Has anyone had any success with fibromyalgia as my best friend is really struggling with chronic pain and depression and her sons have allergies and ASD? - Jen

I haven't formally had a diagnosis of fibro but I do suffer all over chronic pain, headaches and severe fatigue which was ruining my life. After 6 weeks failsafe, df and gf and although It's not completely gone it's 80% better than it was... I have tried all sorts of meds, nothing has worked better than this diet and I've tried a lot of different ones and doctors didn't know how to treat me or what was actually causing my illnesses so I gave up on them.. so this diet was a desperate resort and don't regret it.. tell her give it a go for 6 weeks if no changes then stop... got to do it strict tho it didn't work for me until I was strict and df/gf.. so good to not be in bed sleeping for days or not able to do anything because of the constant pain I couldn't explain because it is invisible to others they think it's in your head. . It kind of messes with your mind because you know it's not normal but nothing I did helped. Like I said I still suffer chronic pain and fatigue but it's controlled now when I never thought I'd find anything that would work - Melanie

I have CFS (Chronic Fatigue Syndrome), previously accompanied by FM (Fibromyalgia). The FM pain disappeared with the fs diet. It was excruciatingly painful all through the night for the sals challenge and now only comes back if I eat the wrong foods – Elaine

I went on this diet for other symptoms but have found my FM pain has significantly reduced - Sharyn

I've had a great help with my pain through this - Bianca

I might interest her to research Ehlers- Danlos Syndrome. A lot of people who have fibro fit the EDS criteria and there is a strong link with ASD and depression – Peta

Low salicylates might be good to try - I have a related immune issue and it completely eliminated my symptoms within a week - Clare

My mother had fibromyalgia for years (undiagnosed for most of it). At dietician’s advice she went off dairy and wheat and a few vegies and became a new person, she had energy, pain went. Amazing. The last few years she has been able to have small amounts of wheat and dairy without symptoms returning - Jasmine

Another fibromyalgia, chronic fatigue success story here. Getting started was so difficult as I was really unwell, so I spent a month gradually working my way up to it. Once I went onto strict elimination, my health improved quickly and dramatically. It's very surreal. I never considered that all my symptoms could be intolerances (I did the diet to support my daughter) and I have found very little about chronic, widespread pain being a possible sign of intolerances. Within 24 hours on my sals challenge I could barely walk again, due to pain... is this a really abnormal response, or just not talked about much? I'm 8-9 months down the track now and amines in particular give me fatigue symptoms and salicylates give me fibro-type pain. Sorbate preservatives also gave me pain throughout my body, but of a slightly different sort - Shireen

See also other stories:

https://fedup.com.au/stories/2007/557-giving-up-the-victim-role-a-story-of-salicylate-intolerance-may-2007
https://fedup.com.au/stories/2007/559-ultra-healthy-diet-led-to-asthma-and-debilitating-health-issues-may-2007
https://fedup.com.au/stories/2013/1211-to-do-the-diet-or-not-a-facebook-thread-july-2013
https://fedup.com.au/stories/2014/1273-what-has-failsafe-meant-for-you-and-your-family-august-2014

Just a little bit excited and wanted to share.....after 4 long weeks plus two weeks waiting to see the dietitian and trialling the diet by ourselves Mister 5 has hit baseline. His sweet little personality is shining through and he is happy, sleeping through the night, rash gone and life is harmonious. Thanks to everyone who helped me along the way - digital support groups rock and I'm super grateful – Jackie

Once again, thank you SO much. Your care, concern and attention to detail are amazing - Sylvia

Thanks for your book and the information, having been ill for years and not realising that it is the food that I eat, it’s amazing, it’s so hard to get any Doctors to understand - Jean

Thanks again, Sue, for everything you’ve done, and continue to do. It must bring you such a feeling of vindication & joy when you read through the many different stories people have. I’m often amazed at the different ways people react to various things. Without you, our lives would all be much harder and I thank you sincerely from all of our family ­ Lyn, by email

I've been told after many years of torture with allergies that I'm salicylate intolerant. Can you please send me the factsheet on what is safe to eat. I've been eating oat bread with chia seeds thinking it was a healthy choice. I'm from Ireland and when I ask for salicylate free products they look at me like I've two heads.

You'd be surprised at the number of pharmacists and medical profession who have no idea of sals allergy/intolerance.

I've been in intensive care five times due to anaphylaxis: the first one was penicillin, the second and third were anti-inflammatories: diclac (diclofenac) and then ibrupofen. I was being trialed for a non penicillin antibiotic and my airways closed within twenty mins. The other two times one was a take-away chicken curry and the last one was a cake while in the hospital. I had it in the cafe so they were able to take the cake for testing and (after two years of being tested for everything by the immunology team) they were finally able to tell me it was salicylates I was having an allergic reaction to. I knew I was allergic to aspirin after the anti-inflammatory episodes and as I thought penicillin but they think now it could be the colours in the capsules but they're not sure yet without further testing. However that was a month ago so I've been trying to cut as many salicylates as possible from my diet thanks to your site. For years I was prone to asthma attacks, blocked sinuses, swollen feet, bloating, constant tingling on my tongue, fatigue, fybromyalgia, streaming eyes and sweating. And to top it off I now have hypothyroidism and the eltroxin medication has not worked for me over the past two years.

Since trying to cut down on salicylates I've noticed most of the above symptoms have lessened greatly (apart from hypothyroid problem) but at the moment it's trial and error. Thanks again for you help. - Mary

Sue's comment: see a similar story [093] Life threatening anaphylactoid reaction to salicylates (October 2000)

I originally found your web site searching for a relationship between my anger outbursts and my food consumption and found it also got rid of my 24/7, five year, day-in day-out chronic back pain. I also had ongoing knee and wrist pain from years earlier that I had put down to being overweight as the pain started when the weight did and no xrays or ultrasounds found any issues.
 
In June 2010, I injured my lower back, it got better, then I would do some gardening or cut my toe nails, or spend too much time in the kitchen (I like to cook), and it would set it off again. After two years of pain /no pain, pain /no pain it stayed for five years.  Every second, day and night. I’m not fussed on pharmaceuticals available to me as they either didn’t work or I was a zombie, so I just put up with it. I bought a tens machine, table inverter, saw an osteopath, medicine man, two pain clinics, acupuncture … nothing helped for more than an hour or two.
 
In September 2016 I started ridding my diet of preservatives and numbers as I did some research on anger and food as I didn’t want to have to take the ”don’t kill people tonic” (black cohosh, chaste tree etc) for the rest of my life. I trialled this abstinence for six weeks as recommended, I wasn’t 100% off everything but probably around 80-90%. I went overseas for a couple of weeks which blew the diet then resumed the diet after Christmas realising that the anger crept in the more the preservatives did. I also noticed that the less numbers and preservatives I consumed the less back, knee and wrist pain I suffered. The more high preservative, high number foods I consumed the back, knee and wrist pain would kick in.
 
I already bought bread, toothpaste, wine and juice without numbers or preservatives and a year earlier had stopped buying baked beans, tinned spaghetti, sauces, soy and almond milk and changed my brand of peanut butter all because the ingredients in these pre-packaged delights had too much sugar/oil/salt. I didn’t realise preservatives and/or numbers were also in vegemite, crumpets, dried fruit, large volumes of oil like the type restaurants, takeaway shops and packaged food businesses (crisps, popcorn etc) use, cheese, dips, soda, jam, cordial, gherkins, artichoke hearts, beetroot (the last three pickled or tinned), biscuits, grapes, crackers, tacos, cakes, gravy as well as processed meat and prawns. I can’t believe the list goes on forever, other than the last two items these were things I ate, daily. Most thankfully I’ve found have alternatives for within other brands or other shops like health food stores for dried fruit or the Italian fruit shop for pickled vegies.
 
The damage within my back still exists as it kicks in hard with every period or too much party food. Chronic pain could all be resolved with a lack of acceptable poison.
 
Here are some recent examples….

* My husband & I went to trivia last Thursday night and to make it on time we needed to eat at the pub. The only vegan item on the menu (yes, I’m also vegan) I had eaten at the other pub they run on Tuesday, felt a bit of back pain on Wednesday and so have crossed that meal off the list as preservative free. Instead, I ate a large bag of crisps for dinner (I hadn’t bought crisps at home for two weeks to avoid them as I was eating a small amount almost every day…), took me two hours to consume but my back and knee pain was excruciating on Friday. You see, my brain can’t comprehend this, but it will eventually as Saturday, my back was a tad stiff but no pain and no pain in my knees.
 
* During my chronic pain I needed to do stretches and exercises every morning otherwise my entire back would stiffen up, if I missed four consecutive days I could barely walk. In the last two weeks I’ve not exercised or stretched four days straight, twice, and all without pain and minimal stiffness.
 
* Today I prepped food and cleaned up the kitchen for two hours, before I could just manage 30 minutes without needing to sit on a chair.

A lack of preservatives and numbers/additives in my consumption has also has greatly reduced/rid my recently developed OCD of locking my car multiple times and my depression that I’ve had since my late teens.
 
My injury is still with me as the damage has been done, but I can’t feel it unless I consume something silly. As is my anger, negativity, depression etc but it seems so far away I can scarcely feel it, it is no longer a highlight in my day.

I didn’t figure people wouldn’t believe me as everyone believed I had the pain I endured.

I was suicidal for the last 5 years coming to grips with the fact that this is as good as it gets and I’m only 40, how bad will this pain be when I’m 80. Not just my back pain, knee pain, chest pain, wrist pain, but can I stand to live with this pain for another 40 years. I changed careers because of it in my forties. Specialists have been telling me to lower my stress levels or lose weight or pace activities. I do all these things for months and no change. I stop consuming preservatives and after a couple of months I cannot feel the pain even if I look for it. And no one cares, no one believes me, maybe because I can’t get my head around it either but that doesn’t mean it’s not true. Both pain clinics I’ve been a patient at over the last few year just ignored me. I really appreciate that you have a place to share with the world the horrors of the food industry. – Alison

My daughter has been on strict elimination diet for 6 days, her rash has improved so much to the point of nearly being gone.  I knew tomatoes, strawberry, soy sauce and vegemite were definite triggers and I am still waiting to hear back from dietician about challenges after her skin has completely healed – Hannah

1443strictelimination

1445story635

I suffered my first allergic reaction yesterday afternoon and didn't know what was happening to me. After eating half a bag of CC's for the first time in many years, I began to get increasingly tired and had a nap. When I woke up I felt a burning sensation in my lungs as I breathed in, followed by an intense itching and redness on the palms of my hands. After a minute or two the itching became a painful burning sensation, then the burning stopped and the itching spread to the back of my hands. I then noticed that the skin on the back of my hands seemed to be puffy and fluid filled and my fingers were swelling. 

The itching then spread to the soles of my feet and the rest of my body. The skin on my torso and thighs broke out in red spots and hives, I also noticed that swallowing was painful and there was an itching sensation in the back of my throat and on my tongue.

Luckily it didn't progress to anything more life threatening and my partner was there to take me to seek medical treatment.

I will contact the manufacturer to let them know I suspect flavour enhancer 635 as the culprit of these symptoms. Thanks again for the information, being able to make comparisons on the symptoms I had helped me understand what might have been happening with my body - Lubov

Lubov's update:

I got in contact with the Snackbrands Australia, who produce CCs, and their representative was lovely and very concerned. I let them know that I had a reaction to what I suspect was the flavour enhancer, and she told me I should check all labels carefully and avoid the ingredients that caused the reaction in the future. Common sense, but I appreciated the gesture all the same.

The doctor prescribed an antihistamine and Prednisone, that seemed to work really quickly. The chemist also recommended I try the foods again in small amounts to try and build up a resistance to it, but I haven't been game to do so thus far.

Sue's comment:

Our recommendation would be to take the advice from The Snackbrands rep - avoid the ingredients that caused the reaction. In our experience, 635 is different from all other additives. It is the only group of additives that actually affect the immune system and reactions seem to get worse not better in many people, see a few excerpts below.

Jennifer from story [483]  Started out with "the itchiest hive-rash I have ever had" - over several years, this progressed until every time she ate 635 by mistake "the swelling seemed to get worse and worse to the point where I was definitely at risk of anaphylactic shock ..."

Sharon from story [1443] "I ate about a handful of Dorito's or CC's or whatever, and the next day I had a lumpy itchy rash all over my breasts and upper chest that lasted two weeks.... " With several worsening reactions to small amounts over several years, Sharon avoided this additive. Then one day, she unthinkingly licked the fork she had been using to stir her husband's instant noodles (containing 635). The result was an immediate and lifethreatening swelling of the lips, tongue and throat. This additive has now been banned from their house.

riborash1b

Last year (2001), I ate about a handful of Dorito's or CC's or whatever, and the next day I had a lumpy itchy rash all over my breasts and upper chest.  Also on my upper thigh. I went to the bin and found the empty chip packet and noticed the new number 635.  Then I went to the doctor who, truth be told, didn't even wait for me to finish my "theory", but told me that it was probably because I have changed soaps or shampoos (which I hadn't).  I waited (painfully) for the rash to go away - about 2 weeks.  Then I tried the chips again, and the rash was back again.  Since then, I have re-read every label on everything we have bought.
 
Yesterday, I bought a packet of barbeque chicken flavoured rice crackers.  I had 6 of them, and about 30 minutes later my face felt as if it was on fire, and I got a few lumps on my face and neck.  I read the label - it has 635 in them.  I thought, this might be a coincidence, and I won't get the rash.  I tried to convince myself that I just had a few blemishes.  This afternoon the rash is back and exactly where it was last time, and driving me mad again.  My husband has just told me that my upper back is also covered.
 
First Update

 I have just inadvertently consumed some more 635!  Eek.  My daughter's friend made some two minute noodles "No MSG Added" - and I had a dessertspoonful - no more because I didn't like the taste - ten minutes later, whammo!  The burning started, so I went and checked. The ingredients list included chicken flavour and hydrolyzed vegetable protein (and there was 635).
 
Guess I should have read the packet before accepting!!!  Am I correct in thinking that the chicken flavour and hydrolyzed vegetable protein would both contain some form of MSG? (YES- Sue) In which case, does the "No MSG Added" tag really carry any weight, as the MSG is added within these products? (NO - Sue)
 
 I'm feeling very itchy and burny all over, and incredibly stupid for not checking ingredients before consuming!!!!

Second update

I bought a packet of rice crackers (Fantastic brand, I think, I have to check) - they were PLAIN - but had "Flavour Enhancer 635" added - what, are they really, really plain??  I fed the crackers to a friend but kept the wrapper!

Third update

After scrupulously avoiding these additives for several years, Sharon inadvertently licked the fork she had been using to stir her husband's instant noodles (containing 635) - the result was an immediate and life-threatening swelling of the lips, tongue and throat. This additive has now been banned from their house.

I went to see a dietitian about my son waking on average every hour, having been on a strict elimination diet for 2-3 weeks with no difference to his sleep. The dietician didn't tell me that the probiotic I was using was high in amines and didn't pick up that he was probably having too many amines from other food he was eating. I found out through the facebook group that the probiotic is high in amines. After two days of stopping it, my son started sleeping better. Last night, my son slept for 4.5 hours straight for the first time in 8.5 months. I can't thank you enough.
 
I've spend thousands on specialists trying to find out what is wrong with my son. Through your books and the forums, I've found out more than going to all of the specialists combined - member of facebook group http://www.facebook.com/groups/128458328536/

I wanted to say thank you for all of you help and support towards my son. We have seen a huge improvement, strict failsafe diet with no dairy and no wheat. I can't believe the change. Tummy and back are completely clear and face is nearly all clear too. – Jasmine

1441dairywheat

5 days into salicylate challenge. Nope. Nothing. Clearly no issues with salicylates. Day 6 - sweet Jesus, Mary and Joseph. All hell has broken loose this morning and I remember why I'm doing this!!!!!! – Mel from facebook group

My daughter has been suffering from urticaria for 18 months. One source of her outbreaks is natural yellow colour 160b annatto which causes welts and extreme itchiness and distress within about 10 minutes (probably a true allergy) – Leigh

A friend of mine gave me your DVD ‘Fed Up’ yesterday.  Well, I watched it this morning, and suddenly it felt like somebody understood what my daughter is like - she can be quite defiant when asked to do something she does not want to do, blames others for her behaviour (mainly her six year old brother), she is very loud, chatty, sings all the time when she is not chatting -  Sheridan.

We had behavior issues with our son. Failsafe saved our sanity! – Nan USA

Many many thanks for everything you do, even from the other side of the world, I would still be getting nowhere at all without yours and Sue’s experience! – Kathy UK

1440oneliners

This hour of independent play is brought to you by the Failsafe diet! I am eternally grateful. - Kristen

Wow! I cannot believe I'm finally taking the time to write this email that I have been thinking about writing for nearly a year and a half (I am 15 now). I cannot even express to you in words how you have changed my life...

Before doing this diet, throughout childhood I have experienced a range of symptoms of food intolerance (ODD, OCD, depression and anxiety) but these were not bad enough to be classified as disorders. I had no idea that they could have a link to food.

I have also had IBS symptoms, feelings of panic/nervousness, irrational fears, inability to focus on thoughts at times, headaches, nauseousness, hyperactivity, reflux, 'weird' behavior (thought to be associated with ADHD), stomach aches and pains, food cravings and more. After doing the Diet and cutting out salicylates, amines and additives I already began to notice a WORLD of a difference. It was AMAZING!! When I started the diet in full (also cutting out dairy foods, wheat, grains and soy) the results were UNBELIEVABLE!!! My symptoms greatly reduced and (some even disappeared completely)!!!

Further, I was diagnosed with ADHD as well.  Although some of it is really ADHD (and I am medicated for it) I have found a large part of it (and behaviors associated with it) to be greatly influenced through diet!

When I first found the diet, I decided to do it, but take a break for the summer. I planned to begin it after I came back from sleep away camp that summer. I went to camp and ate EVERYTHING; I told myself nothing was off limits. I ate tons of high salicylate fruits and LOTS of artificial junk (candy, cake, lots of artificial preservatives, etc.) as well as lots of amines, dairy, some wheat and soy (all of which I now know I am sensitive to). Because of this, I developed an eating disorder, extreme anxiety, depression and worsened ADHD and stomach problems. I was under-weight and recommended to an Eating Disorder Clinic later on. I was so miserable; yet I remembered this diet... I decided to start it up again. So that fall, I started eating less and less of the high chemical foods I had been eating and more Failsafe foods. As I slowly cut out the foods I was sensitive, my body was starting to heal! The eating disorder, depression, anxiety, obsessive thoughts and awful stomach aches and pains went away!!! It was amazing!!!!

Now I have been sticking to mainly Failsafe foods (low salicylate, but a less strict approach to amines). I still avoid additives and glutamates though; as well as dairy foods, wheat, soy and grains.

Also, read your ebook "Fed Up With Food Intolerance: A Personal Story". It was moving and I like it very much. I liked it so much that I did "Character Summaries" and a "Character Chart" for some of the characters. I also recently finished creating a "Timeline" of events in the story and I did it just because.

What's more, you have INSPIRED me. Food intolerance is a HUGE passion of mine that I now know about (because of your site) and I want to help others and impact their lives the way you have. This information has touched me in a deep way  – Teenager (15, USA)

1439usteenSMALL

(Click to view large version)

I'm here to offload I'm afraid, after a super stressy and dramatic morning. My daughter is 23, mildly Aspergers, and with a long history of extreme highs, lows and over reactions. This morning she lost the plot more than probably ever before, literally turning her room upside down, screaming, hitting herself repeatedly in the face with both hands, while attacking me verbally and even threatening to kill herself.

Deep down, I do not believe that she is mentally ill in any way, in fact I would bet everything that she has eaten chocolate in the last 48 hours, and possibly a fair bit of it.

My sister and I, both in our 40's, gave up chocolate at least 15 years ago, and literally never touch it, because it makes us angry, and my daughter knows this. I've warned her about it many times, and the last time she lost her temper in an alarming way (at a security guard in the jobcentre of all places) it turned out that she'd eaten choc the 2 preceding days and she then swore off it herself.

I wish she was a little kid that I could dunk in an Epsom bath, and feed a strict elim diet.

As for the why, I would put the blame fair and square on phenylethylamine. It's the only amine found in chocolate, and so far, the only amine that makes me, my sis and daughter lose the plot in this kind of way. And the amine quantity is also much higher in choc than in other things. I am mid-way through my amine trial at present, but it's a strictly tuna/meat/bananas type of trial - chocolate is literally a safety issue in our family - specially as my daughter is now car driving age.

Because my sis and I have such a definite reaction to chocolate, I would actually be very scared of my girl approaching standard mental health services, and ending up either wrongly diagnosed with something terrible, which would make her feel even more 'like a freak' (being 'the autistic girl' has already made her feel that way to some extent through childhood) or being put on mind altering medication which could potentially cause massive, longer term damage to her mind and emotional coping capabilities. I'm hoping within a couple of days that we'll be able to discuss this properly.

Chocolate has a very dark side for some of us. I honestly think that there are thousands of violent crimes carried out every day in the world, purely due to people eating the wrong stuff for them.

Later

She came home last night full of apologies and tears, and willing to admit that she's had chocolate over the weekend. I'm hoping she can see now that losing all control over your emotions and risking physical injury and worse, is not a fair swap for having a flavour in your mouth for a few minutes  – Kathy from UK.

Mission Abort!
Mission Abort!
Amines challenge status: EPIC Fail!
Who knew a banana, some cheese and chocolate could have such an extreme reaction!! Aggressive behaviour, terrible language, not listening to instructions, excessive bed wetting. Basically a little devil moved into my son and went nuts – Natalie

We lasted 3 days until I called it off, OMG, huge meltdowns, aggression and behaviour. My son is 7 and there was already talk of being expelled from school because his behaviour was so extreme. He is a different child on FS. His response to amines was huge. – Zoe

You have my utter sympathy. Chocolate amines in particular are literally dangerous to personal safety in our house! – Kathy

It's been about 13 years since we did the amine challenge and it still haunts me! Good luck - at least you know now – Linda

Amine challenges were horrific for us as well. Lasted 3 days and took a week to get out of his system. I have near panic attacks when I see him near anything amine now in fear of the unrest ? – Ash

My mother-in-law thought I was overreacting about food intolerances until she babysat my daughter on the day the amine challenge took its effect. My daughter did the head banging but also managed in one hour to majorly wet her pants 3 times and then do explosive diarrhea, thankfully that was on my mother-in-law's watch not mine. My daughter was 2.5 years old at the time and four years later she is still afraid of chocolate! – Ruth

My 3yr old was aggressive, started heading banging and literally throwing his whole body into the wall. Trashed his room. Hit and kicked us to the point we had to physically overpower and restrain him. He was a devil child. Scary stuff!! – Ashley

Our 6yr son was like that before diet. Every single day. Was really exhausting – Natalie again.

As a middle aged adult I aborted my amines challenge on day two .. I felt like I had drunk 20 cups of coffee .. brain was racing .. like too much adrenaline, anxiety, hyper , want to lots and quickly, hyper energised, but low level of tolerance.. not fun !!! If I wasn't an adult and knew to be nice to people regardless how I felt, I would have been horrible ?. So it made me realise how much this one little food chemical could affect kids’ emotions adversely. I really feel for affected kids, so often they would just be branded as having behavioural problems – Heather

For us amines are slow to take hold and very slow to eliminate - Paula

My son took about 3 or 4 days to show signs and 6 days for a melt down. Yesterday was horrific. Today he is wonderful again after only 24 hrs on FS – Natalie again

That's amines for yah, and tomorrow you might wake up in a really bad mood as well – Julie

When my husband did the amine challenge he couldn't fall asleep and when he finally did he woke up a couple of hours later and couldn't get back to sleep. He was also really constipated. For the two years prior to this he had been taking a herbal sleep supplement just to fall asleep every night. He hasn't taken it since and as long as he is careful about amines hasn't had any more sleep issues – Ruth

Amines factsheet and more reader stories

My mum reported a reaction to MSG while on a China tour in 2011:

“We'd been in Shanghai for three days, eating three Chinese meals a day. I started to feel sick and developed a headache on the fourth morning. Had a coffee and cake thinking it might help. Then we had lunch, another Chinese meal. After lunch we were catching a bus to a market and then on to an overnight train trip to Sian. While waiting for the bus I started to feel faint. I sat on a step. I must have said at this stage that I thought it was a reaction to MSG, because I'd had headaches and nausea from it before. My sister encouraged me to get up when the bus came but I got as far as the gutter and collapsed into anaphylaxis. I was barely conscious, couldn't move. Our tour leader called an ambulance and one came fairly promptly, I think. In the ambulance a herb-y tablet was put under my tongue. Apparently my blood pressure was very low. My sister was with me, very concerned.

At the hospital I was taken to a private room and put on, first, a vitamin C drip then a ginkgo biloba one, over several hours. I revived enough to ask what they were giving me. Meanwhile, our tour leader was phoning ahead to ask for no MSG in any of our meals. Several of the group had been feeling off. While no-one in China would talk openly about MSG, the absence of it from the rest of our meals certainly made a lot of people feel better. My doctor, when we returned, agreed that MSG was most likely the cause of my collapse.” - Australian dietitian

I have experienced a food allergy for approximately two years and have only just discovered that the allergen is annatto.  I experienced turning sunburn red, itching, stinging, burning from my scalp to my toes.  The reaction was always the same, lasted  one and one-half hours each occurrence, was painful, and occurred after eating varying foods: mustard, seasoned sausage, desserts, crackers, salads from my favorite deli.  After eating a Sargento’s cheddar cheese stick and having this painful reaction, I read the label of this cheese product and annatto was listed.  I researched the additive and have since avoided it and have not had another reaction.  It is dose related for me.  If I ingest a small portion of this additive, I do not react - Christi USA

(Note that annatto can even cause life-threatening anaphylactic reactions in some people http://www.fedup.com.au/factsheets/additive-and-natural-chemical-factsheets/160b-annatto)

I am a 42 year old male that has bad reactions to annatto as well as other colors. I have suffered depression/anxiety, obsessive thoughts, tennis elbow, and have been very unhappy since my mid to late teens. Around 3 years ago I gave up Mountain Dew* just to be healthier. My body and mind responded by feeling better. After researching more I gave up other colors. My annatto find for me was waking one morning to angry obsessive thoughts "they came back". I dug through the trash can to find garlic bread with annatto color. By not eating or drinking foods with color I am happier and can find joy. I only wish I had known this 30 years ago - David USA

*Mountain Dew contains sugar (replaced by high fructose corn syrup HFCS in much of the United States), concentrated orange juice (salicylates), citric acid, natural flavors, preservative sodium benzoate 211, caffeine, sodium citrate, erythorbic acid, gum arabic, calcium disodium EDTA (label claims "to protect flavor" however its purpose more accurately stated is to prevent benzene formation by chelating the metal ions present in water that can act as catalysts in the reaction between sodium benzoate and erythorbic acid. producing the carcinogen benzene), brominated vegetable oil and artificial color Yellow 5 (tartrazine 102).

I discovered the connection between sodium lactate and anxiety when remarkably calm days in my daughter were abruptly interrupted shortly after eating "natural" bacon with sodium lactate as the only unrecognizable ingredient of an otherwise simple meal.  Interestingly, when my daughter had calmed down from what I would describe as one of her typical rageful, irritable, oppositional tantrums (pre-failsafe), she in her own words had felt "jittery", a term I'd never heard her use before. Wikipedia says that this naturally derived preservative  can cause panic attacks in patients with existing panic disorder https://en.m.wikipedia.org/wiki/Sodium_lactate - thanks to Diane USA

[Howard comment: presumably the other food additive lactates (326, 327, 328, 329) would produce the same response in those susceptible].

I am very excited to say I have had my sensible, chatty, clever little boy back for five whole days!! three weeks into strict failsafe – Elena

Loved Sue’s books for the stories, they're so uplifting and make you feel like "I can actually do this!" – Elizabeth

Thank you for making the information so accessible to us parents learning about chemicals in food..  It has been a huge help - Janelle

We are testament to this diet. Amazingly bright focused kids - Emma

FAILSAFE eating has improved my son's attention and fidgeting heaps, he goes to bed easier and seems calmer and more focused.

We have not excluded dairy as we had no reason to believe this to be a cause of any of his behaviours but since starting FAILSAFE, I have noticed he has become more defiant (he has always been quite stubborn and headstrong, but I feel this has worsened).  We are not under a dietician at present, but are seriously considering this …

UPDATE (2 weeks later)

I just want to start by saying thanks! You guys (facebook page, website and emails) are just so supportive and I am so grateful for it.

Just a bit of feedback on the dietician: we took our 5 year old son to see one of your recommended dietitians. She uses the RPAH handbook as pretty much like a bible. She had it out and referred to it heaps. She's definitely someone to keep on the list of dieticians who support FAILSAFE and who encourage their patients in the same direction as what you do. She is very helpful, clear and understanding and I'm very glad we went to see her.

With her guidance, we have decided to start the challenges after being on the strict elimination diet for 3 weeks. She thinks we are ready. 

We have switched to A2 milk and there is definite improvement in the defiance mentioned in my previous email. So thanks for that.

I have your books Fed Up and the Failsafe Cookbook, read pretty much everything on your website and am on the facebook group. Thank you for all these resources, we couldn't do it without them! – Aldine

I was very surprised that my son has completely stopped freaking out over loud noises. The lawn mower would have him in a fit of panic, using my Thermomix was like torture to him, electric toothbrush, hair clippers, even the loud noise of the air coming out of the vents in my car with the air con on (we would get in the car and he would scream please turn it off mummy!!).. he just miraculously became oblivious to these noises that affected him so severely once failsafe. He's even started letting the plug out of the bath now, which he never did because the noise of the water slurping down the drain was too uncomfortable for him. We had our first tear free haircut last weekend! I never would have guessed that to be food intolerance related. He's also not stuttering anymore - he would get stuck on the first word or two of a sentence if he was overwhelmed and repeat it over and over unable to finish the sentence. It hasn't happened once since we started. My son used to scream at me NO DON'T SING MUMMY if I tried to sing along with him to a song. Ok with his own sound but not that of others – Ash

See hyperacusis factsheet

See stuttering factsheet

Often on this page people talk about their struggles and challenges. I thought I'd put up some (unexpected in some cases) positives from being on the diet noting that everyone experiences different changes. So here we go.....

Stronger hair and nails
Skin has cleared   
No flaky skin on arms and legs
No more itchy and scratchy
No more 'dandruff'
No more nosebleeds
Reduce period (duration and flow)
Gut pain gone
No urgency for the toilet
No more unexplained anaphylaxis
Overall inner feeling of being happier and healthier!

It has been a struggle and I miss many of the foods I liked to eat but the rewards and benefits far out way this. Good luck on your food journeys! - Wendy

Reduced anxiety (my symptom, in the spirit of this post) - Paula

No more migraine. (Amines and 160b) – Judy

+ msg, This one I can relate to soo much, plus less anger/light switch moods - Maureen

Did not know nosebleeds were associated with it but must say mine have decreased since taking out preservatives – Lyn (see http://www.fedup.com.au/factsheets/symptom-factsheets/nosebleed-nose-bleed-due-to-food)

I felt the same - I was well albeit very restricted but I didn't care...Teresa

I didn't make the link but yes you're right. My nails, skin and hair are much better and I haven't had a nosebleed for years. The best though is no PMS or cramps! – Jennifer

No more passing out. No more asthma. Less angry. Calmer and happier. No more Rosacea   ? – Diana

Hadn’t linked rosacea with it but mine has definitely improved – Lyn (see http://www.fedup.com.au/factsheets/symptom-factsheets/acne-and-rosacea)

I recall telling my dietician one day that I felt happy for no reason. It was so foreign to me! - Renae

When I first started failsafe elimination diet 18months ago my husband laughed saying "you are probably the only person who goes on an elimination diet and finds more food to eat". I was so reactive that I could barely eat and was underweight having lost 10+ kg – Elaine

No more brain fog, tinnitus or black bags under my eyes – Lynda

My tinnitus are still a problem, but the pin pricks all over my body are gone. Itching, and panic attacks are gone as well. I got lazy in December and now struggle to be good. Maybe that is the cause of tinnitus – Anne

So much more energy! Felt fantastic. Best I felt in years! Bouncy even ? – Liz

This is my little boy standing on grass. 4 weeks ago this was causing him pain. So grateful for the research that has gone into this diet and the number of ways it has helped my family.

1428story
 
We were introduced to failsafe in 2009 and read Sue's book FedUp with ADHD (now an ebook called Fed Up with Food Intolerance: the personal story http://www.fedup.com.au/order-books/fed-up-with-food-intolerance-ebook).

We chose to attempt the diet as my eldest had been diagnosed with ADD (ie inattentive but not hyperactive). We spoke to a dietician but it was clear from one visit that I was more familiar with the diet than she was and that she was half-hearted in her support so we did not go back but did the diet on our own.

We went through 6 weeks of strict elimination diet during which I can say that I did not notice the benefits. I say this because I think it is easier to see the negatives rather than the positives in most situations. For example, everyone notices the naughty child in the class but how many stop to commend the child sitting quietly in the corner getting on with their work?

We then proceeded with the Salicylate Challenge. Within 2 days we noticed the negative impact of salicylates.

Child 1 (C born 2001, aged 8 at the time, diagnosed with ADD)
- Cloudiness or fogginess returned to his mind.
- Major impact on his co-ordination. I mean - on his scooter aiming for the door and hitting the wall. During the six weeks we were on strict FAILSAFE he had no issues with this.
- A few behavioral  changes
- During the six week elimination period we had attended a weekend and he had sat still for 2 days straight, paying attention, not even interested in the snacks and other items I had brought along to help get them through - unheard of. We attend the same convention every year and this is the first year he has EVER sat through more than an hour without fidgeting.

Child 2 (D born 2006, aged 3 at the time, no diagnosed issues)
- Sensitivity to textures
- Had issues identifying the difference between hot and cold - I mean, he wears warm clothes in summer and virtually nothing in winter. Under the shower he would say, the water is too hot but meant it was too cold. This was the same child who knew he left from this right but couldn't tell hot from cold.
- Wetting his pants. During the elimination period he was completely toilet trained. On the salicylate challenge he would stand next to me and say "I need to go to the ...." and not even get the phrase out before he wet his pants. It was like the salicylates were blocking the message.

Adult 1 (N born 1977, aged 32 at the time, diagnosed with depression and had an allergy to cats and dogs since 14yo)
- I am no longer allergic to cats and dogs and removing salicylates from our diet is THE ONLY thing I can put it down to. Allergy has not returned.

Adult 2 (P born sometime last century, about 62 at the time, dealing with side-effects of childhood polio)

Pat had polio when she was two and has been a very active and determined lady her whole life but with her illnesses has had many side effects. She had moved from calipers into a wheelchair and had been in the wheelchair for about 5 years. She has ALWAYS suffered with incontinence as far back as she can remember and irregular bowel motions.

During the elimination period Pat was relieved from her incontinence (no pun intended) and passed her first normal bowel motion IN YEARS!!

We carried on and went back on the elimination diet and then a few weeks later tested amines. The boys seemed to be mildly affected, particularly with leg cramps.

So, for a number of years we were a FAILSAFE family. Over the years, as the boys have grown up, amines have been better tolerated and salicylates have slowly crept back into our diet. When we have overloaded on a particular meal I would use the "bi-carb antidote" to settle the kids back down and it would have an impact within half an hour.

9 years later

Then in 2016 I noticed some of the symptoms returning. In particular with Daniel (now aged 10 and the little boy in the photograph). He would walk around on this tip toes regardless of the surface - tiles, grass, pavement, beach sand - that's if he was FORCED to go bare foot. Even wearing thongs he would still tip-toe.

The particular day I realised how bad it was for him was when we went to the beach with friends. He complained that the grass was actually HURTING his feet. This grass was that really soft grass, no prickles or stones or anything. It was as painful to him as walking on gravel.

Then when we got the beach sand he wanted to put his sneakers back on. Well, I insisted he go bare foot because I thought "you don't wear sneakers down on the beach". Well, he refused to leave his deck chair. Later in the day I agreed for him to put his shoes on because, well, he had been on the chair most of the day and OFF HE RAN to go play and make sandcastles.

So, I decided that we should go on strict elimination again because it seemed that the levels were now producing visible symptoms that were impacting on his quality of life.

After 4 weeks on the elimination diet (but eating amines such as bananas and oranges) [OOPS: this is a mistake  - oranges and all citrus are very high in salicylates - Sue] we were able to take the photograph above. This is the same type of grass that had given him pain a few weeks earlier.

So, since salicylates were the only thing we had removed from the diet I conclude it had to be salicylate related.

We are so grateful for the research that has produced this diet. Sue's cookbook is our favourite. It seems the recipes are all trialled and tested. My one issue is the amount of sugar in many of the recipes - Natalie

[Howard comment: the sugar is there to make this way of eating initially interesting to kids, rather than a punishment. Then you can reduce it bit by bit and they will still like it. The same goes for the high fat content of some recipes.]

I had asthma for over 30 yrs. haven't had it in the last 5.  ?

I thought my asthma was for life. I had allergies as a teen. Asthma at 21. I thought I had food issues. Was told it was all in my head. Tried everything. Tried this diet because I adopted a son who had food issues. He ate and reacted. That got me to failsafe and the rest is history. Breathing was the first relief, then the weight fell off – Gayle

Just want to say so happy! At my DD prep info night her teacher said if they seem to be having behavior issues the school will work with the parents to look at factors like diet. .. and there is an amazing lady called Sue Dengate. He went on to add it is amazing the natural things kids react to and both of his kids did fail safe and know their triggers.

The teacher told me today to bring in some stuff that my kid is allowed when the others are having things she doesn't (one of the other mums was taking about bringing in iceblocks for her kids birthday) – Jennifer

We leave a treat bag of failsafe goodies with the teacher and re stock it each term. Also have a wonderful lady on the canteen who stores our magic cordial ice blocks and cupcakes for when classmates have birthdays – Nicole

Great news! Our small catholic primary is also failsafe friendly. Canteen has pear juice slushies, gf options and lots of food is made from scratch on site without additives. Happy to order in special foods for you or you can bring things from home for them to heat on canteen day. Also store treats for when birthdays are celebrated too. They also have strict rules about not sharing food. I find teachers are well versed in food intolerances and happy to support your plan.  ? – Liz

Do any CFS sufferers experience withdrawal symptoms while doing the strict elimination diet? My partner is a week into the strict elimination diet and his CFS is getting much worse and he is experiencing new symptom (emotionally he feels like his whole body is crying). How can you distinguish between CFS symptoms and strict elimination diet symptoms? What does baseline mean in the elimination diet? Thank you - Max

The RPAH book and my allergist tells you to expect withdrawal. I was so ill and so medicated and all over the place I have no idea if I did. I have now recovered. You need to continue until you can tell there is enough of a difference that you will be able to tell if the symptoms start again when you test the foods. Max 8 weeks. Stick with it! - Jennifer

I had unbelievable amounts of pain during my withdrawal phase. I am failsafe for CFS and whilst it hasn't been the whole answer for me, I have made measurable improvements on this diet. Keep pushing through this phase. If he feels much worse it's generally a sign that there probably are food intolerances involved - Sally

With CFS the stress on the body can seriously aggravate your ME/CFS symptoms and cause relapse that can last a long time. From personal experience and a lot of reading, I suggest taking the diet slower than most people have to and make smaller changes to start with – Shannon

I've had EBV, CMV, CFS, SLE, pernicious anemia, multiple allergies, amines sensitivity, endometrosis and fertility issues. I was on endone and endep daily. I started the elimination diet as part of treatment for my breast fed baby with significant allergies. Initially we both crashed terribly, it took over a month to plateau then start to rebuild. We currently have just over 10 safe foods. We have been on low - mod diet for over 3 months and I have been medication free for 6 weeks and have the least pain I can ever remember. I do take probiotic Osteo D Vit c zinc and magnesium supplements plus Vit b injections. I'm still tired but have been able to go back to working 4 days a week. It's the best thing I've ever done but was absolutely terrible for the first 4-6 weeks. Hope that helps – Rel

Amines seem so far to be one of my biggest problems. Once they start to build in my system they cause great problems to my muscles, which cease to function properly; they don't turn on properly, which leads to pain from postural issues; I get restless and jittery; and everything starts to get overwhelming, which makes me snappy, teary, and unable to deal with everyday stress – Sally again.

Factsheet on chronic fatigue

My son had a severe stutter that disappeared within 3 days just by making the initial changes recommended on www.fedup.com.au - switching to A2 milk, failsafe icecream, eliminate milk chocolate only milkybar white choc, failsafe bread etc. Eventually I eliminated dairy in stages.

Finding out about failsafe was a lifesaver. He had that stutter on/off for 2 years. Speech therapy didn't work because of his behaviour - he wouldn't engage consistently in order to do the Lidcombe program for 6 months. We were referred to RCH Melbourne unit for the more difficult cases of stuttering. It's been 10 months now and never returned - Marion

Try going cold turkey, you may be surprised by the benefits. I went hardcore as soon as I'd digested all the info and my entire life started turning around for the better within three days. I was gobsmacked by how fast Failsafe worked for me - Pam

Sue changed our lives, our eldest daughter was intolerant to salicylates and amines. And we then learnt how important it is to avoid additives and preservatives in foods - Stephanie

I was first exposed to your work 7 years ago when our daughter was 3. Her behaviour went off the wall all of a sudden and we had no idea why. My mother-in law asked if I had changed the bread we were eating. Which we had. We had gone from buying Brumby's to Aldi for budget reasons. She told me to check if it had 282 in it & sure enough it did. We changed back and the behaviours dissipated. Of course I started checking everything for 282 then. She also gave me her copy of Fedup she used for her youngest son. What an eye opener! – Belinda Smith, The Root Cause www.therootcause.com.au  

160b, annatto: Twice I had severe heart irregular beat and ended up in hospital. Felt like dying. It happened to me one hour after eating red leicester cheese – from UK

1422story

First photo prior to failsafe eating. I saw numerous doctors regarding my son’s reaction to foods, this includes two allergists, neither mentioned RPAH diet. His eczema has now gone completely, bowels now normal and he’s generally doing well thanks to the diet and help from members of this Network. His other symptoms were runny nose, watering eyes, warm to touch, loose bowels/diarrhea and the red skin.

Second photo today, 9 months after starting failsafe. He is still sensitive to sals, dairy and egg but tolerating amines much better and seems to be gaining more tolerance every week. Looking forward to introducing more foods - thanks to Lia.

Hi, all! I just discovered the Failsafe elimination diet after talking with my yoga instructor, who found it helped determine what foods caused her AI disease to flare. After reading up on it, though, it seems to be geared more towards children with behavioural disorders. Are there any adults that have found success for other conditions with Failsafe eating? Specifically, my problems are gastrointestinal due to IBS and SIBO as well as frequent headaches, fatigue, and joint pain. I have been following low FODMAP for quite some time now and it has only made things worse. – Jessica

Failsafers respond:

Haven’t been in hospital with anaphylaxis since I began diet. Was going every 2 weeks, covered in hives swollen like a balloon constantly, on daily nebulisers and worsening asthma. I am only 36. Now no migraines, arthritis died down, no pms, cholesterol now normal, blood sugar normal, hives anaphylaxis gone, asthma improved and in combo with Fodmaps goodbye IBS. Immunologist who put me on diet has literally saved my life – Josephine

It has definitely helped me with migraine headaches! They haven't gone away, but they are not quite as severe when I consume only low sals – Cindy

It has helped me with the gastrointestinal symptoms as well as mouth ulcers, irregular/heavy/painful periods (If I completely break the diet for a week I will miss my period that month), sleep issues including nightmares/insomnia/sleep walking, headaches, bladder weakness and mood – Ruth

Yes to IBS (had to give up wheat for that as well though), headaches, fatigue and joint pain (which came as a surprise to me on day 5 of elimination) – Lareina

Yup. I had chronic hives, but have also found joint pain is much less, fatigue is generally better and gut health seems to be much better – Emma

Failsafe has helped me with stomach issues and headaches. There is very little overlap between Fodmaps and failsafe vegetables, so quite likely that if Fodmaps made things worse, failsafe could be very helpful! – Ruth

I found it was helpful for my whole family. Turned out we are all sensitive to Sals and I found that my asthma was actually a allergy to sulphur. It also helped with headaches and my husband’s heart palpitations stopped and we all sleep so much better now. Definitely worth doing! – Lisa

I have had all the symptoms you mentioned, throughout my adult life. Only just discovered the causes by trying failsafe – Bron

I have IBS related symptoms and have found relief – Courtney

Me. Hives, gastro and mood issues all helped! Even some I didn't realise were symptoms like frequent urination – Fiona

I discovered the Failsafe diet 15 years ago when I was 30 and have never looked back. Healthier, happier and sleep better - Nat

My 6 year old has recently been diagnosed with ADHD. I've been on this group for a couple of years and watched and thought about doing this failsafe approach. Honestly it's looked so daunting. I take little bits here and there and try and keep packets out of the house as often as I can. However this new diagnosis makes me think I need to do this now! I've seen random posts of ADHD parents on here. Do you find it helps to keep your children off medication? This is my absolute aim, as well as improving my daughters behaviour!

Failsafers respond:

Simplistic version, but pretty much four options:
1. It's truly ADHD, and ADHD without any comorbid food intolerance. Elimination diet will make no difference.
2. It's an incomplete diagnosis that is missing other elements such as processing disorders, without food intolerance. Elimination diet will make no difference.
3. It's ADHD, with or without other conditions, but with comorbid food intolerance. Elimination diet won't be a fix, but may improve your child's experience, potentially removing much of the emotional instability.
4. It's food intolerance misdiagnosed as ADHD. Elimination diet will remove the symptoms, removing the diagnosis.
How will you know? Elimination diet. In 3-4 weeks you'll know if diet is involved. – Tracy

Initially I did the moderate approach for a month listed on the fedup.com.au website - and it confirmed that my son had intolerances. I then found a dietician that was listed on website that could assist me. Its definitely worth doing   - Joanna

Joanna-  Same, and just found a dietician from the website. It's the small things, like having vanilla ice cream without 160b, white potato and no more tomato...changed behaviour dramatically. Never ceases to amaze me. Find a printout of the negligible low mod and high sals / amines etc and go from there. – Samantha

We had some success with master 8 with his ADHD. We now know foods to avoid and which foods to limit ie. Only one apple per day etc. We've done med trails for all the different type of drugs that were recommended to us and for our son we didn't feel the improvement of the meds was worth the mood changes etc. long term. Don't be afraid to try a therapeutic approach with a naturopath and a therapist. We've found both to be very helpful long term for our son. I wish you well. It’s a hard road ahead. (No offense meant to the parents out there that find medication to be helpful. I'm just giving my personal experience.  We had some success on the Ritalin LA but not enough to warrant staying on it. Our son has terrible anxiety and for him, the meds only made his symptoms worsen but you're absolutely right, every child is different and I have 2 friends that find the medication more than helpful for their children. Life changing even. The stigma that goes around the meds is so varied and as a mum I know how hard it is to make the decision to use the aid of medication and not have family and friends be supportive of your decision. I would never judge or mean to offend anyone  :) We would still try the meds again because I'm a believer in doing everything I can help my child, which means trying everything out there that may help him. - Aimee

Yes!! My 9yr dd was diagnosed with ADHD, ODD and also ASD. Since we have started this diet she is a different kid (for the better). She herself loves the diet because she feels normal again.  Even the paediatrician saw the difference and was happy for us to not use medication because of the changes her teachers and we had seen.  It's very daunting (sorry, probably not what you want to hear) but I would suggest reading the fed up book and seeing a dietician. I wouldn't go into this half armed as then you'd just be setting yourself up for failure and stress.  It's totally worth it though – Kylie

My Asperger’s, ADHD son responded well behaviourally to failsafe. Preservatives and colours made him very impulsive and physical. It cannot take his disability away but it stopped added behaviour. Update: BTW we started off strict in the beginning but now avoid the things that affect him. Started at around 5or 6 I think he is now 15 I have no idea how things would have gone if I hadn't have found the failsafe diet – Petrina

We did failsafe (and continue to do so) for my daughter's ADHD issues. We have tried with just FS alone but she's quite a severe case and so she is medicated as well. She's particularly sensitive to preservatives so any consumption at all, no matter how small, and her behaviour is off the charts crazy for three days straight and her medication has no effect on her at all! So we are very careful, as it isn't worth getting lazy or not checking labels carefully.

I realise your ultimate goal is to keep your son off medication but please bear in mind that living with ADHD is a lot harder than having to parent a child with it. I have ADHD and my daughter is as severe as mine. I've gotten a lot better at not being so impulsive and over the top as an adult but as a child I really struggled at school. I'm of above average intelligence but my grades never reflected it because try as hard as I did, it was impossible to concentrate fully or retain all I was being taught when I was at school. I'm 42 and medication wasn't even an option back when I was a child. It was a miserable existence and I can remember very clearly doing the most ridiculous, dangerous, stupid things and how terrible I felt when I naturally got into trouble constantly from my parents, teachers, neighbours, etc. My self-esteem was pretty low because I basically felt like a total screw up who couldn't do anything right, couldn't remember what I was told, couldn’t do what I was asked, etc. Now I'm the parent and I try to be more flexible and understanding with her although I will gladly admit there are some days where I have zero patience with her at all because it gets tiring having to watch her constantly, remind her, direct her, etc. Without medication, my daughter would not be able to function. She has an IQ of 140 but she would learn nothing at school. When she graduated preschool (before she was old enough to medicate), the teachers told me she hadn't even learned how to write her own name because no matter what strategies they had tried, she had never been able to sit still long enough to focus on learning to write. She also spent a lot of her playtime on the naughty mat. I felt so bad for her when I heard all of that. Aside from her education, I can pretty much guarantee she would have no friends, as she can be very rude, impulsive and hurtful when she's not medicated. She doesn't mean it and feels terrible later when nobody wants to talk to her or people exclude her because of her behaviour. That's not something I'm willing to let her suffer through. She cannot help that she has ADHD as much as any child can help any other medical condition they have. I'm certainly not going to withhold medication for my own arbitrary beliefs if there is a potential benefit that will improve her life, her education, her relationships etc.

I'm not trying to sound preachy about it because we all have differing views on whether to medicate or not and it's always an individual decision but I just wanted to put forward the idea that sometimes we need to think about how life feels for our children and whether they are happy within themselves when it comes to their behaviour. I know many ADHD kids hate the fact that their brain doesn't work the way they want it to and they way they think it is meant to. They don't like the feeling of not being entirely in control of their own behaviour even when they desperately want to behave and be good and just be "normal" etc.

Anyway, yes FS is daunting but you won't know what kind of success it could bring until you really give it a go. I have another child with ADD and I found that FS didn't really have an effect on him at all and he still needed medication (he's 19 now and no longer takes medication but he is definitely a much milder case than my daughter). There are some kids for whom FS is a real game changer and indeed some improve so dramatically in their behaviour that medication isn't considered necessary but I find from the countless stories here and in an ADHD group I'm a member of on FB, that most kids will fall on the bell curve somewhere, between having no improvement to a fantastic improvement and kids like my daughter who are in the middle, where removing some things from her diet has made a definite improvement but it hasn't resulted in the ability to stop her medication. And that's okay too. We're all just doing the best we can for our kids. If you choose to try FS, there's so much support and so many other parents you can ask for support. It was hard at first but it quickly got easier and there are much better options out there now than when we first did FS 12 years ago, that's for sure. Good luck if you decide to give it a go. – Lucinda

My son has inattentive ADHD no foods can fix that, but foods give him added crankiness, irritability, teary and hyper, all symptoms that don’t come with inattentive ADHD and I can only control those with the FS diet. – Karly

Omg yes!!! This diet is a lifesaver!! We were on the school speed dial list before term finished, anger issues, couldn't control emotions, discipline of all degrees made no difference. 3 weeks on the diet and I have a different kid!! The days when I mess up accidentally I can tell and so can the school. – Madonna

Yes x 3. ADHD and loads of other diagnosis! When my boys somehow get food or drink with preservatives, colours, flavours it is 6 days of worse behaviour, reduced concentration, even more hyper and aggression! The older 2 are still medicated but have now weened off Concerta! If I hadn’t been introduced to Sue Dengate’s book Fed Up 8 years ago I know our family life would have been so much worse and our home would of been wrecked. Also because of aggression would have our own bed reserved at the hospital! – Tru

We did failsafe but ended up heading towards GAPs and then resuming back to failsafe – Tegan

We were told at nearly 5 that we would get an ADHD and ODD diagnosis and to read up about Ritalin -I never did instead we went on the diet -changed after 2 days - when we went back the paediatrician was so amazed and said she could no longer give the diagnosis but as my daughter got older to check that she was still doing ok at school -well she is B +C's on her report card, reading levels well on track, behaviour good (while on the diet) – Roxanne

Yes! The behaviour of my 5 yo ds have changed so much since starting FS, it's been incredible to watch at times. Impulsiveness, self-control, tantrums have improved out of sight. He is a completely different child, though still not perfect. He may still end up on medication of some sort. but I suspect he has various nutritional deficiencies affecting his nervous system, so will be taking him to the behavioural neurotherapy clinic soon, mentioned above by a pp. – Marion

I have a child with ADD (inattention) we found diet change only did so much. She has had problems with salicylates and sulphites in particular. OT assessment and therapy gave us some great tools as well. We are currently testing out a low dose of medication and have noticed some changes with concentration and being more 'switched on'. Our goal has always been to increase her availability for learning (which we are finally having some gains with - hooray!) If your child is better off on some medications as well there is absolutely nothing wrong with that. The best part is that they can be stopped if they are not working. I think if you always remind yourself that you are their parent and know what is best for them you can't go wrong. Best of luck! - Shay

1419story

This is my 9 year old. He survived meningitis twice as a baby and was constantly unwell. Dr's thought he had IgA Deficiency but by around 2 he seemed to become much healthier. But then he was allergic to everything and his eyes would swell and itch and run. "Just allergies" they'd say. His behaviour was getting out of control too. One minute I'd see the most loving caring child, next minute... devil child from hell!! As a kindy teacher and childcare director for 19 years I tried everything! He had become... THAT kid!! Angry, impulsive, unable to control his emotions or his temper. I was having flashes of his future being a jail cell!! Then I noticed yellow and orange set him off the most and so the painful, looooooong, mistake-ridden, blind trial began! At first it was tomato sauce, pumpkin, yellow or orange lollies etc. but then he would react with something completely different and once again I would just go back to... he's not food sensitive... it's just poor parenting!!!

For years we did this until one lady said... "He's not allergic to Salicylates is he???? Omg.... after a 'what the' face... I investigated!! We are 3 weeks in to the failsafe diet and OMG!!!!! I have my patient, beautiful, well mannered, no trucker talk, caring son back!!! The school has even taken my number off speed dial!!! This is a long story I know... but I just want to say thank you to each of you people on this page! Your stories, your pictures, your advice have helped our family so much! The allergies have almost disappeared and now we are able to recognise triggers!! And to all those new mums starting off... there is hope at the end of this long road. Xo – Madonna

For me personally, this diet has literally saved my life. Last year I was very sick with constant diarrhea for months on end, I lost 20 kg in weight & was so weak I could barely get out of bed to use the ensuite. My husband took me from doctor to doctor, naturopath to naturopath & no one had any answers. The more things I took to 'heal' me, the worse I got. We had resigned ourselves to the fact that I would die. I rewrote my will & wrote farewell letters to my boys. It wasn't until I developed hives, that I thought this might be food related. I scoured the internet & found this site. After reading about this diet everything made sense to me. And I haven't looked back since starting it.

I don't see this diet as dangerously restrictive but rather a traditional diet. My grandmother died last year at the ripe old age of 100 & never had any health issues. Some of that is genetic but I now believe it was also the traditional diet she ate. My parents are both in their 80's & they eat the same diet & are very healthy. Most of what they eat is on the low level - porridge, fresh meat, green beans, choko, eggs, brushed potato, with a few mods as well, carrots, pumpkin etc. They don't eat much fruit & when they do its usually apples & bananas - Sharyn

Today I saw an 11 year old boy who had been so depressed and anxious that the paediatrician had prescribed anti-depressants. Everyone was at their wits’ end - there had been quite a rapid onset over 9 months or so of bedwetting, violence at school, terrible anxiety and sadness. We delayed starting the anti-depressants until he had tried salicylate exclusion and 4 weeks later, he sat in my consulting room laughing and smiling. All bed wetting had ceased and mood was back to normal.  He said to me “I am not going to eat those salicylates ever again- they make me feel so bad”! His mum said “I have my beautiful boy back” – from a supportive GP

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.

1416MSG

"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

Bulimia  [1116]

Eating disorders (binges and starving)  [963]

Bipolar/manic depression  [1227]   [1291]

We would be interested to hear more stories from failsafers about the effect of diet on these symptoms - This email address is being protected from spambots. You need JavaScript enabled to view it.)

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 [1404]

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

I get bladder leak/incontinence, bladder pain, diarrhoea, slowed speech (unclear or hazy thinking) with preservatives 200 and 282 and soy and I get bladder leak and anal fissure from maize/corn, along with mood swings and irritated attitude in general.

This sensitivity increased post pregnancy. It took me almost 2 years to figure out my food sensitivities/intolerance. The doctors couldn't help. I have done many blood tests and all turned out negative. I am only safe with home cooked food. Eliminating these from my diet has made a world of a difference. Hope this can be shared to help others facing the same health issue. - by email

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.

Some recipes:

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/

1404recipe

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

My GP referred me to a rheumatologist last year due to debilitating joint pain. When I was at my worst, the pain and stiffness in the joints of both my hands was severe enough that I could no longer open jars or peel potatoes. I also had pain in my elbows, hips, ankles and toes. I was convinced I had Rheumatoid Arthritis. My doctors ran all the standard tests for RA, all of which came back negative in my case.

At the same time, my younger sister, who had been on a raw vegan diet (really high in salicylates) received the same tentative diagnosis from a GP and underwent the same tests with the same results. Our joint pains were entirely caused by food intolerances. My sister and I are genetically very similar (we'd possibly pass as twins if I were not 10 years older!) and I believe our near-identical food intolerances and symptoms probably have a genetic basis.

I was free of joint pain within 3 days of changing my diet. My sister and I both reacted to gluten and salicylate challenges. My sister reacted to amines, which I am about to challenge myself, but my sister did not test dairy, given she is vegan for ethical reasons. I abandoned my lactose-free dairy challenge on day 3, due to pain developing in the joints of my fingers and right elbow again, as well as the re-emergence of acne and flushing in response to things like washing my face with plain water.

My own experiences of joint pain with respect to salicylates and dairy have made me wonder how many people have been unnecessarily prescribed immunosuppressant drugs for RA (the same ones my rheumatologist wanted me to take!) when perhaps they are simply salicylate sensitive or experiencing other food intolerances, a dangerous precedent given the potential side effects of these drugs - Amy

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

Sue's comment:

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

FUR2015preFSbreast Pre failsafe, breastfed only

FUR2015gluchallenge  Glutamate challenge response

  FUR2015FS  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 [350] Hearing loss and tinnitus from salicylates

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