I have been on the RPAH low salicylate diet for many years with tremendous success in controlling very severe asthma … My doctor … has been very interested and supportive of all the food intolerance information. He is quite a convert! As well as asthma, I also had very bad nasal polyps. Had two lots of very painful surgery to remove them. When I stopped using the nasal spray the specialist prescribed they went away and never came back. My GP was totally convinced!!! - Krys aged 78

I was delighted to read the latest newsletter and see the information about seizures. I have had food and chemical intolerance since the 1970s, diagnosed in the US.I am 77 and really my whole life has been a struggle with allergies! Now I live in the UK where doctors are very scathing about these problems, particularly the seizures. I have been ridiculed and shouted at by medical staff and had concussion when I was allowed to fall on the floor. For the last few years I have been steadily getting worse in spite of low sals diet, no nasty chemicals etc. I now very rarely go out because strong fragrance (detergents etc) gives me seizures, also only one friend who went Fragrance Free can visit me.

In March 2020 I got Covid 19 when I had to go food shopping due to deliveries being unavailable...there was no food to deliver! That developed into Long Covid, which is only now starting to improve. I had a few days in hospital and had a major seizure there, (and fell as already mentioned) due to all the chemicals and awful diet I am sure. I had several more when I came home, what my doctor called 'funny (?) turns'. The good news is that on the Low Phenol diet, I have steadily improved! But due to the Covid brain fog and feeling so awful I needed some motivation and found your Failsafe Cookbook on Amazon which just shows that every cloud has a silver lining or somebody is looking out for me. I see that I need to tweak my sals in light of latest research now I have been on the website, and also watch out for propionate, which I today found in both gluten free and normal bread! Thank you so much for all the hard work you do - Sarah from the UK

For people like us, with complicated medical conditions, it is sometimes hard to focus on the positives. I have been on a restricted diet for about ten years, going from strict elimination, gluten and dairy and soy free to being able to eat gluten, amines and some glutamates and moderate salicylates. I'd like to share some of the positives I've discovered on this diet:

•    When I've been bad, (broken my diet) I get to reward myself with a nice luxurious bath with epsom salts.
•    Pancakes are still possible.
•    I have found a partner who not only enjoys my cooking, but is willing to change all his cleaning and personal products to fragrance free.
•    Roku gin is absolutely delicious and still failsafe!
•    I can breathe without prednisolone - Jennifer

Roku Gin is failsafe!? emojiDISMAY I am literally crying. Thank you for making this post emojiSMILE it's really much needed for me as I'm just at the start of my journey and trying not to be down about it - emojiHEART Kay

No migraines, diarrhoea, hot flushes & nausea for 4 weeks!! emojiHEARTemojiHEARTS - Sandra

My daughter sleeps and isn’t in pain from my breast milk - Amy

I can sleep better and are more clear thinking and less fatigued. I can do more exercise and cope with stress better. Less anxious and have lost weight! And my memory is returning - Charlotte

I very rarely cough now, I no longer need a ventolin puffer, my skin is clear and my husband eats everything I cook, which means not having to cook two meals - Sandi

Less mood swings and depression, no hot flushes, no more daily migraines or headaches!! I don’t miss running to the toilet all night long either – Elise

No mood swing roller coaster for my son, who now checks labels himself and chooses to avoid triggers because he recognises how awful they make him feel. Winning!! Oh and all our family and friends are super respectful of his needs- emojiBIGSMILE Rebecca

The best post ever. Thank you everyone for sharing your positivity. If I stick to the diet I sleep and have no headaches and since dealing with sibo I have no bloating and no regular trips to the toilet. And how good is finding failsafe food options? Regular eaters just wouldn't appreciate the excitement - Petra

•    My relationship is better thanks to minimised mental/emotional health reactions.
•    I spend a fraction of the amount used to on topical steroids for my skin.
•    I sleep.
•    My child is not considered 2e (2e is twice exceptional and is used to refer to kids who are intellectually gifted as well as neurodiverse or have other learning difficulties) any more, just gifted, and hasn't been sent to the principal's office for 3 years - Stephanie

My baby’s gut is healing, she’s gaining weight and growing well. If nobody was told they’d have no idea the food challenges we have faced so I could breastfeed her - Kylie

In 2 months my baby has shown massive improvement in his behaviour and since he was partially breastfeeding I was on diet too, including Gf and DF. After 6 weeks of diet I found that my thyroid (which I had for 10 years and GP always said I have to be on medicine for life) is getting better and doc has reduced my medicine. It even helped me with my knee and back pain, plus bursitis with which I have been struggling for few years - I literally don’t feel any pain in knee atm. So so happy that I am able to walk and climb stairs without any pain. Even though I was doing it for my baby it proved to be a blessing for myself too and my family - Kassie

•    My daughter is becoming more calm and herself again.
•    Our sanity might just be saved (what's left of it emojiUPSIDEDOWNSMILEemojiQUIZZICALSMILE)
•    We are all eating a lot healthier and it has been a huge wake up call to go through and see just how much CRAP is in our everyday foods.
•    We are all feeling better for it emojiHEARTS - Jasmine

My skin is back to beautiful now and I no longer feel like an ugly itchy cranky monster. Most days I am in a good mood and feel good overall. On the days I don't, I know tomorrow is a new day and I will feel better - Molly

My aches and pains have stopped. I've cut out SOOOO much medication. Haven't had an asthma attack in 10 weeks (been fs for 12 weeks). I sleep!!!!! and only need 6-7 hours instead of 11-12. I have energy. I've lost 11kgs - emojiHEART Nicola

I’ve lost that uncomfortable, yuck/shabby pain feeling (stomach/oesophagus). I’ve lost 10 kg. My anxiety/stress levels have never been so low. I feel awesome. Life is good and I’ve energy to burn. Just as an aside I’m 60. Thank you - emojiANOTHERSMILE Annette

I have lost weight, am not as ill as used to be, feel more "human" most days - Diane

My 9 month old has made incredible leaps and bounds working with (a dietitian). Our main symptom was terrible sleep quality and night pains and some very mild eczema and mucus nappies. Baby girl is amazing now after 2 months of guided heavily strict nutrition, and tolerating so much more now and sleeping though - Amy

My son was 3 or so when we started FS (now 14) and the paed basically said we were over reacting. But I had an amazing and supportive GP and used RPAH and Sue Dengate books as guide, kept a diary of every response and figured it out on our own (we were in Darwin at the time). It just took time! - Kim

I saw (my dietitian) via Skype, she was incredibly knowledgeable, understanding and lives failsafe with her family. Lots of email contact and food diary, asked me to send pictures of poop etc. She did get quite busy towards the end but I was really happy with her for the six months we saw her – Penny

My issues nearly killed me with severe lack of sleep and the kids with diarrhoea and vomiting. Worst time of my life and we are still recovering years later. However I went to (a dietitian) directly linked to the RPAH, even phoning them to discuss several times. We had monthly appointments plus email contact and a GP specialising in allergies and dietician team. Things changed the moment we started the diet, such a relief!! -  Michelle

(My dietitian) has been amazing. We did a Skype/telehealth appt within three days of this original posting, she did plans for me, answers questions that I email even when I am sure she should be in bed! Managed to pinpoint what our main problem was - amines - and I have plans with her to broaden – Melissa

See list of experienced and supportive dietitians in Australia and overseas who can support you through this protocol (some consult in languages other than English)

These pictures popped up in my phone memories. First before we started failsafe diet, 3yo and battling daily asthma and eczema head to toe for 2 years. Second from last night, indulging plain purple cabbage and carrot - Emily

1601A   1601B

See Eczema, hives and rashes factsheet

I have recently been diagnosed with chronic migraines and a rare neurological condition called Hemicrania Continua (constant fluctuating pain on one side of my head for the rest of my life). I came across failsafe many years ago for my then 4 year old child, whom is now 17 and doing well! 😀

I am interested in hearing from migraine sufferers or if anyone else may have HC also?  I am reactive to histamines, I also react to preservatives and additives, dairy, and possibly gluten, I have IBS, anxiety and PTSD. I see a neurologist and am on preventative meds and also medication for my migraines if I get a bad one – Shelley

Response from Lisa - I've been a migraine sufferer for over 30 years. I ended up in the allergist’s office in 2018. After working out my allergens they put me on the RPAH diet. The only times I've had a migraine since has been when I've eaten high chemical foods or chemical exposures. I react to the smell of fragrance, plastics, smoke etc which can cause pain and I wear a Vogmask for that as well as make my home safe. I have damage to the trigeminal nerve on the right side of my head. It used to be bad after the initial trauma but the pain isn't continuous and now I get it approx 48 hours before rain arrives. Basically I'm a walking weather barometer. I can do mod sals in small portions and I can eat chickpea and buckwheat but in small amounts. Vegan doesn't work for me - too many veggies would overflow my bucket back to migraine territory.

Response from Peta - It didn’t help with my migraines, I avoid amines anyway if I can but the salicylates don’t seem to make a difference.

Response from Michelle - Removing all scents from our house fixed almost all mine... I've only had a couple of milder ones in the last couple of years which is fantastic.

Response from Vanessa - I have had severe migraines and other symptoms. I follow failsafe plus I can’t have dairy, wheat or gluten. I see a neurologist and am on meds. I don’t have migraines unless I eat the wrong thing or are under high stress - I have other weird neurological symptoms that my doctor said could be an unusual form of migraine or something else - I put a huge effort into my wellbeing in general via exercise, meditation, mental health exercises and other things. I have a Masters degree in Public Health so have used that knowledge to develop a program for myself. I am now going really really well as long as I stay in my limits, working 3 days per week plus I have three children and have never felt better. This is a far cry from 2 years ago when I couldn’t work at all due to severity of migraines and other symptoms.

See factsheet on headaches and migraines

At 73 I have been eating failsafe for more than 20 years. Last year, after recurrence of an eye problem from my 20s, I attempted to considerably increase my intake of non-failsafe but eye-friendly lutein and zeaxanthin (yellow plant pigments) by eating four non-failsafe foods I hadn't eaten before: kale (high in salicylates), honeydew melon (canteloupe, high in sals), goji berries (very high in sals and amines) and capsicum (bell pepper, very high in sals).

Within 24 hrs I had symptoms I had never experienced before: extreme pain on starting urinating, frequent night-time urination (nocturia) and constant prostate pain.

The doctor was mystified since I had never had any prostate issues at all, had no infection, and didn’t even have the enlarged prostate (benign prostatic hyperplasia BPH common in men of my age) because as a vegan I do not follow the Western diet. After 72 hrs I stopped the four hi-sal foods. The pain disappeared completely within 24 hrs and has not recurred within the following 14 months. It seems likely to me that this incident was caused by excessive salicylates - Tom by email.

See blog on Urination issues and food intolerance

I ate microwave popcorn lunchtime on a Tuesday and lamb for dinner and became very itchy around 7pm. I broke out in hives and the next day I got antihistamines which didn't help so Wednesday night I went to the hospital and got steroid tablets but it flared up even worse all night.

It went to my face and throat. Thursday I had the popcorn and within half an hour this time my throat was on fire with spots around my mouth and I was back at the hospital Thursday and Thursday night where they gave me 5 days of steroids and 2 types of antihistamines. My aunt is a nurse and after investigating the popcorn ingredients we put it down to Annatto. Saturday night it felt like it had moved to my chest I've had to get a chest xray today and my heart has been having palpitations so that's being investigated also – Anna

1599a   1599b (comment was sought from Greens customer relations, no response to date)

Yesterday Nanny and Tylah cooked some Green’s cupcakes. She thought she was doing the right thing, she made sure that there were no artificial colours or flavours in them.... however the Green’s ‘Trolls’ cupcakes designed for kids contained Annatto.

When I got home from work miss 3 was completely strung out, tantrums, uncontrollable crying, bouncing off the walls mood completely out control. Poor bubba - Rob

1598greens (comment was sought from Greens customer relations, no response to date)

See Annatto 160b factsheet

In your article about low salicylate diet what intrigued me was the issue regarding ibuprofen. Looking back I would suggest that ibuprofen was the first thing which caused problems for me. In my case it is nosebleeds. Any foods with heavy salicylates would trigger nose bleeds. It is almost instantaneous. Spinach for me is the worst but as time has gone on I have found tomatoes, blueberries, avocados etc. will also cause  them. I did not make the connection with my asthma either until reading the article on your website. It also started around the same time that I had the reaction to ibuprofen. Very strange indeed. Thanks for this information - Sue L

Aspirin, dietary salicylates and nurofen side-effects

I first learned about 160b affecting me when I ate a Magnum icecream. I did not sleep for an entire night.

Occasionally I slip up and eat something with 160b in it and of course I suffer the same effects like my brain is speeding, lasting for hours.

I am sensitive to other additives as well including MSG which is hard to detect at times. I am 75 yrs old now and have suffered food intolerances for years and have had to live with sleep deprived nights regularly.

Why do they do it? White icecream tastes the same as yellow icecream! - Suzie

My son is 4 months old, breastfed and was waking every 45 minutes at night and very unsettled / uncomfortable all day. I knew it was food related but struggled to get the doctor to even acknowledge this was possible. Having gone on meat and veg he is sleeping 4-5 hours in a row ... I want to find a dietician to work through the strict elimination diet with me - Beth, UK

I am 18, turning 19 in March … I’m currently in university, studying on campus. I have ASD (Autism), GAD (Generalised Anxiety Disorder), ADHD and Depression…  I have struggled all my life with food intolerances, in fact my mum tells me I almost died when I was a baby because of them. I was failsafe until I was 5 and then mum eased off a bit. And I recently went back on because my symptoms were getting out of hand. I have found massive improvements - Jemma  WATCH VIDEO

BlogteenJ  9min 25sec

The worst additive in my experience thus far is the preservative 282 used in most commercial breads. This additive is so strong that when breast feeding my 6 month old baby boy Chris if I ate only 1 slice he got enough through my breast milk to cause him to start screaming in agony with stomach cramps and have diarrhoea within 12 hours of me eating the bread containing 282. Chris is now 21 months old and if he eats anything with 282 he is in terrible pain and has diarrhoea within hours - report given to Sue Dengate in 2002

littlechristopher

Thank you FAILSAFE - despite late nights, lots of people, excitement and travel we enjoyed two happy, cooperative children who, even now, are sitting quietly happily playing together 🙂 – Rebecca

I’ve been experiencing this same phenomenon the last few days since we cut sals. My 6 yr old son walked in the back door this arvo with his arm draped over little sisters shoulder. It was the cutest thing! - Annabel

We are truly grateful for the work that you do, with much appreciation, the XXX family

Your website and detailed information has helped me immensely with my food and chemical sensitivity – Tim

Thanks as always for your continuing support & advocacy for all of us with food intolerances – Jenny

You guys are doing great work so thankyou :) - Adam

I'm most grateful for The Failsafe Cookbook and website which have and continue to be a lifesaver to me. Your educative work is invaluable - the support and guidance it has given me has changed my life - William

I would like to say thank you for what you and Sue, and all those who assist you, do. Since listening to Sue speaking at the Fedup Roadshow in Clare in 2013 our family has been avoiding the colours, flavours, preservatives, synthetic antioxidants & flavour enhancers listed as problematic, and boy do we know when we stray!! It's not easy to keep up with so I rely constantly on the information you provide in your shopping list re additives in foods. It is always kept up to date, and problems/changes noted. I'd be lost without your resources. There must be so many people like myself who you never hear from, who follow silently, but whose lives you have changed. So, THANK YOU! 🙂 - Lisa

I'd like to say THANK YOU for your valuable, relentless and inspiring work in the field of food intolerance! One cannot overestimate the support - both through information and self-empowerment - that you give to people affected by food intolerances and those caring for people who are affected - Sylke (Berlin Dietitian)

 

canstockphoto588415small

 

I can attest to sorbate allergies that started with my cheeks flushing, heart rate going up and coughing in 2006. In 2007 I broke a rib trying to suppress a cough after eating at a restaurant. I went on an elimination diet for 1 month eating only rice, then re-introduced fruits and veg, then meats and dairy products. By then I had worked out it was an additive because I reacted to yoghurt but not milk. Eventually a fruit juice gave the reaction. Since then I have avoided it as far as possible. However despite my best efforts sometimes one still gets exposed. The allergy has progressed to bronchospasm, upper airway obstruction and hypotension requiring 4l of IV fluids to restore. I now carry adrenalin (Epipen) on me.
 
Different countries contain sorbate in different things. In South Africa butter only contains salt, in Australia some butter contained sorbate. The same brand of ice-cream in South Africa does not contain sorbate but in America it does… - Josie (South Africa)

See Sorbate factsheet

Has anyone here ‘cured’ OCD and severe eating related anxiety/preferences using the failsafe diet? Asking for a friend’s 5 year old who is really suffering ❤️. At the moment he eats a gluten bread with propionates, dairy cheese, a gluten brioche with preservatives, orange juice. He won’t eat anything else. I think he accepted water the other day as a sub but she tried GF bread and that was not acceptable. Wouldn’t even touch it. Really tough situation - Emma

Yes. Immediately. Cut out food dyes and processed foods. Immediately a different child. Found out it also helped my migraines and lead me here and autoimmune diet. But it was hard and a lot of trial and error - Kay

My little boy displayed some strange OCD type behaviours before FS and all went away within a short time of beginning the diet - Maria

Yup. Honestly, it turned out that all of the foods I had childhood anxiety around, I'm severely reactive to - Becky

Have they looked into pans/pandas? - Elendel (Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) is a clinical diagnosis given to children who have a dramatic - sometimes overnight - onset of neuropsychiatric symptoms including obsessions/compulsions or food restriction. Said to affect 1:200 children. https://www.stanfordchildrens.org/en/service/pans-pandas/what-are-pans-pandas

Yes and am finding out the hard way what happens when a 10 year old, (usually gluten free and simple failsafe) has some Tim Tam treats as a school holiday treat – Rose

I’ve found out with ‘messy monkeys’ ... a “healthy” breakfast cereal gifted to my boys for Christmas – Fi

My son had motor and vocal tics that went away with the diet changes – Cath (see Factsheet on tics and Tourette symptoms)

Anxiety/OCD could be related to something entirely different that is just manifesting itself in food issues as it is a means of ‘controlling’ something in the little ones life. A good psychologist or counsellor might be beneficial. I know if a little one who has anxiety around food cos she was told to chew her food slowly as she might choke and then the next night her brother almost did choke. So now she takes forever to eat. So, as I said, it depends on the issue at hand – Ruth

Back in the late 80’s I was dashed to RPAH after I over-indulged on cinnamon candies. I was under the care of Anne Swain and Dr Robert Loblay and also met with Sue Dengate at the time.  I was found to have severe salicylate intolerance and have pretty much remained on a very restricted diet for decades. After a decade of living abroad and recently returning to Australia , I am absolutely OVER the MOON to see the leaps and bounds in the understanding of salicylate intolerance! There’s so much more understanding, information, education!

THANK you so much for your amazing work. So many more people are now aware of the dietary restrictions of salicylate intolerance. So thankful for finding this group! – Mimi

This thread has been edited to preserve the flavour of a recent long discussion in the closed Failsafe group 

Question to parents of autistic kids: Did you see them getting worse before getting better after starting the diet? Today we are on our 5th day of diet. I saw benefits like good sleep, less anxiety and good energy. But today he is irritated, looks sick, crying, pinching and inattentive. I’m feeling very low. Please give me some hope.

I must also mention my son gets horrible symptoms after eating stuff like okra , eggplant. He becomes uncontrollable with his silly laughter and hyperactivity. Which lasts for some time followed by crying/cranky days.   Problem here is our 7 yo can’t say what is bothering him and we are already on gfcfsf corn and soy free diet since many years. Now he is much better now focussed , happy , energetic but still stimming eeee and playing with his saliva – U.

The diet worked here, but it was very important for me to keep a food diary of all foods/ingredients eaten by my child. Sometimes something you might think is okay is actually a trigger. It’s a bit of detective work, but well worth it in the long run - D.

Symptoms can be from foods eaten up to 3 days prior! It also depends on the cumulative effect of repeated foods or food chemicals groups eg salicylates. So it might appear that a food is tolerated one day and not after a few days as the body has reached capacity - L.

I have one child that failsafe was amazing for, and the other it made no difference. Both have Autism - K.

If you see withdrawal reactions pretty quick there is absolutely hope, unfortunately it can get worse before it gets better. Sleep improvement was 1 of the first things I noticed within days. Hang in there, get through the withdrawals, you will be glad you did - S.

We had over a week of withdrawals and looking back I could see each of our food reactions being stripped away one by one. Aka the withdrawal symptoms mirrored her different intolerances (Sals make her vague, amines make her antagonistic, glutamates make her hyper, antioxidants make her crazy). After withdrawals she calmed right down - R.

We had no withdrawal symptoms but did find extra foods he was not ok with. And as he was having extra of those due to the more limited diet it can be confusing... the dietician and allergy specialists we worked with were very helpful in this - M

Mine had both digestive issues which improved dramatically and one child had behavioural issues and had been asked to do an autism assessment. His teacher later commented that she could no longer see signs of autism. He is currently having attention issues,  sometimes after adding a few new foods so will have to scale them back again and experiment. He is still extremely focused on certain things and is very sensory and somewhat emotional at times, but no longer screams, cries, hits, can't focus etc unless he eats the wrong foods – M (again).

I have symptoms of autism and work with autistic kids. My experience is that we aren’t sensitive to natural foods as a rule - we’re reactive to food additives and additives in other products. I don’t believe in withdrawal symptoms in my experience if you’re still reacting that means you haven’t eliminated all your triggers yet – M2.

We can't say that all symptoms will be gone if he's avoiding his true triggers. I don't think autism is something to "cure", but manage – M2 (again).

I guess that the other thing to keep in mind is that not everything is going to be about food chemicals. Stimming and playing with saliva are potentially sensory seeking behaviors that allow him to engage with his environment – M3.

My eldest son had already been through some trauma by the time he was 4, but when we moved to a new house and he was covered in head-to-toe bites I assumed it was insect bites, midges, mozzies at the new location.  So, I covered him up, and put-on insect repellent and still they came up, we went to Dr after Dr who all said they were insect bites.  After a period of months, I mentioned this to my mother who told me that if the ‘bites’ appear symmetrically on the body then maybe it was food reaction.  One of my first obvious clues.

By now he had started school, an event I had eagerly anticipated as my son was very bright and loved to be engaged.  However, school did not go well, my son was angry, aggressive, violent.  At home he made constant noises, threatened to hurt people (in his mind he was joking), couldn’t sleep, he had weird breathing patterns, he itched all over (and was covered in scars for years), his hair stood on end, he had potty words in every sentence, I also noticed echolalia and palilalia, he couldn’t sit in a chair (literally), was never ever still, he couldn’t focus, on timeout he would smash his toys and ruin his furniture, I was constantly called in after school by the teacher for his behaviour, by the time I had him home he was so uptight he would start punching me.  Things were not going well.  Unfortunately, things at home were also difficult, my partner at the time had taken an adversarial position against our son’s behaviour which did not help at all.  Due to his critical and difficult positions I did not feel I had any support in trialling the elimination diet as I knew he would not help and would certainly not change his diet in any way at all.

By now I was beside myself with strain and stress.  I again mentioned my son’s behaviour and skin to my father, who is severely food intolerant.  He told me that skin rashes like that are the tip of the reaction iceberg and often only show after all the other ‘hidden’ reactions like soft tissue swelling which can occur all over the body including the brain and nasal passages.   The penny finally dropped. I realised just how much my son was suffering from what was most likely a severe food intolerance.  My then partner worked FIFO 3 on 2 off, so I waited until he was on for 3 weeks as I knew it would be enough time to dive right into the elimination diet.  I also spoke to my sons P & C canteen ladies who were super supportive and made sure there was food and drinks he could order at the canteen for lunch like the other kids.

Both my sons and I started the elimination diet, focusing on ‘what you can have’ rather than ‘what you can’t have’ attitude.  I had read that if it works you might get a strong reaction on day 4 or 5.  Well, on day four my eldest son and I both squared off for war of the worlds.  Grrrr! We were both so mad.  I though ok, this is good. I’m hopefully on the right path.  We stuck at it 100%, toothpaste, cleaning products, food, everything.

The changes revealed themselves slowly, one by one little miracles occurred over the next three weeks including the following:

•    No more hives.
•    No more constant noises.
•    Breathing improved.
•    Sleep improved.
•    Behaviour became much less aggressive and defiant.
•    Digestive issues settled down.
•    Swearing in every sentence disappeared!
•    Echolalia and palilalia disappeared!
•    And after three weeks, the child who could only hide in the corner and hiss in response to upset, turned around to me and announced: “You know mum, I really don’t like it when you boss me around.”!!

The elimination diet wasn’t a cure for ADHD and ASD, but for us it resolved much of the worst behaviour and allowed his true nature to come through.

His ADHD symptoms settled a great deal but he was still hyperactive, but I believe that was largely due to the home situation and that he was also suffering from trauma, additionally having ASD and being in a regular classroom was challenging for him.  His teachers worked with him and gave him two desks.

His ASD improved out of sight, he was still himself, but such a different more comfortable and happier version that could communicate and manage himself with greater skill.  I asked him how he felt after about 4 weeks, his response “Better than you’ll ever know mum”.   I never had to force him to stick to the diet, he did it voluntarily for years apart from the odd slip up.

To me the changes were so dramatic, he was like a new person, still himself, but different.  I realised after years of battling I couldn’t cope with him reverting, so we didn’t do the challenges. I was sure he was reacting to everything anyway. He stayed on the diet for years, but over time I very slowly reintroduced things.   Every now and then we would slip up, and I’d be scratching my head trying to figure out why I was so cross with him.  Then I’d do my homework and figure out if he’d eaten anything or been to someone else’s place and sure enough I’d find the culprit.  Sometimes it was a well intentions friend’s mother feeding him treats, one time it was a wart patch (made with salicylic acid) that was enough to change his behaviour - Mary

My daughter is 18 now. She is salicylate, amine, glutamate, colours, soy, SLS in body care products intolerant and can only do small amounts of lactose free milk and very minimal wheat. She has Autism, ADHD, Depression and anxiety. She was not interested in doing failsafe during her teens because she had to be too different (we did it from when she was 18months). She paid the price!! She has now removed all the offending items from her diet and she has seen so many improvements in all areas. She is not free from autism, ADHD, anxiety - but greatly reduced. She still is on medication but we are optimistic that she will not need it in the near future - or be only very low dose – Cheryl

Master 6. Diagnosed ADHD & ASD. Removed Gluten completely, reduced Sals & Amines (also no preservatives or colours or MSG) and he is a different child.

He can sit still for an entire movie now, and his defiance, stimming and yelling has reduced significantly – Carol

I have a gorgeous 5 year old son who is ASD and also has had a lot of very aggressive meltdowns. My close friend Debbie recommended I look at his diet and specifically amines, salicylates and glutamates. I found the courage as it’s been a very tough 6 months with him to finally look at all of this - we are under a dietician and have seen huge improvements with reducing and removing a lot of these foods in his everyday. So much less aggression and better behaviour and communication. When he eats any of these foods I see a nearly instant reaction and negative behaviour.

It is a work in progress and I am using a modified elimination diet. I would highly recommend you looking further into this as you can. I have found Sue Dengate Failsafe group on Facebook to be very helpful and supportive – Brenda

For us gluten, lactose, sal's (salicylates), amines, preservatives, additives, MSG, colours. My son has a hyper-sensitivity. When he was 5 he was diagnosed with autism, mild intellectual disorder & severe language disorder. He originally got an aide due to him being seen as a danger to himself & others. He was always in pain, aggressive outbursts, very difficult behaviour & emotional. When he was 12 I had him assessed again, this is after 5 years of following failsafe (but it took several more years to fine tune). The change was so dramatic that the psych no longer considered him autistic (all those pre-failsafe foods caused his autistic traits). The diet gave him the ability to be able to concentrate, think more clearly & articulate himself & allow his body to heal. Hez now 17, still has to follow the diet, finely balanced with only minor tolerances of a few moderate veg. If he has too much of one thing his speech is greatly affected - jumbled & can't concentrate. But day to day he is really happy, beautifully behaved & in great health. In primary school he had an average of 35 days off school now he might have 1 or 2. It changed his life but it also changed ours. I wish I had understood Failsafe earlier - Annette

In my late 20s I started to notice I would cough a lot after having a glass of wine. I remembered coughing a lot as a kid when I drank a certain brand of orange juice popper. Soon the wine brought on something new to me - asthma. I only recognised it because my youngest child had asthma attacks and I had learnt a lot about asthma and managing it.

Then it started to accelerate - balsamic vinegar brought on instant attacks as did vinegars in general. I figured out that sulphite preservatives (220-228) in foods always brought on a reaction.

I went to see an allergy specialist who explained I was not crazy, and that the allergy to metabisulphites was real.

She cautioned me: sometimes the reaction will be small but with time it will build like adding drops of water to a teacup. One day that cup will fill and your reaction will be big - so go carefully. Asthma is no joke and I take that caution very seriously.

I do my best to check for 220-228 sulphites in what I eat. I try to cook everything myself from raw and - bonus - I have a really good diet! Lemon juice does the work of vinegar in my cooking (fresh, not bottled- that bottle is laced with sulphites).

Now I am in my early 60s and it has become second nature to check - most of the time! My family all do the eyeroll while I explain to restaurant staff, cafes and cake shops about the allergy and ask exact ingredients - no bottled lemon juice, no vinegars at all, no wine, no fermented sauces, no grapes or anything from a grape - no, taking the grapes out the fruit salad doesn't work because the sulphite is likely on the grape skins, no dried fruits etc etc. I avoid antipasto, take my own salad dressing. My friends accommodate me when they entertain, and generally all goes well as long as I keep patrolling the ingredients. Sometimes I slip up like with Woolies mince.

Avoiding these additives for nearly 30 years has been quite a commitment and also a lot of detective work.

This week I purchased some mince meat from Woolworths which claimed to have veggies added. When I got home I realised it was a "fresh" product with the dreaded additive, see photos. I am so angry with Woolworths for once again presenting a "healthy and fresh" product which is anything but that.

BLOGsulphitessmall  BLOGsulphites02small

My daughter has developed the same allergy.

Sulphite preservative is a nasty product and should not be in the food chain. Its application is impossible to control evenly so sometimes amounts in a mouthful of food are very high.

It is all over organic food too as it is a 'natural' pesticide. And with wine it is all over wine production from the grapes on the vine which are sprayed and especially when the wine is pressed, it is liberally sprayed on the juice to stop it going off before fermentation. The vines being sprayed mean sulphite/sulfite-free wine is not a possibility.

See below for my specific areas of concern food-wise – Lana

  1. Wine is the number one baddie.  As are all grapes and grape products.  On researching wine production, I found out how much sulphur spraying goes on in the grape's growth phase and in the pressing stage and vatting stage of the wine. As a result, 'preservative free' wine is always useless, as sulphur has been added plenty of times long before that stage.
  2. I have found that, disturbingly, a lot of 'organic' produce, not just grapes, is allowed to be sprayed with sulphur as an allowable  insecticide.
  3. All sun dried  products (dried fruits).  I have found freeze dried fruits to be ok.
  4. Balsamic vinegar gives a really bad asthma attack, not sure why - I avoid it particularly. (Sue’s note: All vinegars contain sulphites, wine vinegars contain the highest doses and balsamic is made from a special variety of grape).
  5. Bread (except bakers delight/brumbies).
  6. Restaurant notes - areas to watch:
    Meat/fish marinades in restaurants.
    All salad dressings, hollandaise, mayonnaise (watch out for balsamic).
    Vinegar is added many sauces and sometimes desserts!
    Restaurant cutlery rinsed in vinegar/water mix - while eating at a restaurant and explaining (yet again) my problems with sulphur, to the kindly waitress, she alerted me to a little known fact: most restaurants soak their cutlery in a final rinse water of water and vinegar to give the cutlery a shine. It all adds to the load of sulphur we ingest.
    Vinegar used on baked vegetables to encourage caramelising etc

(Sue’s note: See also our Beware sulphites blog post)

My partner has severe eczema and I have severe hayfever. Our breastfed six month old little girl has been progressively sleeping worse and worse, some nights she was unable to sleep longer than 20 minutes at a time. She was just so restless I could not figure out what the issue was. We tried a gentle sleep program, and her settling got easier but she was not sleeping any better. When I suspected a food related issue my maternal health nurse suggested a dairy intolerance but I had a gut feeling this wasn't right. I had distinct memories of particularly bad nights after consuming tomato based dishes, sticky date pudding and apple and raspberry juice.
 
After some investigation I came across your website and it all made sense. I cut down my salicylate intake and that night she slept ten hours without any wakings. Since then she has had really good nights, nothing like the 15-20 wakings we were getting previously. Within a week of coming across your website our lives have improved vastly. I am now intending to see a paediatric allergist/dietician from your list for help determining exactly what I should be avoiding and to help create a plan to reintroduce these later down the track. Thank you for all the amazing information - Kylie

... your friend posts a photo of the frog in her letterbox with a caption that her friend is back, and you assume her friend is a neighbour who has gifted her a choko! - Sam

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... you stumble across a failsafe outfit 👍😂  lettuce leaves mod sals – Sarah

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... you get excited about pear socks at the supermarket. In the words of Anna: “That’s my fruit!” – Sam again

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... you want to buy this low sals solar powered house in Bunnings for the failsafe fairies among us 😂 (note skins on though) – Sarah again

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Tell me if I'm crazy, but I feel like every time I get a food reaction (for me it is zero energy for days on end, sleeping almost all day, brain fog, anxiety, depression and sore joints) I also get really hungry and crave loads of carbs. I’ll be feeling in pain, but starving at the same time 🤣. Open the fridge and find it’s only the things that I know will only make me feel worse that stand out and get my attention 🤦♀️.  Not sure what sort of sorcery is at play here, but it’s hellishly evil 😈. Have recently been able to re-intro gluten and so this has made me a little more crazy at the wider options. Is this just me? And what do you do to get rid of this craving?  I will balloon at thus rate. Just got over a 6 day reaction and had some meat last night now back feeling low... We initially began the diet for behaviour - but as soon as we did a whole bunch of other problems also resolved (blood noses, ongoing congestion/runny nose/cough, rash to name a few). Another weird one is that our boy seems to feel hotter. As in he doesn't want to wear a jumper when the rest of us are cold lol - Clare

I have had the same reaction reintroducing gluten after years being gluten free. Haven't linked the craving to a reaction before though - Jen

But I found the same thing when I couldn't eat gluten... would eat gf pasta, rice and potato like it was going out of fashion – Clare again

Yes 🙌🏽🙌🏽🙌🏽 It is the weirdest sensation ever to be both feeling terrible in your gut, yet be ravenously hungry (for all the wrong things too) 😭. My diet is quite unique as I’m been strict carnivore for nearly 4 years so when I reach for the wrong things, my main culprit will always be cheese 😭. In fact, I had a moment of weakness and stuffed my face full last night. Only problem,  there I was feeling better, just dead tired...but now I’m dealing with a reaction due to gorging 🤣. I’d say 95% of the time now, I’m able to refrain and just let the sensation pass, and remind myself that putting more food in just won’t help the problem. Fasting actually is the best thing you can do when you’re caught up in a reaction! - Fran

Sometimes I can’t tell whether I’m hungry or have an upset stomach or both – Deb

My 5yr old son often becomes very hungry when reacting to sals – Bec

Sue's comment: I've always found the foods you are most reluctant to give up are the ones most likely to affect you. As a temporary antidote for food intolerance reactions of any kind we generally take 1/2 tsp of soda bicarb in a half glass of water (half or less for children). It makes you feel better within a few minutes and the effects last for about an hour or two. But it should only be used occasionally (definitely NOT every day) because as well as hastening the excretion of food chemicals such as salicylates, this home remedy also hastens the excretion of essential nutrients. More in Fed Up page 222 and reference https://pubmed.ncbi.nlm.nih.gov/14428719/

When I first got sick a doctor looked at my frequent hypoglycemic episodes and diagnosed insulin resistance. I was put on a strict low carb diet. It helped because I cut back drastically on fruit and I lost heaps of weight. But I was miserable, hungry all the time. It wasn't until I discovered salicylates that I learnt I was reacting to the salads and not the bread – Jen

See salicylate-induced hypoglycemia in factsheet and many scientific references here.

 

My daughter (aged 13) currently has hives from eating Old El Paso Crispy Chicken meal kit which contains annatto colour - she ate last night. It is the only uncommon food she had eaten this week and 30 mins after consumption her face was red, swollen, hot and itchy. We had to double dose her with an antihistamine, and after consult with the doctor we have confirmed it is caused an allergy and the only ingredient we can ascertain which she would normally not consume is Annatto 160b. The hives lasted for 3 days on her face and was very itchy. We will certainly not be consuming this product again – Lisa

(The allergic issue including anaphylaxis has long been known. See factsheet with links to many more reports)

I suffer chronic migraines and my Neuro has suggested I avoid foods with nitrates. My head is constantly foggy, difficulty concentrating, always tired. Looking at getting some ideas on what to avoid - Jen

I suffered from migraines my whole life until I completed the elimination diet. Definitely nitrates for me but also other chemicals like sulphites and amines and glutamates. It’s best to do the full diet as it could be nitrates or another chemical – May

Migraines are why I am failsafe. I react to the whole lot – sals (salicylates), amines, sulphites, nitrates, glutamates – Sue

For me the migraines disappeared when I eliminated all scented products. I had no idea they were the trigger. Perfume is the most common allergen ... and can also be linked to diet – Michelle

Avoid processed meats - Sarah

I react to glutamates hugely. Seem to be fine with the others however – Sandy

My son in law tried everything for years, but once he went gluten-free he only gets migraines when he accidentally eats gluten - Georgia

Gluten for me too, so gave up and (have been) free from migraines for the last 20 years – Eunice

Amines are a trigger for my migraines look into that too - Cassie

I did the RPA Elimination diet for 4 weeks, my migraines completely stopped and shoulder/hip/neck pain dropped from 9/10 to 1/10. My physio couldn't believe the reduction in inflammation throughout my body. Found and contacted a dietician suggested on the RPA website and she is helping me do the food challenges. Salicylates are a huge problem and are the cause of my migraines and pain. Just working out a tolerable level of salicylates for me atm - Jo-anne
Personally I get migraines from cocoa (milk & dark chocolate), oranges, mandarins, grapefruit, peas, green beans, peanuts (sometimes almonds and cashews), perfumes and some scents. Once I started failsafe diet, I then started developing a sensitivity to chickpeas, Brussels sprouts, chokos, cashews- all of which are allowed on RPA diet. If I avoid all those foods it helps – Naomi

Most of the above for me, I also found after switching my breakfast from toast with butter to plain porridge with milk, it really helped. Not sure if it's the gluten, wheat, or yeast, but there has been a noticeable difference. My migraines are hormonal too, which makes an additional impact – Trish

I get migraines from essential oils, sals and amines. Most especially dark chocolate and meats also yeast extract – Lara

I get migraines from fresh tomatoes only. Not cooked. Only fresh. I can’t work out what it is in them that effects me - Kirsty

It is at least one food that you are intolerant to in my experience. But eat that and that causes migraine. You may not react for a couple of days after you eat it, or you may feel the migraine or headache coming on, almost as you eat it. Foods I avoid that used to cause me headache, and migraine are dairy (particularly cheese), gluten, citrus, chocolate, eggs, coconut.  The amount I eat makes a difference, and eating more that one of these at a time makes it much worse - Maggie

See factsheet on nitrates

See factsheet on headaches and migraines

We recently figured out that my husband's sudden bout, at age 69, of grand mal seizures and memory loss are caused by MSG.  The 3 different seizure meds they prescribed for him made him feel drugged and "out of it".  We don't know if they would have helped with the seizures because he wouldn't take them long enough to know.   Taking MSG out of his diet has stopped the seizures, most of the hand tremors he had and the auras and dizziness he would get. The work you do is incredibly important, keep up the great work! - from USA

See MSG factsheet

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Sulfites put me into Atrial Fibrillation within 45 minutes.  Liquids, like wine, will do it within seconds, foods take a little longer.  Every time I go into Afib I end up in the hospital being cardioverted (shocked) back into rhythm.   I don't think all people's Afib is caused by sulfites.  However, I doubt I am the only one.  Most people have no idea what they are and what foods they are in, so they would never make the connection - Carey USA

See sulphites factsheet

We’ve been on elimination diet 2 wks with Mr 3yr Old and his food intake has decreased considerably – Fay

Yes, the more sals (salicylates) I give my 5 yo the more food she craves. Same for myself - one of my biggest reactions to sals after challenging for a week was uncontrollable eating. It was horrible I knew I didn’t need the food but I couldn’t stop until I stopped the challenge and detoxed – Jay

10 fold less food; on low sals she is satisfied with food and content. High sals levels and I could feed a house and she still wouldn’t be satisfied. 10 years old – Tina

For me I find one of my reactions (not specifically to sals, just food chemicals in general) is an increased appetite. Which over time can lead to weight gain – Rose

Same with my child. The more sals the more food he craves! – Vera

I get very hungry from sals. Even have to get up in the middle of the night when I overdo them. I have to eat something to be able to sleep again – Yvonne

My girl is low salicylate foods for 3 weeks and her appetite has increased greatly – Gia

As a 48 yr old I discovered this for myself. Always having a battle with obesity. I too cannot find enough food in the house when I eat too many sals. Some baby tomatoes are enough to set me off on a huge binge. I love tomatoes – Isobel

I get hungry with high salicylates, but it's a 'nervous' hungry, and my food just tends to sit there, not get digested well at all. Since going low sals, the gastroparesis is improving – Don

So great to hear this, I am a hungry hungry hippo when I eat sals. Within a couple of days without my appetite drops right off, I don’t even think to eat snacks – Sarah

Factsheet on failsafe weight loss

I’m wondering what you’ve seen with your children to make you go failsafe? Was there an existing diagnosis? Did your child’s behaviours/ symptoms resolve completely with failsafe? - Fiona

Amines makes my 5yr old aggressive, sals make her adhd and very defiant. Both affect her sleep. She is fine on low chemical, above that we have a problem. We knew immediately when we tried to introduce food. My LO (loved one) has had a brain bleed and had major problems with reflux diagnosed with cows protein allergy and major intolerance to soy and has this chemical sensitivity – Deb

My 2 yo would wake up screaming at night and nothing we did would settle him. When we went into him he actually got worse. He also has bigger meltdowns and would soak through nappies, his clothes and bedding. All related to salicylates, within a week or so of starting the elimination diet he started to sleep through the night – Sara

My 2 year old had loose bowels and rash on cheeks that we could never pinpoint. Also is much calmer now - Jen

Salicylates made my 6yo so defiant. Probably didn’t help that he was eating about 5 apples a day but he is a different child. We were seeing OT’s and looking at a diagnosis for ADD & ODD and he is so amazing now – Kath
Bad eczema. Not resolved but under control – Emma

We started for eczema. Then the bed wetting and night terrors stopped within a fortnight, and she was getting to sleep easily and sleeping through. Then she just calmed, completely, and was more focused. Then we saw that her bottom lip reduced in size - we’d never noticed that it was always enlarged because it was constant. It’s now our first indication of many reactions – Tracy

My 11 year old gets aggressive with amines, he actually transforms before our eyes into what can only be described as the incredible hulk’. Sals give him ADD symptoms – Sue

Within 3 days of being on the elimination diet my 6 year old started sleeping through the night, was not as non-compliant and his stomach cramps eased considerably. Taking out all milk products from any mammal helped to cease the tummy issues and the rashes he’d get. After a period of being salicylate and dairy free we tried challenges - the instant reactions meant that for the next 10 years he remained on the elimination diet with occasional treats over holiday periods so that any reactions were dealt with whilst at home – Diana

Long term reflux and bad attitude with my 8 yr old and self-regulation/ eczema/ post nasal drip with my 3-4 yr old. We were already mostly dairy free, then saw a huge difference in these symptoms after the elimination. We started a year ago.... I notice the symptoms returning as we slip up which has happened this term as I have been unwell. It is hard and takes a lot of headspace especially with school and socialising and explaining to others. I mainly was doing it for my daughter but noticed how much my son benefitted especially with concentration levels at early intervention. He has a moderate hearing loss and it made me realise that the post nasal drip was affecting his hearing and learning. I need to remind myself of this when I get off track. So I learn all the time, I’ve realised egg really affects him as well. No one is perfect, we do our best, it’s helpful to remember that for me and my children. Salicylates and artificial colours and flavours are our main triggers – Ella

People who don't believe in food intolerances need to speak to me.

Over the last 6 months I have gradually relaxed and slipped back to eating foods I know I can't tolerate. During lockdown I reached my worst, pretty much eating everything wrong over that couple of months.

I have been back on track for a week now, after having the worst migraine (hadn't had one the whole 2 years I have been failsafe after suffering monthly for 20+ years). I decided enough’s enough. For the last 4 nights I have been sleeping through the night again. Sleeplessness is one of my reactions. I had been having broken sleep over the last 6 months, moody, irritable and no tolerance and no energy always waking tired and unmotivated. I am starting to feel myself again and it all turned around within 3 days of getting back on track. You can't tell me food isn't the problem. 😀😀 - Sarah

That thing where your housemate is in tears because her four-year-old is being so horrible, and she thinks it's because she's a failure as a parent, and you have told her about failsafe and sent her the links and she just looks at you blankly :( - Kylie

I don’t understand why people don’t listen to our experience. I want to save the world there would be so many happier kids and families but no one wants to listen 😔 - Beth

I've lived the difference it makes. Everyone I know who has tried it has seen massive improvements in their kids with bonus identification of food triggers for themselves. It's not alternative medicine - I point them to the RPAH site. There's no other obvious reason for the child to behave badly and the mum should not have to feel like a failure :( - Kylie again

I often wonder if it would make a difference if they changed prison food to failsafe... how many have been struggling with behaviour issues since childhood till it became ingrained patterns and they ended up violent because they couldn’t control their tempers or self-medicating with illegal substances?  Not to mention the children in my class who can’t control their behaviour no matter what you do! - Mary

Wish I has known about food chemicals when my daughter was four – Rosemary

People come to things in their own time - there is no shortage of well- intended and often conflicting advice for overwhelmed parents. Be kind. Be patient. 🙏 - Sue

My friend’s boy reacts to food. She said she has done a diet but when I speak of failsafe she has no clue so I'm assuming she must have done something else. When I first started it went right over my head so I don't blame anyone if they don't want to do it. Sometimes I would just rather give medication - Skye

Kids have suffered, even surgeries or significant medication and even adult friends who suffer, and yet they are unwilling to even trial this. Our lives totally changed by diet but I can't imagine putting something in the too-hard-basket if it would help my kids and family 😔 - Anne

I'm in a group for parenting spirited kids, and I swear 90% of them would be helped by failsafe. Even a teensy bit. One day, maybe people will realize how much food changes us - Irene

Often just eliminating issues like bread with no 282, artificial colours/flavours can be a good starting point. You could suggest this as an easy way to start to help tone down the meltdowns. When people see this is working, they may look further – Teresa

Have you tried suggesting that she trials just eliminating food additives? It's a much simpler process than heavily restricting one's diet – Maria

I’ve had people say, oh I don’t want Salicylate sensitivities! Come to think of it, neither do I! My husband doesn’t want pancreatic cancer either!  Hello folks step right up and choose that ailment you most prefer!  🙃 😆 I can change the colour of my hair but not the size of my feet. I can choose to treat my sensitivities but I did not choose to be sensitive? 😆 - Kimberly

Wait, we get to choose which shit we have to deal with? I'm going ailment shopping today, and plan to trade mine in on some others that suit my lifestyle better - Wendy

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Confirmation that I wasn’t just a naughty kid growing up - Ruth

It was the light bulb moment after reading this that this is it. This is the answer. It made everything my body was doing and reacting to make sense – Angela

I was mortified that we are so blind to what's in our food.. and immediately wanted to share it with everyone but especially parents! - Penny

It opened my eyes to what was happening with myself and my 3 sons. I thought I was reading it to help me with my eldest child and after reading Sue’s book I realised it was about all of us. I have loaned it to a number of people over the years - Melissa

Changed my life for the better. Finally got my baby to sleep and identified source of my own migraines and health issues – Tashi

Changed my life 20 years ago and talk about the book, Sue's and Howard's work for us all. I thank Sue silently, now weekly, for the first 10 years, daily - Nat

'Author Sue Dengate throws a lifeline to frazzled parents who suspect an association between what their children eat and how they behave' - Auckland Sunday Star Times - see book in store

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(Rumination is internal activity focused on past events. It is preoccupation with perceived mistakes, losses, slights, actions taken or not taken, opportunities forever lost.  The feelings associated with obsessive rumination are guilt, regret, anger and envy, low self-esteem, under-confidence and often anxiety)

When my 8yo son is eating the wrong food (at this stage we think gluten and salicylates) he will not stop until he gets what he perceives as revenge for something or someone that he thinks has wronged him. He obsesses over computer games and if he decides he’d like to do something he’s not happy until he has been able to do it, which may be days later. He is absolutely unreasonable, cannot listen or concentrate and seems to have no control of his emotions or actions. And then we change his diet and I have my caring, affectionate, understanding, very intelligent and helpful boy back - Sarah

I get these issues with amines. If I have overindulged I can work over any slight that I have felt has occurred against me. I’ll escalate and run through scenarios and build up from there. Issues at work are another area that seems to set me off and it can be quite mentally exhausting. If I do have a little too many amines I often isolate myself from others if I can to limit bringing others into “the drama “. Reflecting back on the years, my late teens were a particularly bad time for these issues and I was unaware of my intolerances until I was 30 - Maria

My eldest was thought to be autistic due to quite obsessive behaviors when young. I felt it was diet related (he also had many severe digestive issues) and a week on a strict diet made a massive improvement. Then we had about 3 years screen free due to obsessive behaviours and huge melt downs. He is still on a strict diet but see milder versions of these behaviours, very strong versions when he doesn't follow the diet or we've tried certain amines. He will obsess over being able to watch a show, investigate something, and needs to know how everything works. His teachers have commented that sometimes he just has to have an answer to how something works or can't possibly concentrate at all - but once answered he's calm and has gone well at school academically and behavior - Megan

This is still a problem for me and I am 70 I find that an overload of amines and salicylates and I am awake all night continually reliving things that have happened and worrying over things I have no control over - Lee

I have struggled with all of the obsessive rumination feelings most of my adult life but never realised it was food related. I undertook diet changes due to the worsening of symptoms after breast cancer treatment 2 years ago and found severe reactions to salicylates and amines (possibly more, still haven’t tried challenging all). I now know why I was ruminating. I am now strict diet, I have patience, feel joy in life and look beyond every issue to see the positive, nothing gets to me. When I am not on-diet, I can’t even appreciate my gorgeous 7 year old son being around me, I get cranky and defensive about everything. Makes life so hard - Terry

Yes my daughter ruminates. We've been very lax with diet lately and something that happened a year ago keeps coming back in her mind, where she can't let go of it. Feeling bad, sad and guilty. Over and over - Robin

Amines for me – it is one of my alerts that I’ve had too many amines as I’ll find myself remembering issues with my past career and getting just as upset even though it was 10 years ago!! - Jane

This helps me understand my mother's behaviour when she was alive. She was diagnosed late in life with celiac disease, and I strongly suspected that she, like me was dairy intolerant, and probably, like me intolerant to many other foods. I have been avoiding eating foods I know I am intolerant to, for nearly 40 years, but I couldn't persuade my mother, or other family members that this could be a problem for her despite her difficulty eating many foods. She would constantly ruminate over problems from the past, which I found very stressful to listen to. Trying to get her mind away from those problems and focus on a pleasant current situation, seemed impossible. She'd get angry with me for trying to change the subject - Margaret

My daughters looping thoughts and rigidity was much better when we were gluten/grain and dairy free - Alice

I think rumination is very common with both salicylates and histamine issues. My anxiety and rumination go down when salicylates/histamine are lower -- and go sky-high when they're not - David

I’ve definitely been calmer since being on the elimination diet. I think my teenage daughter may be salicylate intolerant, however she won’t engage with the diet. She has obsessive behaviours and ruminates a lot – Lee

Amines definitely increase my tendency to ruminate - Anne

Amines and artificial colours... salicylates too – Jay

I had these sorts of thoughts when I was undiagnosed coeliac, so for me I think it was related to gluten and extremely low iron and B12 levels - Carey

Ruminations in our house: our son goes to an annual movie/pizza night at karate. Every time he comes home from that he obsessively remembers the one time 6 years ago he hid from a friend in our court and thinks he’s an awful person. He also laments how he has no purpose in life and cries. He has now been to four of these events and always the same. Both kids are on moderate failsafe diet and our son is lactose intolerant. So it’s definitely a reaction but I still can’t pinpoint the cause because he has had other pizza at other times and not had this reaction and it happened on a couple of other occasions not associated with pizza – Cary

 

Anyone’s children have issues with wetting themselves when they eat oats? My 5 year old has SPD (sensory processing disorder) so that complicates things but he has wet himself numerous times since we reintroduced oats. I am hoping not but I can’t think of anything else. He is ok with mod to high sals, otherwise not good with amines, glutamates, egg, soy and dairy - Rosemary

Yes, for my daughter it’s the protein called avenin in oats, which is similar to gluten. Many gluten sensitive / coeliacs respond in the same way. It causes interstitial cystitis for her - bladder inflammation which feels like abdominal pain, burning and stinging urine and increased urgency and frequency. The last time she ate oats was 3 years ago. She was 5 and had just got dry overnight. The oats set her back to six months of wetting at night again even after I worked out the trigger and eliminated them again. She was already gluten free at the time and this was a trial of the wheat free or “uncontaminated” oats - Mary

Is it possible he’s in the middle of a regression stage? I have noticed that just before a leap forward in development (of an ASD child) there is often a regression that can go on for up to 1-2 months. It seems to go on just long enough that you can get worried (!) but then stops and you suddenly see another developmental leap forward. It’s like all the thoughts/processes turn inwards for a while to work on the changes. Could it be this? - Wendy

Rosemary again: last night we hit new heights so I am going to withdraw them. When you hate bedtime because of the aggression that ensues you know it’s time for a change.

Rosemary again, one week later: It was definitely the oats. After weeks of toileting issues, incredibly aggressive behaviour and difficulty with translations we stopped the oats. Two days later and my little boy is back to his normal (very active) self.

See factsheet on bedwetting

The diet has helped my psoriasis and psoriatic arthritis about 95 percent. I started the diet for migraines , bad upper abdominal pain, nausea etc. so it was a bonus really! Stick to it and you’ll see results! - Mary

Update after 5 years: the RPAH diet has helped me a lot … I still have Crohns disease diagnosis but … I haven't had symptoms since I started the RPAH diet … - Anne

I hope that is helpful. I would be lost (and probably have a medicated child) without the research you two have made available, thank you - Jan

Love your work, has changed our lives for the last 7 years 😊 - Karina

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

 

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