Just wanted to share something unexpected that has happened to me. For several years I had trouble swallowing food.  I had gastroscopies to eliminate a diagnosis of gastro-oesophageal reflux disease (GORD) and Eosinophilic Esophagitis (EOE) but everything was completely normal.  My doctors all assumed it was an anxiety symptom, even though I didn't feel anxious about anything other than having difficulty swallowing food.  I saw a psychologist who helped me accept it so I just stopped being particularly bothered by it. Friends just figured I was a slow eater.

I started the failsafe diet in August last year on the advice of my dietician. I had a bout of gastro in late 2017 that gave me awful digestive complaints, and low fodmap hadn't helped. Gluten free helped some but not enough, so we decided to give this one a shot.

Now I have no trouble swallowing food. It wasn't a sudden change, but at some point it just started gradually improving and now it's completely normal. Go figure.

I had assumed my doctors were right about the anxiety, even though I wasn't anxious. Only my husband was sceptical, and he was right.

I've realised something important about myself: when in doubt about the cause of anything weird going on in my body, it's probably food - Thea

When I’m anxious I definitely have more problems with swallowing, so staying strictly amine free  helps a whole chain of reactions. It took me many years to realise how much more anxious I feel when I have gone off-plan with amines in particular. I knew they gave me abdominal migraines, but didn’t make the anxiety link for ages – Viv

I have been doing this diet for about 5 months now for my 4 year old son. It has changed our lives – Sharl

Meltdowns, hitting, biting, kicking and ADHD behaviour disappeared when we changed what we ate – Jane

We didn’t even eliminate dairy and in a few weeks he became calm and rational (aged almost 3 at the time) quite quickly. He failed all challenges but we’ve later discovered that amines is the really big trigger, and probably additives – Mary

My good news story: my twins were deemed "exquisitively sensitive" by RPAH allergy clinic at age 10 months. They are now 24 years old, tall and healthy and eat what they like - most of the time. They were failsafe for many years. No wheat, dairy, sals. or amines. ?? – Lena

I just went to my GP who said food intolerances don’t have any effect on sleep and don’t cause insomnia. What are other people’s experiences with food intolerance and insomnia? - Mika

ratsleep

Salicylates

Salicylates makes my 4 yo restless at bedtime and can wake frequently when his bucket is full - Lisa

I'm sensitive to salicylates, amines and to a lesser extent glutamates. I definitely experienced insomnia, along with my main symptom eczema. Since being on the RPAH Elimination Diet I have slept so much better - Kate

Both salicylates and amines badly affect my sleep - Anne

Definitely for me when I have salicylates and artificial colours. Feeling extremely restless and unable to sleep is my biggest complaint. I’ve also learnt that my sons terrible sleeping as an infant and preschoolers was also caused by salicylates - Clare

Salicylates, glutamates and artificial colours and anything listed as causing hyperactivity and sleeplessness. I include inhaled salicylates such as Lush bath products – Ruth

Insomnia is definitely a side effect...my head just 'runs' after a meal of sals....can't settle or sleep....then 'die' for a few hours....and then wake...wide awake for a while...and can then usually doze off again....but usually wake unrefreshed!?? - Jan

Salicylates really trigger my insomnia - Kylie

Amines

My son’s sleep is far worse when reacting. I am definitely worse with certain amines and glutamates - Becky

I experience complete insomnia from amines – Sarah

Amines definitely give me insomnia – Maria

I've had insomnia my whole life. Doing the RPAH diet I realised it was amines that were keeping me up - Eve

Amines for me. I can handle GPs not knowing about food intolerances but I get very frustrated when they give incorrect information ? – Jessica

Amines for me! On the challenges I confirmed that for me. GP, family and friends don’t believe me either- but I know my body and every time I’ve tested amines I’ve had this reaction – Dannie

I have found amines to affect me sleeping, I get headaches and feel sleepy then as soon as I lay down to sleep my eyes ping open and I can't relax my brain... like i have had 20 coffees washed down with some redbull – Jackie

Other

If a food affects us, it always shows up as insomnia, for both of us. For example, Vanilla flavouring is a big one for me. If I was to eat vanilla ice cream, I would be awake all night!! - Mel

MSG does it for me, insomnia and restless legs like crazy - Hanna.

One of food’s main side effects for me is insomnia - Anne

If I eat soy I get insomnia - Susan

Preservatives keep me awake all night! Sometimes in hidden things like plain ice cream when out! - Mary

It’s the vanilla and milk that does it for me!! - Maggie

Insomnia is my top of the list reaction but since low chemical 14 weeks I’m getting sleep like I’ve never had and although not figured a direct cause I can see patterns emerging and when my bucket is filling up...I’m excited to report that I’ve had a block of 6 and then 7 NIGHTS SLEEP IN A ROW!!! – Helen

See the science in this factsheet on sleep disturbance and insomnia, a blog on insomnia in adults from Sue Dengate and many more reports from people

I think mine was caused through eating kefir yoghurt. I watched a programme about kefir and it said it was the best thing for gut issues. I didn't realise at first what was causing my problems so continued eating it for a month. I got worse so l googled found it is really high in histamines. I wish I'd never heard of it. I was living a normal life before that on the fodmap diet (thanks to Ann for asking this question).

sue30small

Some comments organised by common responses:

Being a female – ageing, pregnancy and menopause

It's a funny coincidence we are all women replying, maybe it's hormonal. Stress effects hormones (cortisol) – Rita

Always been sensitive to some food items with belly issues but after my second pregnancy it intensified as well as moods, hives and all over aches. I think stress is a huge factor – Tracy

Flu while pregnant (combined with oral steroids etc to treat asthma from flu probably didn't help) -Anna

Puberty and pregnancy hormones were definitely an influence in mine becoming more severe - Amy

Noticed a dairy intolerance after giving birth to first child, then was diagnosed with hypothyroidism, noticed a gluten intolerance after 3rd child and then the intolerances seemed to grow from there! Plus stress and a pituitary tumour! – Carol

Always had dairy intolerance but got more after I got bad reflux after my second pregnancy, then got giardia which attacked my stomach even more – Gill

Menopause - changes our immune system – Sally

I agree with that, I call it middle age sensitivity as a catch - all ? – Anne

Perimenopause brought it to a head. I got prescribed some medication that gave me daily migraines, I was taking asprin for my migraines and headaches for years without realising it was salicylates. I’ve have had chemical sensitivity for many years, just been putting up with the symptoms – Ali

Always had it but didn’t realise but as I got older and obviously built up in my system I got worse and finally went to a specialist I found out more – Lisa

Stress

It hit me in my late 30s and yes stress definitely a factor in the previous 30 years ...I am now in my early 50’s and have no intolerances apart from gluten intolerance (after 10 yrs of restricted diet) so it is possible to switch it back ? - Teresa

I believe for me it was a perfect storm of stress and over exposure when I opened my cafe and was handling massive amounts of food - Sue

Stress (20 years of it!) I never even knew what food allergy and intolerance was, so like Ann I'm glad that it hit me later in my life (my 50's) though kind of cruel also as it's happened after breaking free from the situation that caused the stress :/ - Lisa

Anti-inflammatory drugs put me over the top of a lifetime of things wrong with me, at the age of 50. But yes probably stress based – Mary

I'm thinking mine is stress and anxiety with 2 pregnancies just tipping me over the edge - Penny

Heredity was a factor, but changing hormones and stress really ramped things up - Sally Anne

Stress was a massive trigger for me. I went through marriage breakdown, loss of job, having to sell a house and raising my son – Michel

Always had it (genetic issue or hereditary)

Mast cell activation disorder and Ehlers- Danlos Syndromes (a group of inherited disorders that mostly affect the skin, joints and blood vessels) - Kay

I’ve always had it. Genetics - Ruth

For me it is Sjögren’s syndrome (an immune system disorder characterised by dry eyes and dry mouth, often occurring with other such disorders, such as rheumatoid arthritis and lupus) - Clare

Always had it from birth – Michele

Always have been intolerant of dairy wheat carrot. Never got other grains and preservatives until I was 16 years old and then very ill. I have had 40 years of experience and finally found failsafe and find I had sorted out most of my intolerance – Daisy

Gastro-intestinal and other illness

For me it was glandular fever - Jessica

I think I've always had a mild form, like so mild that I didn't really need to do anything about it, but after a bout of gastro just over two years ago, things went bonkers – Terri

Antibiotics

6 months of antibiotics and 3-4 years of bulimia – Nan

Mine was caused by 13 years of taking daily antibiotics for a lung condition. I’ve been intolerant of salicylates for over 20 years now ? So used to eating boring safe foods but happy to stay reaction free. Although I still get caught out every now and then - Jan

Clindamycin, 5 weeks of it for an infection. ? –Linda

Other

I didn't know I had intolerances until I was adult, but when I discovered that I, my young son and husband were healthier and happier (no bad aggressive or depressive moods) when we stopped eating certain foods and learnt more about intolerances, I realised I had always had them, and was the reason I had illnesses and used to vomit, and have tummy pain sometimes as a baby and child – May

I think I have always had issues with food but I didn't realise my symptoms were being caused by food. Then I went to a new naturopath who made me very ill from something she gave me. I was doing gut healing to try to recover from that, that's when I got extremely ill - Sharyn

Thyroid disorder for me – Judy

We started adding lots of high antioxidant foods, little did we know we were actually just loading our body full of histamines..that's when our rashes and hives started...damn that kefir Ann!! – Rebecca

I think I’ve always had it but it jumped to the foreground in 2016 when I did the I Quit Sugar program and was eating heaps of vegetables, using olive oil, coconut oil and spices. I started getting hives every day after I ate anything and reactions were so bad they became almost instantaneous. I would cut up capsicum for a meal and within 5 mins I had red hands and forearms down to the elbow. I’d always suspected perfumes so had avoided all fragrances in my skin care, body wash, shampoo/conditioner and laundry/cleaning stuff but didn’t know about foods causing it until it was mentioned by a Dermatologist that I was seeing in 2017 for an autoimmune diagnosis. From the time it started til I got it under control I had had the hives for close to 8 months continuously and a year sporadically as I had had some reactions of hives months earlier from new clothing - Joan

A slow leaking shower that created mould in my built in wardrobe - I wasn’t aware of it till I discovered a hat covered in it. I was breathing in the toxins for months I think – Mary

I was exposed to chemicals and toxins in the 1980s at the Steelworks which affected my gut bacteria, and then the intolerances started. I’ve been treated at the Centre For Digestive Diseases in Sydney and I'm finally turning things around, the improvement I've seen has been stunning - Wayne

Note that many come to the elimination for their children, reacting strongly to high levels in small bodies, and then by doing the elimination with their child discover that their lifelong symptoms disappear and that they have always had intolerances themselves that they were unaware of - Tracy

My Nan was the first person I knew who had a food intolerance to salicylates, identified in 1996. Then 10 years later I learnt that our friend’s son had the same issue and used failsafe.

THEN last year, we discovered our 3.5 year old had the same issue. He had always had a rash that came and went that we could never explain. He was also a very active kid but that didn’t seem overly unusual. However in August last year we started to notice a significant change in his behaviour - to the point that we couldn’t ignore how extreme his tantrums would become. Completely out of character. He was also having blood noses and a range of other symptoms that started to worry us. After racking my brain the only change I could think of was that for the past few weeks he had been eating a ridiculous amount of strawberries, as much as a punnet a day at times. With no other explanation, feeling at a loss, I began researching strawberries only to learn they were very high in salicylates- and so began our journey. Almost 12 months on we are still learning but the improvements have been astronomical! We have had great success with this diet for my son ? - Becky

In response to this blog from Sue Dengate

I cannot remember the last time I or my children were seriously ill with a cold or flu (touch wood!). I went failsafe with my children about 7 years ago, and although we're not strict anymore we certainly avoid as many chemicals as we can. Even my "hayfever" has disappeared – Erica

My head is so much clearer now. I’ve had constant Rhinitis my whole life. Nothing ever worked. Just a few days Failsafe and it cleared up. It is one of the first symptoms to appear if I’m not strict. If I eat mod-high sals too regularly I start to wheeze and end up so breathless and coughing and way too much mucous – Rose

This is very true for me. If I stay low sals I never get sick at all! – Rebecca

Less hay fever too due to lower amines I suspect - Carol

My son used to have an average of 35 days off school a year but now it's one or two. So thankful to the Dengates - Ann

I haven't had the flu or a cold since 1988/1989. I've only had Histamine Intolerance since about 2006 (realized about 6 months ago that despite the doctor telling me it was no big deal, that it indeed is a big deal) & Salicylate Intolerance for about 6 months. Failsafe about the same. But, it makes sense since your body is no longer struggling to survive amid all the stuff you were feeding it that make it sick.... - Ella

I have to say my 2 year old hasn’t been sick since going on the diet! She’s in daycare and was ALWAYS sick prior...it is summer mind you but I think there is something in this! - Jane

I used to suffer from chest infections requiring antibiotics at least four times a year. Since finding out my intolerances, (to sals, dairy, soy and sulfite preservatives) I haven't needed antibiotics in a year and a half. Although I did get pneumonia last year, I consider that to be an exception to rule – Jan

I used to catch every cold there was, much much better these days and better recovery times - Sara

A local contact was a lifesaver at the time when I discovered failsafe, and someone on the other end of the phone was really helpful, even just to de-stress to - Robin

Thank you for making me learn how to cook, though stressful at first I actually learned to love it, and still make most things from scratch even now :). We continue to follow a lot of the Failsafe guidelines, as my husband gets migraines from too many amines - which we learned through the Failsafe journey also and I have quite a few friends who have found answers to their own issues through witnessing our 15 year journey. Thanks for your life changing contribution to families everywhere - Jenny

As a local contact we normally had a flurry of emails/phone calls where I offer support/know how, and just listen to their story, which has often remained unheard, as you know.  These days I signpost them to join the active Failsafe facebook group for the nitty-gritty.  However I think the very fact that through Failsafe our family found our triggers in detail, and moved on to a relatively normal life (!) is tremendously encouraging for them.  I can talk about the practicalities of running a special diet, which I have done for 20 years, common mistakes, handy tips, and offer them the knowledge that it will not always be this hard.  Maybe most of all I shower them with my joy and gratitude that we found the diet, and what a difference it made to my family, and that seems to give hope and boosts determination. Thank you both for all the dedicated, caring and intelligent work that you guys have put into to changing umpteen families' lives - Jan UK

My personal experience with food additives began 19 years ago with Sue’s article called Restless babies as I had one who was about 5 months old. So I started the elimination diet. The change in her was amazing. I still thank goodness for that article, thank you both so much for all you have done for food intolerance information over such a long time - Cath

Thanks for the amazing advocacy and support you offer to people and the amazing difference it makes. Our family is forever thankful for the FAILSAFE diet. For a family history of eczema, I had anticipated all 3 of my children suffering with it. Two did, before we started the diet, and the third child never got it (suspect this was because she was eating FAILSAFE from 18 months old). My own seasonal eczema has not returned since doing the FAILSAFE diet, and keeping our exposure to Salicylates lower than our previous amounts. And my children have now been eczema free for 7 years. It is truly incredible to realise we could have had a very different story, one of continuing disease, medication, and frustration - Nyssa

I don’t have a formal diagnosis, but my son is ADHD & autistic, I believe he has my genetics. I react to amines with emotional outbursts quite strongly, plus flavour & colours - Amy

I am very interested in answers to this as my partner has ADHD and after using the diet for my son I am now noticing some definite reactions (exacerbated stress, emotional outbursts) to numbers, colours etc. He is yet to believe me though - Ida

Using failsafe has had a massive impact on my depression, my mood swings, and my focus capabilities. I was never diagnosed with ADHD but seem to have many of the symptoms that I can manage with Failsafe diet. Amines are the main culprit - Anna

I have ADHD and while FS doesn’t completely ‘cure it’, my symptoms are much better and more manageable. I’m very similar to those above - amines make my ADHD, emotions, etc. much worse - Jenny

I’ve had a patient I was seeing for gut issues who also had ADHD. She had an improvement & was able to reduce medication – Jo (a dietitian)

Amines are disasters for me - I’m 45 and was diagnosed when I was 8. Diet has saved my life and I have two sons with adhd and it worked for them and also gave info to a friend whose son and husband had it too and they found it helped. I have been cutting amines from my diet for thirty years now and find when I stray from a proper diet all the old symptoms come back and mood swings and the ability to focus are really altered. Thanks to failsafe I can manage - Lee

I'm 52, love my ADHD superpower, better since I'm low Sals though not so much irritation and headaches.  Sounds funny to most but since I changed my words and the way I look being ADHD, I've overcome so much.  Enjoy have fun, run be free – Sue

I did the elimination diet before being diagnosed with ADHD. I am sensitive to salicylates, amines, artificial colours, preservatives and antioxidants, mostly with behavioral reactions. Colours I react violently. The diet helped a lot, but the ADHD diagnosis and medication filled in the gaps and cleared the rest of the brain fog - Jay

Yes. I am a big responder to salicylates, I can tolerate a very little bit, but if I have too many my brain goes whack, and jumps everywhere, my blood sugars turn into reactive hypoglycemia and I can't think straight. I take venlafaxine as well because it helps both my depression and adhd. However it's staying away from gluten and salicylates that help me stay sane and keep my sugars and thought processes stable - Tiah

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Just wanting to share Mr 4 is now 3 weeks with no antihistamine. After using 15ml of phenergan every night prior to starting this diet, it seems like a dream come true. So excited to be starting the slow journey to hopefully liberalize his diet. I never thought it would happen. It took 3-4 months for my super responder to reach baseline so hang in there if it's taking you longer than you first thought. So grateful we have found our miracle cure. So thankful for everyone's support from the Sue Dengate facebook group – Charmaine

Does anyone have urine infection like symptoms after having salicylates... I don’t actually have a UTI (urinary tract infection), it just feels like it sometimes after having sals??? - Rose

Yes! I get like an urgency to pee even when it's completely empty. Especially at night - Alex

Yes! But when I am careful and watch my SALS, the urgency and need lessens. Took me a while to figure it all out....I'm a slow learner. :) - Clare|

It affects our 3yo in this way. He overflows nappies at night time & often wakes very distressed when he needs to pee overnight telling us it hurts - Connie

My 4.5 year old daughter has a problem with amines, she started wetting her pants at about 2.5 years old (after being dry and self toilet trained for 6 months), it got so bad we were up at the hospital at one point as she was urgently urinating every 30-45 mins for a few days, it was horrible - Melinda see full story [1555]

It’s very frustrating, I went to the doctors for a good 4 years and kept being turned away and told it was IBS in the end I thought I was going insane! – Jan

Clear salicylates reaction here. When my dd started school (and had strawberries and watermelon in her lunch box) she started wetting her pants. Once going failsafe this stopped. She has now been failsafe for years and only has minor issues when filling her bucket. I discovered I was sals sensitive when I went low salicylate to support someone else then had 2 small slices of watermelon. I felt like I had a UTI and had to pee every 30 mins all day. I also stick to within my limits mostly - my bucket is bigger than my dds - Tanya

This is what happens to me but never turning into an actual UTI - Helen

After amines... frequency and urgency. Same for husband and 3yo – Edith

Yes, every time! Took me a while to figure it out. I get a burning sensation in my bladder, when I try to urinate, nothing happens! - Robin

When my son was very sensitive, one piece of carrot or using any toothpaste would make him wet the bed at night – Anne

Antioxidants were worst here - Tracy

I used to get that when I ate a diet high in sals. Don’t have a problem now I watch my sal intake strictly ? - Jen

Yes!!! Omg and my youngest all the time..... It's hell if we aren't strict - Terry

I’ve seen this a lot - an irritable bladder or interstitial cystitis - dietitian

Yep, three of us in this house react like that with sals (and certain flavour additives too) – Amy

My 4.5 year old daughter has a problem with amines, she started wetting her pants at about 2.5 years old (after being dry and self toilet trained for 6 months without accidents), it got so bad we were up at the hospital at one point as she was urgently urinating every 30-45 mins for a few days, it was horrible.

I went to Drs numerous times about it over a year, sometimes we would be in the Drs office and her urgency to urinate was so great that we had to duck out to use the toilet mid-appointment, then after the appointment we would get to the car and she would have to urgently go again but going back to the clinic was too far for her to hold it so she would have to wee in a garden next to the car. Our Dr put it down to her being constipated and it pushing on her bladder and kept telling me kids don't need to be toilet trained until they are 4, just keep training her, even though I knew this was not the problem, she knew how to go to the toilet and we did have weeks when she was dry and weeks when she wasn't so I didn't think it was a "lazy" issue. I tried to get a referral numerous times to our local hospital but I was told we have to wait until after she is 4 because it isn't classed as a problem until then. Daycare also mentioned to me that they way she drank and urinated looked similar to a child they had that had diabetes but this was ruled out.

She always had long bouts of screaming since she was a baby, along with what felt like constant nappy rash. Some time after she was 2 she started getting hives on her face when she had soy sauce (sushi is her favourite food and we would have it a few times a month). If she got the sauce on her fingers and scratched herself she would then have hives where her fingers had touched. I had gone to numerous Drs and a pediatrician concerned about her screaming sessions and the only thing that came up in the tests was low iron. I also asked the Dr about the soy sauce and it giving her hives and I was told if it doesn't bother her, keep giving it to her, however the tantrums were so frequent we didn't think it was bothering her and I trusted the Dr's advice.

Then when she was 3.5 years old we had had a few weeks break from eating sushi and then she ate some with soy sauce. She then got tired shortly after, hopped into bed and wanted to go to sleep, she got hives around her mouth. It was like a switch had gone on where she was then defiant and had to say no to everything that was asked of her, she was very angry and our little girl even spat at me. She then started urinating very frequently and was busting to go, this lasted a few days and I also noticed she was mixing some of her words up like she was confused. She wasn't back to her normal self until about 1.5-2 weeks later. Finally with all these problem symptoms happening at once after we had had a bit of a good run, the penny dropped that it was the food doing this to her.

She has since been tested for a skin prick soy allergy which came back negative and the nurse at the allergy clinic suggested an intolerance to amines. I tested her skin with 4 different types of soy sauce to see if it was ribo rash causing this (635 flavour enhancer) but she got hives from all four sauces even the one with very simple ingredients in it.

She still has sushi but without the soy sauce and since we cut the out of her diet she hasn't wet her pants, she hasn't had urine urgency at home or at daycare and her long screaming fits reduced dramatically from a few times a month to about 2 a year. Her iron levels are also at a normal level. I have since pointed out to the medical professionals we saw that it was the soy sauce that was the culprit and I'd read an article that said it can irritate the bladder however none of them had heard of such a thing. I do wish we had gotten the proper help earlier on. I look back at how often she screamed, how irritated she must have been and the hours we spent trying to calm her down, that all cleared up by simply removing soy sauce and reducing high amine foods.

Here is a photo of her face after having soy sauce and her lower back after it dripped on her fingers and she scratched herself - Melinda

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Q: Is it sensible for those with food intolerances to avoid certain career paths?

Some helpful answers, interestingly mostly perfume/fume sensitivities which go with food intolerance:

The hospitality industry isn’t good to work in especially if you are in the kitchen with all the foods and have to taste what you make. Also the cleaning agents aren't great either. And being a barista is bad too as your skin absorbs the coffee you work with.  The only good occupation I've found is being a stay at home mum but that won’t last forever - Laura

Cleaning was hard, but gloves and good quality paint mask helped immensely - Teresa

I am an artist and art teacher. I make sure we have good ventilation in the classroom and insist on students using the non-toxic /smell free versions of paint and solvents while in my classroom. But it can be hard - there are some days when I am overloaded with chemicals. I gave up oil painting but now work with sculpture, watercolour etc. Oil painting is actually doable with good ventilation and good quality smell-free chemicals. Just have to be careful to change clothes and shower properly after each painting session!- Yen

I work retail and it can be difficult at times. I have managed ok but there are certain things I can’t do at work like cleaning as the chemicals cause bad reactions on my skin, I can’t work in the fresh food departments because of chemicals again but also the use of gloves irritates my skin and constant hand washing with the hand soap at work causes severe dry skin and a rash. I also have difficulty with colleagues and customers who wear too much perfume/fragrances deodorants and deal with it as best I can. It’s hard some days especially if I’ve already had a reaction to a food work just makes it harder but I’m getting better on that front so can deal with the other reactions better as well – Joanna

I have quite a unique job. I am an accommodation worker and look after 31 units and rooms onsite so am in the office half the time and waking around the building at other times. I tackled my workplace and asked for reasonable adjustments to be made - basically asking that colleagues do not wear fragrances and changed my desk to more of a corner area to avoid passing people all the time as they still have to wear deodorants. I have to do weekly room inspections which can sometimes set me off if a resident has just cleaned that day or has any of those plug ins actively running or the new diffuser things. I wear a mini air purifier all the time at work and bought good quality rechargeable batteries and charger for my desk so that I have a constant supply of batteries. It is doable. If a person forgets and wears something strong I can use a computer in a meeting room away from the office or go to another branch where they sit me away from others. It took a few years for this to occur though but as soon as I mentioned MCS is basically recognised as a disability my boss and the organisation decided it wasn’t worth taking a risk from a health and safety perspective – Sarah

I am a chemist and I’m hoping to move into more measurement and calculations roles rather than synthetic chemistry (so many amines and some salicylates too). At the moment I’m just really careful with wearing gloves and working in fumehoods, and I bring my own soap! - Jen

I have been a nurse for 30 years & over the last couple years have started getting migraines from the hand washing chemicals-the basin washing is bad enough but now u r expected to use the hand gels 100s of times per day. Looking for alternate employment after a break being a carer for my Mum. Even research recruiting which I have done in the past is a no go due to the severity of my reactions to even small amounts of hand washing per day. I may go into working with the disabled as I can take my own soap - Jenny

Disability Support worker in a group home.... hand soap, spray deodorants used on clients , chemical spray deodorisers, aromatherapy diffusers, bug sprays....have asked for support from other workers, rarely get it! - Carol

Baking and cooking were my hobbies and now I can't event do new recipes for other people cause I can't taste it, couldn't imagine being a chef - Deb

I had to quit my art course at TAFE because the paint fumes were too much for me, but on the other hand I can use acrylic paints without too much issue. Art type stuff there’s a lot of fumes but if you wanted to pursue art yourself you can figure out what works for you. I did cake decorating for a while but gave it up as a career option...I love it and I’m good at it, but people kept ordering chocolate mud cake and I couldn’t stand having the house full of chocolate cake smells all the time! And having to melt and temper chocolate was torture. I would certainly never consider a career in hairdressing or candle making or perfume sales...if I’m going to be sick from salicylates I’d rather be eating fruit! But if it’s your passion then it’s a matter of seeing if you can find a balance that works for you. My friend has her own hairdresser studio in her backyard for example...that sort of setup would hugely reduce the amount of fumes, and you could get fresh air through as well - Ruth

I have quite severe food intolerances, I coped as a theatre nurse for 20yrs, now I can’t cope with the hand wash & diathermy smoke - Kate

I work in a small office and love it. We only have 9 staff and they understand my sensitivities but not always easy to find a job like that – Lea

I worked in pharmacy as a teenager. Couldn’t stand the soap aisle. Went farming and hay fever was awful issue! The supermarket aisle of soap powders is horrendously stinky. The pest control aisle of garden centre or hardware store ugh! Paint fumes, new cars another no go. Big malls or big corporations with automatic “air fresheners” or “ bug controls sprays” may not be avoidable either. So many traps out there. A job in fresh air at the seaside maybe? - Chris

I'm a nurse I was healthy when I started but it's a nightmare now...exposure to multiple strong perfumes, aerosols, cleaning products, smoke etc. I have migraines and asthma too and it's awful for that as well noisy, bright lights etc - Peta

Aircon in the office was nearly always a problem for me so that would be limiting if you couldn't manage it - Beth

I’m a primary teacher. It’s quite ok because I have a fair amount of control over my work environment. I can tell the students not to wear any spray on deodorants or perfumes. I’ve had one issue with super strong smelling laundry detergent or fabric softener on a child’s uniform. Also some colleagues I’ve had to sit in meetings with after school have strong perfume. I have asked them not to wear it but sometimes they forget. I can choose to open or close the doors and windows and whether to turn on aircon or not. I bring in my own Norwex cloths and have children clean desks with those instead of smelly chemical cleaners. I also use them on the whiteboard instead of the strong smelling whiteboard cleaner. My worst day was a whole day of professional development in a room that smelt very strongly of a chemical like whiteboard cleaner. I had a migraine by the end of the day - Mary

I am sensitive to fluorescent lights. They give me sever migraines and make me fall asleep or at the very least give me an extremely foggy head and make it impossible to concentrate. I have found that if there is enough natural light in the room it’s ok - Lee

Being in public is unsafe enough for me to experience negative effects e.g. reactions to fragrances; so I'd think being around a concentrated lot of triggering artificial chemicals, as in a nail salon, would be still more immediately problematic.  I work across my company's clinic and within the client's home, as an intensive therapist for a child with ASD. The triggers I can't control are synthetic fragrances used in the rooms and by other staff/clients, cleaning products, and tobacco smoke. Masks can help a bit, but my eyes are still exposed and I don't use the mask when with my child. I should see if I can request the client from refraining from smoking or wearing perfume around me, but I'm a bit nervous to do that still! The gym is the worst place for me, as most people decide to add strong, often synthetic, fragrances and it's just impossible to get through a workout with a mask on! – Mitha

 

Finding out about this diet on the internet literally saved my life – Sharyn

Thanks so much for adding me to the dietitian registry.  I have seen profound results with several of my clients.  It's quite eye-opening for sure!! -  a dietitian

We have been doing this diet about 12 weeks or so. It has worked wonders for my son. It has certainly been life changing. He has gone from being covered in a hive like rash every day of his life, to just having a bit of eczema – Charmaine

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I just wanted to put it out there that I think this group is absolutely incredible. It is filled with such amazing and supportive people who are all genuinely trying to help each other. This group has helped me and my son so much. It's so insanely wonderful having expert advice at your fingertips 24/7 and people who truly understand what you are going through. I am finding it hard to even imagine how I was coping 3 months ago prior to joining this group. It's been totally life changing. I feel like I have this whole team of people who I have never met befriending me and helping me through this painfully difficult journey, when previously I felt basically totally alone with lots of friends, but nobody who actually understood anything we were dealing with – Sharl

Miss 2 and I have been failsafe for about 18 months now, and my 15 yo has chosen to go failsafe in the last month. We have all seen amazing changes, even after just a month for the 15 year old the changes are noticeable - Sara

My 3yo self harmed, hair pulling, biting her own fingers, kicking, screaming prior to a change in diet. Two weeks after changing her diet we had a different child and have never seen that again. She is now nearly 5 :) – Jan

About the DVD: six years ago this movie changed our life. My child is the calm, confident, wonderful child she is because the fog cleared and she was able to look at the world more calmly. We have had our setbacks, but it is easy to pin point now and we fix it up. A few weeks of “coming down” and she is back to herself. She is 10 now and can feel the changes in herself and makes much better choices when I am not around. Eternally grateful – Mel

My girl without a diagnosis reacts terribly to amines.  She’s angry, yells, can’t listen, so we keep those out and limit the other stuff.  We started failsafe journey for my boy who was on the cusp of diagnosis (did eventually get the diagnosis) of ASD and ADHD but put both children on it.  Unfortunately we did not see a difference with the child who had a diagnosis but the other one certainly improved even though I just assumed her sometimes ‘angry and irritable’ days was ‘normal’. 

We now avoid amines, limit the salicylates and the fake stuff and she is great.  She can actually feel when her body is ‘feeling not right’ from having stuff and because of this she actually chooses not to – Karyn

Diet change has had amazing results without formal diagnosis. I found Sue Dengate online when I put in symptoms and stumbled across a list of foods that contained salicylates and behaviours that can result from intolerance. It was a total match for my son. He changed within 48 hours once I removed certain foods.  He's still presents with some ASD behaviours etc. but those relating to salicylate intolerance are managed with diet change.

He was hearing voices. That's what made me very worried, as he was only primary school aged. He's in high school now. The change was dramatic at the time. I was so happy when I found a solution and an explanation. I'd never heard of salicylate intolerance before that – Sarah

Has anyone else experienced pulsatile tinnitus from salicylates? I’m doing my sals challenge at the moment (started last night- so not even 24 hours in) and today my right ear is experiencing pulsatile tinnitus intermittently for the last 5 hours after eating high sals foods. It’s really irritating. I constantly feel like I have a blocked ear (which I don’t think I do). There’s a lot of info about normal tinnitus on here, but curious about the pulsatile kind in particular.

Update one week later: After about 48 hours it went away- but slowly over the few days. Since cutting sals back out I’ve had no more of it at all! – Emma

(Pulsatile tinnitus (PT) is a symptom that affects nearly five million Americans. The sensation of hearing a rhythmic noise, such as a heartbeat, swooshing or whooshing, from no external source, is, at best, a little unsettling; for many, the near constant sound exceeds annoyance and becomes completely debilitating - https://radiology.ucsf.edu/pulsatile-tinnitus)

Headaches, blocked nose, runny nose, itchy all over but especially in throat/ears, foggy brain, and just feeling generally exhausted and unhappy – Renae

For me a naturopath suggested it when I was dealing with constant hay fever type symptoms and asthma about 6 years ago. Life got in the way and I never did it. Am now doing it because of my 3mo and have my 3yo doing it too for behaviour and gut issues. It's fixed up my geographic tongue and associated pain after eating - Penny

Night wakes, length of sleep and time to get to sleep, general irritability and crying while having steady weight gain and a healthy appetite and appearance for an infant - Celine

Migraines and brain fog are my main symptoms. Those two overwhelm anything else - Deb

Skin issues, gut issues, muscle aches, asthma - Ashlee

Daily migraines – Elise

I was originally sent to the immunologist because I wanted to find out what was making me always itchy. He then asked me a gazillion questions 'have you ever had....', and I kept going 'yes', 'yes', 'yes', 'yes'. I was causing me so many issues, that I had been going to the doctor about for years. I couldn't believe how much better I felt (after the horrid withdrawal symptoms) after about 6 weeks - Wendy

Bloating, gas, constipation or diarrhoea. Headaches - Kara

Angioedema, hives, joint pain, nosebleeds, mouth ulcers, rhinitis, asthma attacks, throat swelling, fevers, and night sweats. Was referred to anaphylaxis clinic and diagnosed as salicylate sensitivity. Decided to do this diet as recommended to me by other sufferers as most accurate - Petrie

I had migraines, dizziness, nausea, dry eyes, swollen glands, arthritis, asthma, clogged ears, foggy headed feeling and fatigue. These symptoms would come n go. I knew I was allergic to aspirin for years n my dr told me to avoid wine. That's it. When I discovered that salicylates were in food, 30 years later, I gave up all foods with moderate to very high sals. 2 days later my symptoms went away. And I surprisingly didn’t suffer withdrawal symptoms like a lot of other people - Joan

Chronic hives – Charmaine

My 11yo daughter was born super sensitive. I knew there was something not right from the 1st week of her being home.

After going from doctor to doctor, when my daughter was 6mths old we finally found Dr Velencia Soutter. Straight away she put us both on the elimination diet and gluten and dairy free. I was determined to continue breastfeeding. After a month on the diet with still no change, Velencia told me to stop solids for my baby and had me only eating chicken, rice, lettuce and potato. Like magic my baby stopped being sick. We spent the next 5 years working out exactly what my daughter was sensitive to. There was many a time I would be crying in Velencia’s office - I was restricted to 2 cook books, Sue Dengate’s Failsafe Cookbook and Velencia’s. I had to do private cooking lessons with a lady to help me learn how to cook. My daughter was anaphylactic to milk, eggs, nuts and allergic to so many other things. Velencia told me that my daughter would be too sensitive to go to school.

But after following everything that Velencia told me to do at age 3 there was a massive shift in my daughter’s allergies and she was no longer anaphylactic to eggs. We did an egg challenge in Velencia’s office and she passed. Then when she was 7, Velencia told us to move closer to the beach, she said “live right on it, send her to a school that is right next to the beach”. At this stage my daughter could only tolerate 2 days of school. We rented out our house and rented a house in Burleigh Heads. The change in our daughter was so much she could start eating carrot and apples and some moderate level foods. She went to school full time. At age 9 she outgrew her milk allergy and can eat so much more food I no longer had to make everything... we could buy  commercial food! Age 10 Velencia diagnosed her with autism and sent us off for a diagnosis of ASD level 2.

I now have an 11 year old daughter who goes to school full time and can eat and no longer has eczema, who now has a new quirky personality. Velencia changed our life. So many doctors didn’t know what to do with my daughter. Our GP phoned Velencia on her mobile every time he wanted to prescribe her medication or to get advice on how to treat her for some illness or another. I spent so much time in Velencia’s office not just for treatment of my daughter but for the amazing support she offered me - Kay

Dr Soutter told me of a young girl she met on one of her holidays who thanked her for saving her life. The girl (she said tween) told her about how she used to self harm and she tried to commit suicide a few times as well but she somehow found the RPA Hospital elimination diet and found that it was amines that were making her feel this way and now she is amine free she no longer wants to end her life. The doctor told me this because I was talking about the affect amines has on my little one. If she has amines she is depressed. She cries uncontrollably. My sister in law also has been battling depression and anxiety. She finally listened to me changed her diet and now she no longer wants to kill herself... amines can be a big issue for some people with depression - Kay

I ate rice crackers - I did not have my glasses on or I would have read the label. Yes! The crackers contained ribonucleotides - I have been aware of an allergy to MSG for about 40 years. That was seven months ago. After two doctors and two dermatologists I almost have the skin back on my legs. From my ankle to my knee I was covered in a rash that turned into keratoses (skin growths that some people develop as they age, can be benign or cancerous). In part my problem was exaggerated by my age - I am 85 in a few weeks.  My legs are much better but I have one lump that will have to be cut out - Molly, South Africa

(More about Ribo Rash caused by  ribonucleotide flavour enhancers E627, E631, E635)

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Total of 10 months into eliminations including 3 months after terminating the childcare centre. Currently tolerating mod salicylates. I was so sceptical going into this diet because she is already has lactose intolerance (full dairy elimination 6 months), fructose intolerance and egg/nuts/alcohol allergy. Until I was at my wit’s end and had to stop relying on potent topical corticosteroid to ease symptoms - her rash returned whenever I stopped using it. I went cold turkey to do strict elimination from RPAH book. When I had confidence I started doing challenges beginning with amines as I had that gut feeling that she is alright with amine. Then I challenged mod sals 2 months ago. We moved interstate so it was hard to find a dietitian. It's so worth it seeing her sleep through the night and we get back our quality sleep. I was able to make the people who don't believe in me, believe that elimination helps – Emma

10 weeks later: she is almost eczema free since the last photo with minor itch here and there whenever I started introducing her to higher sals food. Settles soon after I revert back to mod sals - E.

Story to share... thought it may help some (especially those with young kids)...

I was put on the RPAH diet in about 1983, at 6 or 7 years old... after 4-5 years of the worst case of eczema (Started after antibiotics at age 2) the docs had seen.

NOTHING was working, so a “totally crazy” approach was taken - this diet.

Up until this point, people would ask my mum if I was dying. Despite having a very healthy appetite, with the head to toe eczema and extreme skinniness, I did actually look like I was dying.

My version of the diet was incredibly strict - for what felt like a lifetime. My diet consisted of lamb, pears, lettuce and rice. I reacted to water, which was specially treated as well. 

Within weeks, I looked like a different person and began putting on weight.

I stayed on the diet for a few years - pretty strictly, but with more and more things added over time. I seem to recall the eczema was mostly gone by the time I was 10.

By age 12, I was basically ‘normal’ (although I’d developed a distinctly un-childlike preference for hyper healthy food).

The hardest part was being teased at school for my weird lunches. In the mid 80s, no one in a Tasmanian school was eating rice cakes with Nuttelex and maple syrup...

This diet probably saved my life. I have no idea how my mum stuck to it for so long, but I’m so thankful she did.

Now...

I’m considering the diet again - at 43 - for some symptoms that have appeared. I’ve spent the past few decades eating well - but eating anything I want, and I’ve realized I’m just too food sensitive to do that. Also, my two kids seem to have the same tendency for eczema and intolerances that I did.

So - if you can stick with it, it’s worth it! - Amanda

Just wanted to post about our journey on this diet. Have had my 4yo boy on the strict elimination diet for nearly two weeks now. I cried tears of joy last night as in the last few days (since deciding to also cut out gluten) he is a different child.

Last Friday screening tests through a psychologist (done by both myself and his day care) showed ADHD tendencies. His behaviour was so exhausting and stressful. Lots of aggression, hitting, screaming for apparently no reason, could not sit still for more than a few mins, defiant and destructive, no parenting strategy seemed to work although every now and then we would see glimpses of an affectionate, sweet boy, but always just for a few hours before our demon child would rear his ugly head again. But now he is calm, listens, is kind, thoughtful, and so so happy.

If he has some upset we are able to use parenting strategies to get him back in a good place, whereas before everything was always escalating. I hope this lasts and I’m not getting over excited too quickly. But this feels like a serious game changer for my family, I feel like I have my boy back ❤ I am keen to also see how this goes over time and if we reduce dairy or make the switch to A2 if we will see further improvements.

Update 2 weeks later: We have just done the salicylate challenge and noticed behaviour changes, nightmares every night, waking up early and grumpy, lots of silly behaviour as well as defiance. Back to failsafe diet today and tonight he was so much easier and happier and co-operative. Looking forward to finding out what the other challenges hold! - Vivienne

Sorbates made me so horribly moody. I felt depressed - Maria

It affects my sleep pattern if I have it a few days in a row,  but it is very delayed - Teresa

I had an immediate reaction  to challenge (more oral allergy type reaction - it burns my throat and I swear the spots in my hands have come from sorbates. I've just felt a bit rotten and wondered if it impacted me more than I realised, or whether it was just coincidence – Linda

See Food Intolerance Network factsheet on sorbates 200-203

I got my first migraine at 12 years old. Dr told me it would be hormonal and “get used to having them every month along with my period”.

It went on (more then once a month and getting worse over time) until I was 29. I was having a migraine last 6 days of pain followed by that “hang over” feeling for another 5 days and straight back into another migraine. They were worse every time and to the point it felt like I was having a stroke. My whole right side went limp; I couldn’t open my right eye.

I had MRI and lots of tests all came back fine. During this time I met with a dietitian for PCOS and insulin resistance. Mentioned to her about my migraines and she said “90% of her clients that were told it was hormonal actually had a food intolerance”.

I did the RPAH elimination diet and wouldn’t you believe I reacted within 3 minutes of having amines – Cathy

I have had awful migraines since four years old. I am 54 now. Probably every Friday I was in the sick bay at school. I had medication meant for adults! As I got older they continued but interestingly less once I left home. In my early thirties after my second child was born I had a migraine start with vision disturbance and that migraine didn’t go for four years. Everyday for four years, multiple drugs, multiple doctors, chronic fatigue set in, muscle and joint pain, hospital trips. Then a friend who had been to RPAH allergy clinic said to me, “all your favourite foods are high chemical foods..”. So, I started the elimination diet, went to RPAH and lo and behold, I am pretty much migraine free. If I am not strict I might get a headache or joint pain, palpitations and other symptoms. I react to everything, some things more than others. I might also have some treats fairly regularly now but I won’t ever knowingly have nitrates, nitrites, sulphites, glutamates or benzoates – Liz

I had a migraine every day for four weeks in a row and had cut back to part time work and reduced my commitments. Once I discovered the strict elimination diet, after the first three days I had the first 24hrs headache free in as long as I could remember and it was AMAZING. Now I’m following the strict diet and am almost completely migraine free. I’m going to do challenges to hone in to what is causing them: I used to just get migraines from sulfites and PMS but I seem to have gotten more sensitive since starting menopause. The diet sure has made life work again. It seems to have evened out my moods too. I was recently diagnosed bipolar and everything was going haywire with the hormones but now the up moods have settled a lot. I still have low moods but I’m managing much better I think. Also I had horrible hot flushes all the time and they’ve completely gone which is super cool – Nanci

Migraines were the main symptom that led to me going failsafe. I had them monthly for years, up to 2 weeks straight at a time, and nothing the doctors tried helped even a little bit. I have been FS for 12months now and migraine free for 12months. I have gotten headachy a few times over the last 12months, each time as reaction to eating the wrong thing – Ashley

See Food Intolerance Network factsheet on headaches and migraines

Among all the heartfelt congratulations some other responses:

I’m not surprised by the weight loss...when u cut out the food that’s hurting u, u lose the weight ...simple – Beck

I went failsafe too from daily headaches that more often than not lead to migraines. I lost 15kg and most of mine was from inflammation. I deflated like a puffer fish. And for the first time in 20 years I no longer get daily headaches – Sue

I too had migraines for decades and even daily for three years. It amazes me that neurologists don’t consider food – Marian

I lost a lot of weight going failsafe too. Did not expect it. I think my body was in the habit of demanding more food to 'buffer' against the things that caused problems. Even now, when I feel tummy trouble coming on, I can still reduce symptoms by eating some plain bread/chips. Would never have guessed this was a thing until after I lost weight – Pauline

I am also migraine free thanks to failsafe. Amines and 160b are the culprits for me. Thanks for sharing your story - Jude

I've found I've lost the extra weight I've gained over the years, since being failsafe. The reason for me is that one of my symptoms is increased appetite, often with sugar cravings. Without these symptoms, it's easier for me to regulate my diet to a suitable level - Rosemary

That's so brilliant! The diet totally changed our lives too - Pat

Such a positive story! What a fantastic outcome for you. I hope your experience inspires others to give the diet a try if they suspect food intolerances. I also found the diet life-changing - Sarah

See Food Intolerance Factsheet on weight loss

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I usually share meal ideas, but wanted to share a little on how going failsafe has benefited my life. This time last year, as you can see in the pics I was severely overweight. I was sick all the time, migraines that doctors couldn't find the solution for (every month for probably 10 years, sometimes just a couple of days at a time but a lot of the time they would last 2 weeks straight), IBS symptoms, asthma so bad I was on the nebulizer every half hour to an hour, frequent stomach ulcer attacks, over the last 20 odd years I would be up 20+ times a night to constantly pee and always just feeling blah. I had accepted all these things as just who I was, and actually didn't even realise how sick and tired I was, until I wasn't sick and tired anymore.

The other pics are of me today, 60kgs weight loss (have literally halved my weight), no longer use the nebulizer in fact I haven't even needed a single puff of ventolin since going failsafe or the constant courses of steroids, off all medication for stomach ulcers and migraines. I sleep through the night most nights (Well as good as you can sleep through with a toddler in the bed), I no longer need to race to the toilet often and the greatest part of all migraine free ?. I can actually count on 1 hand how many little headaches I have had in the last year and each one was as a result of eating the wrong thing. Now obviously the physical change is what everyone notices in me, and always asks how I lost the weight. Whilst I don't recommend failsafe as a weight loss solution, it has definitely played a big part in my overall journey. I didn't drop 60kgs just changing the food I was eating, I have worked very hard with daily exercise and learning portion control and getting into the habit of eating smaller portions but more frequently (I would usually only eat one meal a day but then eat a lot of munchies at night), I now eat 6 times a day, 3 meals plus 3 snacks. I wouldn't be able to exercise as I do if I wasn't feeling well or tired all the time. I wouldn't have stuck out the food changes if it hadn't changed my life in such a positive way.

A huge thanks you to Sue Dengate, who has literally changed my life. Thank you to each and everyone in the facebook group, the support, advice and ideas I get on here have been incredible, I don't know how many times I have been in the supermarket and been able to ask a question and get a response so quickly.

I hope my story can encourage others as others have encouraged me, and I will continue to share our meals to help others as I have been helped over the year seeing what others create – Sarah

I have multiple chemical and food intolerance, chronic fatigue syndrome and fibromyalgia. I've been on the low chemical diet for many, many years (I am 63) – it makes a huge difference to my fibromyalgia and also to CFS brain fog.
 
My diet is extremely limited but I can live with that - what is making my life ever more restricted is the fragrance/fumes problem. Even wearing a mask or scarf over my face I get ill on buses, in shops, at the movies etc. and I nearly always get ill when friends visit cos even if they’ve tried to be good, their clothes usually stink of fragrance from the detergents they use.
 
My oven died at xmas but there’s no way I’ll survive a new one, and the 2nd hand one I bought turned out to be faulty. When our sound system was stolen we bought a replacement which my husband kept turned on night and day in his office (as it needed to be warm for the components to outgas) and even after a year I couldn’t go near it.  I can no longer use any form of heating, but tolerate (with reduced function ie worsened fatigue, brain fog etc) a slow combustion stove which the manufacturer agreed not to paint, but which we need to burn each year for about 4 days with the house open and me locked away down the far end of the house before I can go anywhere near it. 
 
ONE YEAR LATER:

Last year you suggested I try a Wein air purifier, so I bought one and have been using it ever since. It makes a big difference, although if something smells very strong I have to hold the ioniser close to my nose or I still get sick. I don’t find it helpful when I’m outdoors among people or if a diesel car goes past, but my trusty scarf (making me look like a bandit) helps reduce my reaction in those situations.
 
I’m about to buy another air purifier so I can have one permanently in my bag. I’ll keep the other one in the house for when visitors come or if a neighbour starts up a chainsaw or leaf blower when all our windows are open. (Most of the time it’s fine only having one, but there’s been occasions when I’ve used it at home and forgotten to put it back in my bag, then gone out somewhere and needed it).
 
It’s really nice going to a play or travelling on a bus and not having to wear a scarf around my face – the purifier is so much less conspicuous!
 
Last year I was in the emergency department overnight for 8 hours, marooned on a bed while they investigated whether my temporary loss of vision was a mini stroke (it wasn’t) and there were smells coming at me thick and fast. The Wein helped me get through it – I do still get a bit sick when exposed continuously like that but it’s nowhere near as bad as it would be without the air purifier. Without it I would have had a bad headache, possibly a migraine, asthma, exhaustion, muscle weakness, pain throughout my body, gritty eyes, brain fog, and the following day would have been a write-off.
 
 The loss of vision turned out to be a different type of migraine to the ones I usually get. I’ve had regular migraines with aura for over 20 years – I usually get 3 or 4 a year. One of my triggers is chemical smells. I’ve only had one migraine since last November and I’m wondering if it could be because my body is less overloaded by scented triggers because I use the purifier so much.
 
Anyway, I just wanted to thank you. It’s been a brilliant addition to my life - Lesley

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Colours, flavours and preservatives make my son go nuts but his worst reaction ever was to some blue pain medication after he had his tonsils out - he grabbed a knife and started stabbing the sofa - Breanna

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Absolutely diet can help! My daughter had dreadful night terrors. I eliminated amines and bingo! No more horrifying nights ? - Sue

I regularly suffer from nightmares and night terrors when not eating failsafe. My screaming scares the pants off my partner. At least I don't snore, though...- Sarah

Night terrors are the reason we tried failsafe for my then 20mo. She went from 3-5/week (absolutely horrendous time for us we had been living like that since she was 8 mo) to none unless she eats non failsafe. Sals and amines cause it for her - Josie

My story is in the blog...stopped within a week after being dreadful and frequent. But... biggest trigger was antioxidants, and as she got older the reaction became sleepwalking instead – Tracy

Above in response to blog on Night Terrors

I have been through the RPA 10 years ago & a dietitian helped me through the diet (for eczema). This was very successful. I have salicylate, glutamate, nitrate & sulphite intolerances & have done pretty well for a long time. I don't try to deviate too much from my moderate salicylates. It's not worth it! 

I only wish I knew what I know now when I was much younger -  it would have saved years of suffering.

You guys are amazing & I only wish more people would listen when I tell them about the diet. Unfortunately, most people would rather pop pills than find out the real problem - Kerry

See Food Intolerance Network factsheet on Eczema

My male partner  (47) has suffered from medically diagnosed gout for three years and has tried many things; prescribed medication, a low lectin diet (as per the Plant Paradox book by Stephen Grundy), the prescribed medical low purine diet to no avail. His gout was in his foot/ankle and when it flared he could not even stand the bedsheet touching his foot.

I had done the failsafe diet for my daughter 20 years ago with success and I encouraged him to try failsafe. He undertook the failsafe diet as per the RPAH regime (no dietician). We only challenged salicylates, amines and glutamates as we do not eat artificial additives. He is gluten free and only has A2 milk (prior to failsafe as these foods suit him better). When we undertook the challenges he passed the salicylate challenge and failed miserably with amines and glutamates; both bringing on gout. He avoids all amines and glutamates and he is now gout free. – Susan

Mango (high in salicylates) gives me gout in 1 foot  … Really sux cos I have two huge mango trees on my property! Lol – Tanya from facebook group

Dad's not on failsafe diet, gout is what he gets. All joints crystallised including his toes. Coconut and beer are the worst triggers for him – Emma from facebook group

My husband’s gout has improved since our family went failsafe. He’s not really on the diet but eats a lot of our failsafe food – Michelle

I started getting gout attacks a few years ago - eventually I realised it was the day after we ate in our favourite restaurant (Thai). We still eat there but I avoid the oyster sauce and we don’t take a bottle of wine.
 
Sue’s comment:  What’s in oyster sauce?  In Maggi brand, one of the main ingredients is flavour enhancers (621,635) and oyster extract forms only 0.4% of the product. Flavour enhancer 635 is strongly linked to gout. See Gout factsheet

1530oyster  INGREDIENTS: Water, Sugar, Salt, Thickener (1422), Flavour Enhancers (621, 635), Yeast Extract, Flavours (Crustacean, Fish, Soy), Food Acid (Citric), Colour (150c), Oyster Extract (0.4%), Preservative (202).

We did diet for explosive ADHD symptoms. It made a massive difference. The thing that helped us the most during elimination was focusing on what we COULD eat. I wrote the list on my fridge so it was visible. And I found adapting recipes wasn't that difficult once you got into the swing of it. I highly recommend going the whole hog and doing full elimination. We tried just doing low and moderate and it didn't give us a clear enough picture of what the trigger/s were. I promise it's not as hard as it looks. Just be prepared for lots of white food. But it doesn't have to be boring! – Kat

Pre-failsafe, my daughter was annoyingly hyperactive and inattentive. I was looking for one trigger. What I learned was...

•    Salicylates make her vague
•    Amines make her antagonistic
•    Glutamates make her highs extra high and her lows extra low
•    Colours make her silly but only last a few hours
•    Antioxidants make her completely ridiculous, an absolute pain in the neck, you can’t reason with her, you can’t discipline her, there’s no comprehension of consequences and it lasts for a week
•    Nitrites stop her sleeping

Combine that and you’ve got a stupidly hyperactive kid who runs around like a total fruit loop with not one single care about discipline, boundaries or consequences, who loves to annoy the living crap out of her parents but who melts down when corrected and whose ears don’t work - ever.

But because the worst one - the antioxidants - lasted a week, I never connected the small Maccas fries she had on Sunday to the crappy behaviour on Thursday, and because amines took WEEKS to build up and was always there, there was no way I could have linked it to aged meat and bananas.

But if I keep antioxidants out, and keep glutamates to a minimum I have a kid who gets vague when she eats too much fruit or spices and whose eyes light up with pleasure at annoying the crap out of me after eating too many bananas. She lives with her reactions. She understands what does what. She doesn’t live on strict diet (or at baseline) she just keeps it “ok”.

I know rpah (failsafe) elimination diet is huge and daunting and really inconvenient but it really is the best (the only?!) way of clearly connecting trigger foods with symptoms – Rhonda

What’s your opinion on bed wetting that may be triggered by diet? My son said he’d rather continue to wet the bed than give up fruits ?, he LOVES fruit. I’m just guessing there is a link to fruit - Helen

Salicylates were certainly a trigger for my son in night wetting - Kelly

One sign of intolerance is often that we crave our problem, kind of like an addiction (withdrawals and all) - Tracy

My 5yr old daughter is the same ? - Deb

Sals here ? - Rebecca

Amines cause my daughters oppositional defiance and part of that is holding onto her wee until she wets herself - Tess

4 weeks on the full elimination diet and my son (almost 6) has only had 3 wet nights when it used to be pretty much 5/7 days. Yet to find out our trigger, but it’s been amazing for him. He’s so proud of himself - Marie

Sals was definitely the trigger for my almost 7yo. We changed to moderate and low sals last yr and within a month she was dry at night or waking to pee. Was extremely hard as she loves fruit and didn't want to give it up either but we were also having other issues which also got much better when we cut the really high stuff - Peta

Sals triggered bedwetting in my DD but DS doesn't seem to be any food trigger – Lee

Sals cause bedwetting here for two of mine, one is also additives. Having progressed with tolerance to moderate level, now only happens if consuming over threshold so definitively related here – Emma

(Lightly edited from May 2018 to focus on possible dietary causes. Thanks for the other supportive ideas. See also factsheet on bedwetting)

We are towards the end of Elimination Diet for Master 4 with ASD & ADHD. We have had significant improvements in behaviour - defiance, hyperactivity, stimming, concentration. He failed Dairy, Wheat. He can tolerate Moderate Salicylates and Amines. I make up big batches of allowed foods and freeze . I make G/F cupcakes from Ethan’s failsafe Recipes and we are under guidance of a dietician – Sharon

ADHD and diet factsheet

Blog on ADHD label

Q: Anyone get (blurry) vision issues as a symptom of amine/sal intolerance? – Rachel (facebook group)

A:  I have noticed I don't see as well when I'm reacting to foods – Ann

I can confirm that when food was making me so I'll that I ended up on steroids (there was a waiting list for the rpah Dr and I didn't know what was going on yet) I got so inflamed from all the histamines released in my body from eating non fs foods that my vision blurred – Jen

They interrupt my motor skills so everything is on slow motion, including the messages to the brain, hence the "blurred' or distorted vision - Amanda

Yes me too! I thought it was just me until I joined this group. Mostly for me it’s like the beginning of an aura migraine where I get a spot in the middle of my vision and just can’t quite see ‘clearly’ all day. It’s so frustrating. This diet has been life changing - Kath

I used to. I had so much constant, thick congestion for 9.5 years. Always a sinus headache/vision and eyes achy at times. For me, going Dairy Free and eating low sals has totally changed my life. Life is so much better now. Remember, what works for one, might or might not work for you – Karen

After eating 2 tamari and some corn chips, woke up the morning had blur vision! Haven't had corn for a while and try to reintroduce back but didn't work & at least know the cause! - Fiona

I finally had some success with following the diet based on burning mouth syndrome diminishing (see also story [1466])  ... I have new hope for losing weight. I've had food cravings go away entirely for the first time as an adult, which has let me endure some hunger without tears, and I have my peak mental clarity, which I prize - Laura

I have been failsafe for 8 years and have just completed another round of the elimination diet for some new minor health issues. I'm currently being fleeced by my 2 gorgeous grandchildren (8 years and 6 years) because I promised $1 each per day for their piggy banks for every day they stick to the elimination diet. It's working so far.... for them anyway - Nicola"

About five years ago in Kathmandu, Nepal, we met an American guy sitting in our hotel restaurant with his foot on a chair.  Aged maybe 35, he was barely able to hobble. He said sadly: “I came here to do a trek. But now I have gout – it’s so painful I can’t even walk. My whole trip is wasted”.  Both he and his doctor were mystified about the cause. Gout is usually associated with too much meat and alcohol in older age men - not the case here.

According to a local journalist, gout is common in Nepal, and attacks "seem to start at a younger age group (less than 40 years) in Nepal than what is usually noted in Western medical textbooks (over 60 years)", for unknown reasons. https://www.spotlightnepal.com/2011/08/09/gout-in-nepal/ - Sue Dengate

story1522

A ribonucleotide-containing noodle soup advertising blimp being towed through minor towns in Nepal

Sue's comment: I guess the culprit in both cases would be ribonucleotide flavour enhancer additives. These additives are heavily used in Nepalese food such as instant noodles, soups, sauces, fast food and snacks. These high purine additives are as strongly associated with increased uric acid and risk of gout attacks as high purine foods although, oddly, they are never mentioned in any medical gout diets or lists of high purine foods.

These additives can be called inosinates, guanylates and ribonucleotides (E627, E631 and E635) or  in America flavor enhancers Disodium Inosinate (DSI or IMP), Disodium Guanylate (DSG or GMP), and the combination of IMP and GMP (I&G).

"Ingestion of large amounts of these compounds by man can increase the serum uric acid level and urinary uric acid excretion and this needs to be considered in relation to people with gouty diathesis and those taking uric-acid retaining diuretics. Hence, specific mention of the addition of these substances on the label may be indicated (but this didn't happen - ed). The changes in dietary purine intake from the use of flavour enhancers are no greater than those likely to be occasioned by changes in consumption of those dietary items which are the main contributors of purine." - JECFA (the Joint FAO/WHO Expert Committee on Food Additives who assessed these additives in 1974) http://www.inchem.org/documents/jecfa/jecmono/v06je01.htm

I have osteoarthritis … lots of nerve pain & damage - and was put on Lyrica to which I reacted and hated being on. After coming off it, I developed skin rashes … diagnosed as very late onset (I’m now 68) eczema which I have never had before. I have heard of (via FB) several others who have also had major skin problems coming off Lyrica - Barb

My son has ASD and I was lucky enough to stumble across the horrible effects it had on him over a year ago. His symptoms are irritability and total sleeplessness ... he stays awake all night after having some! I truly believe this is a harmful substance and should be banned. It's confusing because it's a 'natural colour'. I could see a lot of people not knowing that this additive could cause such a huge side effect! – Jenny

See annatto 160b factsheet

I always avoid foods that gave me migraines, such as bananas etc but then I started getting severe migraines and realised it was 160b in ice cream. It was because I decided to have a little every evening when a container was brought for the grandkids and they decided they did not feel like it. By the end of the week I was literally banging my head on the wall. So I researched what I had been eating all week and found it had to be 160b. Now I try to avoid it, but whenever I get a migraine I look back at the package and always find that it was in it, when in the past it never was! – Kathy

See also headbanging factsheet

1518

Just needing to vent... my husband spent months sabotaging the diet to prove his belief that food has no impact on behaviour. He was secretly feeding our son bananas and lollies. At one point I laughed because our son threw up in the car after eating one. The last few days have shown very high salicylates to be an issue and still hubby thinks there’s no connection. How the heck do you get your partners and family on board? I’m so frustrated because my son is being quietly tormented for longer than necessary all in the name of proving a point.

Update... hubby is now on board and has made amends... with flowers!! ????- Anna

See full moving and funny transcript of the facebook thread, with permission, because it is too long to summarise https://www.facebook.com/groups/128458328536/permalink/10156908872873537/

Some edited highlights (names changed):

I told him he’s wasting my time because I’m the sucker filling out food diaries for myself and our son... then he complains I don’t have time for him... well genius, why do you think that is???!!!????♀️???? - Anna

For ages I tried to tell my family that there were certain foods that triggered behaviours in my son. Finally with eliminating the foods I could pinpoint my son is a completely different child... finally I have a happy child and family - Mel.

The challenges were showing DH that it wasn’t just growing up and learning, when all the old stuff suddenly came back on cue ... then disappeared again. Although still wasn’t really convinced until about 3 reactions later, following clear baseline in between, where I accurately predicted each day ahead of time - Tracy

This is it!! I can predict the days that are gonna go pear shaped and he keeps saying it’s just a coincidence ???? - Anna

My daughter is sensitive to dairy and when I first noticed I told my husband. He didn’t believe me and gave her a whole cup of milk then experienced her full aggressive meltdown. It took seeing it for himself to realise... after that I had his support and understanding - Tanya

I wish my hubby would acknowledge what he sees... he just keeps denying it... it’s so frustrating! - Anna

Are we married to the same man? - Mary

I would simply say there’s not a person on the planet that would choose this diet if it didn’t have a benefit to outweighs the sacrifices that come with the diet. The quicker you can reach baseline, the quicker you can rule it out or set a course for a new way of eating for you and your daughter. One stuff up just prolongs the process and isn’t helpful - Danielle

I did point out that he has delayed us getting true results and our son is being tormented longer than he should be by this diet – Anna

I know what I’d be giving up for him!!! - Meg

I suspect he has food issues too lol he’s a sceptic by nature so it’s difficult to get him onboard with anything – Anna

I would respectfully point out that your child is the one suffering here - not him. Request he shelve his ego temporarily for the sake of the health of your child. Good luck - Jacqui

I actually had a grandparent say "this is all bullshit” (meaning that food doesn't affect behaviour) while pointing a finger at my 6 year old son who was in meltdown after a reaction. I respectfully lost my shit. This journey is hard enough without that rubbish. I said “you don't have to like it. You don't have to agree. But keep it to yourself and stay out of it.” End of discussion. Harder obviously with a husband - Jacqui

My response is..."When you've read some literature on the subject and your opinion is based on more than just your upbringing and hunches then we can talk. Until then stand back and let me get on with it because what we've done up to this point clearly hasn't worked for him" - Jacqui

Have you tried taking him to a dietician appointment so he hears the symptoms and reactions from a professional? Maybe having a third party involved might help convince him - Laura

Yes actually! I thought the same thing... he was politely insolent to her ???? - Anna

Have you tried getting a new hubby  - Paul

My husband is similar, doesn’t believe it’s a thing and resists and complains, although doesn’t deliberately sabotage. Something we were advised, which I think is sensible, is to have one parent do the food diary and the other monitor symptoms... – Jen

You can definitely win this battle together! Let’s get creative. Lock the pantry. Hahahahaha – Jan

Could I please hear from anyone trialling the fs diet with a baby? How did you work out the severity and presence of symptoms? We have an appointment with a dietician to (hopefully!!) work out the cause of our 9.5 month old being awake and uncomfortable after dinner for up to 8 hours sometimes. The allergist suggested amines and salicylates since the problem foods are all listed as high or very high – Cath

My little one was confirmed with a salicylate intolerance at 10 months after a strict 6 week elimination diet. My suggestion would be to have a food dairy to track all food and fluid intake and reactions. I specifically tracked sleeping and stool as well as these were big ticket items for us. I would also recommend from my experience starting at the beginning with the elimination diet then introducing new foods in a timeframe agreed with dietician and your baby’s symptoms. Be flexible though as it can change. I still track 14 months on! – Laura

We started when my daughter was 3 months old. She was solely breastfed so meant I needed to do it. We tested me, and she was tested through my milk at 9 months. We did more testing when she was about 3. Early tests gave us back salicylates – Anne

We started dabbling with the diet at that age but didn’t commit fully until just after 1yr. After 6 weeks on failsafe our boy finally started to relax, play independently and sleep through. Good luck with your bub! – Carol

I went through this when my son was 6 months old. He wouldn't settle to sleep, had eczema issues, was constipated despite being breastfed and seemed almost hyperactive. The elimination diet was probably harder for me as I was breastfeeding so had to do it as well, at six months he hadn't eaten a lot of solids. But by day 3 we went through a bad withdrawal phase and by day ten my son slept 5+hrs for the first time in 4 months. He is now a much happier healthier child (and he sleeps!), and is slowly building his tolerance levels so we are introducing new foods. He is now 16 months and is starting to tolerate moderate salicylates and amines. The elimination showed sensitivities to amines, glutamate s and salicylate so we are on a long journey but his recent improvements have given me hope. The downsides of this diet were really for me. I was very stressed and sleep deprived when I started it. It contributed to my milk supply drying up and also impacted on my mental health which to be fair was not in good shape when I started. I lost 5kg unintentionally and was so bored with the food I lost interest in eating. I wish I had stopped breastfeeding to be honest earlier so I didn't put myself through it. No one warned me that my milk supply could be threatened but I also know it was likely a combination of things. I was however grateful to have such a good medical team behind me even if it did mean travelling 3 hrs initially. Best wishes to you and your child! - Cassie

We started elimination levels on my LO when he was 1. I was still BFing, so did it too. Amazing improvement in a few days. We trialed foods in my diet (ie through my milk) before trialing the same foods on him directly. I strongly suggest you keep a detailed food diary that includes anything that goes into your mouth or his as well as his symptoms (stool consistency/mucous/blood, temperature (if unwell), vomiting, diorhhea etc) & anything important that may have happened that day (eg went to day care, birthday party). This includes drinks/liquids as well as medications & brands of food. I discovered when we changed brands on one item we saw a reaction. Also, it meant if my LO needed pain relief, the kiddy Panadol syrups were not ok, so we need to buy the tablet form (without preservatives) & crush the tablet & give a portion of the tablet based on his weight (I recommend talking to your pharmacist about suitable dose). We found similar with Amoxil & other meds. Good luck, mumma - Sarah

My daughter was the same, tummy aches didn't sleep and it was eggs. She was breast fed so even if I ate eggs she was affected – Jen

We started FS when bub was about 12 weeks old ???? He was breastfed and suffered extreme gas and silent reflux and was either being fed or screaming, very rarely sleeping. It was difficult to work through and I made many mistakes unfortunately. We kept a strict food diary which helped me go back and analyse things as needed.

We saw improvement after a few months when I started to get the elimination stuff right.... his main trigger is salicylates so he’s still relatively low sals at nearly 3. I must admit it was a relief when we weaned at 2.5 and I was able to eat “normal” foods again.

We found challenges very difficult because with young children there is always something else going on - it took us until he was 18 months to get through them. Since challenging we’ve been able to reintroduce amines, soy and dairy (gluten was never an issue for us).

I love the RPA handbook for a quick easy reference guide for what he can and cannot eat. I’ve also used it to explain to family what we’re doing with diet because they didn’t understand and we’re quite critical.

My other tip as they get older is to continue to look out for behavioural manifestation of reactions. Our sons tummy symptoms have lessened but the behavioural symptoms have significantly increased - Karen

(Sue comment: make sure your dietitian is familiar with RPAH elimination diet.  See supportive dietitians)

Since about 18 months of age, our son has had asthma on and off and it took us a while to work out what was going on. One of the things that was happening was that every time he ate dried fruit, three or four days later he'd be sensitive to things. So if he had a chest infection, he'd have an asthma attack where normally he wouldn't. Or if we had a cold snap in the middle of the night - like around springtime - he'd had an asthma attack, starting out coughing, just as a cough and then it would develop into a full blown asthma attack. Eventually, we realised if we could keep the dried fruits and sulphites out of his diet, a lot of his problems would go away - Darryl (from DVD 2006)

See how few dried apricots can affect your asthmatic child

Asthma and food factsheet

1515crohns

Update after 8 years: We are all doing well. My daughter with Crohn's is doing well although she flares up sometimes with too much dairy and now knows how much is enough. The funny thing is her Crohn's symptoms aren't really there anymore, it's just her top lip that swells with too much dairy (see photo - the paediatrician called it an angular stomatitis).  Her mood is also affected. We haven't been following failsafe to the letter either so pretty good considering. I often recommend failsafe to people and know that if they just tried it, that it would work for them as all the nasties in food are just terrible - Shelley

See more [1060]

I am a 60 plus year old woman who has suffered from Atrial Fibrillation for a number of years. I noticed after some time that it was triggering about 40 minutes after partaking in food and have spent many years trying to pinpoint the triggers. Sorbate preservatives 200 and 202, plus 282 are most definitely my triggers also alcohol which I have stopped drinking. I get triggered mainly by sauces and dressings or anything with those preservatives in.  I do wonder how many people are unaware that their Atrial Fibrillation is triggered by certain additives or food groups. It took me many years to pinpoint my triggers, and I now have to be very careful especially when dining out – Sandie

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