all, chicken salt you have to watch as it is laced with 6 numbers... Cuppa soups, Maggi noodles (the satchel that you put in- especially the chicken) no good. National meat pies and sausage rolls – cant have flavoured chips like Samboy BBQ, BBQ shapes etc... We just have plain sea salt chips now, nothing with flavours. A lot of dips and Indian spiced foods (sauces) have these numbers also. Some companies, because of loopholes in the Aust/NZ system for labelling our food don't even put the numbers they just say "natural enhancers or "flavour enhancer", and we just steer clear of anything like that.... It is in soooo many foods now, but it is possible to avoid them if you train yourself and your kids to eat differently and to look at labels.

It is very wrong of the Governments to not label these enhancers correctly as it can cause such illness in our kids.. It makes me really angry and if they had seen my son's reactions they would be too. Hope this helps you guys out some . - Anna, Tasmania (watch out for yeast extract and hydrolysed vegetable protein (HVP) too!)

Post: My 5yo suffers blood noses and we suspect salicylates. Has anyone else experienced this? We did the elim diet for our 2yo and don't think he had any during that time. Anyone else have this problem?? He gets leg pains too from to many sals (though he can have a lot more than FS levels) - Andrea.

Edited responses:

My DS used to get nose bleeds from amines – Teresa (Good to know as I hadn't considered amines, as he's pretty much ok with them.. – Andrea)

Our son had nosebleeds from amines for many years until we found out what caused them. But it may be salicylates for some – Howard (Because our son is a fruit addict I had just thought it was salicylates and hadn't considered amines. But now I will! – Andrea)

My son gets nosebleeds from sals. He does not get them anymore and is low sals, moderate amines. I have never suspected amines, thanks for the info - Chelsea

We had nosebleeds for 5 years. Had tonsils, adenoids removed, multiple cauterizations, toooooo many rounds of antibiotics for sinus infections...all to no avail. They stopped on elimination and reoccurred on both the salicylate and amine challenges (bedwetting also). Can't wait to be back at baseline! – Nicki   (Thanks for the info. My family keep saying "he's probably just prone to them"...mmm yeah right. Plus they don't really think sals do anything. My son's seem to worse in summer and rather than being the heat I think its the summer fruit. You have all given me the reinforcement to trust my instincts again! I'm going to reduce sals as I'm fairly confident that's the issue and see if there's any effect, then challenge. Would be nice to have a week without one! – Andrea)

Ya, Andrea we got the same thing...even from the medical community of "experts"...no one knows our kids like we do. - Nicki

When you say summer fruits... which ones? – Teresa  (We especially noticed when he gorged himself on watermelon. But he also eats apples, strawberries (though we have cut those out now), melons, mango, bananas & grapes. But we noticed the sals connection after he ate loads of watermelon in one day, and honey (which he loves). So we are reducing sals for a week and will try and keep them at a more moderate level. My helpful family said it was the heat, but he didn't get nose bleeds during 40+ temps last week! – Andrea)

My son had bloody noses all the time especially in summer when we seem to eat more fruit. He has salicylates and amines intolerances, before we found out this he was sent to an ears, nose and throat specialist as his nose wasn't growing outwards... Tracy (wow what a difference. It's so good to hear so I know I'm on the right track! If I had to have his nose cauterised my family would think that's fine, but cut out fruit and they think I'm bonkers – Andrea)

Thank u so much for this thread... Have a friend with a 3 year old who has blood noses and he eats so much watermelon I don't know how he isn't one yet! – Emma

 

Prior to Easter we had been strict failsafe the results have been great and my son has been a pleasure to take out. We have had chocolate over the Easter break - not a lot in comparison to other years, but obviously too much. This morning my son is bouncing of the walls (obviously the chocolate) no more chocolate, back on failsafe. As well, my son, daughter and myself have been having nose bleeds. We have all had period when we have had nose bleeds in the past but not put it down to food before - but obviously now wondering if they could be linked to the chocolate (amines). - Kylie, by email

During my daughter's first week in primary school I caved in to her demands to allow her to take Twisties for a snack 'just like all the other children'. Two packets in one week, and two of the WORST nosebleeds imaginable. Combine that with M&Ms to get her to do all the homework, and I'm sure you get the picture! It turned out to be a good thing, as when I explained the connection, she was so frightened by the nosebleeds that she now asks me if food is 'friendly' before eating it, and is unusually compliant about it all. - by email

 

While doing the elimination diet, it has become obvious that for me and my son, the cause of our frequent nosebleeds is too many dairy products - usually combined with getting very hot during exercise or because of the weather. If we avoid A1 dairy products (A2 is okay) we can get hot without getting nosebleeds. - by email

My daughter has had migraines since she was about three years old. We had no idea what they were for several years. She usually gets a fever with her migraines and because of the fever the doctor would always put it down to 'a virus', prescribing painkillers. I would often give her panadol for four days straight just to keep the headaches at bay. She goes limp and listless, her eyes droop, she lies there and sleeps for hours until the panadol wears off and then the pain and fever return. Most times she will scream and cry at me grabbing her forehead, pleading with me to take the pain away. "Mummmy Mummy my heads hurts, please stop it."

A year after she started getting the migraines, we were referred to a paediatrician who could find no medical reason for them. He thought it may have been an attention grabber or perhaps the start of a cold. He was at a loss too. He asked me to diarise her migraines. The migraines continued on and off with no regular pattern that I could work out. Once a week, then maybe another in 6 weeks times, then two months. It varied greatly.

Two years later we started taking a fish oil supplement (not the same brand as the one mentioned in [440], [441]). The migraines became more frequent and she started throwing up with them. She would go to sleep with a migraine, wake at 3 am and throw up in bed. This time her paediatrician ordered a CAT scan which was clear. He offered my 6 year old a daily dose of Betablockers or a trial using Riboflavins. He also suggested diet manipulation ... Guess which one we chose? ...

On the second day of the amine challenge, my daughter got a migraine, fever, droopy eyes and became listless. School rang and asked me to collect her, again. She stayed unwell for several days with the headache. Since the end of the amine challenge three months ago we haven't had one migraine! So, no more amines for my daughter. It turns out that the fish oil supplement has amines in it which is why her migraines would have become so frequent and regular. I was giving her six capsules per day for three months as per instructions. - mother of a seven year-old

I can't agree that intolerances are never fatal. My father and I get crushing depression after we eat foods to which we are intolerant (e.g. nutmeg, cinnamon or wines). It doesn't last long (36 hours) but it's really unpleasant. I suspect a proportion of suicides are ultimately caused by the mood effects of undiagnosed food intolerances. After all, you can't avoid it if you don't know you're intolerant to it. Tragically, I hear some antidepressants are also high in the same chemicals (salicylates and amines). This may account for some of the sudden suicides seen when people first begin antidepressant medications – from online comment on an ABC news program discussing food intolerance http://www.abc.net.au/radionational/programs/lifematters/talkback-food-intolerance/2996308#comments

My daughter, who is now 7 years old and who began the failsafe approach at age 3, reacts in the following ways whenever she has 282 in bread. She becomes defiant, hyperactive, impossible to reason with, plain silly, very loud, noisy, annoying to others, demanding, pushy, and if something doesn't go her way...watch out...fully blown tantrum including slamming doors, storming out the house, screaming, yelling, crying that goes on for a long time. Can't and won't follow simple instructions, becomes distracted easily, goes off track and off task, becomes destructive She also finds settling at night really difficult ... can't seem to switch off. The next day she realizes that it was the 282 that made her feel that way ... and she genuinely can't refrain from behaving in this way. We are pleased though that as she grows her reactions seem to be becoming slightly less severe. I think this has to do with more careful diet, increased body weight, and increased maturity on her part.

Prior to going failsafe, life was unbearable. She had night terrors every night for 4 years etc, etc, etc. We made many trips to specialists and psychologists and others, with no explanation as to why we had a totally uncontrollable child. We chose to try Failsafe before we filled the prescription for Ritalin that we had been given, and thankfully it worked!

Thanks to your book, Fed Up, we have seen incredible results and are now on track. - Debbie, Victoria

I'm only doing the elimination diet to keep my overactive son company, so I was very surprised at my own reaction to the bread preservative (282) challenge. After two days, I got so incredibly tired, I thought I was getting sick. All I wanted to do was sleep; I felt like a slug. Now, I have excessive energy normally so this was quite a change. When I stopped the bread I felt better overnight. - reader, USA

I am a busy executive. I love my job but for the last two years I have been feeling tired all the time and struggling to keep up. I was diagnosed with chronic fatigue. After I read your book I decided to try preservative free bread and GUESS WHAT? I don't have chronic fatigue after all - it was all due to that stupid preservative. People need to know it doesn't only affect kids. When I eat it, I feel tired and need to sleep a lot. - by email, WA

I have been following the failsafe food guide and have had tremendous success. Today however after having a child for the past 3 weeks back to being Grumpy and Rude, lacking concentration, disruptive whenever possible and just not being nice, I discovered that the 'healthy' wraps we have been eating are now putting 282 in their product. After speaking to them they could not guarantee that 282 has not found its way into unmarked wraps.

We are not junk food people and have never encouraged that type of eating by our boys. We have found things that are considered the good foods affect our son and your books and information have helped us work out what he can and can not have. So when you find a product that has been great and they change it without telling you it is a pain and has had an effect on the whole family. Our son's teacher could not believe the negative change in him over the past 3 to 4 weeks towards his concentration and focus on his school work. - Cherie, Qld

I have recently joined the Failsafe Fan Club after watching the Current Affair special. You'll be pleased to know that all of my local bookstores immediately sold out of "Fed Up" and several orders were placed.

I was so frustrated to not be able to get my hands on a copy of the book, the symptoms that the children described were identical to things my daughter has been experiencing for the past year, voices in her head, a motor that never stopped running, hating herself and others, arguing with adults, and a worsening learning delay.

I logged on to your web page, read all the newsletters, made a manual list of all the readily available Failsafe products, printed off the additives to avoid, and immediately eliminated preservatives and colourings from my pantry and my shopping list.

The most obvious reaction has been the elimination of the bread preservative 282. We have had a breadmaker for 12 months now but had recently become lazy and had reverted back to using commercial breads. I could never understand how my daughter could be an angel for one whole day and then spend the next 5 days angry and sullen. The Reader's Stories showed me that preservative 282 could be the culprit. I am now only using Laucke's pre-mix in my breadmaker or commercial bread without 282. My daughter's Oppositional Defiant Disorder has disappeared within a week. My husband and I were so dumbfounded when we issued an instruction last weekend - expecting it to be completely ignored, followed by a stormy argument - to have my daughter jump up, reply "Yes, Mummy, sorry I didn't hear you the first time", carry out the task and then return to her play. We sat and looked at each with stupid grins on our faces for a full five minutes. - reader, by email

Due to the fact that it can be hidden and is unrecognized as a food allergy, it is extremely difficult to avoid in the USA and most people do not even understand why they are getting sick. They are told by the medical industry they have IBS or acid reflux, etc.

Annatto will affect most every system of the body. Since I have attempted to avoid it I have noticed improvements in my gastrointestinal, urinary tract, skin, headaches, dizziness, and even sinuses. I was suffering from exposure for over 40 years and on medication for 10 years before someone alerted me to this issue. I have not needed any medication [except on accidental exposure] since I have chosen to avoid it over a year ago - Sylvia, USA.

Our 4yo son's behaviour really (apparently) deteriorated while I was pregnant with our second. It is hard to know if it's because you get lazy with the food whilst pregnant and go with more convenience products or a myriad of any other things. But I certainly recall during my pregnancy knowing that this couldn't go on! His day time behaviour didn't seem terrible, just the terrible two's, right? He would play quietly by himself for long periods of time and only if you asked him to stop doing the thing that he was enjoying, the reaction was over the top response. His tantrums were unbelievable. It would start with a simple over reaction to something and he just would be quite literally hysterical. No amount of comfort or words would ease the tantrum. The only way to deal with him was to usher him to his bed where he would scream it out. He would then sheepishly come out and we could move on.

The saddest, scariest day for me, he came out of the kitchen carrying 5 toys (as kids are known to do) he dropped one, and then all of them, he just lost the plot! Screaming, out of control, and the look on his face told me his head was in agony. I knew that if he was a teenager feeling what he was feeling, there is no doubt in my mind that he would suicide. What other way out is there? He didn't sleep well, not more than 2 hours at a time, and it would generally take 3 hours to get him to sleep. Draining.

We were introduced to food being the root of our problem, thanks to my mum. First thing we pulled out of the cupboard was Heinz Baby Fruit Bars. Checking every ingredient and it is the last ingredient that is the problem: Annatto (160b)! According to The Chemical Maze "May cause irritability; head banging; hives; headache; sleep disturbance; restlessness" Our boy, of 2 and 1/2 was suffering from all but the head banging, and hives, although I would argue that he had hives on the brain, as I would describe it.

Annatto is in everything! So even though I was giving him a variety of foods, he was still getting a good dose of annatto every day. the fruit bars, vanilla ice cream, fruit drink concentrate, crumbed deli products, cereals, noodles, caramel rice cakes, almost every aisle in the supermarket contains annatto in it. And this poor little fellow was like a junky. He would go scratching at the pantry door trying to get at the products that contained his fix. I marvelled at how he knew that was what would fix his pains. But I was the same with dark chocolate, I didn't know it caused the headaches, I just knew that it made them go away. Immediately all things with annatto were removed from the cupboard and given away, with much guilt I might add. Within 3 days it was plainly obvious that he was feeling great. We had a few incidents early on, learning what products really do contain 160b. It's hard for people to understand unless they see it firsthand too. I was really lucky that Mum had stayed for the whole week and saw the turn around. And, although it wasn't a hard sell for her, she already understood the link between food and the body; it is always great to see positive results.

From there you could start to see more ups and downs, that other things were causing troubles. And every time I researched, it brought me back to www.fedup.com.au and salicylates. It took a little while to figure out that was what we needed. I read Sue Dengate's book, Fed Up with children's behaviour. The entire book was light bulby for me, my child hood would have been so much better had this information been available to my mother. All I kept thinking while reading the book; was that this is the book that should be read by mothers when they come home with their newborns. You are told to look for reactions, but you really don't understand what that means. We are also told there is no manual for babies, but I really feel that the Fed Up book is a great start.

It was pretty much a no brainer to go failsafe, but the approach was tricky, as change always is... But after a slow two week start, which I had declared we would use up what we had in the house but only buy failsafe things. Didn't work out too well, I couldn't in good conscience actually cook with any of that stuff. Before you know it we were boxing the food up to give away.

It took me a few months to find my feet, many nights crying myself to sleep, and many days worried sick. It was only after moving to rural Queensland that I was able to meet with an Allied Health dietician that familiar with the RPAH Elimination Diet and could be helpful. But this was 12 months after we had started, and I really had found my feet. We got there in the end, the transition was painful. We now live on the strict elimination diet now. Only low chemical for us. Any challenge we make ends in negative results. So there is no deviation from the path for us. My previously fussy eater is now expanding on his food palette. I would never have thought it possible. But it seems that a lot of kids with food intolerance are fussy eaters. Somehow their brain has the food/feeling connection but it just doesn't tell us.

As it turns out, my mother doesn't fair well with Annatto in products either, it gives her terrible dreams and for her, it is just best avoided. Of course, I would advocate for its removal from our food. Is it really necessary, it is just a colour, a colour with other safer alternatives? – Jayne from Qld.

I have a five year old who has epilepsy as well as well as host of behavioural and learning problems. From reading your book I think he may have a food intolerance problem because he gets sick when he eats pizza or hot chips. I can't get in to see a dietitian for the elimination diet for five months. At the moment I have eating only from the shopping list in your book. It has only been 5 days and I think I can see an improvement. I am worried about the medication that he is on (Tegretol) as I have read that it can cause some of the aggressive behaviour that he exhibits. I have looked through some of the other medications used for epilepsy and it doesn't seem that any them would be suitable.

2 weeks later: I have had had my son on the diet for about 2 weeks now and have good success. The last 3 days he has been wonderful and I am hoping that it continues. I borrowed your book (Fed up with ADHD) from the library and love it.

Next day: I took my son to his paediatrician yesterday. We are changing him from Tegretol liquid to white Epilim tablets which seemed to be the one with the least additives and hope it all goes well. We have had 4 really good days now, the best he has ever been. I don't think his doc could believe the difference in him because all the time they have only ever offered medication for his behaviour which I refused hoping for something better and I believe I have found it. – Sonia, by email Feb 2007

Rhythmic jerking while asleep which stop if gently woken are frequently misdiagnosed as epilepsy in children. A British Medical Journal reports 15 cases of misdiagnosis, seven of which resulted in anticonvulsant medication for periods ranging from three months to seven years, without benefit. And a reader reports it's not just children.

A few years ago, while living in the UK, my then 32 year old very fit healthy husband started to have nocturnal partial seizures (or so it seemed). He was extensively and exhaustively investigated, which was very reassuring. He was told he had epilepsy, put on carbamazepine, and had to leave his job as a result as his work involved driving.

On our second and final visit to the neurologist he was told "there is nothing wrong with you". I took issue with this and asked why in that case he was on antiepileptic drugs, had been told to revoke his driving licence, and had been told he had epilepsy. Eventually we were reduced to the degrading situation of borrowing a video camera to tape these episodes, we felt so much like no-one believed us. On watching the recordings, he was clearly experiencing episodes of paroxysmal nocturnal myoclonus - which I later discovered as an entity in the small print in big fat textbooks.

To cut a long story short, I concluded the problem was stress related - or more accurately, bullying at work (in a very subtle, unobtrusive way) - the bullier (a colleague) took a dislike to him when he made a polite request of the boss to work elsewhere as the open plan office which was full of smokers was causing him some discomfort.

I have learnt from this that stress can cause all sorts of symptoms - and that when specialists say there is nothing wrong with the patient, what they mean is they don't know what is wrong - and frequently have not looked beyond the physical in their considerations. - by email, NZ

Further reading: Benign sleep myoclonus of infancy mistaken for epilepsy http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1125884/?tool=pubmed

Differentiating between nonepileptic and epileptic seizures. http://www.ncbi.nlm.nih.gov/pubmed/21386814

Bear stole my husband's heart. At the animal shelter, Dan saw Bear going through his obedience commands and fell in love. We took Bear home on January 18, 2001, and he promptly stole my heart too. Bear had his first seizure in September of the same year. The vet said it could be a 'one off," so we waited. We hoped that the terrifying Grand Mal was a 'one time only"; no such luck. A cluster of 2 GMs, a month after the first, had us back in Dr. Shelton's office and Bear starting on Phenobarbital. All this time, we were feeding him Science Diet. Bear began to gain some weight on the Phenobarbital, so we switched him to Science Diet Weight Control Formula; the seizures just kept coming. We fell into a 7 to 10 day routine, with some variation, but not much.

I found the Guardian Angels website. After a lot of reading, I decided to try the homecooking. I put him on the Healthy Adult Diet. What an amazing change! He went from a seizure cycle of bad clusters every 7 to 10 days to a 43 day stretch seizure free. At the end of that 43 day run, he had one, only one, GM. That was just the beginning of the benefits Bear has reaped from this diet. That extra 5lbs that we couldn't get off him just melted away, he stopped grazing and now licks his bowl clean, and his coat is puppy fur soft and so glossy. Bear's vet says that Bear eats better than he does.- Mary Kearney http://canine-epilepsy-guardian-angels.com/healthy_diet.htm

I contacted you in 2002 when my daughter was 4, and seizures started out of nowhere and we couldn't get them to stop - she had 4 seizures with fever between age 14 months to 3.5 years. Then at age 4.5 years she had a 7 minute seizure without a fever. Eight weeks later she had multiple daily seizures. Nine months later we were on our third med, and she was only continuing to escalate every 5-10 days without seizure control.

You told me that if she was chemically sensitive then the drugs the doctors were recommending may make her worse. So I put her on both the failsafe and ketogenic diet, and her seizures stopped! Thank God!! And thank you!!! Well, she was on the ketogenic diet for 4 years, and near the end the dietician wanted me to put her on carnitine, I emailed you and Howard said it was an amine and so I didn't use it. (It took the dietician years to admit it was the right decision – though she has been an amazing support in helping to create ketogenic failsafe meals!) Three months later we were able to successfully wean our daughter off the ketogenic diet, and she has remained seizure FREE!

She is now tolerating sals but still failsafe re: additives and amines. She gets twitches and jerks at night when she has amines, to varying degrees and in direct proportion to the amount of amines ingested.

Thank you a thousand times over and over again, failsafe eating was key to saving her life! (She was so ill that she had lost her reflexes—if she tripped, her hands didn't even come up to protect herself). She is now almost 14 and thriving!!!!!) – by email, Canada

I thought you might be interested in this story from our group. One of the boys was exhibiting forgetfulness, inattention and memory lapses so noticeable that he was referred for brain investigation of suspected epilepsy. However, he never reached the tests - he stopped eating preserved bread first, and his problems stopped. – by email, Victoria

I have a 2 year old son whose diet I have recently changed due to the behavioural problems that we were experiencing with him. My son was a big bread eater. While I was pregnant with him I was eating 10 slices of bread a day with 282 bread preservative and by the age of 18 months my son was eating the same amount. He was always a very difficult sleeper and has been having seizures since he was 18 months old. Since changing his diet to preservative free bread , he has gone from a monster to a reasonably placid child, he sleeps well, and his seizures have improved remarkably. Update: in the last 6 months he has had only three seizures. – by email, NSW

When the doctor recommended ADHD medication for our 4 year old daughter, I was reluctant because she was already on high doses of epilepsy medication. Instead, we decided to try the elimination diet. Her behaviour improved out of sight and her general overall health improved ... changing her epilepsy medication to colour and flavour-free was harder than it seems as most kid size doses come in flavoured syrup. – by email

I am scared for my friend and her one year old breastfed baby. While she is breastfeeding, there are many times when the baby seems to "clamp down" on the breast and briefly stay motionless. Doctors have only recently suggested that these episodes are actually seizures. My friend is addicted to a particular red soft drink (artificially coloured of course) and drinks several litres per day. Could this cause the problem? She refuses to give up this drink and doctors are now saying there could be permanent brain damage. – by email

We have been additive-free for over a year. We were able to drop my daughter's epilepsy medication and she enjoyed more than a year trouble-free until experiencing a seizure after eating Strepsils throat tablets during a cold. A call to the pharmacy revealed that all Strepsils tablets contain artificial colours and this particular product, Honey and Lemon, contains Quinoline yellow artificial colour 104, not permitted in Australia (at that time), and not listed on the label. – by email

(After this episode I complained to the TGA that Strepsils with an unlisted artificial colour not permitted in Australian food could be purchased from supermarket shelves next to foods that require artificial colours to be listed on the ingredient label. The TGA official who took my complaint laughed. Soon afterwards, quinoline yellow 104 was approved for use in Australian foods – and colours either artificial or natural still don't have to be listed on the labels of pharmaceuticals according to TGA regulations. – Sue)

I've done 14 day of strict elimination, and am now doing the salicylate challenge.

So far, I have had relief for so many symptoms, the main one being a 'drugged' feeling in the morning, even after 10 hours of sleep ­ felt I needed another 6 or so hours..... Within a few days of starting elimination, this ridiculous lethargy is GONE! My 18yr old daughter has the same symptom, and inspired by my result, she is now doing the elimination diet also. She has also had relief from feeling 'drugged', after a few days.

My biggest triumph is with my bladder though. All my life (I'm now 45), I've had a dodgy bladder ­ urgency and frequency. Often managing to produce only tiny amounts of urine, but have to go NOW. The embarrassments and shame I've endured over the years.....

Anyway, at the end of the first week of elimination diet, I noticed that my bladder was less sensitive. Those 'urgent urges' still come sometimes, but I can hold them off and not have to go to the toilet 3 times in one hour after a cup of tea. My bladder capacity seems set at 250mls though ­ not a lot. At various times, I have tried to do bladder training, which aims to increase the capacity by holding off a bit longer, then a bit longer to 'stretch' the bladder. With my extra-enthusiastic bladder muscles, I just could not manage to do this.

Right now, it's happening! I feel I have some control over my bladder.

I'm hopeful that it will improve more over time, but if it doesn't, I'm very very grateful for the improvement I've had ­ cannot tell you how much this condition has affected my life ­ always looking for a toilet, going 'just in case', embarrassing accidents etc. Bit reluctant to do any challenges, for fear that my bladder will go backwards, even if it's only temporary. But I need more variety of food!

Many years ago, a urologist told me that he couldn't help ­ I'd had all the tests and investigations etc already ­ and he could find nothing physically wrong with me. He said that he saw 6 or 7 women EVERY WEEK with my problem. All of them had, apparently, 'nothing wrong with them'. Yet they still had urgency and frequency.

At various times I eliminated the usual suspects ­ coffee, chocolate, alcohol ­ to no improvement.

No one ever suggested that it was the normal, healthy, every day foods I was eating that might be the problem. I cannot believe it has taken me this long to stumble on a solution and reclaim a part of my life previously spent crossing my legs, rushing rudely away from conversations, desperately hunting for a toilet, desperately queuing for the toilet, weeing in all sorts of embarrassing places due to lack of toilet, actually wetting myself and having to clean up and change clothes, and on it goes endlessly.

I know it is early days yet, but I am just so thrilled to have had the improvement I'm experiencing.

Thank you so much Sue, for your excellent work ­ I will be forever grateful. - by email

 

Our baby was waking up to 15 times a night, but Tresillian wasn't for us, it was too harsh, it wasn't doing anything. We were supposed to stay until the Friday but we left on the Wednesday. They are supposed to help mothers with new babies but they don't seem to know anything about salicylate sensitivity - there were numerous similar complaints on the Fedup Roadshow 2012.

My son was recently admitted to hospital due to an asthma attack. While in hospital he was regularly given icypoles to eat. When I read the label, I discovered these contained two preservatives and two artificial colours (even though the asthma pamphlet they hand out in the hospital says to avoid preservatives and artificial colours?!) After I stopped the icypoles his asthma improved and he was able to go home. I have put in an official complaint about this. - by phone on radio

Update by email: I need some advice about how to tackle the completely inadequate response to my official complaint to the Women's and Children's Hospital here in Adelaide. I complained about their use of ice blocks loaded with artificial colours and preservatives (I spoke to you on Belinda Heggen's radio show on 5AA briefly about this). I received a letter from the head of the food services department saying they were reviewing their use of these ice blocks but I smelled a rat and rang the complaints line back again. They then rang the head of the department for me and confirmed that they had no intention of removing those ice blocks from use in the hospital (even though the asthma pamphlet they hand out in the hospital says to avoid preservatives and artificial colours?!) but they are apparently reviewing how many they give to children (my son was given 4 ice blocks in under 24 hours).

I find this response completely and utterly inadequate and I'm not prepared to accept their answer to my concerns. So I'm wondering if you have any idea how I can fight this and get them to start using ice blocks that aren't full of colours and preservatives? - Katherine, Adelaide (suggestions from readers are welcome, email This email address is being protected from spambots. You need JavaScript enabled to view it.)

My mother-in-law suffered from three years of intensely itchy rash, consulted numerous medical specialists and tried everything from lotions to laser treatment without success until she found the Ribo Rash factsheet on your website, removed all products with 600 number flavour enhancers such as stock cubes, packet soups, instant gravy and sauces - from her pantry - and her rash went away. When she confronted her doctor about it, he confessed he had never heard of 635 – from Fedup Roadshow 2012

I am an RN (registered nurse). I run an encopresis and continence clinic and am interested to hear more about what you describe as 'sticky poos'. I obtain great success with her management methods, but I currently have a case where the boy's faeces are so sticky it's like a layer of wallpaper on his bottom." (We would regard this as due to food intolerance – most likely salicylates - and would expect to see the problems resolve completely on the elimination diet) – from Fedup Roadshow 2012

I am a midwife. I came to your talk because of what I am finding with my clients. Those who are having second babies have often left it as long as possible because their first babies were so difficult - crying and unsettled for hours at a time, and sleeping poorly. It seems to be increasingly common. As a nurse, we tell them to eat everything in moderation while breastfeeding but I realise now they may need some more information – from Fedup Roadshow 2012.

Thanks to your book Fed Up I discovered at the age of 17 that my chronic hives were due to dietary salicylates. But it wasn't until I inadvertently took an aspirin tablet at the age of 25 (it was the first time I'd ever taken aspirin - in the UK they are packaged to look the same as a paracetamol packet) - that I realised how sensitive I am. As well as the usual hives, my face and throat swelled so much I had to hold my head right back in order to breathe. (WARNING: salicylate responders beware: it is possible to die from one aspirin tablet. If this happens to you call an ambulance or have someone take you to the nearest ER as quickly as possible.) – from Fedup Roadshow 2012

When I was a little girl, my brother had severe epilepsy with many seizures every day. When my mother finally started us on an additive free diet on her own initiative, the number of seizures dropped by 75%. My brother was able to come outside and play with me for the first time. But it was too late to prevent the brain damage that had already occurred and he ended up in an institution – from Fedup Roadshow 2012

"I developed this terrible itchy rash six years ago. The doctor doesn't know what caused it. He just gives me steroids but it doesn't really help. Sometimes the rash drives me mad ...Yes, I do eat BBQ chicken once a week. No, I've never heard of ribo rash." - senior at a roadshow 2012 talk

WARNING!!! This sounds like a typical Ribo Rash due to ribonucleotide flavour enhancers 627, 631 or 635 used in "chicken seasoning" on the skin of BBQ chickens and many other foods - the rash is delayed and can last for a week, making it seem like a chronic rash not a food reaction - however, we are now receiving the same reaction reports due to cooked chickens with chicken seasoning additives "yeast extract, natural flavours" so it seems manufacturers have found a way to avoid listing Ribo additive numbers. See our Ribo Rash factsheet http://fedup.com.au/factsheets/additive-and-natural-chemical-factsheets/635-msg-boosters-ribo-rash-ribonucleotides-627-631

A few weeks ago I developed burning red spots like tiny bee-stings all over my face, also my mouth and tongue are burning so much it is hard to eat, my tongue feels a bit swollen and even my ears feel a bit the same. People who don't know me just think that I have red cheeks, but I don't normally have red cheeks, and the burning sensation is really painful. I also feel like I have a bit of asthma (I never had asthma as a child). The only time I've had anything similar was when I tried a bite of my boyfriend's crab in an expensive restaurant and straight away my lips started swelling and tingling. I went to a doctor but she just said it was a bit odd and prescribed an antihistamine. The pharmacist said the prescribed antihistamine was old fashioned and recommended a different antihistamine and said I should carry it with me at all times.

I read the Ribo Rash factsheet on your website and thought about everything I've eaten - for each of the last two weeks I've bought a cooked chicken from the supermarket, eaten over several days. I've eaten these before, but it turns out they are now adding seasoning with "yeast extract, natural flavours". I complained about that and they just said it's not them doing it, it's the suppliers. A few days ago I had a meal of tinned salmon and plain rice - I've eaten hundreds of cans of the same product for years with no problems - and the burning seemed to get worse. Now I'm scared that I may have developed an allergy to seafood. I'm 44 years old and before this happened I was perfectly healthy. Now I'm scared to eat anything in case I get worse. - Liz, NZ

(Comment from Sue Dengate: we have previously remarked about the way ribonucleotide flavour enhancers seem to bridge the gap between allergies and intolerances. We have recently received similar reports of reactions to products with an ingredient listing "yeast extract, natural flavours" and wonder whether manufacturers are now hiding ribonucleotide flavour enhancers 627, 631 and 635 under these descriptions. Also there have been reports from consumers who have developed true allergies after being exposed to these flavour enhancers. Ribonucleotides are known to stimulate the immune system - it's good to a certain point which is why they are added to infant formula in small amounts. However, this is a possible mechanism for the development of true allergies - which are basically an overstimulated an immune system - and could account for the rise in allergies in Western societies. Had a similar experience? email me at This email address is being protected from spambots. You need JavaScript enabled to view it.)

My classic symptoms are fatigue and pain as well as massive muscle spasm where I get severely "locked up". My muscles go rigid (praying mantis style), mainly my arms and legs are affected. Sometimes even my facial muscles and tongue when it is severe. I can't walk or feed myself when this happens. It happens in degrees and lasts for different lengths of times. Sometimes just my fingers and toes curl. Always my muscles spasms are preceded by pain and almost always severe fatigue and a fuzzy head. When they are really bad I also get tinnitus. My hands go red and hot and very sensitive.

My muscle spasms have been heavily investigated by numerous neurologists - and I mean, numerous! - 20 at a hospital movement disorder clinic and another 5-6 independent ones. When I didn't fit into their pigeon hole definitions, I was then referred on three occasions to 3 different psychiatrists. They all pronounced me mentally healthy except one of them said, "That since there is no known neurological cause for my spasms, that he must conclude that it is psychological" and that I should just demedicalise and try and get on with my life.

When a friend recommended the RPA allergy clinic, I was adamant that food could not cause such a drastic reaction and I started the elimination diet extremely skeptical and determined to prove them wrong. Now I realize that I've always had some food intolerance (family history) as a young child when I used to get aching legs and be so extremely hyperactive at school that the teachers would send me for a run around the school grounds before they let me sit in their classes even in Year 12! Two bouts of glandular fever (at 18 then again at 21) then lowered my tolerance even further.

Since the elimination diet, I've discovered the main triggers are 282 [preservative calcium propionate used in bread] and MSG [flavour enhancer 621]. In 1.5 hours flat after ingesting bread preservative I am in severe spasm with all my classic symptoms! MSG has about a 3-4 hour time lag. The spasms used to last 30 mins - 1 hour (basically till my muscles fatigue) but now that I've virtually eliminated the diet factor and I am so much better and fitter, when I do accidentally eat 282 or MSG then they can last up to almost 4 hours full spasm. My husband doesn't have a hope of moving my arms or legs, they're so rigid. He said that even if I tried myself I could not be so strong other than when I'm in spasm.

Salicylates cause my hot hands and pain but have a delayed effect causing me to spasm only after a while (2-3 days). Amines also have a delayed effect, first causing hyperactivity/insomnia then pain but rarely spasm.

The elimination diet has improved my quality of life so, so much and has introduced an element of control to my life that I haven't had for 8 years. I feel amazingly lucky to have stumbled upon this as the answer! - Tessa, NSW (story received in 2004)

I just had parent teacher interviews and my son is a different kid since being failsafe. Last term he was described as rude, cheeky, wired and running amuck! Now he is a pleasure to teach and has beautiful behaviour. The rewards of the diet are fantastic! Nadine (facebook group)

Thank you once again for the work you two do. I honestly don't know where I would be if I hadn't discovered your website and found your information. I refer to it constantly in my efforts to find a healthful diet I can tolerate. - Susan by email.

I can't thank you enough!! What you are doing is fantastic and you are making a real difference. Thank you.- Sarah by email

My son is on the 'failsafe' program - day 2 and he has been the happiest, most contented 5 year old boy I have seen in a long, long time. – Tracey from facebook group

I have had to take photos... six kids in a house... and SILENCE????? that was my realization after about 3 weeks FS.... playing quietly beside one another....(4 weeks later) just have to celebrate a success... after 7 weeks FS... my previously fruit addicted 4yr old fussiest princess has finally eaten, yes relished, a PEAR! (she has totally refused, gagged, and melodramatically drama-queened her way out of eating virtually every food we have offered her for the whole 7 weeks aside from weetbix). last night i gave her a frozen pear popsicle.. and today she at her lunch box pear at the sitters! came home to declare.. Mum, I LOVE pears, they are so juicy and so sweet.. can i have one every day? and then ate chicken, potatoes and brussel sprouts for tea.... offer offer and reoffer. it works.... (eventually! LOL) – Ries from facebook group

My name is Shane Anthe and I am the chef at Grandma's Place childcare centre in Sarina. I attended your Rockhampton talk 3 years ago. I wanted you to know that we offer additive free, healthy, home cooked meals for the children. Low salicylate or allergen free options are available on request. The kids who are unruly when they start, calm down within 3-4 weeks." www.grandmasplace.com.au  - from Fedup Roadshow 2012

"We started failsafe eating several years ago after going to the pharmacist with a script for Ritalin for my son. The pharmacist refused to fill it. He said 'for oppositional defiance, you need to read this book and look at food'. It changed our lives". - from Fedup Roadshow 2012

Thoughts on "loud voice" - took away breads with 282 preservative and huge difference in volume and improvement in speech for my son. Also we avoid 160b, colours and additives generally....he has no idea he is talking loudly. – Jennifer from facebook group

My encopresis/megacolon/chronic constipation/overactive bladder 5 1/2 year old always talks super loud too, more and more great reasons to celebrate that we are finally trying a supervised elimination diet!! – Michelle from facebook group

Oh yes, when my son has had the "bad additives", LOUD voice is definitely one of this symptoms. Along with whiny higher pitched voice. That is a sure indicator to us that he has ingested something he should not have. – Sally from facebook group

I have a hearing impaired son, had hearing aids for several years. He has the loud voice thing. Thought it was all part of his disability, until failsafe! He now speaks normally, and the first sign of a reaction is the voice! He also is on soy, the only thing that I can't change, as he seems not to tolerate any other milk substitute... tried every one, and gets awful diarrhoea and leaking .. not fun when you are 8 and at school! I think the loud voice is very related, and I DO have a hearing impaired child ... also i am frustrated as all my soy kids have been long term bedwetters! and the non soy kids not so... we are currently RPAH elimination diet, and the compulsive speech also disappeared in this child, he hardly talks and is calm and listens better, and the youngest who is 2 has had a really odd reaction to removing all the additives...we were able to understand him finally!- (he was previously diagnosed with a speech delay) yet when he accidently had a flavoured drink from a guest... his speech reverted to gibberish again. It happened after a banana, given by a babysitter, and again when an additive was shared by a relative! three times in three weeks, we 'lost' his speech for about 5 hours.... ! (and got all the other behaviours).. so there is definitely issues with the speech centre of the brain, not just hearing issues why they speak louder... at least in my family! – Ries from facebook group

Sals and amines do it for us, as well as the additives. When we are very strict with only a few foods his voice is normal. – Susan from facebook group

My son has always had a very noticeably loud voice which has annoyed many of his teachers and i have had his hearing tested and had him tested for auditory processing all of which he has passed. Its not until we went failsafe that we noticed his voice is now always normal, the big improvement came from removing all artificial colours, preservatives and flavours but now if he has too many sals he gets quite loud again and then we know to cut him back, his concentration and energy levels seem to go hand in hand with it too.- Lee from facebook group

That is our son to a tee. If we stay low everything his voice is pretty normal. If we let a bit of mod sals creep in the voice is one of the first things we notice. If he has more then we notice the reaction and silly behavior as well as testy/ over emotional. Also energy and concentration.- Susan from facebook group

I have started on the diet, currently supported by the book and recipe book. So far it is quite delicious despite the lack of our usual foods.

I have been forced to be free of preservative 220+ and flavours 621+ for over 8 yrs now because of debilitating migraines. My children exhibit various learning and attention difficulties which are inconsistent in nature (think Dr Jekyll and Mr Hyde). We suspected the little one to have Sandifers (Sandifer syndrome is a paediatric medical disorder, characterised by gastrointestinal symptoms and associated neurological features) as a baby so I went Gluten and Dairy free to help with that and it worked a charm. However I could not figure out if it was the much cleaner diet or the Gluten or Dairy that were a problem. He reacts to flavour enhancers with rashes and difficult behaviour.

Through all our various issues I have had almost no help from the medical profession and when they were trying to help it was usually with reluctance and a lot of talk about how stressed I must be. My hormones, migraines, restless legs and anxiety were always put down to some psychological problem that I knew did not exist. I even had a workers compensation neck and shoulder problem that my then doctor decided was due to stress and not the work desk that I was at. So I have had a gutful of the medical profession and am wary of shelling out more money to specialists.

When I read your book (referred by a friend) I was amazed. It was as though all my symptoms and the boys symptoms were also problems shared by many other people and not a result of my over active imagination. I had suspected our diet for a long time but could not pin it down. I am so grateful just to know that I am not alone in this.

(One week later) On rereading what I have told you it is crazy to think of the issues that I have not even touched on.

This is our second week Failsafe and the seriously awful headaches from the withdrawal seem to have stopped and I am feeling energetic again. I have had a nice comment from the teacher about my middle child - he is being looked at for Asperger's (seriously difficult behaviour) and I thought it would be better to try him on the diet before the $1000 psychologist visit in November.

The Sandifers is hardly ever diagnosed I think. Many of my friends had babies that had similar symptoms but were all told they had either reflux or torticollis. I watched one friend's baby who seemed normal on waking but as soon as she fed him the neck would twist to the side just like my baby had. She asked her health professionals about it and they either had not heard of it or discounted it completely. I think that is so terribly sad.

I will get on to a dietician to start the supervised reintroduction of foods. However the amount of support you have provided is so good we hardly need it.

Keep up the great work – you are making a difference! - Shannon by email.

I am a cook in an Aged Care facility and I am trying to implement an additive and preservative free diet for the home. After observing the effects of failsafe eating with my stepson who suffers from Oppositional Defiance Disorder I am a convert to the cause. - Chris

I am a geriatrician and wondered if the effect of food additives has been studied on Alzheimers patients, due to a porous blood-brain barrier – from the 2012 roadshow

(Comment by Sue Dengate: Interesting question! See our factsheet dementia and the elderly There is evidence that food additives actually alter blood-brain barrier permeability: Nemeroff CB, Crisley FD. Monosodium L-glutamate-induced convulsions: temporary alteration in blood-brain barrier permeability to plasma proteins. Environ Physiol Biochem. 1975.http://www.ncbi.nlm.nih.gov/pubmed/1213027 )

More Articles ...

  1. [1134] Not just about children (September 2012)
  2. [1133] Food additives and dementia in the elderly (September 2012)
  3. [1132] Salicylates: Irritability due to daily aspirin in the elderly (September 2012)
  4. [1131] Gout from strawberries (September 2012)
  5. [1130] Probiotics led to gluten tolerance (September 2012)
  6. [1129] Kefir helps with irritable bowel but amines lead to high blood pressure (September 2012)
  7. [1128] Depression and food: "rolling fits of blackness came over me" (September 2012)
  8. [1127] "I had no idea what was causing the headaches, foggy head, and ringing in my ears" (September 2012)
  9. [1126] "Becoming more and more immature, naughty, silly and unable to concentrate, with only selective listening" (September 2012)
  10. [1125] Conduct Disorder -hitting/kicking/swearing/yelling/pushing - gone (September 2012)
  11. [1124] How to get blokes involved in the diet by a supportive stepfather (September 2012)
  12. [1123] 160b: Annatto migraine due to white magnum (September 2012)
  13. [121b] 282: Reactions range from temper tantrums to very moody
  14. [1122] Forgetful and stomach cramps on FODMAP elimination diet (August 2012)
  15. [1121] FODMAP diet made my gastro symptoms so much worse (August 2012)
  16. [1120] Amines really affect my 14 year old's mental health (August 2012)
  17. [1119] Night terrors gone (August 2012)
  18. [1118] MSG and others: my heart could literally be felt beating through my clothes (August 2012)
  19. [1117] One-liners after Fedup Roadshow (August 2012)
  20. [1116] My eating disorder (Bulimia 1-5 times a day and Binge Eating every day) has stopped (July 2012)
  21. [1115] PDD, ADHD, anxiety disorder, borderline anorexia nervosa (July 2012)
  22. [1114] A link between additives/salicylates and anorexia (July 2012)
  23. [1113] "I felt like a magician" (July 2012)
  24. [1112] One-liners (July 2012)
  25. [1111] Jekyll & Hyde from Dimetapp (July 2012)