A dietitian put me on a simplified version of the RPAH diet 9 months ago. I'm fine on a very restricted diet, but am finding that fumes (strong flowers and incense) are immediately producing the same symptoms. As a nun, there are times when I can't avoid them. Do you have any experience with nose filters, which I see advertised on the internet (I was looking at the First Defense Nasal Screens). I wondered if they would do the trick, and enable me to be exposed to some fumes without being hit by the ghastly symptoms. It would be great if they work, as I’m currently having to sit outside our part of our Chapel for Mass when the priest uses incense, and I’d much rather be inside. (Even so, I can still smell the fumes in the room almost 24 hours later, and it is affecting my health for the rest of the week ­ brain fog, fatigue and sometimes a migraine too.)

Two months later ... Good news! The nasal screens have worked really well for me. I’ve been able to try them 5 days in the past week. It took some getting used to putting them on correctly so my breathing wasn’t impeded, but I’ve improved with practice. I have been able to remain at least an hour in a room with incense, strong solvent glue, and even clean the brass with Brasso, all with no ill effects. During that week I had one day when I was exposed to Pledge furniture polish for about 5-10 minutes and didn’t have the nasal screens on. The result? Within minutes I was confused, unable to think clearly, rather irrational, and then wasn’t up to doing much for the next day or so.

I’m really delighted with the result. It means I should be able to safely make a trip to an important meeting in Australia, which I was a bit apprehensive about, as the thought of being in a planeload of perfumed bodies didn’t exactly please me. If anyone else has a really bad scent sensitivity that is preventing them from doing important things, I would recommend they give the nasal screens a try. The manufacturer said you can actually wear a pair for up to 24 hours ­ I haven’t needed to try that, as I can usually control my exposure, but I did have them on for nearly 13 hours one day.

I eventually obtained mine through the US Company, as the Australian Distributor didn’t reply to any of my emails. They only took 5 days to get to me in NZ, so that was fine. - by email, NZ

I recently took my 97 year old aunt out for dinner at her local bowling club. About half an hour after eating, she suffered an attack of a severely itchy rash that comes and goes and was diagnosed a year ago as shingles. I checked with the club and sure enough there was 635 in the gravy she had eaten (in a catering flavour base called beef booster). I also found out that she regularly eats canned soups with 635. It seems to me that the 'shingles' could be ribo rash, but trying to explain that to her is difficult. When she was born in 1916, canned soups and gravy were safe to eat and doctors were gods whose wisdom was not questioned. – Sue, NSW

See also factsheet on adults and food intolerance

I'm 22 years old and have always had issues with anxiety, and since I was in my early teens I've suffered from bowel problems. I saw a doctor about it a few years ago who diagnosed me with IBS and said there wasn't much I could do. I was put on the fodmap diet and saw some improvement, but my anxiety seemed to get worse. Then my Mum told me about you because she had some kids at school trialling the diet to treat their ADHD.

I bought your book and I felt like you were writing about me and my family! All of us have symptoms of food intolerance: my sister who is hypoglycaemic and prone to mood swings and my brother who is withdrawn, quiet and unmotivated. I could relate to so many of the symptoms: reflux as a baby, constant ear infections as a child, anxiety and OCD habits (handwashing, wringing my hands etc) and in my teenage years I felt distracted, foggy brained, unmotivated and developed depression in my last year of high school.

Since I've started the elimination diet there has been a slow improvement, and it wasn't until I considered everything together that I realised how much better I feel. I could go on forever with the improvements! I don't feel drunk or dizzy anymore, I don't take 5 wrong turns when driving to the shops (used to happen all the time), I can concentrate at uni and feel more awake, I am calm and so much happier, don't snap at my boyfriend over silly things AND my stomach cramps and bloating are gone: I have normal bowel movements for the first time in years!!!! My boyfriend has been really supportive and did the diet with me, not expecting much. I saw changes in him from the first week- he is happier, calmer and more enthusiastic about life. He even said to me when we reintroduced sals that he felt like his patience got much shorter and he had trouble sleeping.

I've only done two food challenges so far: I tested dairy first, since I had thought for years that I was lactose intolerant, and passed. I've just completed the sals challenge and it seems to be a culprit. I went for a week feeling fine, though I did have a little bit of dermatitis on my hands and a day where i felt sad and a bit hopeless. I kept on because I wanted to be more certain, and it didn't take long! From around day 8 I felt tired, distracted and 'drunk while driving' again, I slept over 10 hours each night but woke feeling exhausted, snapped at my boyfriend over nothing and had trouble controlling my body temperature, like I had a cold. It has taken me around 3 days to start feeling better, but I am already feeling more lucid. I'm just so excited to finally know where to start to feel better :) Finding out about the RPAH elimination diet and the Food Intolerance Network has made me realise that feeling like a drunken sailor every day is not "just the way I am" and that it is possible to have a fog-free brain and a calm, happy life! :)

Thanks so much Sue, for everything that you're doing to help people feel well, and helping kids to avoid a life of medication and labels! - Isobel, by email

We were previously struggling with our eldest daughter, she was five at the time and we were concerned about her difficulties sleeping and her behaviour. As a baby she was quite unsettled, something we didn't realise until our second daughter was born and actually settled and slept well, showing us it was possible!  Due to family history of depression I was also worried about my daughters' future and began reading to find out if food could be an answer.  We originally went almost sugar free for one year and saw some improvement (most likely due to cutting out most fruit and making most food from scratch) but knew there was more going on.

We discovered Failsafe 14 months ago while we were spending almost a year travelling Australia, I cried reading the story of your little girl, she sounded just like ours in many ways.  Following Failsafe our little girl started going to sleep at night, her extended meltdowns disappeared, she played nicely and didn't overreact to little problems, she came out of a fog and listened to us, she slept at night without nightmares, she didn't cry when her sock was twisted inside her shoe!
Doing FS while travelling in our camper was great- no invites to birthday parties, no school, we just ate our own food and could watch our little girls as we challenged- dairy in Broome, Sals in the Kimberley, Amines at Uluru. Our eldest daughter and myself failed the same things (sals, amines, glutamates) and our youngest daughter and dad passed them all.

Our daughter has now started school and is thriving, pre-FS I didn't think she would cope with school. So many little and big improvements have occurred for our daughter and for myself that we are only reminded of them now when we make a mistake with our food.  We also returned home from our trip pregnant, conceived naturally (we had previously needed fertility treatment) and have a new baby boy.

We credit Failsafe with changing the whole dynamic of our family, our kids are still ratbags at times but they respond to discipline now and we are not despairing of how to raise them, we are enjoying them so much - Bonnie by email

Our family had a brief encounter with the elimination diet in the mid nineties and then another longer one some time after 2000. Never supervised. We considered ourselves to be living a healthy lifestyle, eating lots of fruit and vegies, enjoying an alcoholic drink at times but not excessively and we all exercised regularly. Food additives ended up on the forbidden list. Energy levels were really on the low side for our age but that only made us try harder to live the way we thought health should be achieved. Of course there were some other problems too but they weren't very big or we just never got to the bottom of them and had given up really. Yes, we had eliminated salicylates from the diet at some stage but it looks like we missed the changes in ourselves. Perhaps a supervising dietician would have been able to keep us on track.

More than ten years after the first attempt at the diet, in order to cope with the stresses of my job, I decided that I would eat only fruit at lunch times, lots of healthy oranges and other fruit. A fair bit of fruit really because I was exercising about 2 hours every day as well. In the evening I cooked heaps of tasty vegies (taste means often high in salicylates) ...

A week later, I happened to meet a young lady and we had a chat. Later on in the week I met her again, just before she headed off to live 600km in one direction. At the end of the week I was off to live similar distance in the opposite direction. Again we had a chat.

A few days after the last encounter with the young lady I kept thinking about her. On the first day this seemed a bit amusing, like being in love but it was getting stronger and stronger and soon a reality check happened. What the hell am I doing?

1. I am a married man with children, I don't need this.
2. I hardly know anything about her, we had two brief chats and at the time I wasn't really terribly interested. Nothing happened between us.
3. She never showed an interest in me, this is just fantasy.

It got worse and worse. My thoughts came back to her all the time. Every 5 minutes of every day for the next 15 days. I saw her face, went back to the relatively few sentences we exchanged, went over them time and time again. Going around in circles. It happened during the day, when going to bed and it was also the first thing I thought of when waking up in the morning. Everything reminded me of her. Strong feelings were boiling up in me, automatic and unstoppable. Emotionally I was on edge. It was hard to concentrate at work, it was hard to listen in meetings. It was getting between my family and me.

There seemed to be no end to it. I had lost control but I could not explain why, which of course made it worse because I could not do anything about it. I was eating healthy food, exercising heaps, cut out the last alcohol because life was troubling me already as it was. No coffee, no tea, no additives, no smokes. I felt that I was close to going crazy or was I crazy already? I used to pride myself on thinking logically and having a very practical outlook on life. What had happened to me?

The move at the end of the week to another town brought a change in diet with it. Still a fair bit of fruit, but less. My brain got marginally better but would still be bad for another 12 days. By that time Sue's DVD "Fed Up with Children's Behaviour: how food and additives affect behaviour" had come in and I watched it several times. Then the penny dropped, perhaps it was salicylates? Perhaps we had missed salicylates the first two times playing with the elimination diet. I cut fruit out of my diet immediately since I was desperate to get back to normal. It took another 2 plus weeks before I started to consider myself normal again. Other things improved too: singing voice better and more consistent than ever, sticky poos less of a problem, sleep improved, bloating reduced, feeling of incomplete evacuation reduced.

This was the closest encounter I've ever had with a run-away brain. Needless to say, it was not a constructive part of our marriage, however, we have survived. This story embarrasses me extremely but perhaps others can benefit from it ... - by email

I am reporting a reaction to a can of Campbell's "Chicken & Corn" condensed soup. The flavour was very pleasant, but an hour or so after consuming it, I developed a very unpleasant headache and eventually felt ill enough to go straight to bed without my usual shower. I was O.K. by next day and didn't develop a rash. My wife, who also enjoyed the soup, was untroubled.

The can was marked in bold type as having no MSG, but I found "Flavour Enhancer (E635) in the list of ingredients. I phoned their Customer Service line and they were quite sympathetic but pointed out that they did list the flavour enhancer amongst the ingredients. As indeed they did, and spelled-out too, not disguised as a yeast extract or something similar. I expressed my opinion that it was somewhat deceptive, though, to label the can as not containing MSG when it did contain a close relative.

A survey of their other soup varieties seemed to show that anything with chicken in it was liable to also include E635, but the vegetable soups such as Cream of Pumpkin, Celery, Asparagus etc were free of it. - Dennis aged 87, by email

Both of my children both suffered from eczema. My son was diagnosed as infantile eczema at 10weeks old. I had discovered that before failsafe that what affected his eczema was lactose, legumes, nuts and coconuts. I had his skin perfect before going failsafe for his ODD and Hyperactivity. Seems that allergies can play a huge part in eczema so I have found. Now, that he is not on failsafe anymore, I have noticed he gets really severe eczema in the creases of his elbow and behind knees. I have put it down to 635 as he works at McDonalds and eats more junk food.

My daughter had milder type of eczema so wasn't too much of a concern. However, when she started eating more junk foods, she started with a small itchy red rash on her leg, then it spread to both legs, moving upwards towards her face. I had a suspicion it was 635 that did this. It was still getting worse even though she had stopped eating anything with 635. She took oral steroids, but as soon it wore off, it came back again. I took her to my appointment with my allergist and he had a look at her legs and said 'reactive eczema' and to eat 'what your Mum eats' to get it down. I had already done elimination diet many years ago with my daughter and found that glutamates and high levels of salicylates affected her. So I simply just cut out the salicylates and glutamates and within 2 weeks the rash had gone. She then slowly introduced the salicylates again and tries to avoid glutamates as much as she can. She can now pick it if she eats something that has 635 as she gets extremely itchy legs which bleeds - Teresa, Victoria.

I would like to say a very big thank you for helping change not only my son's life dramatically but in turn the whole family.

Last year I put my eight year old boy onto your elimination diet. Before the diet my son was in trouble at school every day, he was argumentative, angry, hyperactive and overall his behaviour was negative and every day was a huge struggle. After discovering that he reacts severely to preservatives, colours, salicylates and amines, his overall well being has completely changed.

Not only is the household a much more calmer place now, also so is his class room. He would of been considered to be one of the naughtiest children in the class but now he is achieving amazing results at school. He competed in the National Maths Competition and got a distinction (finished in the top 11 % in all of Australia), he also achieved very highly in the Naplan and has amazed his music teacher by performing songs that are way above his year level.

Not only is he a much happier boy, so are his siblings and both my husband and I. Not only has this diet given him a much better chance for a successful future he is living testimony that this diet is truly life changing.  - Paula

We are on day 13 of our elimination (not GF or DF) and we have definitely noticed wonderful behavioural differences in our 3 boys - my MIL came to babysit last night and ate our FS dinner of rissoles (filled with hidden veg!), chips, steamed beans & pear sauce. She loved it (she saw the hiding of the vege in the rissoles as well so I think she was pleased with that as well). Then when we got home, she said she couldn't believe the difference in the boys and didn't know quite how to describe it but said they were quieter, happy to just talk/play without fighting, eager to listen when having a conversation - all in all, that she fully supports us now and wants to know how she can help! She said she's always seen the sweet side of the boys nature but now it's their nature almost all the time! Thank you Bree for telling us about FS! – Eleanor from facebook group

Some of these reports came from readers after a Medical Journal of Australia article questioning the value to low salicylate diets. Details of the article can be seen at https://www.mja.com.au/insight/2013/22/salicylate-diet-claims-unconvincing

• We've noticed a HUGE difference in our son's temper tantrums and violent tendencies! - Julie, NSW

• We have been really pleased by the change in behaviour of our 8 year old son who is diagnosed with Aspergers (and ADHD). His oppositional tendencies in particular have markedly reduced - Marg, by email

• We are day 6 into the elimination diet, and having amazing results. My son (8yrs) was diagnosed with Aspergers a few weeks ago and within days a lot of his symptoms are reducing. The meltdowns are nothing to what they were. Plus, the skin rashes are almost gone too, yet we are still working on the night time bed wetting – Nicole from facebook group

• We've been on a low Salicylate diet for only a couple of weeks now and the change in my son is absolutely remarkable. For the first time this year he is having his first full day at school today. His attention-span and distractedness is still an issue, but to a lesser degree - Jo from facebook group

• The proof is in the pudding so they say and [my son] is the pudding! - Amy

• Low sals diet is "harmful"?? Who on earth did they pick for their sample? It certainly wasn't any of us! Nor any other of the thousands of very healthy, happy failsafers out there - Naomi

• No one asked me here in NZ. I've been nearly 60 yrs trying to find out what was wrong with me. Even the immunologist couldn't help. Now I have energy to burn! - Di

• Hmm bubble and squeak with rice popped chicken and pear crumble, for pudding . Philli and pear mountain wraps and boiled egg for lunch. Shocking diet. I would much rather eat processed ready meal with chips, coke and lcm bars for lunch. Ah throw a slush puppy in as well. Insert sarcasm. Yes this diet is limited but it is short term. Surely all of us are a diverse sample group with no bias other than wanting the best for our loved ones. You can keep your 5 veg 2 fruit wheat and processed marg. I will stick to my butter, pears, and cabbage – Carrie

• Just skimmed their article now, it's HIGH time there was some decent clinical studies put forward, particularly in the light of these criticisms (can lead to eating disorders?!) and the emphasis on NSW being "where these diets happen" ie a stab at the RPAH. I wish the RPAH would do their own retrospective study. Why don't they??? It's been years since they published anything at all on their work and what they do is positively life changing, not "harmful" in the slightest. I must say this study has made me extremely angry - Naomi

• They can come and study my violently sal intolerant kids. At 6 months, one of my sons cried for 8 hours after eating a small serve of mashed pumpkin. Even tiny amounts of mod sal foods like carrots and sweet potato brought on massive rashes and stomach aches. Wish sceptical people could see this stuff - Veronica

• Google "PubMed urticaria salicylates" and there is actually quite a bit there - some is food intolerance and exclusion diet but not specifically food salicylates, some is specifically aspirin, but urticaria from food salicylates is there too eg http://www.ncbi.nlm.nih.gov/pubmed/6148685?report=abstract - Tracy

• There are a few things that jump off the page to me, the definition of "harmful" is one and also the insinuation that elimination diets are linked to eating disorders. Do these "doctors" have any idea about the causative issues relating to eating disorders? Because from what I recall from the Mental Health side to my (nursing) degree, the evidence base clearly stated that they are very much linked to a myriad of non-food related issues – Naomi

• Diet success stories include recovery from eating disorders after going failsafe. http://fedup.com.au/factsheets/symptom-factsheets/eating-disorders-and-food-intolerance. I can see how an elimination diet done incorrectly or handled badly could trigger eating disorders in those at risk - Tracy

• When faced with the alternative of taking mind altering drugs long term, I'll live with the small chance of minor nutrient deficiencies from a limited diet thanks. The failsafe diet as far as I know is actually quite a balanced diet if done properly - Lydia

• This is the best thing I have done for my son . He is a new man. All I can say is that he eats 100% better and a well balanced diet than most kids I know – Tanya

See more stories and science on the salicylates factsheet

A full story collection of effects of salicylates (83 pages, October 2015)

Two stories that readily come to mind about food and speech are:

First, a new client, 4 year old boy. When I was assessing his language comprehension, which involved him looking at 4 pictures on a page, and pointing to the picture I was speaking about, this young boy merely pointed to all 4 pictures on each page, counting "1, 2, 3, 4". I honestly thought he had huge cognitive issues.

His mother rang me the following day, asking for help, reporting that he had wandered off the previous night, and been picked up by the police on the highway. At our next appt., this amazing mother had made huge changes to this boy's diet!!! And when I asked her why she was being so proactive, she reported that she was a science teacher...and it all made sense!!!

Well, within 6 months, this young boy's standardized assessment subtest scores went from 1 and 2 to 11-13...(normal limits for standardized scores being 7-13. And I am not that good a Speechie!!!)

Second, another new 4 year old client's mother handed me the Paediatrician's report, which mentioned that he had severe eczema. He was also very active!! I immediately handed her your network brochure and latest Food Additives to Avoid card.

Again...this incredibly proactive mother set about making huge changes to her son's diet. Several weeks later, as he sat and attended well during our Speech Path session, his mother reported that, as I could see, he was now sitting and listening, and was also doing as he was asked at home.

She then went on to tell me that last winter, her son had been seeing a dermatologist in Melbourne, who had instructed her to not only put a particular cream onto the rashes on his arms and legs, but to then wrap his arms and legs in wet bandages.

She reported that when she refused to use wet bandages because it was winter, she was told she was non-compliant. This young boy's mother smiled with such delight, as she told me that since making your suggested changes to his diet, his eczema had completely gone.

I have to hold back tears when I hear such wonderful success stories...especially after explaining to the parents that I have no training in this area, but am just passing on your information to empower them to make a difference – Jane, Victoria

chipsColes

I have severe racing heart after consumption of MSG or free glutamic acid. Last year I put in a complaint to Qld Health who then went to Vic Health re Coles chicken flavoured chips, with no success. The chip packet boldly stated NO ADDED MSG.

I knew MSG was in the chips (due to my heart racing over 200 bpm) but no doubt it was contained within the other 6.. numbers (ingredients: hydrolysed vegetable protein (corn), flavour enhancers 627, 631). Qld health had the chips lab tested and as I already knew due to my racing heart, found MSG in the chips but it can't be proven the MSG in the chips was ADDED separately

I am now so sensitive to glutamic acid that two months ago I had to go to emergency on 2 occasions had to be injected with adenosine to get my heart back from 238 bpm to a more normal 70 bpm. I am also on verapamil 180 sr prescribed by my cardiologist to try stop this happening. However even on the medication it has still happened twice but the racing heart doesn't last as long ... only 35 mins of 200bpm. Pff! (As opposed to 1.5hrs over 200bmp, prior to being on the verapamil). I have since started going to Emergency when this happens - when the glutamic acid is hidden - do I really want to test my heart out that much before suffering cardiac arrest!

Note this happens when MSG is HIDDEN within foods. It is such a minefield; as you never can tell where it's hidden and they don't make it be labelled. This was never a problem for me ingesting MSG till approx 6 years ago. As you said, maybe the 635 has made this worse. - by email, Qld

(Comment from Sue Dengate: in this case, the food manufacturers are being deliberately ingenuous. Of course they know they are adding MSG in the form of hydrolysed vegetable protein rather than flavour enhancer 621. The other 600-number flavour enhancers - 627, 631, 635 - are MSG-boosters designed to boost the effects of any MSG up to 10 or 15 times, so you are much more likely to be affected by those than 621. Anyone who wants to avoid MSG should avoid any flavour enhancers e.g. 620-635. This pretty much means sticking to plain healthy food and cooking for yourself, which of course is now recommended for weight loss, cancer prevention and a whole host of other health problems.)

This week our son turns 21 and starts his 4th year of a BE(Hons) Bachelor of Engineering Degree.

We have come so far from when he was 8years old and I was reading the Fed Up Book and thinking this is us....
The teachers had mentioned ADHD and Learning Issues....in my heart I knew he was not any of these, in fact I believed him to be very smart.

A month after starting the diet without mentioning it to the school. They asked what had changed and we never looked back. He was now able to show the true little lad he was...bright, happy and friendly. Thanks Sue and Howard- you have always been there for us. We are so proud of our son and so pleased we found Failsafe. Yes at times it was a challenge, but wow look where we are now. It was worth everything it took to achieve what we and our son have.

We are very proud. We as a family know for sure that our son would have had quite a different life without FAILSAFE. His oppositional behaviour alone would have changed that. Let alone the learning issues - Linda

In a little over two weeks, my daughter is turning 21. And I have to say a big huge THANK YOU to Sue and Howard - without your first book "Different Kids" I doubt my daughter would have made it this far. Your friendship, information, help and most of all, support, have been invaluable in keeping my beautiful daughter alive. Thank you both so very, very much – Sharon

I have to tell you your books and DVD have been a Godsend! We've noticed a HUGE difference in our son's temper tantrums and violent tendencies! We have told everyone we know about you and your research. Thank you! - Julie, NSW

We have been really pleased by the change in behaviour of our 8 year old son who is diagnosed with Aspergers (and ADHD). His oppositional tendencies in particular have markedly reduced. My thinking is this is related to taking most salicylates out of his diet; however, I think I now need the help of a dietician to guide us through a more specific diet to ensure we are not excluding foods that are actually fine - Marg by email

Just wanted to say a huge THANKYOU to Sue & Howard! Have a daughter who has been failsafe for 5 years now. Though it is still really difficult @ times, she is massively improved since we discovered you by googling 'explosive diarrhoea.' Love your work, & our happier little girl!! Veronica from facebook group

Thank you for your continued referrals. It never ceases to amaze me how many people have heard of FAILSAFE and the elimination diet and are prepared to give it a go. I keep seeing fantastic results with it – from breastfeeding mothers finally getting a better night's sleep (due to more settled babies), to pre-schoolers behaving now as pre-schoolers should (rather than throwing un necessary tantrums), to adults finally feeling well and understanding what causes their symptoms after years of unanswered questions. And of course everything in between! – Dietitian by email

We are day 6 into the elimination diet, and having amazing results. My son (8yrs) was diagnosed with Aspergers a few weeks ago and within days a lot of his symptons are reducing. The meltdowns are nothing to what they were. Plus, the skin rashes are almost gone too, yet we are still working on the night time bed wetting – Nicole from facebook group

I wrote to you quite some time ago regarding rosacea. My skin is still not 100% right, although avoiding salicylates, amines, preservatives and additives certainly reduces the symptoms of flushing, itching, and red pimples. - Lyn, NSW

See Rosacea and acne factsheet

My nephew was put on the diet for encopresis and I know that it helped him - salicylates and amines to a lesser extent ended up being the culprits, but I know that with him it took AGES (I mean several months) on the baseline /strict diet before they saw improvement. I encourage you that sticking with the strict diet for longer may be what his body needs to heal and recover - Peggy

The failsafe diet definitely improved my son's bowels. Salicylates, dairy and gluten seemed to be the main culprits for him. Ultimately, though, it was strong probiotics and home-made yoghurt that seemed to fix the problem. He was dairy intolerant but we started with tiny amounts and now he's eating 2 bowls of yoghurt a day - Veronica

My eldest son has always had epic meltdowns and tantrums, just thought was his personality. Last year he was getting way out of control and then soiling every day, it took me a while to realise this as I just thought he wasn't wiping properly. Doctors visits, movicol in large doses all to no avail. A friend put me on to the fed up site and its been great. He is currently gluten, corn, soy free, only allowed A2 milk and keeping ALL colours flavours glutamates and nasties from his diet. Have been to gastroenterologist and done a seven day movicol clean out followed by a differing daily dose of osmolax and toilet time 2 times a day. I have been giving him a probiotic " Polybac 8". The change in him is amazing. It has taken a year of research and lots of mistakes, not checking ingredients properly especially if packaging has changed has been a challenge and adds to time in the shops but rather there than a meltdown for days on end. Swimming for 5 hours in inside chlorinated pool was not a great move for him as next day was teary and emotional so now we know to limit inside pools - Denise

My daughter has been suffering wetting for about 18mths now. I had been everywhere and back with doctors, scans. con. clinic. They were pretty much no help as it continued. Than my sister introduced me to FS and ED and said it could help. After my own research, I saw a dietician and now we are on day 5.I made small changes to her diet a couple of months ago & saw improvements. We managed to get 7 days in a row dry. Than, with Xmas/New Yr went backwards. Now, today it is her 9th day dry. I am convince that this really works - Nicole

We have had encopresis with our son, whose behaviour was the reason for failsafe but had no idea encopresis was related until it stopped, just thought it was behavioural or through stress. He is 8 and it was causing terrible problems at school, also leaking urine too with complete denial even if we took all his clothes of and showed him the evidence! At our wits end with that and behavioural probs, amongst others. Two weeks into the elim diet and it all stopped so I thought it would probably be just a development change... until he ate some things by mistake off the diet (additive related) and it all started up again. He has been milk protein insensitive since birth and yet can tolerate milk in cooked foods or so we thought. When on the diet if I cooked with milk, he got encopresis, and finally I worked it out. Stopped EVERY bit of dairy except small amounts of butter and he has no problem but if I bake or cook with any milk at all it comes right back. So for us it was going lactose-free as well as milk protein free...the urine leaking has also gone.

Then there was his sister who had been toilet trained a year or more for wee, but not poo and seemed to be going in the same direction. She is NOT lactose or dairy intolerant and has A2 milk on the elim diet. She "trained' or gained her bowel control in week two of the diet as well, with no probs since, except with a few slip ups as well on the diet, same time as her brother.

Interestingly, the youngest has just toilet trained as well, he was almost 3 when we went on the diet so the time was right but he showed absolutely NO understanding of when he was going until the diet, and began to tell us straight away. I just did nothing about it as it was winter and too hard with a new diet, new job and child care etc, so I waited until holidays. He has had no 'accidents' unlike 5 of his siblings. I am putting it down to preservatives as well as dairy for some of them.

We have a family history of bedwetters until about 10-12 years of age, and also every one of them a dairy problem except the 5th one - Ries

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

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