We've been doing this diet for 3 months now and I'm amazed to see a massive improvement in both my sons' behaviours. My 4yr old was displaying ADHD and "gifted" bad behaviour at home and school, and has since been more cooperative, better listening and "toned" down a number of notches, he likes the food. My 2 yr old has finally slept for 8hrs straight at night, for a week in a row, he has never slept that long in his life! I suspect salicylates (I used to give them juice, tomatoes and dried fruit every day) and too many amines (lots of cheese). I'm not keen to do the challenges for salicylates, our life is so pleasant this way now :) It is hard to explain to people how this makes so big a difference, but it works for us! Thanks for your books and resources about this, I'm recommending it to my friends and sisters! – Rachel (from 2010)

I just had a Skype consult with one of your recommended dieticians and she was awesome. Your support has been invaluable – reader

School principal took me aside and said how amazingly well my son is doing and that whatever I am doing to keep it up because it’s working. Can’t wait for next term’s success – Megan

This is a great article. Love seeing the real life testimonies. The brochure is such a great resource. I came across it years ago and have never looked back. I now educate many on the harmful additives this brochure lists. Many lives are being changed by this information. Thank you!

Thanks for being there for those who were in the dark struggling in the early years - you & Sue were a god-send and helped so many. Thank you so very much for your dedication - Maggie

Hi all, my daughter was put on the elimination diet for salicylates and amines and I thought I’d be supportive and do it with her. Well it seems that I am more intolerant than her. Who knew that was the cause of my body pain. Thought I just got a sore tongue when I ate the wrong thing. Anyway, I’m just wondering what other common symptoms there are for a middle age lady? - Julie

I have found things like joint pain, headaches and mood swings have been big changes for me. Also things like PMS are now almost non-existent. I too did the whole thing for the kids and just felt like it would be easier to do it as a whole household rather than them and us. So glad I have found out what I have. Really life changing - June

It is definitely life changing. I’ve actually just done a really hard hike this morning that I would never been able to do before this 🙂 – Julie again

For me it has been joint pain, respiratory issues, insomnia, restless legs, hives, psoriasis - Cate

Fatigue, anxiety and racing thoughts - Di

I definitely have less fatigue. Thanks 🙂 – Julie again

Yes for fatigue too. Extreme irritability and likely to lose it and scream at hubby or kids, especially when connected to pms. Migraines - Margie

Nearly everything that was ever wrong with me! Main things being headaches & muscle tension, fatigue, brain fog, irritability. Things that I just thought were normal part of being a human were actually related to food I was eating. Was quite a breakthrough to discover the headaches I'd been getting, sometimes weekly, for over 15 years were caused by amines. When our council chlorinated our water supply two months ago the exact same headache and muscle tension came back. As at that stage I couldn't taste or smell it I was a bit mystified to what it was. Then I remembered that the week prior was the week they were going to start adding the chlorine, and it all made sense! - Rose

Fatigue, insomnia, eczema and other rashes, joint pain, menstrual cramps and pmt all reduced or disappeared here - Stephanie

Gluten can make you have joint stiffness and pain too. Salicylates can cause ringing in your ears and deafness, rashes and itching. Amines can make you irritable and agro - Glenda

I found, much to my amazement last summer that a low salicylate and low histamine diet made my hay fever completely disappear. This was quite groundbreaking for me, as this has been the bane of my life as long as I can remember – I grew up on a farm. The thing to remember is that symptoms can vary from person to person, i.e. the symptoms I get from salicylates might be quite different to yours. That's why it's important to do the challenges, to find out how you react to each different chemical - Rose again

All my menopause symptoms disappeared in two weeks after I went on an elimination diet - Marie

I'm another parent who discovered it by accident when doing elimination as a family: arthritis, insomnia, irritability, headache or neck stiffness, eczema on shins, brain fog - Emma

Your biggest clue as to what is caused by the food intolerance will be when you do the challenges. You’ll probably notice the return of things you hadn’t realised had stopped - Tracy

I’m able to be so much more active now it’s incredible. I actually feel like I’m going to be able to grow old happily. 🙂 – Julie again

I hear ya! Same with me... my son is better off than me, in terms of how many things he's sensitive to. We're not long on this journey, it's getting easier...my symptoms are crazy joint pain, sore tongue , IBS symptoms, headaches. So exciting to understand why after a lifetime of these things but a pain in the bum too! – Sue

I used to go to bed after eating marmite on toast and a cup of tea cleaned my teeth with Colgate toothpaste and would be terribly itchy and moody and wake up with stomach cramps and sweating in the early hours wondering if I had a stomach bug. It took me a while to realise! - Serena

Just changed my toothpaste and my nose isn’t running nearly as much 🙂 didn’t realise it would make such a difference – Julie again (see Toothpaste factsheet).

I get tremors quite a bit, as well as other symptoms – Denise

This is fascinating! I did salicylate elimination diet with my son and my monthly mood swings, depression headaches & period pain (I used to take 8 painkillers a day!) disappeared completely! -Claire

See also [1421] Adult failsafers report success – facebook thread (December 2016)

For more about PMS and period pain improving on failsafe, see Women's health and diet

Adult content following:

I just wanted to thank those who created this diet and have got it to the point where people in other countries can hear about it & implement and follow it. 1.5 years ago I started the elimination diet and the first few months were hellish withdrawing and finding out the other foods I was reacting to. I couldn't face challenges and was extremely sensitive. Now I'm finally at a point where I'm less reactive (still very reactive but I will be able to cope) I've tried a handful of items recently and have come up with a very strong conclusion, that it is because of amines that I struggled with my mental health and was suicidal for years. In the last month I have tried two amines that I haven't had in a long time, one a glass of wine and was depressed the next day for a few days and then last night I had maybe 50-100g of dark chocolate and woke up with a pounding headache, all my pressure points screaming, so much muscle pain and again suicidal thoughts. The amines are a very visible link which puts like a helmet over my head and makes me incredibly miserable -my head gets pressurised and depression sets in like it never left, but then I can ride the reaction out and get control over my thoughts once I take the amines away. It is truly amazing.

If anyone knows anyone struggling with their mental health I would recommend failsafe to them (as long as they are in a safe place to do so, because the withdrawals are rough) because I used to not want to live, and I had felt that way for over ten years but now I have so much to live for even when I have had a couple of amine hiccups.

Feel free to share on website. I've never been someone to hide away with talk about mental health cos there are so many people that struggle and are far too scared to talk that I just want them to know it's ok, they're ok and things can get better even if it means you have to spend over a year on the elimination stage of the diet – Lauren

See factsheet on depresssion

See factsheet on suicide prevention by diet

How have I coped? I came on to this group every few months or so and threw a tantrum, got it out my system, got lots of cyber hugs from other mums who understood and then tucked myself in and soldiered on, determined to do my best.

It’s worth remembering - we do the best we can with the physical, emotional, financial and knowledge resources that we have at the time. I didn’t identify my daughter’s issues until she was 7! I’d had patient friends gently suggesting failsafe to me for at least 2 years.

The other thing to remember is that with anything like this you gain something and you lose something. You have to weigh up what you gain and what you lose. So, for my daughter who is now nearly 13, she just went on school camp and we did not restrict her diet at all. She ate what everyone else ate.

What we had to gain: social stuff - friendships, inclusiveness, being seen as somewhat normal (not the weird kid who can’t eat stuff).

What we had to lose... she’s been vague, off with the fairies, loud, hyperactive and annoying since she got back Wednesday. But she now has the weekend and she has 2 days off next tue/wed. She had nothing important coming up at school or anything like that.

What she gained outweighed what she lost in our opinion. But her reactions are mild enough that we have that option. I don’t know what your daughter’s reactions are or how severe. Reactions can be dose dependant too so we allow some sals and put up with some vagueness but we don’t go all out all the time. My youngest can’t have dairy and gluten and her reaction is diarrhoea. That one we are far more strict on because she actually suffers. – Rachael

Day 5 today and we’ve been super strict. We noticed a difference in my son by the afternoon of day 2, day 3 he was a different child and day 4 amazing, incredible, omg!! Today we had a really good day but I did notice he was more hyper than usual, his eczema has shown up and he did have a few old grumpy moments where I worried we were teetering on the edge..though he is recovering way better from his usual reactions. The frequency, and intensity is far better as is his ability to self regulate. He also expressed that he was ‘feeling a bit grumpy today’.

A few wins

1-    he tried Brussel sprouts/mayo and kidney bean dip and liked them all, in fact he’s told me all the food has been amazing and they’re the best dinners of his life (ordinarily he would not even try them)
2-    he dropped a LEGO structure he built and said “oh well, guess I have to make it again”. My requests have been met with “ok mum” (shocked)
3-    he was offered a lollipop at the hair dresser and he said no thanks I can’t have that.  😇
4-    he hasn’t had a wet nappy once when usually he still needed a pull up at night multiple times.
5-    absolutely no nasal congestion or hay fever symptoms.

So what I’m waiting for are the withdrawals that I’ve been hearing of. I’m super worried because it’s seriously been amazing having a sense of calm. Does everyone have them? Is it usual to be amazing then go in to a spiral? How bad should I be expecting and for how long? Is it usual that his eczema would flare up?

Pictures: the dinner he helped me make tonight. Every single step he had a part in. It used to be our thing, but for several months he hasn’t been interested in helping me at all. – Karla

1490karla1     1490karla2

I have had an adverse reaction to orange food coloring for more than 20 years.  After having episodes of vomiting, diarrhea, cold sweats and fainting for one year, I narrowed it down to foods that were artificially colored orange.  Avoiding artificial orange food coloring lessened the frequency of these episodes, but I continued to have them.  A friend suggested that Annatto might be the culprit.  I have closely monitored ingredient labels since, and have greatly reduced the number of these episodes.  If a product lists "and natural flavors," I put it back on the shelf.  A beta blocker was prescribed by my doctor to keep my heart rate in check, and the fainting has not occurred since - Jeanette (USA).

I am 55 yr old male, usually very fit and active. I've been a competitive cyclist for the past 25 years. I have drunk red wine four out of every seven nights of the week for 30 years and on two nights a week I might drink a couple of beers or some white wine. I usually drink French reds or sometimes Italian (I do believe that some wines don't contain sulfites).

I've noticed on several occasions that after Pinot Grigio and some other whites and after certain beers that I would get heart palpitations similar to what you describe - very uncomfortable and even more frightening, even wondering if I would wake up dead the following morning.

Recently my palpitations have continued 24 hrs a day for the past four weeks. I went to a cardiologist and he told me I had arrythmia and went through the options.

I decided to experiment and cut out wine and beer altogether for a week. I started to feel better and tried small doses of French red wine which seemed to have no effect. Then I tried some white and the palpitations came back.

Two days ago I bought some cider (in the USA) and I've drunk two bottles a day for three days. I noticed at the time that it contains sulfites and subsequently my palpitations have reared up again.

Doctors and popular opinion just tell you to cut out alcohol, but I don't think it is the alchol at all. I don't think it's related to the colour of the wine either, but purely to the amount of sulfites it contains.

I will now be looking to eliminate sulfites altogether from my diet - Carl (USA)

UPDATE several days later: That American cider was the worst. After three days of feeling awful I drank four small glasses of a nice Cotes du Rhone last night and woke up feeling fine. I try to stick to a lot of French produce - the list of ingredients on American foods reads like a chemistry lab inventory!

I have multiple chemical and food intolerance, chronic fatigue syndrome and fibromyalgia. I've been on the low chemical diet for many many years - makes a huge difference to my fibromyalgia and also to CFS brain fog.

I just wanted to let you know that I do not find SLS* a safe chemical. If I have toothpaste that contains it, I immediately get lots of mouth ulcers. If I wash my hair with a product that contains it I get a very itchy scalp that gradually worsens the longer I use it. 

Some of the products that are similar to SLS but that are considered safer than SLS also cause me problems, only not as severe. The only one shampoo I'm coping with now is Ego QV gentle hair shampoo. The only toothpaste I've found that I tolerate is Weleda Calendula toothpaste. I'm not sure the calendula is safe, but it smells pretty mild and I don't notice an increase in my symptoms after using it. It is fluoride free. - Lesley

*sodium lauryl sulphate, used to turn liquids into a foam in things like toothpaste, body wash, soaps and detergents. See separate blog post Do you know the difference? - sulphites or sulphates, SLS or SLES

Diet is so worth it. My dd8 is such a calm lovely girl. Her teachers have no issues with her behavior even though she has adhd. She is on ritalin but it just helps with her concentration- everything else is covered by diet. She has another child in her class who also has adhd and is on ritalin- but he has such huge come downs and displays such problematic behavior. That would have been my daughter if it wasn't for this diet. I even forgot to give her ritalin one day last week and no one even noticed. My dd also reacts to dairy so if the diet doesn't do everything you need then gluten and dairy are worth looking at too – Tania

Kids and stuttering- I've started to notice when my nearly 5 year old is having a reaction her stutter is terrible then in between times it's almost gone. Is this common? - Renee

I have a daughter that is 11 and the stuttering def escalates when we are not careful with her diet - Michelle

When my son (9) has had an overload... we notice he seems like he has Tourette's syndrome. He repeats words twice, swears like a trucker & comes out with random noises!! Since being on this diet, I've not seen this behaviour - Madonna

My son used to make continual noises over and over - we especially notice it's return when he had antioxidant 320 - Teresa

My son had a severe stutter for 2 years or more, it would get better for a while, then re-appear. When we started the first steps recommended on the fed-up website, his stutter disappeared within a few days and hasn't returned. It's been 7 months now. He's 5 - Marion

See also blog on stuttering

 

I last a couple of months before I start having asthma attacks. I have symptoms all the way through ie earaches and some sore throats and more wheezy - Ruth

I recently went off for about a month. The headaches and shortness of breath returned with a vengeance. Now I'm back to only moderate sals occasionally and feeling much better - Kim

I went off as I am not salicylate sensitive & just wasn’t thinking, was off for a few months, now I’m back on as I’m having severe reactions to amines - Kate

I cheated once and was affected immediately and for 3 months. Never again!!!! It all depends how sensitive you are – Jen

I went off it, had a couple reactions to things like ham over a few weeks and then was fine to eat everything. I was only on the diet for my babies - Nik

If I cheat I feel sick within an hour - Sally

As far as I am aware failsafe/elimination diet is a diagnostic tool it isn't something to live on forever, the slow reintroduction of things is tedious but important, perhaps also other things need to be looked at - Gemma

Once I knew our triggers, we introduced everything else and live happily enough with that.  If we went back to our previous 'normal' diet, we would see the effects within hours - Stephanie

We got REALLY sick of it by the time we finished our sals challenge and decided maybe dd wasn’t so bad after all so decided to give her a week or so off. I still remember her sitting on the tiles in front of the heater, 7 years old, rocking, unable to dress herself for school. My skeptic hubby went over to the kitchen and removed the chocolate muffin in her lunch and replaced it with a pear one, and I never had a problem with him agreeing to failsafe after that. Our 7yo looked like she was drugged. That reaction was after about 3 days and was a combination of reactions. But some of our reactions are within an hour (160b for example) - Rachel

Does anyone else have a problem with gluten intolerance and mood? My step daughter is being a moody salty little thing, so nasty to everyone lately. The only thing we've changed is reintroduced gluten back into her diet. When we stopped gluten due to eczema before, her mood improved and we had a happier less cranky girl. Has anyone else experienced this or was it coincidental and I'm grasping at straws this time? – Carmen

Huge connection for my son – Amy

My son is ODD on gluten. He is FOUL!!! - Ann

Not coincidental at all. We had gluten last weekend and had 3 days of tantrums and meltdowns. My child normally never has a tantrum - Jessica

Yes! Me! I’m usually so easy going but when I have it have a short fuse and can’t help it. I know how I am acting at the time but it’s so hard to control. It’s really not worth it for me. I feel horrible afterwards - Fiona

Yes, for DS (darling son) and DH (darling husband). But it isn't gluten as such, it's wheat that is a problem. They are fine with spelt - Stephanie

It absolutely effects mood for me, my daughter and little son - Mandy

Gluten, and especially salicylates, will make me impatient and irritable. They also interfere with my sleep, so it may go back to that - Rachel

Look at propionic acid and propionates as another culprit, a bread preservative now hidden as ‘cultured dextrose’ etc in many industrialized and prepackaged gluten products - Nancy (see more at https://fedup.com.au/news/blog/caution-cultured-dextrose)

Massive connection between gluten and mood here - Eve

It was probably a combination of the terrible sleep and the gluten but we challenged it with my 1yo on Sunday. He was incredibly hard work yesterday. He only had it via my breastmilk too - Diane

Gluten makes me feel really flat and angry - Heather

Gluten and Amines for my son! - Tania

My daughter has mood issues with gluten - Kiely

Yes both myself and my daughter many foods make her very emotional and cranky - Renee

Reading these comments I just had an aha moment thanks guys. Recently tried reintroducing gluten, my DS was very moody for a few weeks....will challenge wheat only next I think ! Moodiness wasn’t on my radar as a food reaction for us as we hadn’t encountered it in the past - Rebecca

I've always had a problem with gluten. I was diagnosed as Coeliac in March last year. 15 kilos and no gallbladder later, plus gluten-free diet, and I'm finally feeling a bit more human -  Susan

Don’t forget that wholegrains can cause reactions for some people that can tolerate gluten – Teresa (see more https://fedup.com.au/information/support/checklist-of-common-mistakes#wholemeal)

Gluten makes us very cranky and moody - Emma

Same here. I'm a horrible person with wheat. The mood swings are epic. When your daughter cut gluten out did she have major withdrawals? - Skye

I can vouch for food & mood being connected with both gluten & dairy, or more specifically lactose. Definitely not the same with each of my boys thoug. I firmly believe food intolerance can impact on behaviour - Nicky

I’m a moody cow when I eat wheat more than once every few weeks - Tessa

My DS gets moody and argumentative on gluten. As you can see by all the comments you are not grasping at straws. Well done for observing the changes and checking in with the group – Narelle

Gluten, (Sals, Amines, dairy) is a problem for us but small amounts is OK. My DD8 seems to tolerate much more things these days after two years on the diet – Pat

(Be aware that some of those reporting above may be reacting to the bread preservative calcium propionate 282, sometimes hidden as 'cultured dextrose' or 'cultured' anything – including ‘cultured wheat flour’ –saw that last week in Helga’s traditional wholemeal with ‘no artificial colours, flavours, preservatives’. See also factsheet Dairy, wheat and gluten – do I need to avoid?)

For the last 15 years I have known of intolerances and have battled the hives itch swelling of airways and face with little help from the medical profession. I have the book "Friendly Food”and  have tried half half-heartedly to follow the diet but never with help … A recent doctor’s visit introduced me to your web site. It is wonderful. I finally feel that I am not the only one - Ann

Salicylates, amines and glutamates cause me behavioural problems and very loose (liquid) stools. Since Oct 2017, I have consistently formed solid stools. I can't remember ever having done so in all my life. I think that it is due to accumulated time spent on RPAH Strict Elimination Diet. I began the RPAH Strict Elimination Diet properly Jan 2015 with one of the recommended dietitians. Previously, I had been doing the RPAH Strict Elimination Diet with many errors. I began Jan 2015 with 9 different foods (7 nutritionally different foods). Now I eat 33 nutritionally different foods (all still on RPAH Strict Elimination Diet). I am at present the strongest that I have been in all my life. I did my record on the bench press at the gym 6/2/18. - Sam

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“Keep up the absolutely fantastic work, you will be vindicated and become a mythical hero in the future (she-who-fought-the-beast-before-we-even-knew-it-was-there) ;-)” – Roman (2008)

“Sue, I'm sure you have felt many times over the years that you are a quiet voice speaking against a loud majority, but I think we are slowly getting louder too!” – Veronica (2009)

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

“I can only say that without your help, I had no idea where to turn.  The professional field let me down big time “ – Sharon (2012)

“The incredibly positive feedback I am getting from parents is what keeps me handing out your brochures” ­ - speech pathologist (2012)

“Your friendship, information, help and most of all, support, have been invaluable in keeping my beautiful daughter alive. Thank you both so very, very much” – Sharyn (2013)

“Our paediatrician said 'keep on following Sue Dengate, what a marvellous thing she has been doing and helping children'” - facebook group (2013)

"Ten years ago the teachers and doctors wanted to medicate our daughter for ADHD ... Last year she graduated high school with one of the highest scores which guaranteed her entry into top universities. Everyone comments on how polite and engaging she is as a teenager. My advice to those starting the failsafe journey ... hang in there ... the rewards are well worth the effort." – D (2013)

“Our kids don't have food intolerances, they just don't tolerate all the crap” – Suzanne (2014)

“I continue to enjoy my amazing health turnaround since discovering salicylates” - Dave (2015)

“This has been the most life changing thing we have ever done” - Janette (2015)

“It’s difficult but also the best thing you’ll ever do” – Sally (2017).

I have arthritis and I find amines increase my joint pain and give me a full constant headache that I can’t shift. I have found following a mostly vegetarian diet (2/7 meat or chicken) plus low amines really helps – Ruth

I used to get joint pain and swelling (amongst other symptoms) - I was tested for arthritis a few times, but in the long run it all came back as amine intolerance – Kristy

I have fibromyalgia and msg/glutamates cause horrific pain through my whole body, but I'm ok with amines – Claire

My joint pain and puffy red hands have decreased significantly since going Failsafe 3 months ago. The biggest help though is movement. I use a mini trampoline and just bounce and go through mobility moves. Also Feldenkrais (awareness through movement) is super helpful - Irene

See Arthritis and joint pain factsheet and associated story collection.

Has anyone noticed a change in their sense of smell? Deodorizers that used to smell fine now smell awful. I’ve also noticed that whereas I could smell sewer gas in the pipes before going FA, it now smells like bad perfume. I would not classify my story as an improved sense of smell - failsafe changed the smell of things, but I don’t think for the better - Michal

I can smell things a lot more now. I thought I was pregnant for awhile there lol - Skye

I think my sense of smell is even more acute than it was before (and it was good). I'm now also super sensitive to fragrances so use Azep nasal spray which has made a massive difference (no reactions, even walking thru the fragrance dept of Myer/DJs)  - Jane

I can smell heaps more than I used to, the gel that people use at work annoys me, hubby is banned from using smelly anything – Meaghan

Tip: if you have something you want to remove the smell from, put it in a sealed container with a container of bicarb and let it sit for a week or so. The bicarb will absorb the smell. The bicarb doesn't have to touch the smelly item, it just needs to be in the same sealed container – Jane

Absolutely, sals = tinnitus for me. I have been able to eat the odd moderate salicylate containing food without nausea, and I've been doing this daily. It is very loud in my ears! But I'm able to not be too troubled by it so I still indulge. As soon as I get nausea though, I pull back. – Sally

Yes just being low chemical I find I don’t hear the ringing anymore. If I overload on higher (mod-high salicylates) I get ear ringing when I lay my head down to go to sleep – Serena

Salicylates can exacerbate this condition we have found at Royal Prince Alfred Hospital Allergy Unit – RPA Dietitian

I'm an audiologist. There are a number of causes for tinnitus, it is a symptom not a disease. Even at uni we learn about aspirin potentially being a cause. Anything that puts the body under stress can cause or make it worse. Illness, food intolerance, stress. In my own experience yes food intolerance was a major cause. I remember failing amines challenge ohhh the noise. (Not the only trigger in my case but was the worst) – Jackie

See updated Tinnitus story collection

It’s difficult but also the best thing you’ll ever do – Sally

I have long suffered from restless legs as a result of some foods and just discovered 160b in Bulla ice cream bars impacts on me. I am under meds to help me sleep through my issues and now know I have to avoid 160b it seems to be doing the trick – John

I went on this diet for gut issues but my fibromyalgia & arthritis is sooo much better & I haven't had a migraine in 3 years now!! – Sharyn

Joint pain (quite bad on occasions) was one of my symptoms before doing failsafe, as was insomnia (plus bleeding guts and the angry amine feeling). Joint pain gone completely and insomnia comes back very occasionally through FS – Rachael

I have used FAILSAFE for my sons with asthma which has had amazing results – Tracey

As an adult, I literally feel like banging my head (sometimes do hit it with my hand hard) when I have 160b. It’s a horrid horrible feeling of tension and more – Chris

Just had one of those moments at my local butcher -> overheard a Mum ask Re slaughter date due to amine issues. Nearly hugged her and asked if she wanted to be my best friend forever - Sue

Annatto 160b: My six year old son will wake up a couple of times during the night if he has anything with annatto in it during the day. Artificial red (and possibly yellow) cause him to have a few night terrors during the night after he has had it during the day and can sometimes last up to two nights – Kim from Canada

Failsafe - the future always looks so dismal when all you see is posts about intolerance and reaction.

Well, my 13yo just walked into the kitchen to make herself a smoothie with milk, yoghurt, blueberries, raspberries, banana, and mango. Having finished all the apples and polished off the remains of last night’s Sunkist (a fizzy orange drink that in Australia contains only one preservative, 211 benzoate but other ingredients overseas), and is planning to make choc-chip biscuits tomorrow.

How big a deal is this? Where did we start?

Well, by the time she was 2 years old we’d gone DF then additive-free then full FS. With dietitian supervision, we were at one point FS DF GF SF egg-free sulphurous food free and something in lentils/beans had set her off, no pears and no added sugars and no vegetable oils, and she was essentially a low amine carnivore. It got to the point where I understood that it was every time I put the food on a plate or in a cup - it was the FS dishwashing liquid!

So having found a safe dishwashing powder but not a dishwashing liquid, and making my own laundry detergent, and using nothing but steam for mopping, etc. my little girl who was living on pretty much just meat was finally clear.

Things weren’t looking promising.

It took quite a bit of puzzling, but ultimately she passed dairy, soy, wheat (but not bread) and sugar and was okay with rice bran oil.

Choko. Pass. Swede. Pass.

Once I took the fruit and veg out, she passed the other challenge foods.

Life got a lot easier.

Passed 211. Passed 133 (blue).

Medication got a lot easier.

Started looking outside of FS at fruit/veg.

She passed, step by step, sweet potato, beetroot, blueberries, lychees, mango, raspberries, mulberries, corn.

... and that was pretty much it, until suddenly at about 8 years old she wasn’t as sensitive. Suddenly, she pretty much just woke up one morning and was okay with pears and bananas and other things, and was simply less sensitive in general. A single ham sandwich could now happen, whereas it previously would have meant a reaction.

... and then at 12 years old, having not been able to have so much as half an apple in ten years without being up all night crying in pain, she’s eating an apple a day.
We still need to navigate. The Sunkist has 211. Most other drinks are still very much off limits. And it’s very much a limited treat.

But life isn’t what it looked like it was going to be.

While others have at times criticised the lack of the latest “must have health food”, she’s healthy and happy and has a wide range of nutrition in her current diet as is. 🙂

How did she get there? What did we do?

Nothing. Stayed within her limits, maximising her nutrition and maintaining her health as best we could. Yoghurt (Vaalia) helps when she’s been unwell and is more sensitive, a few home made broths/stocks from stews along the way, but that’s it. Nothing special.

Just because it looks bad now doesn’t mean it’s going to stay that way. One or two answers can clear the way for more answers to follow, and suddenly things can be very different. Don’t underestimate what time can do - Tracy

Have just had a double incident with Annatto 160b in Peters Connoisseur Vanilla ice cream. My 6 yr old grandaughter came up in two enormous allergic weals and I had what for me is a classic delayed reaction after 24 hrs. I am salicylate and benzoate intolerant with adverse reactions also to tartrazine and some other colours. I became physically and mentally exhausted with leg trembling which lasted for much of the day. It is a great concern that annatto is now being substituted for artificial colours. It may be of interest to you that we are a family with salicylate intolerance. My brother has Samter’s triad - asthma, nasal polyposis and anaphylaxis to aspirin - Ann

I’m 58 with a severe salicylate intolerance and thankfully, my avoidance of sals over the last 7 months has "cured", or put me in remission, for ulcerative colitis. My ulcerative colitis developed from my Paleo diet (to lose weight – juicing tons of spinach and eating almond breads, I thought it would cure my years of issues) and a natural practitioner who gave me high doses of Chinese herbs, thinking she was helping.

My GI doc said my recovery was remarkable. She also said I don't have to come back for 10 years. I think that is as close to a cure as anyone could get. I truly believe the salicylates crashed me and caused it. The stats I have discovered are that 7-10% of patients with UC or Crohn's have salicylate issues - if more docs knew this - they wouldn't give them meds which are...duh....salicylates. Thankfully, my doc listened to me and was willing to read my research - combined with real results - Kathy in 2014.

FOLLOWUP four years later: Yes, my ulcerative colitis is still fully in remission (I was diagnosed with moderate UC).  The GI doc gave me a 10 year return visit and was impressed at my healing – saying it should never have happened. I think salicylates are connected to other things like oxalates and histamines - it is not a stand alone. My roseacea is also cleared after 3 years of a dermatologist trying to fix it. My fibromyalgia is gone, as well. I'm in pretty good shape considering I thought I was a goner 4 years ago. Had I not been a persistent person and researched on my own, I’m not sure I would be as well today as I am.  But I believe I will always have to manage this issue.  My genetics say so and the epigenetic influences I have been exposed to say so as well - Kathy in 2018.

See Sue's blog on colitis

With a diagnosis of ADHD, our paediatrician recommended Ritalin (as a first step). I refused and taught her a bloody good lesson on the results that can be achieved with just removing food. She admitted she never thought it would work (in fact she put me down about it at the time) but because I had worked with a qualified dietician and we had an amazing change in my daughter she accepted it. She then said she could no longer give my daughter a diagnosis for ODD and ADHD and we obviously didn't need the Ritalin. So there’s nothing to be nervous about. See a recommended dietitian. The best thing is you leave with a list of what you can eat not an overwhelming feeling of can't have this. In fact the RPAH elimination book and the fedup shopping list are like that. Lists of what you can eat. It’s not as hard as you think – Roxanne

I have been having terrible headaches within the past year. I am 55 years old and fortunately I rarely had headaches most of my life, especially ones that have lasted for days. I am a creature of habit and so I was able to zero in on the cause after only a few months. At first I started eating Cheezits on a daily basis because I like to bring a snack to work, this is when they started. After that I was eating Colby jack cheese. I knew that some ingredient was causing the headaches but I did not figure it out right away. After I avoided these two foods for a while the headaches stopped. They started up again after I started eating instant grits with the butter flavor, no issues with regular flavor.  After comparing these three items they all contained Annatto. No headaches since - Margie USA

Kia ora, just wanted to update my journey on here. I have been more or less failsafe with a few little hiccups, as well as gf and df. I noticed after being as failsafe as poss (keep eating that chicken skin lolz), that my reactive hypoglycemia hasn't happened. I noticed after I had some unsweetened almond milk that I had an immediate sugar drop and got really disoriented and miserable. I haven't been sleeping well lately, but I have noticed that when I am staying gf and df failsafe that my sugars are stable. Normally I have a total collapse but I am coping physically better. I'm even eating sugar, which I enjoy, and not having any episodes. I always thought that sugar was one of the main culprits, but I have finally proved that it isn't the sugar causing my reactions. It is the dairy, gluten and all other food chemicals. It has blown my mind totally. I have been fighting some sniffles and cold germs. By now I would normally have a bad chest infection. But even eating sugar, I am doing so well and haven't gotten as sick as I normally do. Yay failsafe!!!! From Te-Rang

See more https://fedup.com.au/factsheets/additive-and-natural-chemical-factsheets/sugar-and-hyperactivity and https://fedup.com.au/factsheets/additive-and-natural-chemical-factsheets/salicylates with references supporting this report.

Off and on for several years I experienced pain in my ribs, right side and around to my back. This would be stopping me in my tracks sharp pain, and I couldn't sleep. Doctors on three separate occasions, a few years apart, concluded it was my gall bladder but expensive tests proved that to be untrue. Then my liver count made no sense, so liver problems? Kidneys? Not the pain problem. Then my pain became more constant and daily.

I went to another doctor in late 2015 who had never seen me before. This new doctor within moments diagnosed costochondriditis (an inflammation of cartilage in the rib cage) which could take months to get better. In 2016, a new doctor thought again tests for gall bladder or liver so I was sent to a gastroenterologist. More tests. Inconclusive.

All these years I had allergic reactions to many things including a known nut and seed allergy. Medications were changed that resulted in needing to be hospitalized twice. I constantly had rashes, hives and the awful sharp pain randomly coming and going. More specific tests for gall bladder, kidneys, liver, and rheumatoid arthritis, and other things. Negative reports.

Finally, in 2017, I had to do something different as my pain was more frequent and I had had hives or rash of some kind constantly for past six months. I had begun writing down everything I ate or drank. There didn't seem to be any rhythm or reason to the itching or the flares of increasing pain. I was fairly confident that these symptoms were not from my prescription medication.

Then one August weekend after feeling very happy with myself for eating clean healthy foods, I experienced the worst allergic reaction to date. I honestly thought I had the entire checklist for a woman experiencing a heart attack! It was hard to breath and move. I could reach my blood pressure monitor so before calling 911, I took my blood pressure and pulse. I was fine, then I began to itch and noticed hives. I took a Benadryl, I began to feel better. A Benadryl cannot stop a heart attack! Once I felt better I went over and over my food list for the weekend. Everything I had eaten before! What had changed? I was convinced that something in the food was cause.

I spent hours looking up ingredients in the foods I normally ate but concentrating on the past two days! I saw that something called ANNATTO was in or had recently been added to nearly everything on my weekend food list. It was a new NATURAL flavor or color! I realized the healthy nut free bread, organic tomato soup and organic cheddar grilled cheese sandwich, clear soda, natural ice cream, Starbucks salad and organic protein bar all contained ANNATTO!!!!

So I gave up my organic foods, started to only eat whole fruits and vegetables, fresh sour dough bread, whole eggs, real butter, and only things I made myself. No rib or side pain, no rash, no hives, no breathing problems, no back pain, no swollen ankles and hands NOTHING!
My doctor is thrilled with the changes and she and I are very curious for to have my blood tested, to see if they will reflect the inflammation that seems to have disappeared! Since August, I've occasionally had my old symptoms reappear after getting tricked to eat something that I used to be able to eat. Or something that was added in a salad or food that contains ANNATTO.

100% of the time it had ANNATTO hidden in the ingredients. 100% of the time my symptoms are pain, side, back rib, itch, burping, chest respiratory heaviness. If a lot of ANNATTO then my ankles, legs, hands swell as well. The reactions can last thirty minutes to hours and overnight! Benadryl does help.

It is extremely difficult to find what foods and products contain ANNATTO! Some companies have been very helpful, while others seem to feel proud that that are using a natural flavoring or color! - Gerri  USA (italics added)

Back story. When he was 3 he got cdiff (an infection of the gut caused by the bacteria Clostridium difficile, often after antibiotics). It cleared but he would still have bloody mucus stools and to a point literally just pass a bit of blood and mucus. No stool. He went into growth retention. Blood tests, cdiff tests all came back in range.  When he was 18 months he had Goldfish (a type of biscuit containing annatto) and broke out into hives. At school he had Cheez-its (a cheese cracker containing annatto). Broke out into hives.  The only common ingredient was annatto.  During the same period he developed alopecia. I talked with his gastro and he said take him off all annatto give it three weeks and see what happens.  His hair grew back, he gained 10 lbs and has had normal stool since!  He is 8 now.  It's not all a coincidence. I know in my mama gut annatto is evil.  This is his story – Angela from USA (italics added)

See also Alopecia factsheet

My 2 boys (now young adults) are very sensitive to amines. I won't buy meat from Woolworths or Coles anymore because my sons have always reacted to it.

I prefer to purchase fresh from a local butcher but sometimes there isn't a choice … from time to time I now buy some meat from ALDI: the chicken mince, legs of lamb, and occasionally the beef mince. I buy them as soon as they come in and we eat them that day or the next day at the latest (rarely but when necessary – eg staying in rental accommodation on a weekend), and we haven't had any problems. For super sensitives I wouldn't do it regularly but it really gets us out of a jam when we need it. I think the secret is in the high turnover at ALDI  – Sheryl

I've just found your article about preservative 202, so now we know why my daughter always get the tingling sensation in her tongue and burning mouth every time she eats the Hommus Dip from Aldi. So bad that she cannot eat it anymore. We went through the ingredient list, it never occurred to us that the last ingredient which was 202 could be the offender!!! We all thought this was caused by her being allergic to sesame, which is also present in the dip, but the mystery is that she could eat sesame in other foods??? Now the mystery is solved!!! Thank you! - Mary

(Sue's comment: Sorbate preservatives in cosmetics and skin creams are known to cause skin irritation - a burning and stinging sensation of the skin - and contact dermatitis in some users. Similarly, when used as preservatives in foods, sorbates can cause stinging and burning in the mouth. This is known as Burning Mouth Syndrome. The sorbate group includes sorbic acid 200, sodium sorbate 201, potassium sorbate 202, and calcium sorbate 203. See sorbate factsheet for more information)

I was on the Fodmap and it wasn't working and now I going low Salicylate foods and I'm improving a lot - Karen USA

I have been suffering for 10 years with migraines/headaches, etc., seen numerous physicians and not one was able to figure out why. My constant research brought me to you and your diet has saved my life. I can't say thank you enough - Cheryl

Our 9yo reached baseline after 4 weeks on the strict diet. He became calm and compliant and our home was no longer a war zone. He responded to sals on day 3 of the challenge and has taken 3 weeks to return to baseline – Peter

I don't have eczema but I do have a range of ailments that doctors have tried to tell me for years weren't related to food. Amazing that all the ailments have disappeared during the strict phase of my elimination diet. I don’t trust any doctor that rules out food from the conversation - Ali

Anyone done the diet for sleep and anxiety issues? My nephew who is seven is having issues falling asleep and staying asleep. My poor brother and his wife are like zombies. Just wondered if diet made a difference for anyone and if it did what the culprits were? - Heather

I didn't do the diet for insomnia but it has cured my insomnia which I had had for over a decade - Sharyn

Same here - Rachael

My daughter's main symptom when she was younger was sleep issues, not anxiety though. It definitely helped her a lot - Kristy

Through the elimination diet Miss 7's anxiety (quite crippling) has completely disappeared. Now working through the food challenges to discover the culprits. Her sleep is vastly improved - Alison

For me, sleep issues are a1 dairy, colours and sulphites. For my son, it's chocolate and benzoates. Amine reduction improves DP's sleep. And actually, DP sleeps better when he has wheat, but gets major mood issues, so he's very careful to avoid it - Stephanie

The DD we started the diet for had primarily issues surrounding anxiety. When she's FS the anxiety is almost non-existent. Comes back for her with too many sals, amines results in aggression and glutamates pure nonsense and irrational. The specifics for everyone are different but yes, huge difference and a great sleeper after diet started too once we got through the elimination and withdrawal - Kerryn

My boy's poor sleep definitely improved once we figured out his salicylate intolerance - Chanel

Absolutely there was an improvement. Went low salicylate for my son. Falls asleep faster and night terrors and sleep walking have completely stopped - Ali

Removing high sals, Amines and glutamates has stopped Miss 4.3yo insomnia - Amy

My DS took on average 2- 2 1/2 hrs to go to sleep! We had to take it in turns 😳 and he frequently woke up with nightmares. (We did this from dot to 8yrs). After starting elimination diet, that went down to 1/2 hour to go to sleep which was fine as I loved reading to him within a couple of weeks and rarely woke up during the night - Teresa

Yes sleep was why I started the diet, for my breastfed son. Salicylates, glutamates, antioxidants and artificial colours make my son's sleep bad. Currently he's not sleeping well because I've pushed salicylates liberalisation too far 😓 - Melissa

Sensitive Sleep Solutions is my sleep consultancy for children. I would highly recommend trialling this diet if her parents have addressed other sleep and health related issues. Low Sal diet was the start of the solution to my son’s sleep issues. Years down the track I now have another failsafe family member who has found relief from a lifetime of insomnia/anxiety/depression - Lisa

Amines make it difficult for my 11yo to get to and stay asleep - Kim

I was diagnosed with mild sleep apnea. The docs couldn't figure out why with only a mild case I was so lethargic ALL the time. I started the elimination diet and found out gluten and soy are the major culprits to my lethargy. Only 2 store bought soy coffees will be enough to make me tired for a couple of days – Carmen

Amines intolerance! Rashes, aggro, broken sleep were all our signs too. Use to wake 10-20 times a night till 17 months. We cut out all amines and gluten dairy (use goats milk) and sleeps 12 hrs solid no rashes and happy. But give him a banana and you'll know it!! (gets so cranky) – Natalie

My other big issue is with some perfumes, perfumed room 'fresheners', particularly carpet cleaners and perfumed washing powder.  I have had some serious breathing problems from these. At work at one point they changed to a dreadful 'rose' perfumed air freshener, which affected me immediately, firstly my lips felt like they were burning and then swelled up, one eye swelled and breathing became difficult. No-one else in the office could smell it, the cleaning company denied changing products and it ended with everyone thinking it was 'all in my head'. Generally household cleaners don't bother me. I find my life can be an absolute nightmare - Suzanne

I'm sensitive to all smells. My father is a handyman. He is always using all sorts of industrial solvents, glues, paints etc. Lately, he is painting the boat under the house. However, he must shut all the doors and windows of the house before opening any paint tin. I tolerate smells better outside due to large amount of air. I tolerate smells much less in an enclosed environment (such as the house). I try to avoid prolonged exposure to indoor environments where I cannot control the smell, e.g. shopping centres or air conditioned office buildings with no external opening windows. Once a smell enters the air conditioning, it goes all throughout the building - Sam

Wow i am so happy that I came across your website. I recently broke out in dermatitis on my face due to food intolerance to egg & lactose (which I had been eating most days since reintroducing back into my diet 9 months ago). I thought I was coping well, then 2 weeks later the dermatitis turned into a staph infection because of a nose bleed ... I was put onto antibiotics & steroids which did clear my face up - for not even a week - because unfortunately a few days completing the meds i ate a couple of protein balls (cashews, dates, pea protein & coconut) I then started to welt up again within about an hour & for the next week my face continued to puff up in red angry rash, swollen cheeks. Some days I'd wake up swollen other times would get redder/swollen as the day went on. I was sure there was something else causing this reaction other than what I already knew because I had not been eating any eggs/dairy but a truck load of berries, apples, oranges chia pudding sprinkled with coconut, almonds, pumpkin seeds & dates. I got onto google & came across salicylate sensitivity which I 100% believe was triggered by the medication I was put on.

I thought i was eating a healthy balanced diet but most foods in the moderate to high salicylate tier (broccoli, zucchini, sweet potato, pumpkin & smoothie bowls) are my faves. It could just be a coincidence but thought I'd share my experience with you. I'm now on day 3 of my elimination diet & my skin has improved & while i'm chilling in bed as I write this my face isn't the usual angry red it has been the past few weeks. I also am no longer feeling clammy/anxious like I have been over the past couple of weeks.

Update day 4: my skin is even better today.

Update 2 months later: I'm still following the diet eating low/negligible foods in salicylates (8 weeks) & also amines (6 weeks). Skin is looking great. Face is back to normal. I'm seeing a dietitian soon, I found her on your website so I'm hoping to be able to reintroduce some foods or at least start challenges. I have joined your fb page and have found it really helpful along with your book Fed Up. I just can't thank you enough - Michelle

I was diagnosed with salicylate allergy about 8 years ago. I am usually very careful and try to avoid food with high to very high salicylate levels and eat some of the ones where the level is low. My biggest problem is the way many medications affect me and I put it down to salicylates. I leave aspirin and other anti-inflammatories alone. I am an asthmatic so have left those alone for many years. I have found that many medications affect me, including the majority of blood pressure medications. I take one now that only gives me a slight reaction if I take it with an anti-histamine. I’ve also had allergic reactions, i.e. rashes and breathing problems from vitamin tablets, antibiotics, lots of tablets. Someone told me that salicylates are often used in tablet compounds, not sure if this is true. Very often MIMS does not mention that a medication contains salicylates. I have contacted drug companies to ask them if a particular drug contains salicylates and they have told me they are present, but this is not mentioned anywhere, labelling, MIMS. Sometimes a pharmacist can tell me.  It is an absolute minefield. So many doctors do not take it seriously, they tend to brush it away. When I’ve requested a different antibiotic they still will prescribe the one that affects my breathing.  Fortunately my local pharmacist can often give me a genetic version of the drug, containing no salicylates.  I’m getting to a stage where I’m terrified to take anything. I used to take Blackmores 1000mg garlic tablets, they were fine and didn’t affect me in any way. Recently they stopped producing those and replaced them with a 10,000mg version. 1st time I took one, severe reaction, affecting my breathing, swelling of the throat, etc. I used to think it was all asthma, but then the asthma medication didn’t give relief. Since diagnosis of my allergy my ‘asthma’ is very much improved. Now when I wheeze at night, usually after eating in a restaurant, I take an anti-histamine and I’m fine, in the past I used my puffers and they didn’t work. 
 
(Sue's comment: We agree. It is harder than ever to find medication that won't kill you since the TGA introduced pathetic labelling requirements for pharmaceuticals: now only active ingredients and preservatives have to be listed. Obviously they are protecting industry not consumers. We recommend medication guidelines in the RPAH allergy clinic publication "RPAH Elimination Diet Handbook" supplements and medications sections, pages 107-119, available from dietitians and the RPAH clinic. They say: Avoid aspirin and non-essential medications, avoid colours, flavours and/or preservatives (especially in syrups and mixtures); avoid herbal products and topical products (skin creams) with menthol, essential oils, aromas. They list some suitable medications that can be used by people who are sensitive to salicylates, e.g. Clopidogrel for blood thinning; alternatives for pain relief, antihistamines, asthma medication, supplements and many more. http://www.slhd.nsw.gov.au/rpa/allergy/resources/foodintol/handbook.html )

Also see story [1386] Life-threatening reaction to anti-inflammatory drugs plus blackberries: "A&E seemed totally unaware of the salicylate link" (March 2016)

I have 2 children, aged 4 and 16 months and I have been battling for years to figure out what is going on, gut wise and behaviour wise.

They are both on gluten free diets as there is Coeliac disease in our families, and my 16 month old is also on a dairy free diet because of his issues and I cannot figure out why he in particular is not getting any better.

I would have assumed being on a GF and dairy free diet they are only eating good food, but from your website I'm now understanding there is so much more to look into food additives/preservatives/salicylates. As it turns out, some GF breads have preservative 282 in them. Apple juice has preservative 202 so too the butter I have been putting on her bread. That is easy to cut out now because of your website, but there is still so much more that makes my head spin, in particular the flours and what goes into GF products ... tapioca starch, tapioca flour, cornflour, corn, potato starch, potato flour… argh! it's so hard to know what is ok and what is not!!

UPDATE:  I have been seeing a dietitian for 5 weeks now to help work my son out. It is definitely looking like salicylates are one of his issues! With corn high on the list! On this trial I have now had almost 1 full week of him sleeping through the night, he is so happy to eat and generally all round a much happier 17 month old. I am back to dietitian on Tuesday for a follow up and to talk about the next step. Your website has been the best thing for my life!! - Tennille

I was searching for symptoms after making a connection between intake of white willow bark tincture for back pain and vertigo. I've just seen your Salicylate Factsheet and it all makes sense - especially as I’ve been using Ibuprofen regularly for my chronic back pain made worse by a car accident a year ago.
 
Initially I used a product recommended by the health shop called 7 Solgar. It helped the pain but didn’t agree with me so I switched to white willow bark and have had vertigo for 2 weeks.

I stopped taking all my herbal medicines and the vertigo subsided but came back today after taking white willow bark and then a light bulb came on! Not helped by mixing it all in a nutribullet with fruit!!  Thanks for the article – real help. - Ramesh, UK

(Sue’s comment: And see my blog post Vertigo and salicylates- we have been surprised by the huge amount of interest in it.)

 

Do you think 'your honour, I was testing adding in amines again' would work as a defence in court?

Depends whether the judge was a failsafer - Rachael

I feel like understanding this post is a "laugh or cry" moment - Nik

I like to think of them as angry amines :( - Rachael

Mainly angry cheese woman :(

Speaking as a 'nightmare scary chocolate psycho' I can fully sympathise! - Kathy

We have antagonistic amines here. It would be me on trial, not the child.

Bahahaha - Ruth

That gives you the perfect excuse to lock yourself away In a Epsom salt/bicarbonate of soda bath! -  Teresa

BwahahhahHaha I sure hope so for my children's sake!!!! – Adreanne

(If this dialogue puzzles you, see Factsheet on amines, a natural chemical found in foods).

I would just like to say that preservatives affect adults too. I discovered some years ago that additives in the 200-300 range seem to make me ill even to the point of giving up my job. Two out of three of my children are also affected by preservatives in food. I live on fresh food and for the last 3 years mainly vegetarian. I no longer suffer with the severe headaches that plagued me most of my life. I am just so pleased to see that it is not all in my head. - email (this report first appeared in Failsafe Newsletter 34 in 2002 but was not numbered)

I have just experienced a reaction to eating Continental Spring Vegetable Simmer Soup with flavour enhancer 635. I broke put in a severe rash with blisters under the skin. I had a warm bath and used a soothing cream and medicated powder. Most of my body is affected. I have taken an antihistamine tablet. Is there anything else I can do to get relief? - David

A Caltrate tablet helped kill the reaction for me in about 30 minutes. I haven't touched msg for about 14 years now - was the main thing that caused my asthma, migraines and I would vomit the next day - sensitive side of things - Tracy

I still have the rash but it has reduced in intensity. I have resisted the urge to scratch but it is like a living hell. This is the first time for me. It is starting to now. It made me very weak as well as heart palpitations and migraine - David

(Howard's comment: David lodged a formal complaint with the state food safety authority, with no reply after two months, and also with the food company, who apologised and provided a $30 voucher. See more on 635 Factsheet)

This time last week my 3 year old son was crying in pain from the welts, open sores and eczema that covered his entire body. I had ice packs on him and was dosing him up with pain medication, steroids and anti-histamines... again. He has suffered like this from 4 months old. We have done everything under the sun to help him (and his older brother) but nothing has really worked. We use steroid creams every single day, as well as wet wraps etc.

Their skin specialist denied that eczema has anything to do with allergies or food intolerances. Over and over she said "they are born that way, the creams are the best way to help them". Well, after much research and getting in to see a dietician, I started my 3 year old on the strict failsafe diet on Monday (we were already gluten and dairy free). Within 24 hours the redness in my son's skin was gone, he had stopped scratching. Within 48 hours his sores had stopped oozing and started to heal. Just 7 days in and his skin actually feels human and not reptilian. He keeps telling me how much better his skin feels and for the very first time in his life he slept through the night. The WHOLE night!!! I'm blown away and kicking myself for not doing this years ago AND very scared to start challenges. I have had them on an organic fruit and veges diet, full of fermented and cultured foods, bone broths etc. turns out I was making them worse. But all in all, a result I had never even thought was possible! You can see the massive improvement in the pictures! - Emma

1454eczema

My daughter had the same experience - covered head to toes in eczema and medicated creams did virtually nothing. 11 years of now being Failsafe and she has only had a tiny patch of eczema a couple of times, always for her linked to an overload of salicylates. I never believed that healthy fruit & vegetables could cause such dire eczema, but it absolutely does. Best wishes to you and your son for an eczema-free life - Louise

My son's dermatologist told me this too, that his eczema was nothing to do with food. I didn't believe him, because I had already seen his eczema worsen every time I ate eggs (he was fully breastfed at the time). His eczema (and tantrums and night terrors, too) melted away completely within 3 months of going off artificial colours, preservatives and additives. That was several years ago and we have not looked back. Well done to you for finding the answer!  - Paula

Wow! What an improvement! I have seen first-hand the effects of diet on skin conditions in my family. It's irrefutable to me - Nicky

I totally agree. The change in him is completely undeniable. Anyone who knows us has commented on the massive improvement in his skin. He looked like a leper a week ago and today a normal child. I can't believe that a specialist would completely dismiss food intolerances?!! – Emma again

My child's meltdowns melted away after removing artificial food dyes, preservatives, and artificial flavors. But of course, like yourself, two different doctors told me food had NOTHING to do with her meltdowns and constant crying. Ya right. They actually told me she needed therapy and to seek out a mental health professional – Kathy

I was also shut down by medical professionals, I'm diagnosed a mental illness called somatic symptom disorder because of that diagnosis I've been told I have to stop all investigations and just treat the pain I get, but now I know the pain is definitely from food! – Lauren

Well done for trusting yourself! We got told the same thing about both of my kids, my daughter was full body eczema and it kept getting infected. My son not so bad, but upset tummy all the time. When she was around nine months we started the failsafe process for both kids and myself. They are so much healthier for it. Only small amounts of cortisone now and usually only when we have a challenge or slip up. Be brave and do the challenges, you will probably find that there are only a few that trigger symptoms and then you will be able to broaden your diet. I have also found that recovery from the challenges is quicker than the initial healing. And if they are like my kids you might be able to stop after only two days of a challenge because you can already see the dreaded return of eczema. Also you may be surprised what other things improve as well as eczema and sleep - Megan

The best help I got from any Dr was when he said 'just keep doing what you are doing, because it's working' - Kim

The medical profession as a whole don't know, and they can't pass on what they don't know – Paula again

I think something we need to keep in mind when talking to doctors is saying "Royal Prince Alfred Hospital Allergy Unit elimination diet".  They may take more notice of a diet that has been studied and comes out of a hospital - Tania

We are on day 124 of failsafe (yes I count the days in their food journal haha) and the improvements we have seen are phenomenal. We originally started for behavioural issues with my 3 yo (eldest of three) which have improved 10 fold but also in the process have completely eliminated the angry rashes that used to flare up "for no reason" (we now know salicylates or ‘sals’ were our culprit). Definitely a journey but completely worth it! And thank you!

We have come such a long way and I'm so proud of myself but even prouder of them. Gone are the days of chicken nuggets. Today for lunch we are having coleslaw (cabbage, celery, choko with him mayo), mini chicken mince balls and potato chips!

1453chickenballs

Our issues started around 2.5yrs with anger, defiance, hyperactivity, short fuse, one track mind, resisting sleep, poor speaking, not playing well with other kids, argumentative, constantly frowning, horrible behaviour out in public. You know the screaming child doing the ragdoll out in public? This was him.

The day that made me realize I had to do something was when I bawled to my husband in the shower after a bad day saying "I'm so disappointed in myself and I'm so angry I have a child like this!" I was completely defeated
My mum recommended failsafe to me and gave me the book to read. Haven't looked back. First month was rough as he had withdrawals which made his behaviour worse but now that we have come through the other side I'm just amazed. It is 1000000% worth it. Now he's a happy calm boy that listens and we can take out without dreading how he's going to react - Elizabeth

Lisa: I've been chatting to my husband about the diet. My son is 4 and is very active, doesn't listen, tantrums when he doesn't get his way. His language is very good it's just his behaviour. He starts school next year. He craves our attention so much and having 3 kids means we can't give it all to him and so hoping we can work out what foods are triggering certain behaviours. Thanks. It helps to chat to people who have similar issues.

My hubby wasn't 100% convinced with the diet until we reintroduced foods on a "challenge" and Mr 3s behaviour turned horrible again, then we both realised how much he'd changed - Elizabeth

Karina to Lisa: your son sounds very similar to my now 5.5 year old before we started the diet 2 years ago. Believe me when I say it's worth it xo. We are a happy functional family again. Sure, Mr 5.5 still has his moments, but it doesn't even compare to when he is off the diet. It was a good week before we saw any improvement. What we now know as 'normal' son took 3 weeks. In saying that he's particularly sensitive to the additives and preservatives and colours in food (one red lolly and we've got an angry aggressive boy again for a week) so it might be quicker for you. Good luck and best wishes.

Corrie: I am right there with you. We are not far in and have not gone the full diet and already we have a calmer child. She is still fairly inattentive but that we can manage, it is the tantrums, defiance, and aimless activity that is the tiring part.

Just thought I'd share. My son (now 12) was on the failsafe diet for a number of years due to his behaviour which was a result of food intolerances.

As a teacher, I see so many kids that would benefit from a change in diet but it is a very tricky subject to raise with parents. About 5 years ago, I taught a little boy with Autism. He was very bright but his behaviour was extremely challenging both at home and at school (picture a 5 year old hurling chairs through the classroom with 20 other kids ducking for cover).

Last week I received a lovely message from his mum, who found my name on facebook. She wanted to thank me for "changing his life". She did look into food intolerances and has made changes to his diet (and hers) and it has made a huge difference.

My point is....I know that this is a long and difficult journey. And sometimes people think you are crazy and don't believe that food is the culprit.

But I truly believe you can change your child's life by eliminating those foods that are not working, for whatever reason.

So stick with it. You are all doing such a great job at helping your child (or you) to become the best possible version of you - Jenny

We've just completed the Benzoates challenge. Holy moly I've never seen my 2yr old act like that - Belinda

We just had a 10 day reaction to benzoates with my 5 year old. Not pretty is it 😔 - Louise

Benzoates are UUUUUUUUUGLY!!! - Lucinda

(Howard's comment: for challenges, dietitians usually recommend lemonade which contains a benzoate (210-219) preservative. Benzoates are also common in medicines, fruit juices, cordials and in many personal care products. See more in Benzoate story collection)

My 12 year (gluten sensitivity, nut and seasonal allergies) just had a reaction to the Annatto extract used in Earth Balance Soy Free Vegan butter. We've never used this product before but did some gluten free baking with it. Each time he ate the cookie we made, he had a respiratory reaction. He said he felt like his throat itched, he needs to cough and he keeps clearing his throat – Francesca USA

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

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/

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