This Melbourne person ended up in hospital with a severe reaction after eating a veggie burger and soy sauce containing flavour enhancer 635, a booster for MSG.
This additive was approved for use in Australia without any scientific evidence and has caused severe itchy rashes and a wide range of other serious symptoms in hundreds of people. Numerous attempts to get the food regulator FSANZ to examine the issue have been met with silence.
Here is Graeme's story.
"I bought a veggieburger at the supermarket based on 'natural', fresh' etc labelling. It contained 635. Fortunately, I only had one. Within a couple of hours I was having difficulty breathing because of angiodema - swollen lips, tongue and throat. Hospitalisation and steroids with antihistamines reduced the swelling, but several weeks later I am still having problems. I have never had an allergy problem, despite being very adventurous with food.
"In addition to the veggieburger, I used some soy sauce on it and that contained 635, and had eaten some savoury biscuits earlier in the day that also contained 635. Presumably that was enough to push past the danger level.
"It is madness that we are allowing these contaminants into our food willy nilly. The photo was taken after several hours of treatment with hydrocortisone and antihistamine."
Since this additive was approved by the national food regulator FSANZ (Food Standards Australia New Zealand) in the mid 1990's, there have been hundreds of reports of serious side-effects, mostly severe itchy rashes that have caused hospitalisation and years of suffering.
Unfortunately, many health professionals are unaware of the role of food additives in causing these problems.
These reports have been collected by the voluntary Food Intolerance Network and provided several times to FSANZ without response.
Sometimes there are reports of serious reactions as with Graeme.
Of particular concern is that often people then develop a range of allergies that they have never had before as a result of exposure to this flavour enhancer booster, which is found in many tasty and savoury products like crisps and chips. It is conceivable that the startling rise in allergies in Australia has been triggered in part by this booster.
Flavour enhancer 635 is a mixture of 627 and 631 and is called 'ribonucleotide' or more chemical names such as disodium guanylate and disodium inosinate. It is added to boost the effects of added or natural glutamates such as monosodium glutamate (MSG) by a factor of 10-15 times and appears to boost adverse reactions in the same proportion.
People who react to 635 regard it as the crystal meth of flavour enhancers. It needs to be banned or at the very least subjected to a rigorous scientific evaluation as the Food Standards Act requires.
Factsheet on 635 flavour enhancers
I just wondered if you had heard the news about Strattera, a medication prescribed for ADHD that has only been used here in Australia on about 2000 patients, 1400 of them children. It turns out that the medication causes extreme mood swings and self-harming behaviours.
My son took it for six months and that's exactly what we saw in him. He got so bad he said he wanted to kill himself and he was only 10 at that time! His mood swings were so extreme I asked his psychiatrist about bipolar disorder!!! We stopped the medication cold turkey without the support of his doctor and that's when desperation led us to the failsafe diet, purely by accident as I stumbled upon your website while searching for something, anything to help my son.
Fast forward a year and I'm sure I've emailed you before about the happy, well adjusted, stable, "normal" child he is now, moving on to high school next year which we never thought was possible and only last month receiving his black belt in karate.
Your diet literally saved his life and every day I say a quick prayer of thanks that we have found the failsafe way and completely changed the course of his life. He was on the verge of being sent to either a special school or a psychiatric ward and now, while he still has some slight autistic tendencies that we are teaching him to manage, he is going to lead a normal life and hopefully he will be able to do whatever he wants to do with his future.
Thanks again for all you do – Lu
I want you to know how much your books have helped me. As a young girl, I grew up like your daughter, struggling with the difficulties of ADHD and food intolerances, chronic fatigue and obesity just to name a few. But we didn't know what these things were back then.
My mother tried as much as she could, but it was difficult considering she was dealing with her own inner demons (psychological & physiological), she had suffered mental illness from terrible childhood experiences and many health problems which she had always thought were food related.
Her way of dealing with me was at times very harsh - but then again she was out of control half the time. She didn't know why I behaved the way I did and she didn't know what to do, and I didn't realize I had a problem, I was just VERY energetic.
My mother went through similar searches as you - taking me to countless doctors, specialists, naturopaths etc from a young age up till when I was 16, trying to find an answer, but to no avail. She didn't have the state of mind or social support to help her to help me. My parents just accepted the way I was - our whole family was suffering in similar personal ways.
I passed many years in a complete blur, some days I felt as if my mind couldn't function, my body was so sick I couldn't function as a normal human being. Other days, I felt alive again and able to think again. This lasted through all my high school years.
From the age of 16-22 I suffered from Bulimia & Bipolar (formerly known as manic depression) and this is the period during which the food intolerances affected me the worst. My IBS couldn't be explained or treated by GPs and when I had sinus problems I went through 3 courses of antibiotics before I realised they weren't helping.
One day mum drove me to the library, I was too sick to go to work (sinus, fatigue, migraines). I accidentally picked up one of your books at the library. It was literally one of the worst (healthwise) days of my life, yet one of the best days. Sitting in that library reading your book (even through the haze and numbness that my mind had become), I started crying. It was everything I had ever experienced, what my whole family had experienced and it was right there in front of my eyes, in black and white. I was overwhelmed with joy (through tears) that some greater force had led me to your book, which started a ripple effect of changes that I am still experiencing to this day.
I started the elimination diet the next day. Within 3 days the sinus problem completely disappeared - I had had a runny nose, and headache for 7 weeks prior to that! It was clear proof to myself and my mum that something pretty big was happening when I ate certain foods.
A few months after I did a complete turnaround in my diet I decided I wanted more out of my life and through the strength and clarity that I was starting to experience in my mind and body, I decided to apply for uni. I am now more than half way through my first year of uni and I LOVE IT! And it wouldn't have been possible, without your help.
I have grown so much as a person in the last year, most people wouldn't recognise me. I have found a love of life and enjoy looking after my mind and body. Thank you so much for all the hard work, investigation and love it took for you to put together the food intolerance network, its publications and for sharing that knowledge with the world. - by email
(Sue's comment: see other stories about
I saw one of your excellent dietitians for myself, then realised her office was placed with providers for children with ASD. I didn’t choose her because of my / my child’s ASD, but because of my being ill for many years. The dietitian proved very calm, had a good understanding of ASD, was easygoing as well as knowledgeable and assertive.
With regards to the diet, I can’t commend everyone highly enough for all their work. From the information provided on the Fedup website to the Facebook Failsafe group – everyone is helping out to improve knowledge in this area.
Through this diet, my ASD child, appears more and more balanced. Our highly qualified psychologist took one look at my child in the waiting room at her last appointment (a month into the diet) and said “This is a completely different child. What on earth have you been doing to achieve this?” (The achievement being a calm, responsive and fearless child.)
I “failed” (made a mistake) with the diet whilst travelling and gave my child McDonald fries and it hurt me to see her in such emotional turmoil as a result of the food. Within half an hour of the fries, my child completely reverted to her old OCD mannerisms and state of confusion. She forced me to line up behind her at a flight of stairs, and demanded I march up and down them, following her commands. She screamed at me when I wouldn’t conform or march correctly. She even screamed at my brother for “smiling at her”. Through Failsafe, I can control her behaviour and emotions (and mine) and seeing her happier, more balanced and less frustrated is nothing short of a miracle.
Also, her night terrors, which used to be horrific and last over 30 minutes of her guttural screaming and trying to hurt me and ending in vomiting all over me, haven’t happened since the diet was started. She still has little nightmares and tosses and turns a bit but that’s not the same as safely putting her on the floor and crying seeing her so distressed and unable to be comforted.
My ASD child will never be “neurotypical” and I shouldn’t try to make her “like others” who don’t have autism. In fact, now the OCD, ODD and anger has lessened with the diet, I’m actually proud she’s autistic as she’s super funny, quirky and clever – never a dull moment. What I was trying to say was she doesn’t stand out as ASD as there are less full blown meltdowns that make us the centre of attention in public spaces. She’s gone over a month without scratching me intentionally in the face, whereas it used to occur every second day. If it does occur, it’s when she’s had one of the nasty numbers or amines.
For me, I have spent 10 plus years in and out of doctors, holistic practitioners, and have undergone over a thousand dollars’ worth of testing and examinations. Until Failsafe, I have had a permanent headache, brain fog, sinus problems, dizziness and angry outbursts (from amines). Through Failsafe, my headache / food hangover that took place EVERY DAY…all gone within a month. Truly life changing. I can now run again (my passion) and do yoga without procrastinating for fear of my bones aching, making it impossible to remain still and be present. I have lost 7 kgs and am the lightest I have been since I was in my 20s, BUT I am eating well and healthily. Being able to exercise, and not feel so sick has meant my depression is not as severe and I am able to focus on what’s going on around me rather than sit in my own food induced pain and anger. I am also diagnosed autistic and the wrong foods cause my shutdowns and meltdowns to worsen, so it’s not always a social emotional reaction, but a reaction to food that has me feeling so unwell and foggy that I have to shut the door to the outside world. Instead, thanks to Failsafe, it is really nice to feel more connected through all my senses. Lights aren’t so bright, sound is not so loud, and my partner can touch me on the arm more without me jumping a mile.
With salicylate reduction – I can empty my bladder!!! I used to get up at least six times a night (and that’s not counting the six times I would go before falling sleep). I woke two hourly because of the nerve ending feeling of not being able to empty completely. When I went low sals, I woke once a night. And my restless legs (which I didn’t realise I had…until this diet) reduced dramatically. Sleeping is SO MUCH BETTER. I actually didn’t realise it could be normal to sleep five hours’ straight. For most of my life I’ve woken two hourly and it has been completely broken. Same goes for my ASD child. Now we wake once a night.
Failsafe saved my life – Anonymous, Qld.
Love the FB page & the huge effort & kindness that goes into it! The diet has changed our family - Virginia
As you have both heard a million billion times - what a life changer for my two little boys and both of us! - anonymous
I can't get enough of the user stories you continually post year after year, everyone is so different yet have so many similarities every little comment and piece of feedback helps! THANK YOU!! - Jess
I absolutely love Failsafe! It has helped my 8 year old son since he was 2 - Angie
I recently meet Sue in Jindera and discussed my 21 month old twin girl who has been on the failsafe diet after a very inflamed, welt like and bleeding eczema broke out literally overnight covering her entire body. She was a typical 5&2 reversal child who loved and lived on blueberries and anything fruit. After three months on the diet she is almost completely free from eczema!!! - Eleanor
Sue's comment: 5&2 reversal means not eating 5 serves of vegies and 2 serves of fruit as recommended by dietitians but eating 5 serves of fruit and only 2 serves of vegies. The salicylate load is far higher with a 5&2 reversal diet.
So here's proof that kids react to foods. We have had an awesome first week on failsafe. My son has been telling me about his day at school, helping his sister with homework and being well behaved.
After an oversight on my part, partly because I was tired and my husband is away for work, my kids were allowed to have chicken and chips from a local takeaway. The result, a complete meltdown. Crying, rolling on the floor, throwing the school uniform in the bin etc. And he's 13! I am absolutely convinced that failsafe works! - Fiona from facebook
Update 2 years later:
Hot flushes are driving me mad especially at night, sometimes keeping me awake at night for a few hours. I saw that your Women’s Health factsheet suggests a low fat diet. I find it really hard to be low fat on the failsafe diet. I will make some changes slowly to see if it has an effect on the hot flushes. It would be good to lose some weight too ... after 3 months: I have lost about 8 kilos since going on the low fat diet, clothes are hanging off me. It seems the best way to lose weight is to not try to lose weight! I have been experimenting with ways to change recipes to no fat or low fat and have minimal menopause symptoms. What annoys me is everything you read about how to help menopause never mentions to try a low fat diet. (Other than from you) ... after one year: I have found that my fat intake has a direct effect on my menopause symptoms. If I eat more fat the symptoms creep back. - Rosemaree, see the full story 
I attended your recent talk in Canberra along with my husband and got so much from the information provided. We've been researching and changing our diets and home since we started seeing one of your listed dietitians for my 2 year old's head banging (he was such a bad headbanger he put his head through a window at 18 months!) and out of control behaviour. We've had some positive results with cutting out all processed foods ...
Everything has been calm until last week when my son had a fever and possible hay fever and we gave him kids dymadon and then nurofen and dimetapp over several days and his behaviour went off the scale bad. We're new to this and have yet to undertake the full elimination diet (it's hard to find a block of time when I can take leave and have the kids out of day care to manage it properly) but it wasn't until your talk that we realised our mistake and also our most probable cause of the sudden out of control behaviour. Thank you for being such an important advocate for our health and wellbeing - it's been an eye-opening journey and I only regret not starting it sooner! - Natalie
Sue's comment: labelling on pharmaceuticals is so pathetic that artificial colours and flavours don't even have to be listed. If it says "colour free", it probably contains other problems such as benzoate preservatives and/or strong fruit flavours that are very high in salicylates, leading to numerous complaints like this one:
"After a dose of colour free panadol my 5-year-old went back to his pre diet ways, crying non stop, angry, rages and night terrors"
Nurofen can affect people who are sensitive to salicylates. According to the RPAH elimination diet handbook: "Don't take anything containing aspirin ... No NSAIDs [includes nurofen, ibuprofen] are suitable while on an elimination diet, since they can cross react with aspirin ..." from page 116
I have been a Chronic Asthmatic since I was 6 years old. When I was 47, I read your book, "Fed Up with Asthma" and started the Elimination Diet. I found it difficult, but persevered, as I was doing the ultimate ... Gluten Free and Dairy Free included. I had such amazing results that I was reluctant to do the challenges as I was totally happy with what I was doing.
After 3mths of being on the diet, I realised I was no longer using any medication, for the first time in 41 years I was asthma free. I was the healthiest I have ever been in my life. People were commenting on my complexion, I had more energy than ever before and unexpectedly lost 13kg.
On the occasions that I did eat out or stray from the diet I found it difficult to determine what was the contributing factor as there was usually more than one culprit involved.
I am sad to say that eventually I fell off the wagon, but after seeing you speak recently, I am totally back on track. And I want to thank you for your work. I talk about Fedup to many people and they all say the same thing. "I'm not allergic to anything, I would know it if I had a reaction". - Jacqui, Qld
I am a 65 year old lady who has had two ablations after five years of atrial fibrillation. My condition was distressing and the arrhythmia with the fibrillation was always intense and frightening. For nearly 12 months I have been free of episodes until recently after eating cashews treated with sulphites and last night after eating icecream with 160b. Last night I had an episode of intense arrhythmia and checked all the foods I had consumed…nothing was different except that I had eaten Icecream and after checking the ingredients I found it contained 160b. When I had my worst years of fibrillation I checked foods all the time for their allergies and 160b came up in an article when I was researching sulphites because the article said 160b could give the same allergic reaction as sulphites. I do believe that many many illness are caused by additives in food…I cannot drink wine either and have trouble locating organic without sulphites…Thank you for your article which has assisted me in confirming my own assessment of last night’s episode. This type of information needs to be widely spread - Fleur
Hot flushes are driving me mad especially at night, sometimes keeping me awake at night for a few hours. I saw that your Women’s Health factsheet suggests a low fat diet. I find it really hard to be low fat on the failsafe diet. I will make some changes slowly to see if it has an effect on the hot flushes. It would be good to lose some weight too.
After 3 weeks
I have made some progress on the low fat diet. Since I started my sleep has been better and I have had no nights staying awake for hours and go to sleep quicker. I still get hot flushes but they don't seem to be as intense and are not worrying me so much. I have lost some weight, gone down a hole in my belt. I very rarely have IBS now and I put it down to more fibre in my diet. It improved once I started having gf weetbix for breakfast and upped my vegetable intake. Not keen to eat fatty sugary food - must have lost the addiction to it.
After 3 months
I have lost about 8 kilos since going on the low fat diet, clothes are hanging off me. It seems the best way to lose weight is to not try to lose weight! I have been experimenting with ways to change recipes to no fat or low fat and have minimal menopause symptoms. What annoys me is everything you read about how to help menopause never mentions to try a low fat diet. (Other than from you).
After 12 months
I have lost about 17 kilos. I am down to size 8 after being size 14 for years. Can’t get enough calories into me without fat! People are saying "Don't lose any more weight”. I have found that my fat intake has a direct effect on my menopause symptoms. If I eat more fat the symptoms creep back.
My Typical day is
Breakfast: gluten free weetbix with low fat milk, decaf with sugar
I sometimes have scrambled eggs with 1 whole egg and 2 egg whites and chives, or an occasional boiled egg, not very often. It does affect the hot flushes I am sure so don't eat them often which I find annoying as we have our own chooks.
Morning tea: hummus made with water, not oil and some plain sakatas or cruskits or a fat free muffin
Lunch: Leftovers or homemade soup or homemade pie with potato pastry or chicken and salad or a chicken, lettuce and hummus sandwich. I use the Laucke gf bread, mostly without nuttelex. Afternoon tea: A pear and a few cashews or sometimes a piece of fat free cake or a slice
Only water or decaf to drink almost every day (occasional lemonade)
Dinner: Steamed fish and salad or chicken breast and veg or lentil sauce with spaghetti or rice or No Tomato spaghetti sauce (make my own low fat mince out of steak) or chicken and chickpea casserole with dumplings or steak casserole or rice noodles with veg and chicken or San Choy Bau or chicken spring rolls. I do a Roast on Sundays, mostly chicken, sometimes lamb or beef. I do notice more hot flushes if I have lamb. Usually do something with leftover roast on Mondays.
Sweets: I often have sweets. When I don't have energy/time to do anything else we have pear and spoon of yoghurt (sometimes a squirt of carob syrup). Otherwise we have rice, sago, custard and there are a few no fat or low fat recipes I have like carob mousse, carob self saucing pudding, pear jam steamed pudding, a Rice pear dish, a couple of rhubarb dishes. Rarely I have a sponge carob biscuit in the evening.
Potato pastry (contains wheat, dairy and egg)
Combine 1 egg white and 2 tbsp water, stir into 1 and a half cups of mashed potato cold. Add 1 and a half cups of plain flour and half a cup of skim milk powder. Use like pastry.
Delicious carob black bean brownies
San Choy Bau
I either buy mince and cook it with a little bit of water and drain the fat off or make my own fat free mince, and I don’t use oil. http://www.cookingforoscar.com/2013/06/07/san-choy-bau-two-ways/
I'm a 57 year old grandpa with a story to share. My wife and I had 3 daughters in the early-mid eighties. The middle one had asthma and hyperactivity. Bounced off the walls and ceiling, annoyed her sisters constantly and it was obvious her mouth couldn't keep up with her thoughts. No sleep, asthma and behaviour problems. ADHD was mentioned but the real problem was the asthma which was exacerbated by the hyperactivity. We purchased a book called the Additive Code Breaker which was aimed at the time at helping to treat asthma by dietary means.
What an eye opener that was. We changed the diet of the whole family to make it easier. We took that book to the supermarket whenever we shopped. I have noted with interest that your lists contain all the artificial colours, flavour enhancers and preservatives we eliminated from our diet. The result was a chronic asthmatic who no longer needed any medication and amazing changes in behaviour. She became a top student, sportswoman, prefect and university grad. We were queried constantly by family and peers but stuck to our plan.
I shed a little tear reading some of the stories on this site. My daughter sent me a link as she is now experiencing similar problems with her four year old and history is about to repeat itself. I wish all the best to everyone taking this path. It is challenging but very rewarding. I have many questions about the marketing done by our major food producers and supplier and their ethics - by email from UK.
Realising that my girls who I thought were fine with Salicylates are likely not. We had been challenging for a few days and then with honey and cinnamon on toast - wow.
One kid could not keep still for more than about 2 seconds - trying to dress her ended with me lying on the floor laughing because it was that or cry after 30 minutes of trying!
The other had her eyes rolling back, not listening, trying to run away from me (I stupidly took them both out!), talking VERY loudly, meltdowns - in an adult you would have said they were drunk or on drugs.
I thought it was only amines. Guess not! Explains why my beautiful little people just haven't been coping in a while - Jo from facebook.
I'm three weeks into the diet, finally with some relief from the headaches and fatigue. Thanks so much!!! I wish I knew about this years ago.
UPDATE 3 weeks later
I ended up working out by week 3.5 that I was making little mistakes, which I paid for dearly during week 4. But then I came out the other side by week 5 and had a whole 8 days 97% headache and fatigue free, pain free in my lower back and joints all just with changes to my food, no pain reliever medication needed. I'm a little weary of challenges but all in good time. Yay! - Jess
When I was about 24 I regularly would take feldene, I think it was, after footy without incident. One night I had severe stomach cramps and a friend gave me a couple of her naprogesics. I went into anaphylactic shock and was admitted to hospital. A few weeks later after footy I used feldene again as per my habit and went into anaphylactic shock once again.
I get itchy from many foods and many of the symptoms you discuss on your web page. Thanks for the page. Quite informative. I am now 45. - by email
Feldene (active ingredient Piroxicam) and Naprogesic (active ingredient Naproxen) are nonsteroidal anti-inflammatory drugs (NSAIDs) used as painkillers. NSAIDs are not suitable for people who are sensitive to salicylates because they can cross-react with aspirin which is a salicylate sometimes used as a salicylate challenge.
Professor Peter Gotzsche, a co-founder of the Cochrane Collaboration, the world's foremost body in assessing medical evidence, says that non-steroidal anti-inflammatory drugs - commonly used for arthritis, muscle pain and headaches - should be used as little as possible. He estimates that 100,000 people in the United States alone die each year from the side-effects of correctly used drugs, especially NSAIDs.
Even the name for these drugs, "anti-inflammatory", is not supported by evidence, he says. He has conducted a clinical trial and review of the evidence that has found there is no proof they reduce inflammation.
"These terms for our drugs are invented by the drug industry," he said. "They had a huge financial interest in calling these things anti-inflammatory. It lured doctors into believing that these drugs somehow also had an effect on the disease process and reduced the joint damage."
Read more http://www.smh.com.au/national/health/peter-gotzsche-founder-of-the-cochrane-collaboration-visits-australia-to-talk-about-dangers-of-prescription-drugs-20150204-136nqc.html
I’m doing the diet for my baby son with eczema and severe itchy rashes. I can’t tell you how awful it was I never took photos when he was at his worst. We’re doing it with an excellent dietitian (on our list for Kempsey). Challenges have so far shown that salicylates and glutamates are a problem. The diet has changed my son’s life. - 2015 Kempsey Roadshow talk
Pre failsafe, breastfed only Glutamate challenge response Now failsafe. The scab was left from glutamate challenge
On December 4th 2015, my son (12, has Down Syndrome-but highly functioning), my daughter, and I were walking into our family doctor’s office to pick up a prescription. We were holding hands as there is a very busy medical center there and drivers often do not pay attention to pedestrians. Anyway, we were walking across the parking lot when suddenly my son stopped, jerked his hands away from us and began to scream "stranger!" But pointing at myself and my daughter. We tried to catch him but he kept pulling away, yelling help, and saying he didn't know us. I knew immediately by the look on his face that he was not playing a joke or kidding in any way. He truly looked afraid. I was terrified, my daughter was crying and yelling "momma, what's happening, what's wrong with him?"
I said we've got to get him inside- we yelled for the nurse and a couple of men who were there as patients, also assisted us in getting him inside. The staff knew immediately something was wrong and took us straight back to an exam room. The doctor came in and began a routine exam, drew blood, took urine, a blood pressure reading and temperature. Everything was within normal limits. He sent blood and urine off for stat testing and sent us to the hospital to a brain scan done (MRI), which was also normal. His urine came back positive for cysts and blood, but no bacteria. His liver test showed no signs of disease but appeared slightly enlarged on ultrasound. For 10 days we went through this hell of not knowing what to do or what could be wrong. Test after test. We were certain he had a stroke of some sort, or possibly a seizure. We could find no proof other than his disturbing behaviour. He could no longer walk on his own, he could no longer read or write. He had distorted vision that made him question everything he saw. He had fits of screaming as if in horrible pain. He was rocking constantly. He would stay awake 2 to 3 days at a time then sleep for only 4 hours. He couldn't hold a fork or spoon. He couldn't dress himself. He was terrified of water, and he was still having times he didn't recognize any of us. I stayed up late with my oldest daughter as she had moved in to help with her little brother until we could find out what was wrong. He had even had to go back to wearing diapers because he would pee and sadly even poop himself and not even realize what he had done.
The doctors said that they thought maybe puberty was coming for him and that some children with Downs were affected by this and regressed to 4 and 5 year old mentality. I just knew in my heart they were wrong. I believed that if it were what they said it would have happened gradually, not all at once. All I got were “I’m sorry” and offers of strong medications to "control" him. I couldn't do that and I didn't accept that. I cried Christmas Eve and prayed with my daughters for a miracle. I put my youngest daughter to bed and my oldest daughter and I started putting things together for Christmas morning. We were wrapping the kids’ gifts and talking about Christmases past when my daughter said, "remember how their kid would only eat chicken nuggets and Mac and cheese and it was sick all the time"? She was speaking of an ex family member, but I suddenly interrupted and said "YES! I remember! It was something about food dye that Kraft was using in their mac and cheese!"
It hit me all at once, that was it, I knew in my heart immediately but how could I find out for sure. Suddenly I was looking up every food my son had eaten in the last month that was not completely made by me or put together by God (not being sarcastic). I pulled out boxes, went through food labels and if we had no more of something he had eaten , I looked it up online. He had been on a kick of 3 mini chocolate donuts and a scoop of vanilla ice cream for a snack each afternoon and ate either Cheese Nips or MovieTime buttered microwave popcorn at night for a snack. He had been getting a "smoothie" made with Coffee Mate, ice, water, banana, vanilla, and sugar at breakfast with a poached egg and 2 sausage patties. His lunch was a Kraft single, and deli ham or turkey on whole wheat, with lettuce and tomato and frozen French fries that were oven baked. Supper meal was always a roasted meat and plain steamed vegetables, cottage cheese and sometimes a home-made bread or roll. After reading ALL the labels almost EVERY FOOD ITEM HE WAS EATING contained Annatto. The French fries, the crackers, the ice cream, the coffee mate, the popcorn, the cheese slice, EVERY meal except our evening meal contained Annatto. I knew I had been given the answer I needed. I started searching annatto online and kept getting RECIPES to prepare with it!!! I needed someone who knew it was bad for you too, someone who knew some people could not metabolize this stuff! I finally came across your site and read what you had to say. I had the verification I needed and now was gonna figure out how to flush that out of his body.
I immediately began using food grade diatomaceous earth on him by mixing it in unflavored yogurt. I gave him 15 drops of ConcenTrace Trace minerals in fresh squeezed orange juice that morning. I started giving him purified water and squeezing lemon in it or making him purified water with fruit infusion in it. Black tea with raw sugar or wild honey and the day after Christmas I got on Amazon and ordered bee pollen, green propolis, and more ConcenTrace minerals, plus concentrate vitamin paks.
I threw out every single annatto item I could find and flushed his system with all the good stuff I could get in him. It took about 7 days to hear him laugh again and within ten days he could walk straight. Three weeks before he could get his sense of comedic timing back and tell jokes like his old self and about a month before his vision cleared. I thank God so much for answering that prayer. That is truly all I could ever want. To know my son is gonna be ok. We had a setback lately however which is how I found your site again as I has forgotten to bookmark it. Anyway, he's been getting that look in his eyes again, like he's not sure who he's talking to. He's also has a couple of toilet accidents and not wanting to come out of his room because he's seeing shadows after him? Anyway, yesterday I found that his "all natural" real fruit juice gummy multivitamins contain none other than ANNATTO! These were recommended by our pharmacist. My (our) doctor, has listed Annatto on my sons chart as an allergen under "food and medications" now. He said he had it listed under food only, as he had no idea it was used in medications. The pharmacist said she had NEVER heard of it so she had no way of knowing it was used in vitamins (it was listed under ingredients on the bottle) anyway she wouldn’t refund the $35.00 for a product he should never have had. She swears her "autistic" son has taken them for years. I suggested that she take him off them and any other things with annatto in them, just to be sure he has autism at all. She told me there are always going to be "websites and parents out there looking for an excuse for their child's illness" and that sometimes we just have to accept what we are given. I just looked at her and said how happy I was for such "websites and parents" or I would have never had verification that I was on the right track with my son.
My son has not yet learned to read fully again and still can't write. But, I believe in time he will be completely himself. I am just shocked at how much a simple waxy seeded plant took from him and how hard we've had to fight to get him back from its clutches. I have seen some horrible things as a nurse, but I have to say I think the damage from Annatto his more harmful than any drug addiction I've ever seen and certainly needs much more attention from parents and the medical community. I don't know how it is in AU and European countries or in the Asian countries. I am sure that in the United States that this "natural," food additive is in far too many food items. Almost everything from cookies to casseroles contain this "poison" and the U.S. seems to have no plans to cut back on it. It is dangerous. Period. Sadly, too many people here are afraid they will have to cut out a food that their family just loves or their kids can't get by without its taste or convenience, so they would rather give them a pill to counteract it. Another sad reality is some parents find they can get a social security disability check for their children who have learning disabilities of things like attention deficit disorder, and they are not gonna give up that check for a cure (this is not ALL parents, but I have met MANY who call it their "fun money" for "having to take care" of such a child).
Thank you for letting me tell our story. I pray that its better every day and I will be far more diligent in my label checking, so I can be sure Annatto is out of our lives FOR GOOD ! I hope someone out there who even suspects that they or their child could be affected by a food additive that they try an elimination diet just to be sure. Just because everyone isn't bothered by it doesn't mean you or a loved one isn't. Doctors don't always have an answer. Trust me, our doctor is a great doctor and a good friend and he never even GUESSED something like this was affecting my son. I've had 5 children and been a nurse for 30 years and neither did I. If I hadn't had my memory jostled into remembering Kraft taking the dye out of their mac and cheese and all the complaints about it, I would never have thought to look it up. I would have never found your site and my son likely would be in a very bad situation right now and we would still be hopping from doctor to doctor in search of an answer. You will never know,....never know, how much stress we were under. How much fear I had that my son had some horrible disease creeping up on him and stealing away his life. That any moment he could possibly just stop eating, or breathing. I didn't know and no doctor could tell me otherwise. Now even though I haven't read of anyone's case as extreme as my son. What if they don't know. I think of children who have died from unknown causes and young people in institutions because their families couldn't care for them anymore because one day they started with an unknown illness they never could overcome. That could have been my son. He just turned 13. If I hadn't found out, how long could I have continued to change diapers and spoon feed him? Would he keep growing bigger? Would he have gotten worse? He was already getting worse by the day. Would it have leveled off or continued? These thoughts are there now but not because I fear a return but because I fear there are others out there who are in the same position we were.
I pray not, but if there is someone out there, just try and see if it is something they have always liked or something that they started not long before. Flavored pudding, Ensure, yogurts, or any plain old everyday foods that everyone else eats. And remember, just because you've never had an allergy to a food or a reaction to an additive before does not mean you aren't now. Allergies can develop at ANY time.
I'm just thankful that a website like yours is out there to help point someone in the right direction. I appreciate it very much and hope you keep up the good work in letting people know what is out there and what can be done about it - Lynn from USA
(Sue's comment: Thanks to Lynn for sharing this amazing story. A few warnings: If you think you are affected by annatto 160b, you do not need to take any special products to detox. Simply stop consuming annatto - and expect some withdrawal symptoms within two weeks. For behavioural reactions, normally these present as a day or two of increased symptoms e.g. on days 4 and 5. Withdrawal symptoms can include agitation or tearfulness, followed by increasing improvements. Most people who realise they react to one food additive are likely to be affected by some other food additives - and possibly some "healthy" natural foods - as well).
Introduction to food intolerance
Reader reports of reactions to annatto in adults and children, from headaches and stomach aches to asthma and children's behaviour
Sign our petition about annatto
I have never felt better over Christmas than I did this year on the elimination diet ... The salicylate challenge resulted in a small breakout of rough skin on the face, headache, shortness/acidity creeping back into persona, and in the quiet of going to bed I became aware that my ears had a buzzing/whooshing sound pulsing in them... The next day they felt as though they were blocked and I couldn't clear them or hear properly, like I had a cold but I didn't. - Vanessa
See also story collection on tinnitus and ringing in the ears , including  Hearing loss and tinnitus from salicylates
This diet is freaking amazing!
I have had extremely severe ADHD and Aspergers diagnosed from when I was six and depression so serious that I have been suicidal for the past two years and have had such bad anxiety that I only leave the house about every couple of weeks when I absolutely have no choice. I mainly just lie on the sofa, feeling angry, bitter, exhausted, depressed and resentful of my horrible headspace.
But today ONE FREAKINGG DAY ON THIS WONDER DIET, today I got up, showered and got dressed (a genuine achievement), got ready and went out to town! I have had the best day in months and months, I did my errands, I wasn't in a bad headspace, I wasn't anxious, I was sensible, productive and most of all - HAPPY.
I had previously read about how people noticed extremely quick changes and improvements, sometimes in a number of hours and honestly, I was sceptical. That's all changed now. This diet has already changed my life and it's only the first day.
Onwards and upwards from here hopefully!!! - Ffion from UK.
Two days later:
For those of you who didn't see my first post I have severe major depression which leads to suicidal tendencies, self destructive behaviour and I also have horrific anxiety and very severe ADHD and Aspergers. Or rather.... I USED to.
This morning for the first time in over two years I got up and went for a morning run. I didn't go far and I didn't go fast but it's a start and is just one more indication that I'm really living now - not barely existing like I was previously.
I'm doing the strict elimination diet. To be honest though, I wouldn't care if I had to eat like this for the rest of my life as long as I feel as good as I am now.
Update one month later:
So I've been doing this diet for a month now, I chose to do the very strict total elimination diet because of the colossal amount of issues I was trying to tackle.
I have since done some challenges but have reacted to all so far - especially glutamates! I thought not having the things I used to eat so much of would be really hard (especially since I'm such foodie) but I can honestly say, for the first time ever, that the benefits of not having the stuff (drastically) outweigh the drawbacks.
I can honestly say that since I first started this diet, my life has been unrecognisably changed for the better.
One of the biggest, most welcome changes in me since going on this has been the total disappearance of my crippling anxiety and panic disorder which resulted in me often not being able to leave the house for days on end and leaving me unable to interact with other people as well.
Well like I said, that's not an issue any more. Since last month I actually joined an animal right group (something I feel passionate about). I didn't know anyone in the group and just kind of showed up to one of their open events and introduced myself.
This might not seem strange or much of an achievement but this is coming from the girl who wouldn't answer her house phone because she didn't know who was calling and was afraid it might be someone she didn't know.
Not only that but I have taken part in many of the awareness events that the group do. These events consist of going into the city centre, setting up a stall and talking to the general public to raise awareness about the importance of animal rights. A month ago it would genuinely have been funny to even suggest that I might do something like this because the thought of me being alone, in town, talking to strangers was so ridiculous.
I would also have not been safe to be in town on my own, due to my ADHD prompting me to often act irrationally and impulsively, putting myself and others at risk.
But I'm not that person any more and have taken part in 3 events so far and have loved every one of them! I now have a circle of friends who I see regularly and who, if I do have a hard day like everyone has once in a while, I can call and speak to about what's going on.
There is so much more I could write about, including going into detail about how my self-destructive tendencies have disappeared "as if like magic" some would say but I won't expand on all areas of how things have changed for the better, instead I will just leave you with this.
People always used to know my name for the wrong reasons.
At school I was "that strange girl who can't sit still" or "that girl who had a meltdown when the fire alarms were tested" or "that girl who's suspended because she lost her mind when she was asked to do work with a partner".
At uni I was "that girl who never shows up to lectures because she's scared" or "that girl who never looks anyone in the eye" or "that girl who can't join a conversation without cutting everyone off or shouting out".
I was always known for the wrong reasons.
But now people are actually NOT recognising me, and it's for all the right reasons. People see me doing an awareness event and say "that can't be Ffion" or they see my pictures of me running and say "ok, but who went with you" because they can't wrap their heads around the fact that it is now safe for me to be out on my own because I am no longer a danger to myself.
Before this diet I was surviving, and now I am genuinely, for the first time in my whole life, living life to the full. And I'm not about to stop - Ffion from UK.
The hardest part about my boy being on this diet is re-training MYSELF on his behaviour. He has turned into this amazing, gentle, calm, loving child but then he will do something silly or naughty and I start to question things but then I have to stop and remind myself that he is 5 and he will have normal 5 year old behaviour and I now have to treat the behaviour like I do the other boys. It's surreal. Instead of extreme naughty/hyper/ agro behaviour with little doses of calm we have extreme calm with small doses of the other behaviour if that even. Does anyone understand what I'm trying to say? - Jaycinta
I actually found it rather heartbreaking that at age 7 I realised that I didn't really know my daughter. She wasn't the child I thought she was. That's an exaggeration obviously, but how sad that she had lived 7 years with people responding to her through the filter of chemically induced behaviour. Turns out she's actually quiet, fairly shy and likes her own company, with moments of crazy kooky kid. It was not natural for her to be constantly the life of the party. And while I did have at least one person suggest maybe she was better the other way, you wouldn't give your shy 7yo mood altering drugs because they were shy. Why would I want to do that to her with glutamates, antioxidants and amines?? - Rachael
My son has just turned 4 and they wanted to diagnose for autism spectrum. I got so tired of hearing people including the doc at one point saying 'he's just being 3!' and 'it's just him adjusting to having a sibling'. We have moved on from failsafe but the diet helped us establish that food was influencing the behaviour. It was wonderful to meet my son again. I feel that I had to grieve the time we lost and just enjoy the boy he was becoming - Lyn
It's even more profound as time goes by and you find the new them....! We are now nearly 3 years since we started FS for my older kids and I can pick in a heartbeat if they have overstepped something food-wise - Kristan
Yes!! It turns out my son is gorgeous and sweet-natured. I had to grieve the 'loss' of his first eighteen months when I just thought he was a bad-tempered difficult kid - Allison
Never before would he do what he is doing this morning. He was the first away in my bed and asked me to turn over so he could hug me and fall asleep instead of me having my arm over him. And now he is going around to each brother (3) and hugging them. He hardly interacted with anyone before - Jaycinta
One happy fail safer on her 8th birthday - “normally it is my birthday I want but this year it was mummy can I help you please thank you for all of my presents”
This diet has changed our lives and if I could shout it from the rooftops I would.!!!! - Jaycinta
My daughter is now 4 1/2 and is mostly fantastic after we started the failsafe journey two years ago, and I now have a 4 month old baby who is a dream baby - mostly! I'm sure it has something to do with the food. So thank you again. I have recommended your resources to quite a number of my friends! - Erin
This change in eating has changed my life - Gayle
I had really positive results in the first few days too. Still a few weeks later I can't believe it's true. I expect to wake up and suffer crappy symptoms. Hard to believe it could be so simple as just not eating additives - Valerie
Before Failsafe I followed GAPS and Paleo for two years. Failsafe was the diet that changed my life for the better in the most dramatic way.
Now that I'm in a good space physically and mentally I've begun to research supplements and subtle FS dietary changes. Daily magnesium, B's, C, selenium and a healthy, joyful mindset has been tremendous in my recovery. I have become acutely aware of how amines affect my digestion and with full avoidance (no red meat for me) I've started to notice my sals sensitivity reduce. As soon as I introduce an amine (even just a small amount of avo) I react. I don't think I react more or less than before...I think I just feel better more of the time and reactions feel more obvious.
There is not a large amount of variety in the FS diet, but there is plenty of nutrition if you balance your meals well and with loving consideration...like all diets really! I'm trying to stop using the word 'diet' and taking a leaf from my son's explanation of how I eat...a 'strain of food options'. 'Diet' feels like a restriction...which is completely contradictory to what this way of eating has brought to my life! I may eat in a narrow 'food strain' but my energy, vivacity and joy for life makes up for all that.
Thank you all for your research, courage and tenacity...particularly when the current health trend is so intensely prevalent and sanctimonious! Would someone please tell the health industry mob to take an organic, coconut-infused, goji berry flavoured, stevia sweetened chill pill and eat a marshmallow! White of course - Nadia
Although I wholeheartedly agree with this picture, I'm sure you can understand that with a son sensitive to salicylates most of the things in that basket on the left scare the heck out of me. How my thinking has changed.....Shannon
It's pretty sad when you get caught out without food, and the "healthy" choice is to eat Macdonalds chips, not Subway! - Ruth
I totally agree! My school is having a tuck shop overhaul and all I could think was 'please god no more fruit!' - Lauren
I was so smug when I went to RPAH dietician and reported my "healthy diet" of fresh fruit and veggies only to be told how many natural chemicals I was eating. I dream about eating a grape - Kath
I know! My masters is in childhood overweight and obesity, I never thought I'd be the mum in the supermarket saying 'no you can't have a banana, you had one this week already, you can have a milky bar' hahaha - Emma
My daughter can't safely eat most of the stuff in either basket! Her only safe items pictured are a little bit of garlic and maybe some parsnip! - Karmyn
I always used to get dirty looks when my ASD and sal sensitive son asked for an apple at the supermarket but I said no, have a packet of chips instead. The reactions from our extremely sal sensitive kid weren't worth it. I used to boast about how much fruit he used to eat BEFORE I knew what was really going on and connected the dots - Lucinda
Feeling hopeful. Only day 4 for my 2 girls on their strict elim and we are noticing a difference already! They are still arguing like sisters do but the emotional meltdowns have pretty much stopped, they were taking 2-3 hours to fall asleep and tonight and last night were asleep in 15 mins and my youngest daughters number 2's aren't burning her bottom anymore - Debbie
When I was diagnosed with IBS I saw a naturopath and the diet they put me on and supplements they gave me made my symptoms worse and they did not know why. I also tried acupuncture which temporarily helped but was not permanent and did allergy blood tests (since I'm anaphylactic) which were all negative. Don't know why I didn't start with a dietitian. Since they helped me find out I'm intolerant to salicylates my symptoms are gone completely - Therese
My 8 year old is also an incredibly fussy eater. Last year we were at our wits end with his behaviour and after reading Fedup, we decided to go along a similar path as others - eliminated colours, flavours and preservatives. We have noticed a huge difference in him. It's a pain to start with, but once you establish a list of foods they can have, we just buy those brands. Good luck! - Belinda
I have been very enlightened by the information in your books, especially re the fruit. Like many people, I have had the view, 'don't worry if they're eating lots of fruit - it's good for them'. And yes, I shovelled it into my own children - a grandmother
Just a quick word of encouragement to anyone who's finding it tough to change your diet, and often your lifestyle in order to be well. It can be so overwhelming to make big changes, but once you work out what foods you CAN tolerate, it gets WAY easier to manage - because you're not suffering the reactions/symptoms all the time. In other words, once you feel WELL, it's so much easier to manage it all. Good luck all - Rachel
OFF DIET ON DIET
It's hard work as a Mum sometimes having to say No to simple food requests from your child. It's not always a nice feeling but when you see the difference it makes you know that it's worth it. Couldn't be more simple than this comparison. School work on the diet versus school work on a bad day where the diet had been broken. Luckily the majority of her work is good and she is in the top half of her Grade 1. Can't imagine where she would be no diet - Roxanne
My daughter was allergic to all nuts and peanuts from an early age and later developed an allergy to annatto. It was easy to determine. She had been skin tested and was negative to dairy products. She would often eat a cheddar cheese but started reacting to it around the age of 9. There were only two ingredients and I knew she was not dairy sensitive. The other ingredient was annatto (160b). She later reacted to Goldfish, Cheeze-its and a breakfast cereal containing annatto. Because it was a newer allergy, at first we forgot to check things she had been able to eat in the past. Each ingestion has shown a progression of symptoms. Her mouth and throat itch, difficulty breathing and last time she felt swelling as well. We have been able to resolve the symptoms with benadryl and albuterol.
The nut allergy is much easier to manage. USFDA laws require the allergen to be listed in bold and other people know what a nut is. But now my daughter and I must continually read all the fine print of everything - even products that were once fine have often started adding annatto. We must explain to other people what annatto is for her safety at schools, camps, sleepovers. It would be much more difficult with a young child or one with disabilities. This is an unnecessary hazard because it is appearing now in so many foods, even those labelled "organic". I would love to see all dyes, both "natural" like annatto and the synthetic dyes removed from our foods - Nicki, USA
I had an heart attack 4 years ago at the age of 48, had two stents fitted, and was told that I would be taking aspirin every day for the rest of my life.
I had been treated for asthma for decades until my heart attack, only to realise afterwards my heart that was leaving me breathless not asthma. For a few months I felt I had been given a new pair of lungs, but my health gradually declined, with pain, cramps, nausea, and rashes/hives.
I had been prescribed two medications. A consultant suggested cutting out the aspirin and sticking with the Prasugrel. In the following months my condition improved to the extent that I took up hiking and trekking and everything seemed to be going fine.
One day at the gym I felt feverish, lethargic and started suffering with vertigo. Assuming I had Meniere's disease, my own doctor gave me a double dose of an anti-vertigo drug that was followed accidently by another double dose from an ENT consultant. This quadruple dose had severe effects on my heart and I started getting palpitations. When they realised what had happened, I was given anti-inflammatories to see if the vertigo could be helped by allowing the middle ear to drain more easily. Instead my condition worsened as I began getting chest pains, shortness of breath, swelling of the lips and severe throat pain and rashes.
The next episode finally solved a lot of issues. While on a walk through the English countryside, my girlfriend and I stumbled on some wild blackberries and picked about a kilo. That night, we made blackberry jam/jelly with occasional tasters. The next morning I awoke with some rashes around my elbow but thought little of it and put it down to a mild side effect of the anti-inflammatories, went to work as usual, however the following morning I felt very lethargic but managed to get up for work and while doing so ate a slice of toast liberally lavished with a good dollop of homemade blackberry jelly. Later that day I found virtually all my arms and neck covered in hives and rashes, I had difficulty breathing and was eventually taken to Accident & Emergency in an ambulance ... My partner was aware of my rashes etc and after we had joked about it being the jam/jelly, she did some research and discovered that blackberries are very high in salicylates which is also the reason that people have an allergic reaction to aspirin. When I mentioned this at A&E they seemed totally unaware of this link, and carried on treating me for a suspected heart attack.
I visited my doctor today who has now advised me not to take anti-inflammatories as they are likely to contain salicylates and has now put a note on my records that I am not to be prescribed any medication that contains them. Why was it not obvious to trained medical staff that if you have an allergic reaction to aspirin, it is quite likely that it is because of salicylates and that care should then be taken when prescribing further medicines?
In general I am beginning to lose faith in the medical profession:
- I was treated for asthma instead of heart disease
- I was given life threatening drugs for someone with heart disease
- I was given medicine that contained ingredients to which I might (very likely) have an allergic reaction.
- they did not make a connection between Aspirin and Salicylates
My advice for anyone who has suffered from heart disease and advised to eat plenty of fruit and vegetables for a healthy lifestyle: if you've had a reaction to aspirin or other anti-inflammatories, be cautious of salicylates in food, drink, medication, toiletries and even cosmetics. - Tony, UK
At the age of 59, I was having trouble with hives and worsening asthma. I had an inkling that I had problems with some foods since I was a child but had never followed it up. I have now (with support from an allergist in Adelaide) completed the RPA's 6 week Strict Elimination diet and am now doing the Challenge Diet - I am up to the MSG challenge.
I have been amazed at how the elimination diet has changed the way I eat - I thought I would never get through it but I did so with flying colours. During the elimination diet I had a week long withdrawal period. I found I was intolerant to pears which are a staple of the elimination diet - this all made it very interesting. But I persisted by getting through week by week.
I am finding the challenges just a bit harder, especially when we went to Sydney for a week. So far I have found that I am intolerant to wheat and salicylates and am hoping that's it!
But I have learnt that you have to be organised, write a diary, have the required food on hand - I do tend to treat it as a project which will end in the long run. I know that there are plenty of people that have been through this process but I am very proud of myself and intend to keep on going until the end.
UPDATE: I have completed the Amine challenge - unfortunately I reacted very strongly: stomach ache, itchy, hives and very tired - another intolerance to add to the list!
Doing the strict elimination diet helped my asthma and my occasional hives/itchiness enormously. It is only since I have been on the challenges that my itches and hives have come back - this has helped me to determine what I am intolerant to. I previously had no idea that what I was eating was causing my asthma so this was a big wake up call for me - Jenny, South Australia.
I have a skin rash that I now know it is an allergic reaction to coconut, and any organic compounds derived from it (Cocamides), in shampoos and body washes.
I always have to check the surfactants (foaming agents). My allergic response could start off as a slight reaction that can accumulate, or it can show itself as immediate severe inflammation. Ironically Cocamidopropyl Betaine (CAPB) was in a lot of products recommended by my various dermatologists, such as Born to be Mild, Hegor 150 shampoo, Demodex Solutions, Cetaphil Restoraderm. These were prescribed for possible Acne, Rosacea, Seborrhoeic Dermatitis, folliculitis - the diagnoses I got from these 'experts' were endless. And so wrong!
By the way, I am 63 now and it was in the late sixties when I first experienced a low level of irritation on my face and chest. Co-incidentally that was around the time Johnson & Johnson patented its first CAPB detergent-based shampoo: “No more tears” Baby Shampoo. I was also seduced by the amazing smell of Revlon Flex balsam shampoo when I visited Australia in 1973. I remember going from one shampoo to the next one, not realising that it was the Cocamides in them that were causing me problems in the first place!
I feel very strongly that there should be a warning about Cocamides, especially CAPB on bottles, but I keep reading that they are safe! I find that so insulting when I look back and see how badly they impacted on my life - Sally by email
“Tonight I have cried, once again due to the behaviour of my children but tonight, for a totally different reason. They are beautiful, loving, singing, playing, helpful and laughing! My kids are 14mths apart so they really bounce off each other. My daughter (only GP diagnosed) has ODD and my son has (GP diagnosed) ADHD which is why I turned to this diet as they wanted to medicate immediately.
“They have only been doing the diet a week but already we have seen a 180 turn around! My daughter is listening, respectful, being helpful and making good choices towards her actions. My son is the most changed before he was hyperactive, easily bored, inattentive, unmotivated, whiny, foggy in the head, irritable and constantly making silly noises now, he gets excited but not hyper, he plays by himself - he actually sat still and watched a movie yesterday! He's singing!!! We always sang songs with him but whinged and covered his ears before but now he’s singing nursery rhymes! But the best bit is he's so cuddly and loving now. Tonight he said "I can't wait for our family day. I love my family". He's 4.
“This journey hasn't even started and I'm seeing results. Failsafe has been the best medication! I know exactly what's in it and what is going on. Thank you Sue Dengate and Howard Dengate from the bottom of my heart. Your passion, determination and education has helped change another family and two children to live happy, healthier lives. Thank you. Xxxx” - Kristy in facebook group
Comment from Tracy Gaze:
Speaking as a mental health professional, children are often diagnosed and medicated by GP, with or without a single appointment as assessment with a paediatrician. When a true paediatrician becomes available, it's not uncommon for many of these to be misdiagnosis, but they still had the diagnosis up to that point.
For diagnosed ADHD, even where paediatricians and psychologists and occupational therapists have been involved, there are still four main possibilities:
1. Misdiagnosed food intolerance, where identifying and avoiding triggers removes the symptoms of note.
2. Misdiagnosed other condition, such as sensory processing disorders or verbal processing disorders or there are others. Dietary change makes no difference.
3. Accurately diagnosed ADD/ADHD. The brain scans and things required for confidence in diagnosis aren't often done, but when they are it's clear that there are a handful of patterns that are physical and everpresent. Dietary change makes no difference.
4. Comorbid food intolerance and disorder, where removing food triggers makes a huge difference but does not remove the physical disorder.
Note that the fourth is common, where dietary intervention makes a huge difference and makes things much easier, but where the condition remains and medications are still needed for maximising daily functioning. Diet and other approaches are important and may reduce symptoms to manageable without the need of medication, but to emotionally resist medication because you don't want your child to need it doesn't help anyone. Note that in recent years prescription of stimulants is restricted to only some GPs, and not all can prescribe.
Comment from Howard Dengate:
Don't forget there can be withdrawal symptoms - the worst behaviour again, tapering off. http://www.fedup.com.au/factsheets/symptom-factsheets/withdrawal-symptoms
My son has just been diagnosed with Geographical tongue and he is in a lot of pain. It seems a coincidence that it happened just after hubby and he went to McDonald's and had a huge feast. A few hours afterwards my son went into such an angry rage for approx 6 hrs. He was uncontrollable, couldn't talk to him or reason with him. Screaming with rage in my face and his 2 year old sister's face and his tongue flared up at the same time. His behaviour has calmed down again but tongue still so red and sore. Is this just a coincidence or is there a connection? - Shez
One of my boys (4) has geographic tongue. It has never once hurt him and we first noticed it before he was 2. He probably has it more often than he doesn't. We have had him tested for all sorts of things when he was little. We put it down to an intolerance to wheat back them but he seems to have settled down now. Nothing in particular makes it flare up just happens - Jaycinta
One of my boys has it as well and same as your boy it has never hurt him - Louise
Salicylates response here for something similar, although not diagnosed. And yes, horribly painful - Judith
My daughter had a geographical tongue. Later it did settle down but now at 15 whenever she eats certain foods her lips go red, dry and cracked. Certain colours and additives like in bbq flavoured chips or corn chips sets it off - Christine
Howard's comment: For many it runs a course of about 7 days, is painful and there is little that helps the pain.
From Failsafe Cookbook: Geographic tongue (benign migratory glossitis) - in this condition, bald spots surrounded by white edges make the tongue look like a map of the world. It’s in the same category as irritable bowel symptoms, since the mouth is the beginning of the digestive system. Any of the usual culprits can be involved, including salicylates and dairy products.
See more IBS factsheet
I don't think you will ever fully understand the impact your many years of hard work have had on thousands of lives. There are so many people who are thriving because you two helped them to discover the things that were causing so much suffering. No doubt you've had your fair share of scepticism & criticism over the years, but when you see the results of eating non-FS food it's impossible to deny that this is all very real! Thank you so much - Lauren
I started on the failsafe diet over 10 years ago and it made a huge impact. Without Sue's book and TV appearances, I would have never known what was wrong with me. Thank you to the both of you - Nat
I've just come out of the 5 week strict elimination with my 5-year-old, and I just wanted to encourage you as it's been a real change for us: bed-wetting and accidents have stopped, tantrums have been eliminated, etc. I'd encourage you to just keep it really simple for awhile. The kids won't mind about having the same things over and over again - Megan
I have let my daughter experience non-failsafe foods on holiday. Just quietly it is worth the effort to keep on FS all the time. She is going from meltdown to meltdown which doesn't make for a relaxing holiday! On FS she is calm, caring and clear headed. My daughter did have withdrawals, which initially looked worse than the original behaviour. But it was worth it in the second week when I had a child who I could really get to know - Bronwyn
My first anaphylactic reaction (almost ... swollen throat and tongue) came about just about 8 hours after taking Orthoxical for a dry cough. The hives began fairly soon afterwards and got slowly worse, until I saw a specialist and was diagnosed with salicylate intolerance. Had it now for 20 years. -Jackie, NZ
Sue's comment: What causes salicylate intolerance?
It is common for people to report to us that they developed salicylate intolerance after taking a course of salicylate containing drugs such as aspirin or drugs with known salicylate cross-reactivity e.g. anti-inflammatory drugs such as Ibuprofen.
However, in this case, Orthoxicol dry cough mixture contains paracetamol (safe) and Dextromethorphan (an opiate derivative unrelated to salicylates although known to cause rare allergic reactions). Of the inactive ingredients, possible problems include:
-artificial red colour (allura red E129)
-menthol (very high in salicylates and known to cause anaphylaxis
-raspberry flavour (very high in salicylates).
Triggers of food intolerance listed by RPA Hospital researchers include exposure to environmental chemicals, illness, medications and stress. It seems possible that one, or a combination, of the ingredients in this medication, may have led to longterm salicylate intolerance.
Orthoxicol Dry Cough ingredients http://www.medsafe.govt.nz/regulatory/ProductDetail.asp?ID=1441
Allergy to Dextromethorphan, medical journals http://onlinelibrary.wiley.com/doi/10.1111/j.1398-9995.2004.00474.x/pdf
Allergy to Dextromethorphan, patient reported http://www.steadyhealth.com/topics/is-anyone-else-allergic-to-dextromethorphan
Anaphylaxis in an infant caused by menthol-containing cologne http://www.ncbi.nlm.nih.gov/pubmed/22209027
Allergic reaction to methol in mint leads to asthma http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3390130/
My 8 year old son, who was very close to baseline on the diet, came home one evening stuttering so badly my husband took him to the ER, fearing maybe he'd gotten a bump on his head at tae kwon do, although he denied this (we had to have him write his answers because he couldn't get two words out in more than 3 minutes.) He'd never stuttered before.
I called the headmaster and the school, and two panels in his classroom had been painted the same day. The kid came home after 10 hours in hospital, all tests normal. Since then he's been stuttering on and off (I believe the Israeli craziness for repainting walls, "nice smelling" floor cleaners, laundry powders and fabric softeners plays a role here)... I've learnt the hard way to keep the kids at home when repainting is going on at school. - Emma from Israel
I have just started the failsafe diet because I have Crohn's Disease, rheumatoid arthritis (RA), and GORD among other illnesses. Last week I could barely walk due to RA joint pain, this week since I've been on the FS diet (day 5) my morning stiffness pain has gone and my RA pain is virtually non-existent which is fantastic cause I have been struggling with the pain for a long time.
TWO WEEKS LATER: I’m having marvellous results with my RA through my dietician who put me on the low to mod salicylates diet. Although I only have very minor pain it would seem even bananas and red delicious apples (peeled) are a contributing factor for me.
I love being pain free, and being able to get out and enjoy life again. As an added bonus the diet has helped me in other areas of my health as well - Leann
Here is selected edited feedback from the petition for Unilever Australia to remove the natural colour Annatto 160b from Streets food products, with 5,511 supporters to date.
PLEASE sign the petition if you have not yet done so
Following some reports from health professionals, the feedback is organised by symptom:
Allergy type reactions
Violence, anger and self-harm
IBS Irritable Bowel Symptoms
Hives, eczema and skin conditions
Depression and anxiety
Insomnia and night terrors
Migraines and headaches
Clearly this additive has not been adequately assessed by those entrusted by the government to protect us and our children.
Feedback from professionals:
As a dietitian with decades of experience in helping clients with food chemical sensitivity, I have certainly come across numerous people who react to annatto during food chemical challenges. These people are then advised to avoid any products containing annatto. IT would be great to see more companies remove this troublesome additive - Melanie (dietitian)
So many of my clients test up with a reaction to annatto 160b and once eliminated from diet their lives change for the better - Trish (dietitian)
I have a child affected by Annatto 160b and as a dietitian I see many other people affected by this food colour - Jodie (dietitian)
I am a neuropsychologist who is determined that science should be used to inform – Clare
Allergy type reactions:
I am one of many adults adversely affected by 160b. In fact, I have come close to dying on three occasions due to 160b – Marian
160b effects children's behaviour and not for the better. How do I know this? Because I have witnessed and a number of occasions now my well behaved daughter turn into a hyper active, defiant and aggressive child within 2 minutes of consuming products within 160b in it - Patricia
I've spent many nights in the hospital emergency with my daughter suffering severe breathing difficulty after consuming 160b. I have repeatedly asked to have some sort of medical certificate stating that she has an allergy to the additive 160b only to be told that the tree growing the nut that the colour is derived from does not grow in Australia so they were unable to provide it. I have been met with "crazy lady" looks at every which turn. My son also exhibits behavioural problems after consumption. What are we really exposing our children to in unnatural proportions? All for unnatural aesthetics – Sandra
1 Daughter anaphylactic 2 all artificial colours including 160b & other daughter gets asthma & it's in a lot of ice creams & I'd like the girls to b able 2 have more choice & not miss out – Katrina
My child is allergic to 160b and this means we have ONE choice of which product we can buy – Cara
We have allergies to annatto - Brooke
Violence, anger and self-harm:
160b affects my son. He says it is like a switch flicks in his head and he can't stop – Julie
I have 2 daughters that become violent and angry after consuming 160b – Rebecca
I have a daughter who reacts badly to annatto 160b. Anger, sleeplessness, slapping her own head repeatedly when angry and not coping: all due to this additive, which is in so, so many food products. Please listen companies, and use alternatives! - Mel
Eating foods coloured with annatto 160(b) causes irrational anger and increased impatience in my 35-year-old self, so I'm not surprised that it causes such self-harming behaviour in children. I would love to have a greater variety of dessert products available to myself and my family – Keira
My child reacts with aggression every time he consumes annatto – Susie
I’m signing this petition as my 3 children react aggressively when they ingest Annatto (160b) - Alison
I see my children turn into monsters when they eat 160b – Kristina
My children react to 160b, it makes them angry. We don’t buy *any* products which contain it – Daryl
My kids go crazy for up to five days after eating things containing 160b. We've avoided it for years now as the consequences were just awful and profoundly affected – Elizabeth
Discovering the cause of our daughter’s opposition and aggression when she was around four was life changing for us. Who would think that a a "natural" ingredient could cause so much angst. To this day I can guarantee if she has 160b I will get a call from her teachers the next day. Please remove it - we only buy peters icecream without 160b. Would love to be able to buy your products but not worth the reaction. – Maryjo
My son acts so insane when he accidentally gets annatto that I have to keep him home and send everyone else out of the house for three hours. He races around like a maniac, climbs people, laughs hysterically, talks rapidly, is completely defiant. I read labels very carefully. My daughter and I have both put products back on the store shelf as if it might bite us if we see annatto in the ingredient list and I was considering buying it.
That's because it might just cause her brother to bite her. He's broken her skin open after ingesting annatto, once in vanilla ice cream, and once in white cheddar crackers.
Our daughter is like Jekyll and Hyde after eating anything with Annatto in it! She crawls on the ground instead of walking, babbles incessantly, has epic meltdowns (kicking and screaming). – Michelle
My son Riley's ODD completely disappeared over a 2 week period after removing this chemical from his diet. – Robin
My son too reacts to Annatto 160b. Within 5 minutes of eating food with this additive, he becomes hyperactive, aggressive & violent. Please remove this additive from your ice cream! – Nicki
IBS Irritable Bowel Symptoms:
I am in my 40's and it took a long time to discover that Annatto 160b is one of the triggers of ibs, sinus and arthritis. It is unnecessary and should be banned – Hilary
A family member is intolerant to 160b. Diagnosed with IBS, Gastro-oesophageal reflux, oesophageal ulceration with associated anaemia from bleeding at 5 yrs and recommended steroids for life. All fixed by removing 160b. This family hasn't had a Streets ice cream in over a decade and a half – Eve
160b is one of the main causes of my colitis, clinically proven at RPA hospital! It is terrible stuff – Kate
My son gets terrible stomach aches from 160b - Sarah
Hives, eczema and skin conditions:
I am in my sixties and I react to Annato160b with dreadful hives. Please remove this colouring and therefore increase the range of foods I can eat – Ann
Both my daughters have severe reactions to 160b. Both behaviorally and with nasty eczema-like rashes. I want them to be able to eat ice cream without pain! – Zoe
Through the elimination diet we discovered that two of my daughter’s severe eczema was caused by 160B. I've decided, after seeing what it does to those two children, that no one in the family should consume it - Stephanie
My son reacts badly to annatto. Raised white spots all over his ears patches over his face. Gets extremely confused can’t concentrate on anything and feels very ill – Danielle
Depression and anxiety:
My emotions go 'all over the ship' when I eat anything with 160b in it. I avoid it like the plague – Julie
This food colouring always sends my daughter into depression - Nicole J
My children react to 160b with aggressive behaviour, sleeplessness and depression - Jennifer
Insomnia and night terrors:
160b has a terrible effect on me causing insomnia and migraines. I can't buy products with this chemical in it. Please take it out for my sake (and the kids affected too) – Peter
We have been avoiding annatto for years as it keeps my husband and 3 children awake and feeling wired for hours if they have it at dinner time – Jessica
Annatto causes my son to head bang and have night terrors. We do not by streets products currently due to the fact that this colour is used. Please think our your consumers, many whom are children – Lauren
My kid eats food with annatto and has insomnia, restlessness, anxiety and extreme behaviour. It's not needed. It's a colour. The food tastes the same – Marney
This interrupts my 6 year old daughters sleep for several nights in a row. We will not buy streets ice-cream because of this – Amanda
I want to be able to feed my 4 children and myself icecream which isn't going to keep us awake all night – Madeline
160B causes me to have post nasal drip as well as insomnia – Carol
My son reacts badly to 106b we had sleeping issues, anxiousness and hurting himself, tantrums since removing it he is a lot calmer I don’t buy anything with this additive in it. It is sad that every ice cream has it in it and also yoghurt particularly children’s yoghurt. Food companies need to start doing something about it. – Colleen
160b kept my daughter from sleeping well until she was almost 5. With it not in her diet she now sleeps well. – Joanna
Migraines and headaches:
I am signing because 160b gives me migraine. Please remove it from all products – Judith
I have adult children that have reacted to 160b all of their life, nasty additive that adds nothing to the icecream except a headache, bad behaviour and rashes! We have only ever purchased icecream without this additive – Janelye
160b is an unnecessary food additive. Natural does not always mean good, as in this case with massive headache and irritation a common effect – Kathleen
An ice-cream headache I can deal with. Annatto gives me chronic pounding migraines... – John
My 10 year old son gets pounding headaches from this additive: it now seems to be in nearly every 'natural no artificial colours or ingredients' food. There are better alternatives (beta carotene, turmeric) – Iris
This additive is harmful to adults as well as children, if I accidentally eat a single serve of food (ice-cream, yoghurt, pastry) which contains it I get a violent migraine which lasts for several hours. I would urge you to cease using it in all of your product lines – Ben
My son was also negatively affected by 160b. He had a permanent bruise on his forehead and sleep issues until it was completely removed from his diet - Lisa
My son reacts to this additive with headbanging – Heather
This turns my 3 year old into a head banging crazy mess! Horrible stuff :( - Annette
My 2 daughter had a permanent bruise on her forehead for about 6 months when she started solids from banging her head on walls, her cot, the porcelain tiles, on the floor and head butting me. I was so worried she was doing permanent damage and I asked about it on a mothers’ forum. Someone suggested 160b was the cause and it was in the cheese singles that she ate everyday. I stopped the 160b and it turned off like a tap. The headbanging only began again when she ate something containing 160b. It is banned in my house now! – Anita
My son reacts to 160b. As a small child he would bang his head on the doormat or concrete floor to get rid of the headache. When we stopped the yoghurt with 160b, the behaviour stopped - Claire
Thank God we connected annatto 160b with our (then) 4yr olds head bashing and aggression, shudder to think where we'd be if we hadn't removed this entirely from his diet – Carmel
My son banged his head against the bed for over a year and a half before I eliminated it from his diet, once eliminated he stopped within 2 days. BAN ANNATTO! – Katie
I'm signing because my daughters deserve to eat safe food. 160b causes seizures in my otherwise healthy 11 yr old. Listen to the families who live it, its not safe! – Lisa
Your company is just NOT LISTENING to the many, many people who have TOLD you they react to the "natural" colour 160b
My three grandsons have proved to me time and time again that this one additive causes major behavioural problems in them. They also know this and even the 6 year old will ask if a product has 160b in it now, because they do not like how they feel when they have consumed it. Small amount or not ... it IS a major problem!! Please acknowledge that. – Jenny
I always check labels before I buy, and if a product has annatto it's disappointing, because it goes straight back on the shelf – Caroline
I don't buy anything with annatto in it. Even a teensy tiny bit! – Ingrid
This feedback includes material from  160b annatto: feedback from petition 1 (September 2015)
More information and scientific references on annatto 160b
Sign petition please
I have been aware for a few years that my daughter's behaviour is severely affected by annatto (160b). She becomes loud, aggressive and irrational (cries and tantrums at the drop of a hat and cannot be reasoned with).
The past few months she has been becoming very anxious and has been developing a habit of pulling her hair out, and running it through her teeth, numerous times a day. It has been increasing fast, and I could see she was unable to control it.
I was starting to stress about it and think about the impact this may have on her life, long term. Then I had a lightbulb moment- annatto- it had slipped back I into her diet.
I immediately talked to her about this, cut it from her diet and within a couple of days it had drastically reduced. It has now been a week. Still reducing. She is much more relaxed and just generally calmer in herself - Carla
See more about compulsive hair pulling
We took tomatoes out of our diet almost 5 years ago as we were heading down the ODD road with our then 8 year old. I happened across something on the fedup website which said to try stopping tomatoes if you are thinking ODD. We have not looked back. Within 48 hours I was no longer being hit or sworn at and there was no more punching doors or walls. We were already trying to cut out all additives and preservatives and basically as many numbers as we could. The results were life changing, at home and school. We started the elimination diet in 2015 and have seen even more results, from everyone in the family! I definitely agree with everyone in the family doing it at the same time - Penelope
After all these years of checking labels and numbers I have found I am now super sensitive to anything with MSG 621 and its friends 627, 631 and 635 especially.
Yes I was sensitive to MSG before - it made me thirsty and gave me a headache but just this year I got caught with Aldi products (cheese and bacon balls, I had about 10 of them !). They say “no additives” etc and it has “NO MSG” in big letters on the packet but it was full of 627 and 631. They are worse than 621, 50 and 100 times more potent. After the pain I suffered Ii believe it.
The bowel pain and diarrhoea was instant, that is my first bad attack since I have been on a strict “no 600’s” diet. The pain was so intense I thought I was dying ! - Enid by email.
See 129 ways that MSG is hidden from consumers.
I have never felt better over Christmas than I did this year on the elimination diet! The salicylate challenge resulted in a small breakout of rough skin on the face, headache and shortness/acidity creeping back into persona. In the quiet of going to bed I became aware that my ears had a buzzing/whooshing sound pulsing in them ... The next day they felt as though they were blocked and I couldn't clear them or hear properly, like I had a cold but I didn't - Vanessa, by email
My son is sensitive to sals (all the classics - citrus, berries, tomato sauce/paste, pineapple, dried fruit), and amines (not so much). We recently had a family dinner conversation about my food cravings during pregnancy and my husband rightly pointed out, when I recalled the various cravings for each child, that I had major salicylate cravings during that son's pregnancy - I had orange juice and dried apricots till they were coming out my ears! I haven't found anything much about pregnancy and salicylate foods, just aspirin, so I thought you may find this interesting. - Peta, by email
Responses on facebook:
Never thought of that. I had a monster craving for strawberries and ate several punnets a day sometimes. My mother warned me that I would have a child with strawberry birthmarks (old wives' tale but I actually did much to her repeated "told you so's!!). Interesting question though as my daughter was subsequently very sals intolerant (and yes, especially strawberries!) - Susan
I have often wondered this. I ate A LOT of fruit salad when pregnant with my son. I also worked in a flavour and colours factory, surrounded by chemicals. Coincidence? - Sarah
I went mad on tomato and avocado sandwiches when pregnant with my daughter - she is fine with sals and amines - note - I hated avocado before and after pregnancy. Avocado is her favourite food - Teresa
Mandarins, tomato, chillies...and a son who is sensitive to salicylate. Very interesting! - Louise
Milk. Milk like it was going out of fashion! I mean I was up in the middle of the night chugging a litre of milk almost every night! Ds can only handle a2 and fresh cheese or fresh yogurt. Any other dairy and his turns into a stink bomb lol - Kyra
I ate lots of fruit, juice, dried fruit and my son is intolerant to salicylates and now after eliminating from our family diet, I can't tolerate much of them either - Fionna
I agree with this link. 3 of my 5 show clear links. One it was additives. One fruit and milk. One I had no cravings and she has no major problems with anything. My youngest it’s too early to see. But had the milk and fruit craving for him so we will see soon enough - Kristie
One explanation for this may be that intolerances are linked to the kind of gut bacteria you have. Mum’s gut bacteria is passed to baby during particularly vaginal birth as well as through close contact and breast feeding thereafter. Any individual quirks are likely to get passed on too - Paulyn
I am so intrigued by this! A recently pregnant work mate of mine, who ate very healthily, was violently sick through her entire pregnancy. Luck of the draw? I don't think so! Of course everything we put in on and around our bodies must be affecting us. We are just so naive to it! I'm positive her morning sickness was caused by the 'very healthy' foods (ie plenty of fruit and veg) she was consuming. But how do you tell anyone in this society that something they deem as healthy may not particularly be, for your body, at that particular time. Honestly, sometimes I feel like you lot are the only ones who truly 'get' me - Rachel
I hope my experience is of help or encouragement to someone.
I first did the RPAH Elimination Diet (strict dairy and gluten free) in 1997 after experiencing chronic hives. I had the help of a dietitian and had seen an immunologist. The diet showed I was sensitive to salicylates and amines. For many years I successfully managed my hives by taking a daily antihistamine and also by reducing my intake of very high chemical foods, although I wasn’t very strict at all with managing the food side of things.
Over the last 5 years, I rarely had hives anymore, and thought maybe I had outgrown my intolerance. So I gradually increased my food chemicals again. Then in 2012, I experienced a Major Depression for 8 months. I was feeling so low, so hopeless, and crying all the time, it was the darkest time in my life. I work as a Graphic Designer, and I found my creativity totally vanished when I was depressed. This was very frightening, being creative always came so naturally to me, and losing this ability had a big impact on my livelihood too.
I was perplexed as to why I would be depressed, my life was wonderful, I couldn’t see a reason for the melancholy that had overtaken me. I remember telling my GP that it felt more like a ‘chemical thing’, like something was out of balance with my internal chemistry. In hindsight, I should have trusted my instinct on this... instead, I took my GP’s advice and I tried therapy, exercise and rest, and then antidepressants (SSRIs). Nothing worked and the antidepressants gave me nasty side effects (nausea, migraine with aura, hot flushes, diarrhoea, nightmares, anxiety, muscle twitches, split tongue, light sensitivity, foggy brain, blocked ears), and then some nasty withdrawals (brain zaps, teary, lack of appetite, insomnia). During the depression, I was also suffering badly with muscle pain. I was seeing a physio very regularly, and taking maximum doses of Panadol every day, but still had chronic pain.
At the time, I was taking fish oil supplements because I believed it may be beneficial in treating depression. I was also taking probiotics, believing it would boost my immune system – I never felt well! I stopped taking probiotics after I saw no measurable benefit, and when I stopped taking them, I noticed my muscle pain actually improved a bit. Then the penny started to drop... maybe my food intolerance symptoms had switched from hives to depression and muscle pain! I realised that the fish oil supplement I was taking was very high in amines, so I stopped taking it, and noticed a further improvement with my muscle pain and eventually my mood. Then I started searching online to see if depression and muscle pain were known symptoms of food intolerance. Back in 1997 I don’t recall being informed that these could be symptoms, but sure enough I found myself reading about other people’s experiences on FedUp! Thanks to you for all the work you have done and continue to do, to shed light on this complex and misunderstood issue. Your forum and website, and cookbook really helped me put the pieces of my own health puzzle in place.
So then I also began to reduce my food chemicals, and other chemicals such as perfumes, and cleaning products, and I saw a slow but steady improvement in my depression! I wanted to be sure I was on the right track, so I booked a dietitian to help me through the RPAH Elimination Diet again. I started elimination with a local dietitian, only to quickly realise she didn’t have enough experience or knowledge in this area. For example, she advised me to liberalise my diet as I went through the challenges, adding back any foods I didn’t respond to. I knew that this was likely to confuse my results, and immediately lost confidence in that particular dietitian. I voiced my frustration about this on your forum and thankfully another member recommended a marvellous failsafe dietitian to me. I was so happy to find that she was able to help me straight away. It was such a relief to have her insight and also her support through the rest of the process. She really took the time to consider my case, treating me as an individual, and showing great compassion towards any struggles I had. With anxiety and depression being triggered during my challenges, she was wonderful at encouraging me to stick with it until the end.
The results of my elimination this time were much clearer and more accurate than last time, and this was mostly due to her attention to detail, and ongoing support. She was very generous with her email support and this made all the difference during the tricky challenges. I am now finished my challenges, and have discovered that salicylates trigger ringing ears, acne, restless sleep, mouth ulcers, and anxiety. Amines cause depression and muscle pain. Food has always been a real source of joy for me, and although it is tough to accept that I have to restrict certain foods, it is immensely empowering to be able to manage my health this way. My lovely dietitian is now helping me to liberalise my diet, and has been brilliant with offering me a few different approaches for how to manage this stage too - Rachel by email
See our recommended dietitians
I'm happy for you to share our story, maybe it will help some other poor mum out there who is ready to strangle her kids. Life just shouldn't be this hard.
My life has changed immensely since embarking on our journey in January 2014 after the heavy prodding of my husband. I will admit I was a cynic, however after 3 days of eliminating a few things just to get started while I was researching, I have become a massive convert and preacher of elimination and food intolerance! I saw my 4 yr old turn into an emotional loving boy within just 3 days. It was a massive change.
I am still nowhere near getting the diet right, in fact I have just gone back to full elimination to start again because I was unsure how to challenge correctly and I totally messed it up. I am currently reading Fed Up with ADHD (unfortunately out of print but incorporated in Fed Up). You have the best description of it in there and I now finally understand. NOTE that the content of Fed Up with ADHD is available as an ebook
I have 4 yr old and 7 yr old boys and life is hell on wheels most days. My 4 yr old suffers from intolerance majorly and I'm still unsure whether my 7 yr old does or if he is just frustrated with the almost intolerable behaviour of his little brother and acts out. My husband and I are at our wits’ end or, fed up you might say.
My 4 yr old (Alex) would be diagnosed with ADHD any day of the week when he is off fs diet. His behaviour is extreme, we walk on egg shells every day and are anxious every time we leave the house as we never know how he is going to be. On fs diet he is a gem and very bright.
From my observations (still needing proper challenging) since we started are that he is extremely sensitive to amines, sals and preservatives, artificial colours and flavours - the works. I'm hoping with proper challenges we will find he can tolerate small levels of some of these things. Some reactions are almost instantaneous (sals and some preservatives, thinking sulphites antioxidants and sorbates I think) "like a switch was flicked" said the daycare teacher Or within a couple of hours, others are within 24 hours and last for around 7 days (amines I think) and then others are slow building (some preservatives I think). I have stumbled and come undone with the slow building reaction and my underestimation of the power of Sals and just how many foods contain Sals.
Feeling positive. The concentration and imagination without so much crap in my 4 yr olds system!! Speech therapist also commented today that she had never seen him concentrating so well! The effort really is worth it!
UPDATE 2 days later:
We started elimination then I messed it up on day 7, after we'd been through the worst of the withdrawals (grrrr!), by giving him 320 without thinking. So back to the beginning. I kept a lot of things reduced whilst I went back to planning and got better organised. Full on d-day was yesterday. The first drawing was coming down from the reaction on day 7 and the second one was about 4 days later - it is his Alien puppet (hence the fingers which end up being the teeth). We tend to start seeing results with him at around day 3/4 - he becomes more emotional and starts to engage better, however we still have a lot of unpredictable up and down behaviour until he reaches baseline and then he becomes a beautiful loving little boy who can learn and concentrate so much better.
UPDATE 3 weeks later:
We are finally at baseline and what I originally thought were food induced - ADHD type behaviours for my youngest and somewhat for the older one, now appear to be more ODD related. I still think there are ADHD traits but the ODD seems to be coming through loud and clear now. Our youngest has never been disciplined as much as our oldest as he has been such a handful right from the very first day he was born, it wears you down. We got very slack on the discipline front with both boys are time went on. Once we discovered that the issues might be food related, we got even slacker "because they can't help it, it's the food". BIG MISTAKE - MASSIVE!!! So here we are now, having to slowly dig our way out of this hole we have made.
So today, we start salicylate challenging, at the request of my oldest. We are struggling with him the most to stay on diet. We have been made aware that there has been apple juice poppa drinking, candy cane, grape and some chicken chip snack thing eating at school!!! Some unhelpful friends have been sharing food with him. Explains some of the behaviours whilst on elimination. I have to say though that this challenging stuff scares me, because I am knowingly giving them food that will most likely make them react. We'll be doing it slowly I can tell you. I have seen a dietician a few times at the beginning and I will contact her again soon as the challenges progress just to get some tips and pointers. I've also spoken to our GP, who whilst not being convinced that food is a big player, is very open minded and has agreed to support us through it to ensure that the boys are still "healthy" whilst it’s all going on. I believe I will have him converted by the end of it!
Thanks for the tip on the antidote - I didn't realise it was only for Sals, I thought it was for everything. No wonder sometimes it didn't appear to work! (slaps hand to forehead).
UPDATE 10 days later (just before Xmas):
We started a salicylate challenge last Monday - challenge TERMINATED on Saturday night!!!!
I started to see some small changes each day however thought that there were other possible explanations and so I continued on. By Friday I really started to think that a reaction was happening. By Saturday night, I was ready to scream!!! My boys had gone from happy, polite, compliant loving children to ABSOLUTE RAGING MONSTERS! Here we are 3 days after cancelling the trial and I am struggling to keep them under control. The side effects are worse now (I'm hoping they're withdrawing already!).
to be continued....- Nicky from facebook group and emails
This week marks the last week of prep for my daughter. She has done well and is reading level 9, which is expected. She is well behaved most of the time and a joy to be around they say.
This is a far cry from the first term at school, where I was called every second day, where I had to take her home some days, and she was suspended one day. I was sent to management of young children programs, they had a buddy mentor for her, we went to the pediatrician who suggested ODD and ADHD and there was a big management strategy implemented for her. They were discussing half days for her. I was quite upset understandably and so I took action. We broke for the school holidays and she came back a different child after we started the diet.
She got student of the week that first week and she sat so quietly and respectfully at the ANZAC days parades. In that first term she had 12 incidents recorded against her name at One School. In the second term only 2 (corresponded with challenging milk and then salicylates) and as far as I know no incident the last 2 terms. So it works for us - Roxanne by email
My salicylate sensitive daughter had a tooth removed under general and we were told to use Savacol mouthwash 3 times daily for a week post surgery to keep the stitches infection free.
I've noticed her eczema has returned with a vengeance and a red anus ring as well as deplorable behaviour. Savacol is marketed as an antiseptic and alcohol free, with no other ingredients listed than the main ingredient chlorhexidine gluconate. It reeks of mint and is bright blue coloured liquid. Although she is only gargling with this mouthwash and not drinking it per se, I am wondering if this could be the culprit. - J
Sue's comment: you don't have to swallow mouthwash to be affected by additives and strong flavours. They can be absorbed through the mucous membranes lining the mouth. It's the same problem as toothpaste, you can see similar stories on our Toothpaste factsheet http://www.fedup.com.au/factsheets/support-factsheets/toothpaste
I hate the way the pharmaceutical industry has stopped listing nasty additives. Putting profits ahead of consumer safety as usual. It's best to follow RPAH advice at all times: "Avoid unnecessary medication". Consider home remedies first. When I had a wisdom tooth removed recently, I was told to gargle with salt water and use icepacks for pain. Both worked really well and were failsafe.
I am a first time mother to a little girl who has just turned one. She was a contented baby who always slept well until 6 months (when I started her on solids). Night time wakings usually consist of severe tummy pain, wind, reflux and very irritable. After that, things got progressively worse. Once we thought it was teething and she was given nurofen (high in salicylate compounds) over a few nights. After having a UTI infection recently things went downhill and she had a major reaction to an antibiotic called Bactrim (syrup contains two benzoate preservatives). Since this episode our daughter has suffered SEVERE reflux and improved after Gaviscon. I found it hard for doctors to believe initially that it was reflux, but found a specialist (paediatric doctor) who examined my daughter and was witness to her wet burping. My specialist has prescribed Nexium and Gaviscon for 6 weeks.
Having looked for answers as to what my child might have, and no help from any GPs I decided to write a diary of food and when these behaviours started. I have tried my daughter on gluten, dairy and wheat free diets with no success.
I truly believe my daughter has a salicylate intolerance. I only came across this after reading a book about baby sleeping habits which mentioned that is a big factor in some children's night waking. Since coming across this, I noticed straight away that foods high in Salicylate saw us having horrendous nights in pain eg. Avocado, watermelon, processed ham and turkey (nitrate preservatives), etc. I was also unsuccessful breast feeding and looking back I had an extremely high intake of tea and other high salicylate foods. My husband and I are both Italian Mediterranean descent. I did have some intolerance when I was a child to strawberries and tomatoes and would have itchiness in the corners of my mouth and fingers and toes and was also quite an anxious child.
UPDATE: My daughter was basically eating all of the fruits and vegetables listed in the very high category of salicylate foods. Since taking away salicylate foods I am seeing a an increase in sleep and a much more settled baby. I look forward to contacting one of the recommended dietitians for more assistance. - Danielle, Qld
My younger sister aged 8 has alopecia areata (patchy baldness) but it has turned into almost alopecia totalis (complete lack of body hair including eyebrows). She has tried going gluten free, but it’s hard. There are two coeliacs in the family. Doctors say it is nothing to do with diet and won’t do a test for coeliacs - woman at Jindera talk, Fedup Roadshow 2015.
Sue's comment: I find this extraordinary. Medical journals around the world are packed with articles about the link between alopecia and coeliacs. The point they make clear is that the gluten free diet has to be scrupulously gluten free – no mistakes – for at least several months. I know it’s hard, but that’s what you have to do. Perhaps you could print out the following articles to show your doctors.
Coeliac disease and alopecia areata in childhood, Feesatou et al, 2003. Researchers found that administration of a gluten-free diet resulted in complete hair growth. http://www.ncbi.nlm.nih.gov/pubmed/12603809
Reappearance of alopecia areata in a coeliac patient during an unintentional challenge with gluten, Viola et al, 1999. Describes a patient with coeliac disease whose alopecia was the only symptom. The alopecia disappeared completely after a few months of strict gluten free diet and reappeared after an unintentional prolonged introduction of gluten. After a strict gluten free diet, hair regrew. The researchers concluded “The possibility of a direct relationship in some cases, between coeliac disease and alopecia areata is confirmed” http://www.ncbi.nlm.nih.gov/pubmed/16498340
I started on this journey after attending one of your talks five years ago. My son was having seizures and was on anti-seizure medication. After learning about the diet, I decided to ditch the medications, which weren’t working anyway, and attempt the elimination diet with challenges. It was the hardest thing I have done in my life. It took us 4 months to complete, because when my son had a reaction to a certain group, it was a major reaction. From this we found salicylates were the cause of his seizures. As soon as these were reintroduced, the seizures returned. Remove the salicylates and the seizures went. He also had an extreme reaction to sulphites, which I would never have known anything about unless I had attended your roadshow – mother who attended Wyong talk Fedup Roadshow 2015
Our son's breathing problems and wheezing started at four months, when a GP put him on antibiotics. He was on the nebuliser at least twice a day with corticosteroids, ipratropium and salbutamol and oral steroids thrown in when he got really bad. He had all the tests for causes - dust mites etc - which proved negative. Then he started solids at 5 months and got worse.
When he was two and a half we started on the elimination diet. His asthma disappeared in the second week.
Challenges showed that Joe reacted to sulphites, benzoates, nitrates and colours, both artificial and natural. One musk stick (artificial colours azorubine and erythrosine 127) started him coughing within three minutes. Annatto natural colour 160b took a little longer. Artificial yellow colour tartrazine 102 turned out to be the worst of all. Through experience, we learned that Joe gets asthma from colours in antibiotics and toothpaste. Additives can also be absorbed through the skin, so he also gets asthma from coloured shampoo and liquid soap. - from Fed Up with Asthma
I am a 64-year-old male. For more than 20 years I had intermittent gastric problems that were obviously caused by something but I could not figure out what it was. Eventually I narrowed it down to potassium sorbate (E202).
After eating something with potassium sorbate in it, several hours (6-9) later I would get extreme flatulence and also belching for several hours. Usually also accompanied by loose stool. It would go away several hours later, after (I believe) the sorbate passed out of my system.
It was not an incapacitating problem, but it was extremely uncomfortable. I am very happy now that I can avoid it.
The main foods that were causing me trouble were fruit-flavored drinks. I am thankful that in the past couple of years there has been a tendency to produce products without preservatives - MP
The Fedup book and approach has definitely changed my life! My daughter is almost four now and, when we manage her food, she is a wonderful angel! When we let it slide, well, we regret it but we get through it!
I remember reading about other parents who found the changes in their own health amazing—I am definitely one of those. I have struggled with IBS, have had fructose and lactose absorption tests and been advised to limit both substances. After years and years of struggling with food, through the elimination diet, I finally worked out that sulphites are the number one problem for me! When I avoid sulphites, I am perfectly fine (which can be tricky as they are sometimes unlabelled)!
I have also worked out how different additives affect my mind and my mental outlook. Antioxidants 319 and 320 definitely make me fatigued, and the day after I have ingested them, I could literally stay on the couch all day (which is highly unusual for me). These are such tricky ones because they’re often unlabelled also! Chocolate makes me feel terrible about myself for the next two days. So our lives are definitely much-improved thanks to your advice.
Through the elimination diet, I have found that my daughter is definitely highly sensitive! The things that make her crazy include vanilla, apples, bananas, sulphites, honey, MSG—the list goes on! I have been reading more about gut health lately and thinking about that too. My daughter was born four weeks early and then at three weeks old, was on IV antibiotics for 5 days, followed by another week of antibiotics every 6 hours. I think this may have something to do with her sensitivities—so we’ve been having lots of yoghurt to try and build up the good gut bacteria—haven’t worked up to giving her actual probiotics yet!
Thank you for advising me to see a dietitian. I have met with one of your recommended dietitians over this whole year and she was absolutely fantastic. I cannot speak highly enough of her. I would (and have) definitely recommended her to other people (as well as your website of course!) - Erin
More Articles ...
-  Ringing in ears due to salicylates in chia seeds (November 2015)
-  160b: A nightmare state from annatto in cheese (November 2015)
-  160b: Who would expect annatto in apricot nectar? (November 2015)
-  202: Migraines due to preservative potassium sorbate (November 2015)
-  Our time with Failsafe brief but awesome!!!! (November 2015)
-  Paediatrician “very surprised that a change of diet could produce such results” (September 2015)
-  Salicylates: “I feel good now. I'm not a horrid little bitch” (September 2015)
-  One-liners (September 2015)
-  160b and salicylates, now “an intelligent boy with great leadership skills” (September 2015)
-  Teachers supporting diet for behaviour issues - facebook thread (September 2015)
-  160b annatto: feedback from petition 1 (September 2015)
-  Salicylate intolerance and acne rosacea: unable to take hot showers, have a hot drink, eat hot food, sit in a hot car or room or exercise without a painful, burning, deep red facial flush (August 2015)
-  120 cochineal/carmine: "For 17 years I didn't know what caused my allergy" (August 2015)
-  "Sensitive to everything" (stimulation, noise, smells, tags on clothes, touch ...) (August 2015)
-  Celebrating success - two short reports from facebook group (August 2015)
-  ADHD improves on diet (August 2015)
-  Salicylates in coconut oil and aloe vera caused my dermatitis (July 2015)
-  Mandarins “not recommended while breastfeeding” (July 2015)
-  I passionately believe he never had ADHD just salicylate intolerance (July 2015)
-  His behaviour has gotten a lot better already (July 2015)
-  Massive behavioural reaction to Hydralyte Ready to Use Lemonade Flavoured Colour Free Electrolyte Solution (July 2015)
-  Ursula’s story: “I will write to every health professional … to get food intolerance recognised as a diagnosis” (July 2015)
-  One-liners (July 2015)
-  Depression: facebook thread (June 2015)
-  Amines: “Failsafe eating has been a huge help in managing my anxiety and depression” (July 2015)