When I removed anything to start on low chemicals - I was sick for about 10 days! Just detoxing and lots of fatigue - but after that I hadn’t felt better for years! - Rachael

You all have helped me understand what’s going on with my child and for that, I am eternally grateful – Amber

Thanks for the shared resource! THANKS FOR EVERYTHING! – from Africa

My hat goes off to families with food sensitive individuals. It really is a struggle and painful at times, but having the whole family feeling happy and healthy is so valuable, the persistence is worth it! - Carin Clegg Accredited Practising Dietitian

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Q: Members report vision changing when off-diet, perhaps due to too many salicylates. Noticeable even with an eye test where prescriptions done with and without salicylates are different. What might cause it?

Answers:

I have trouble with blurry and foggy vision when I'm not careful with my food. I suspect the main culprit for me is gluten but also Sals. It can make waking up difficult too – Debbie

My friend’s daughter’s eye prescription changed for the better on commencement of the diet (3 weeks in). Her specialist doctor at the time attributed it to the removal of dairy and gluten as apparently both of these ingredients are inflammatory. Either way her vision improved drastically very cool 🙂 - Sonia

My vision also improved drastically on failsafe. At my last optometrist visit they refused script me until I saw a GP to confirm that the improvement wasn't being caused by any medical issues. I did notice after 10 days of sals challenge that I was getting vision issues ('floaters', sore eyes, straining) but didn't have an eye test at the time. I had to stop amines challenge after 4 days due to headaches and joint pain, so I can't confirm that they don't contribute – Laura

Yes, I most definitely do. Salicylate related - Rachel

I know When I have artificial colors and/or MSG my vision gets blurry – Amy

My optometrist was worried about the regression of my eye sight, but since I've been on the diet the regression has slowed, and I don't have days where I have tired eyes and can't see well anymore – Melissa

Q: Has anyone had tinnitus improve on the failsafe diet? - Sue

Answers:

Reducing salicylates made a huge difference for me – Susan

Yes by reducing histamines. I started with elimination diet FODMAPS, then RPAH/fail safe and finally SIGHI low histamine diet. All with a dietician and so we were able to specifically target high histamine foods and foods that liberate histamine - Linda

Yes it’s completely gone - Melissa

Salicylates for my daughter - Sara

Mine was totally cured on failsafe diet but I have not successfully reintroduced any salicylates as it is one of my primary symptoms - Tina

Several people also reported no improvements at all.

Story collection on tinnitus and ringing in the ears
Factsheet on sensitivity to sound / hyperacusis
Salicylate-induced tinnitus researched here too

Q: My girlfriend gets palpitations of the heart. One specialist says it is from drinking decaf. Does anyone else get this and believes it is allergy or intolerance? My friend is following up with a cardiologist.

Answers:

I do and it was so severe it turned into an ambulance job a few years back ... told I was highly sensitive and that was only three coffees over about 7-8 hours … I only do 1 weak decaf a day since … was pretty scary at the time too – Helen

Coffee and different decaf absolutely did this to me was so severe I had to go to hospital in ambo from food reactions (mcas) – Carol

Some decaf coffee is decaffeinated with chemicals that some folks are sensitive to. I would suggest trying decaf that's been done with the Swiss water process and see if the same thing happens - Becky

Decaf still has caffeine in it and can cause issues in caffeine hypersensitive individuals. I am one of those, so have to avoid coffee all together otherwise it gives me chest pain. If only they could make a 100% caffeine free coffee 😔 - Steve

I’m a Dietitian working in this area and I see a few patients from time to time with tachycardia like symptoms related to food intolerance. Triggers vary individually but worth trialling a low chemical diet if they have noticed food triggers or at least keep a food and symptom diary for 2-3 weeks and see if there is a pattern ? POTS is more a postural issue when standing up from a lying position - Sharon Trueman

Yep I get heart palpitations if I overdo salicylates. I had a number of visits to A&E before I worked out what was happening. For me a bath with bicarb & a glass of Eno & 2 antihistamines sorts me out 👍😉 - Anne

I have had irregular heartbeat from menopause, my salicylate intolerance, and coffee (which is high sals too but coffee triggered heart palpitations before other sals became a problem for me) - Sally

Sulphites causes heart palpitations for me along with other symptoms. Mushrooms l find very bad! - Cheryl

My severe palpitations were caused by dehydration, drinking 2 litres a day now, palpitations gone! - Rosemary

Caffeine and glutamates for me. My diet is generally very low in these but it happens after a build up from a few outings in a row with different foods/drinks/treats/mistakes - Jenny

See factsheet on heart palpitations and chest pain

See blog on dangers of licorice/liquorice and this recent story [1664] about dizziness https://fedup.com.au/sues-blog/the-dangers-of-licorice

Q: Does anyone suffer from reactions to cooking smells? Things like curried sausages, spicy beans, curry, casserole, etc. My husband does a cook up once or twice a week and our son has been wetting the bed 3 days later. I also get quite snippy and congested and struggle with sleep after he cooks these things. It’s doing my head in! Just wish hubby would let me know in advance so I can take the kids out til the smell clears 🤦♀️ - Annie

Very much YES, say members!

I react to cooking fumes. Affects my breathing and I get really itchy. Usually frying foods is my trigger. I think it the volatile components of overheated cooking fats. We don’t use vegetable oils, but even burnt beef tallow or butter will affect me – Terri

I react to cooking smells from olive oil and Ghee or butter, if it is heated too high and produce fumes and lingering odours. Eyes swells, breathing affected too, sometimes even headaches. Had an anaphylactic after entering a fish shop (UK), strong smells of cooking oil. Reaction...eyes, face swelling, then upper airway closing. Terrifying! - Mike

My husband cooks his food either on the BBQ or in the convection oven we have for him outside in the garage or on the deck! – Sarah

I actually feel sick when my hubby cooks foods like that … my reaction is immediate - Lucy

Yes ... some food smells make me feel like vomiting - Deb

I feel your pain! These smells have just destroyed our house this morning. My 7 yr old is bawling in the kitchen and I’ve been shouting at my husband every time he looks at me. It’s diabolical. He just rolls his eyes and says ‘you’re overreacting’😡😡😡😡 - Doreen

Right now I'm having a severe relapse of my seizure disorder because someone in the house fried peppers without washing them first. Making sure conventional peppers get washed makes a big difference. I lived on an apple orchard for about 8 years as a kid and the organophosphate pesticides exposure really screwed me. - Robin

YES! My son's girlfriend is vegan and cooks with spices most days and it makes me really sick. Effect on me is immediate. She knows, just doesn't believe me. I go sit outside or in my room with the door shut until the smell goes away. Very inconvenient – Shell

Sometimes during my life, smells from cooking onions, tomatoes and pork have made me react on a spectrum of churning tummy to throwing up. I take it as a warning to forget about eating that food for a period of time. Currently I am fine with some sources of pork. I have not tested as allergic or sensitive to any of those foods – Jane

My 3 kids and I get sick if we are exposed to cooking smells. Migraines, digestive symptoms, burning in sinuses and eyes - Eve

Yes definitely. Our daughter reacts to inhalants. Spices, perfumes petrol deodorants ... the list is long - Charlie

Everyone should avoid curry. It's probably the highest sal food on earth. If high fruits are 5 or 6 sals, curry is 250. It's off the charts - Joan

You need a really good kitchen exhaust to the outside & all prep work needs to be done close to the fan. Makes a huge difference. Some oil splatter will still occur & need to be cleaned from all nearby surfaces afterwards. Moved toaster outside for a few years, but brought back in after fixing exhaust fan. Also I shake out crumbs every time he uses it. Big improvement to our relationship! - Sue

Garlic is a big reactor for me as well as the spice etc - Michelle

Yes absolutely. The food doesn't even have to be cooked. My partner's orange rind in the compost bin under the sink makes me ill - Sam

Cooking onion in our house is an absolute no no! I scratch my whole face off, even with the exhaust fan up high - Linda

Thank you all for the replies! My husband rolls his eyes when I say that the food is causing our reactions and I get even more upset. I’m really grateful to hear from you all and know it’s not just me 🙏🏻❤️

See factsheet on inhaled salicylates

For failsafers with fragrance sensitivity, multiple chemical sensitivity, chronic fatigue and/or fibromyalgia see blog https://fedup.com.au/sues-blog/not-all-in-your-head and https://fedup.com.au/sues-blog/chemical-sensitivity-increasing-study

(Howard comment: cooking oil fumes contain polycyclic aromatic hydrocarbons (PAHs), heterocyclic aromatic amines, benzene, and formaldehyde which may cause oxidative damages to DNA and lipids. Cooking oil fumes may affect bronchitis (eg 2018 https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-018-5146-x) but there are many medical reports of longer-term harm too (eg https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4029104/ and https://www.sciencedirect.com/science/article/pii/S0147651321005753))

I honestly thought I was going mad with all the reactions and restrictive diet and not seeing a steady improvement. This last week has been the biggest change ever! ❤❤❤ - Jess

The information that I have obtained from your organization has helped enormously to clarify many things, which is the most help that I have received in a long time – Sharon

Thank you for all the work and advocacy you guys have done which helps us all! – Belinda

It’s tough when you have had positive experiences and others aren’t willing to listen when things have made a massive difference to our households – Andy

This is the greatest support group! It is magic 💫 – Emma

I can definitely remember my 6yo child say “mmmm, can we eat like this all the time?” I think we were eating a coleslaw, rice and chicken at the time! – Sue

Thank you 🙏🏻. It seems unbelievable that such a tiny thing can have such a big impact but it does! - Ann

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DOGWALKER: “I haven’t been able to walk on the beach for 6 weeks because I’ve been too dizzy and there’s nowhere to sit down …” .

ME: "You don’t eat licorice, do you?"

DOGWALKER (surprised): "Yes, I like it and I eat it, but I don’t eat a lot... Well, if I’m driving somewhere, I buy a packet of licorice allsorts and eat it all in one day".

ME: "Licorice can cause very serious problems, you might want to stop eating it".

DOGWALKER: "I didn’t know that... I'm 84. My doctor is very concerned …. Thank you for this important conversation".

(Sue's comment: Licorice/liquorice is definitely NOT failsafe – and it can be extremely dangerous. Daily or excess licorice – in sweets, foods, drinks or herbal medicine - can cause a range of symptoms from ADHD in children if eaten during pregnancy to severe high blood pressure or low potassium, dizziness and even sudden death due to heart rhythm problems, see our blog with the latest scientific references Dangers of Licorice )

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My boys are night and day when eating failsafe to not. Irrationality, wakefulness and insomnia, defiance and teary or hyperactive when we don’t follow the diet strictly. Calm, diligent, happy and relaxed when failsafe. I almost cry when I think what it would be like if we didn’t know about this and we were living with them eating the wrong foods unknowingly. As hard as the diet is - the alternative would be so much harder!! – Emma

Anyone have a reaction that is more emotional than physical? Something I’m eating makes me almost suicidally depressed (loss of interest in life, crying that won’t stop etc) then it abates after a day or two. It makes me wonder if my whole lifetime of depression has been one long food reaction and I’ve only connected the dots after noticing some extremes - Ruth

Responses:

Gluten heightens my anxiety and depression. Took me years of trial and error to notice the correlation - Terry

Yup absolutely, amongst many other reactions. I’m super sals sensitive - Anne

My dietitian said she had a client whose whole life direction had been affected by depression and anxiety, only to find out it was food intolerances. Get the RPAH books. Find a dietitian who specialises in this work. The Fedup website has a list of suitable people, many will do remote appointments. Follow the process - the limited diet and food and mood diary. With a bit of perseverance you should be able to find the cause - Lorraine

When I did the nitrates challenge I had full on meltdowns and panic attacks. I have a few other things going on neurologically, but noticed a huge change in anxiety and emotions when I started the elimination diet. Best of luck. 💙😊 - Erin

Absolutely! Soy and gluten. Soy is especially bad as it is used in so many gluten free products. In trying to eliminate the gluten containing foods from my diet I discovered that the soy was causing me even more problems - Helen

Chocolate (amines) does this to me - Angela

Absolutely yes! The retrospective memory of my moods and PMS and menopause and on and on says yes. The most recent memory is of eating the sausage from our organically raised pigs. One morning, after I ate, I noticed that I was quite suddenly feeling sad and tired - Sarah

My worst reaction (wanting to die…not really suicidal but just wanting to stop living and can’t stop crying) is from chocolate which I think has amines? I love chocolate and now I won’t touch it because it takes a few days to feel better after eating it – Deb

My husband has had increasingly bad bouts of depression/anger getting steadily worse over recent years. While doing the diet for our son, he reacted to nearly everything…but only the Amines give these symptoms. Not just chocolate either, old meat & bananas also set him off. However his reactions are shorter now if he makes a mistake (only 30mins to couple of hours), and he knows the reason so it helps him cope knowing it’ll wear off – Sam

Tartazine (yellow food colour) makes our son angry. Too many salicylates make the kids very emotional, anxious etc. It’s good you’re investigating the diet side of things 😊 - anon

My dad always had that with beef. Made him feel angry and aggressive - Sharl

Definitely my main symptom, wish I had known in my 20’s what the cause was - Larissa

Definitely amines for me. I'm amines and sals sensitive. Nowhere near as bad these days but amines mess with my head more. Depending on the amines too, some I get brain fog, some make me depressed and others I seem to be ok with. Chocolate and cheese used to give me a physical reaction - infected sinus with extreme fatigue like my body wanted to shut down within 30mins of eating it. Now it’s more depressed/down and cravings especially more chocolate and junk – Amy

My worst one is tomato of any kind. I feel like the bottom has fallen out of my world after I’ve eaten it. Not worth the reaction so try and not touch it. Was in hospital talking to dietitian about what I could eat and she discovered that 95 percent of main meals there had tomatoes! – Lee

Angry amines and sad salicylates for me - Helen

Yep when overloaded I can get this way and also questioned if this has been a lifelong issue as always had unexplained depression and anxiety even as early as i can remember in my childhood - Sara

Wrong food can spiral me into terrible anxiety. I think it's preservatives for me. Takeaway usually, Pizza Hut has set me off badly - Anna

Yes I have mood reactions. So does my son. Without gluten or high salicylates in my diet I am emotionally stable, with them, I was a screaming mess who lived in a constant state of confusion and always felt like a failure because I felt like I wasn’t functioning like everyone else could - Marian

I've been treated for severe post-traumatic stress disorder for years without ever seeing any progress. Last year, I was diagnosed with Mast Cell Activation Syndrome (MCAS). Just 3 days after starting the diet, all the psychological symptoms disappeared. No more death wish, no more dissociation, no more panic attacks, and above all, no more memory loss and, most importantly, my motivation and cravings instantly returned. A rebirth I'd never even hoped to experience. At the slightest dietary lapse, I fall back into a completely different perception of reality.... Dark, dark thoughts for 3 to 4 days, so dark that I forgot that « this » is not reality and that it would pass – Zara (see science links here for instance https://pubmed.ncbi.nlm.nih.gov/23688533/)

(Howard comment: This blog summarises the knowledge of this real issue with food and depression - with links to factsheets and much more information. Take it seriously and see a good dietitian if you think food might be involved).

Among the flood of very strong agreement, some other support too:

My daughter is horrific when her amine levels are too high. Uncontrollable anger, incredibly strong, for us it's really important that we keep levels low - Mel

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Yes my dietian said effects the neural pathways - Charlie

My daughter gets angry on all amines / histamine and I become really anxious and depressed, also get awful migraines 😢 - Jennie

Yes, biogenic amines can affect moods - Teresa

Yes but salicylate can be even worse - Sue

Absolutely, the theory is brain inflammation. I found the Failsafe community specifically because I googled "why does orange cheese make me angry" - Becky

Yes angry, anxious and depressed - Kay

Yep, I had to increase amines slowly to avoid the angry - Larissa

Not sure if it's amines as I react to all 3 but my temper is much shorter when I've eaten the wrong thing.. my poor kids - Rennie

Hell yes but can also be sals too. When thinking back to being a kid I would literally throw temper tantrums and break stuff in my room like a crazy spoilt child. I wasn’t spoilt or crazy but now believe that uncontrollable rage and always anxious and depressed as a child for no reason was in fact food chemicals and back in the 80’s-90’s gluten intolerance wasn’t even a thing then let alone sals and amine intolerance. So I suspect even though this only showed up aggressively in late 2014 but that I’ve always had food intolerances to some extent - Sara

I get ridiculously tired, like depressed tired – Kerin

See Amines factsheet and also story collection on anger

When I came to Jenny’s program I had been living with a debilitating health condition that was having severe adverse impacts on my physical and emotional health for nearly 25 years and it seemed the more I did to try to “fix” it, the worse it got!

I am celebrating many wins already including fewer episodes and reduced levels of pain, a significant reduction in fear about potential triggers and a return to many of the things I was denying myself including introducing many foods back into my diet and activities I used to believe caused me harm.

Funny thing is that I came wanting to heal my physical pain and in the process have delighted in improved relationships and a huge expansion in what I thought was possible for me in living my true nature and purpose including me manifesting an opportunity to share my creative offerings at an upcoming national conference.

Jenny’s program and the learnings I am soaking up were also instrumental in me navigating my father’s recent death with much grace and ease and to embrace supporting his end of life process as an honour and a privilege.

What sets Jenny’s program apart from other programs I have done (and there have been plenty) is that it has provided me with the missing pieces that were holding me back. The group format works well for me in that I’m able to learn and gain my own insights through other's sharing. The twice weekly calls, the recordings, and the guided meditations encourage accountability and a wonderful way to track my success. And Jenny’s lived experience, her depth of knowledge, her personable and inclusive approach and her willingness to make sure that no-one gets left behind makes her program an invaluable investment - Jen K

More information at Jenny Trezise's website www.aurielminds.com.au

See also Brain retraining for fragrance sensitivity and MCS – three failsafers report

I always got migraines from red wine in my 30s but during early peri menopause at 42 and, after getting chronic, daily migraines from trialing medications for my bipolar type 2, my sister suggested I try the failsafe diet. She was on it for her eczema. It completely cleared my headaches, migraines and, to my surprise, my depression, hot sweats, painful vagina (perimenstral) and needing to pee nightly 8-13 times (UTI type symptoms).

I got on some better meds but I found I was reacting to amines, all but low salicylates and some preservatives so I stayed strict for 3.5yrs. During that time I created the @coach_failsafe page on Insta and tried to inspire others with my cooking. Diet is central to my life and I know a lot of you can understand it’s not an easy diet.

I scoured this group for recipe ideas and for mentions of what could perhaps heal me. Recently I saw mention of the NLP and I got the phone number for Jess.

I contacted her and made an appointment. Initially she assisted me to clear some trauma which was a more pressing issue and equally transformative for my life. Then we got to work on the food intolerances.

I experience this work as a dual visualisation with her, a meditation or mindfulness practice, a type of hypnosis. In this process the higher learnings that the symptoms or the illness is trying to teach you are integrated and your thoughts and behaviour are restructured around these. She works on a conscious and unconscious level. It’s not a science- based approach but because I’ve done intuitive therapies before I am comfortable with this.

She does two sessions, one to gather information and ask questions. Then she goes away and figures out what processes she needs to do. Then you do the second session with her which is the actual process, both of which can take up to two or more hours.

I have been to see her several times now, for different issues, work-related and so on. I was emotional for a few days after one of these sessions because it touched on something deep but the other sessions didn’t bother me much at all. All the work has been absolutely life changing and incredibly positive. My friend used NLP for a muscle strain that wouldn’t go away no matter what therapy he tried. It works.

After the food session I challenged salicylates and had no symptoms!! I was blown away. I meant to challenge amines carefully but waited and went back to eating moderate sals and then accidentally ate a LOT of Cadbury chocolates at work oops 😬 I also had a blowout at a family restaurant event with sausages and anchovies chilli and everything and also: no symptoms!

Talking it over with my RPAH trained dietician we have decided I am fine now to gradually add back in each of the three main chemical group (sals, amines and glutamates) in three stages so that in the slim chance I do react I know which one it was. It’s looking good 😌

I’m still reacting to strong paint fumes and getting eczema from gin but I’m happy to be able to eat a whole food diet. I’ve experienced some miracles recently and I’ll take these wins!

Best of luck if it’s not for you, there are many different paths - Charlie

Firstly I just wanted to say THANK YOU! The Fed up website has helped our 6, 4 and 2 year olds (more so the older two) so much. I was literally fed up, in tears and an absolute mess, we didn’t want to medicate our kids but didn’t know what else there was to do... so I typed into google 'fed up with hyperactivity' and there it was! We haven’t looked back since! – followup from Danielle’s COURAGE AWARD story [1607]

Thankfully the behavioural changes made all the effort worth it 🙌 - Chloe

I started on Fodmap and didn't help me at all. Then was given info about of Salicylate sensitivity. Tried it and after a few weeks noticed I was feeling better. I had over nine years of thick congestion all the time and IBS for 5 months. Took a year to get rid of the congestion and 5 months for IBS to be all gone. Keep list of eating and how you feel. So lucky to have this group and the information that I got that made my life so much better! - Kathie.

At 34, this is absolutely life changing. If you ever see this Sue, you have saved my life by getting the word out – Ali

DVDcover4   (The DVD is) a game changer. After watching the video, my husband is doing the diet with us!" - Joni

I remembered the roadshow I went to years ago and heard Sue speak - I remember seeing basically a movement of mums buying things without additives years ago around the same time as the roadshow and it created genuine change but things seem to be slipping back especially with covid/lockdowns etc – Deanna

I eat a ton of home made meals very basic meat and veg not a lot of processed foods anymore and find I'm less stressed healthier and less agitated and less anxious. I can focus better - Cassie.

I usually get sick (cough, cold, fever) when I use this butter called "Amul butter"- I believe this is caused by Annatto because I don't see any other ingredients except milk , salt and Annatto. I consume the other ingredients on a daily basis with no issue. Will be careful next time when I consume something else to make sure I'm allergic to this color - Rishi from India, in USA.

See factsheet on 160b annatto

I am writing to let you know that I am having a rather severe case of hives as a reaction to a medication and my doctor tells me he has another adult patient who reacted the same.
The medication is APO-AMOXY/CLAV 875/125. I have had amoxicillin before but not the clavulanic acid. He tells me the clavulanic acid is put into the tablet to help stop people from having difficulties with penicillin.

Thought I'd bring it to your attention as I am now in my 7th week of continuous hives as I am reacting to everything, especially amines. I am trying to go back to the elimination diet but I have been living on that for the last 30 years and have worked out a nice little menu of goodies I 'allow'. I am a super responder so it may not affect others. The hives are all over with extreme burning and itching especially at night, skin is very dry including eyelids with dry eye and styes, happily no lung or throat problems. Treating with daily Telfast tablets and so far 4 sessions of a few days of Prednisone.

Hoping you can find out if this is a new thing and if others are likely to react the same. - Gumnut

(Sue's note:
Yes, we have heard of severe reactions to this new drug in children, see our blog “Unusually aggressive” behaviour triggered by new antibiotic.  Information from the Cleveland Clinic seems to suggest that people who have intolerance to foods and/or food additives may be at risk https://my.clevelandclinic.org/health/drugs/18084-amoxicillin-clavulanic-acid-suspension  - as the RPAH handbook says: Avoid non-essential medication).

I can't express how grateful I am to you for the information on fedup.com.au, I have suffered with several intolerances for about 15 years. I've had no luck or help from multiple GPs...

Gut issues are such a common problem now as is arthritis, and, as a sufferer of both, I greatly appreciate your dedication and commitment.

At 71, looking back, I can see that heredity can play a big part in gut issues.  My father had them, resulting in having a part of his bowel removed which then resulted in very painful adhesions. He was told by his doctor that he probably had cancer, which turned out to be incorrect!  My daughter also suffers from gut problems.

My son constantly wet the bed, soiled his pants and had serious behavioural issues with dramatic and stressful outcomes.  The soiling went on until he was well into his teens.  Unfortunately, at that time, there was no internet access, and no information or help available from any of the professionals we talked to.  We had no idea it could all be caused by the food he was eating. After years of being in and out of several rehab centres and courts, stints in jail and drug use, he died of a drug overdose at 26.  It breaks my heart.

A very heartfelt thankyou for everything you do - Lorna

See also story collection about doctors and food intolerance

Thank you Sue for a great website and a very well-thumbed and highlighted book ... life-savers in disguise! They've been so useful, and have helped me find safe foods to eat - Mary

I would like to let you know that you're doing a great job! - Cassie

I’m trying to buy a book bundle to give to a friend - this has changed our family's life so much, everyone’s asking us about it - Sarah

I am a Mum of 2 adult males, who both had severe behavioural issues as children. I was very fortunate to find out about Sydney’s Royal Prince Alfred Hospital Allergy Unit’s elimination protocol before my sons entered kinder and school. I attended a work seminar where RPAH spoke about their protocol. I will be forever grateful for that day. I worked in health and was not aware of these nasty additives, that I was inadvertently giving my children each day as part of a ‘healthy diet’. The change in their behaviour, health and learning on the protocol was miraculous. Straying from the protocol when eating out or when they were given additive laden foods from other children at school, resulted in a complete Dr Jekyll and Mr Hyde scenario. We were simply not able to manage their behaviour unless we made their meals at home without these nasty additives. It makes me very upset to think of all the children who are being fed copious quantities of these additives in their average Australian diet, their parents unaware of the effect on them. I also get very upset that these additives are not researched for their long term and cumulative effects on health, behaviour and learning.

I worked in primary schools for several years, assessing prep students and speaking to parents about their concerns. Behavioural problems were one of the most common concerns mentioned.

My sons are now in their 20’s. One has worked his way up to a senior management position after completing an apprenticeship and the other is completing a Bachelor Degree at University. I really wonder where my sons would be, had I not attended that seminar about the harmful additives in our everyday food.  My oldest son’s behaviour was so severe we feared for his future and even joked he would end up in juvenile detention.

The RPAH research has not only benefited my sons. My health and mental health are negatively affected by many artificial additives - Jay

My daughter is now 23 years old and no longer has effects due to food intolerances. From a very early age in fact I believe from birth she showed signs of food intolerances. (Of course this is what I know now).
 
Monique cried a lot as a baby and suffered with severe asthma from just a few months old. I sought doctor's advice - there was not much support with the excessive crying but she was prescribed medication to treat the asthma. The medication did relieve the breathing but it hyped her up and caused agitation. I did not know what to do, she was having trouble breathing and I needed to help her. At about the age of two I took her to a different doctor for what reason I can't remember but she was really sick and he even considered that she may have Cystic Fibrosis due to the severity of the condition.
 
I breastfed and I now believe due to her food intolerances that breastfeeding may not have been the best option for her. Our diet often consisted of tomato based pasta dishes, and also fruit and vegetables that I now know have a high salicylate content, which of course would have filtered to the baby.
 
As the years passed we were dealing with behaviours of agitation and frustration. The outbursts and nature of the behaviours was much like the description on a child with some of the conditions that have been given a name these days. (eg. A-D-D and A-D-H-D). I never at any time considered that she suffered from these conditions and as a mother I always felt compassion and concern, and desperate to find out what was causing this behaviour and severe agitation in this beautiful little girl. The agitation and anger often started with her rubbing her nose and just a shift in mood which I learnt to recognise. If I caught it early enough I found sometimes milo drink would neutralise the effect so that I could reason with her and help. However many times she was anxious and agitated before I realised what was happening and then she would refuse the milo.
 
I knew she did not want to be like this. On the rare occasions that I would address the problem with a doctor in many ways I was relieved that a diagnosis was not offered because I did not want her on medications that are usually prescribed for the aforementioned conditions. Nor did I believe that medication was the answer.
 
After years of patience and understanding, dealing with the situation, I also saw the development of some social difficulties, things like feeling targeted and being extremely sensitive. When she was 10 years of age I decided I needed to address this once again.
 
Here is what turned out to be the answer:
 
I had made a doctor’s appointment to have one last go at getting to the bottom of this. I once again hoped the doctor did not suggest medication because even though I wanted help I really did not feel comfortable going down this road.
I was finishing my preparation to leave for the appointment and on the radio I heard Sue Dengate talking about food intolerance. Sue mentioned SALICYLATES, immediately I found a pen and wrote it down in the best spelling I could create.

The doctor still really did not have much to offer. So I asked him "have you ever heard of salicylates?" He said he had, so I further asked he had any lists of the foods that contain salicylates which fortunately he did and gave it to me.

Reading about salicylates and learning where they are helped me to eliminate the foods from her diet and this was the answer. Life soon improved for everyone especially Monique, including no more asthma. This is my story and I wish to express my gratitude and thanks to Sue for her wonderful work – Annie (from 2011)

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G'day,

I found your capsaicin trial on the Food Intolerance Network. Sorry but I have not followed the schedule outlined in the trial.

I'm writing to tell you that your discovery has changed my life.

I've had this problem my whole life but the symptoms got worse as I got older. They were so bad I couldn't follow the RPAH guidelines. Potato, leek, pears, etc. would trigger my symptoms at the smallest amounts e.g. I could only tolerate 20g of potato.

The symptoms I experienced, mental and physical, were severe. They've left me unable to work for the past 9 years and caused the loss of many relationships. It left me unable to live.

I found your trial around a month ago and started the next day.

I don't have the words to describe the difference it's made on my mental state. I want to say it's given me clarity but that really undersells it. My whole perception of the world has changed and I can feel consistent happiness for the first time in my life. Ever.

I have energy. I have strength. I have coordination.

I can now eat salicylates in whatever amounts I want with no repercussions.

I've been able to start working again too.

I can't thank you enough for what you've given me. Fingers crossed it keeps working.

Thank you thank you thank you thank you – Paul (30 yo Australian)

See factsheet that triggered this remarkable journey Capsaicin for management of salicylate intolerance

(Howard note: this is an unusually effective intervention. We have found that children frequently can't tolerate regular capsaicin and many adults get only moderate benefit from this intervention)

We have experienced a fabulous side effect of the elimination diet (doing as a family, the children do not know we are doing it).

Our sauces / oils drawer now only contains 1 item now, which I've realised having so many was overwhelming for beginners.

Now that there are reduced options visible, our 9 year olds have become very interested in cooking and experimenting on their own.

Having 1 oil available is so much simpler than the multitude we usually have. Choosing from salt, garlic and chives as seasoning is enabling creativity, testing and confidence with flavours.
I love this unexpected surprise 🍐🥔🥬🥩👨‍🍳👨‍🍳🍳 - Betty

I am a 53 year old woman. After completing the elimination diet I have learnt I react to the "natural" colouring 160b.

Within 24 hours I suffer from terrible migraines with noise and light sensitivity, nausea and high level head pain. These migraines last 72 hours. I am bed bound and incapacitated - Sarah

See 53 pages of reactions to this "natural" additive

A common commercial hummus. Didn’t eat it for months, then re-introduced it. Nasal congestion and irritation! Finally pinpointed the culprit. Preservative 202.  Great website and thanks for sharing all the info. Really helpful - Kristy

(See similar story about potassium sorbate preservative in hummus [1466] )

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I want to thank you, once again, for giving us life changing support.  We are truly grateful for the time and effort you put into helping persons like ourselves who are desperate for answers, to find positive, life-changing solutions!

I just had to share with you what has happened since our last email. And just in case you want to publish it, I will start from our earlier experiences with you.

Back in the mid-90s we had 2 severely intolerant children. They lived on potatoes, chicken, lamb, carrots and rice.

Their reactions were vast... severe stomach cramps, vomiting, ear infections, sleeplessness, eczema, hyperactivity, anger, anxiety, diarrhea, constipation, snoring and noisy breathing. And lots of crying.

One day our GP phoned me. He'd seen a book called Fed Up by Sue Dengate and thought it would be helpful with our children's intolerances. If only every GP prescribed this book! It became our lifesaver, our go-to.

On the diet, they were calm, happy, restful, healthy children. People would ask us, don't your children ever fight? Not on the diet. Ever.

Our next 2 children had similar food intolerances. Over time they have all become more tolerant to different foods. But we have remained very particular about avoiding certain poisonous additives eg 160b and the 280 preservatives which without fail cause issues.  Even for the adults in the family.

Fast forward 25 years ... with hardly a visit to the Doctor for any of us and now a grown family, regular visits to the Fedup website to keep up to date with changes in food laws and also to check the failsafe additives list!

But very slowly, very subtly, things started to change. So subtly that I never connected the changes with food.

Our happy teenagers became sullen, grumpy, argumentative and restless.  We all suffered skin break outs. Anxiety levels were high. I felt like I had the acne of a teenager, the nighttime worries of a 3 year old plus anxiety. From sleeping solidly all night, I started hearing every change in the weather, and woke with every vehicle and every animal noise outside. And then had difficulty going back to sleep. It's just part of getting older I told myself.

My husband developed severe insomnia (literally wide awake all night long,  night after night, and often even sleeping tablets had no effect), along with a racing heart.  Part of old age we thought. And the doctor agreed... racing heart - you'll just have to learn to live with it.

After months and months of accepting this "new normal" but questioning it all in the back of my mind, and often wondering, what am I doing wrong with our diet? I would look at my kids that had been so happy and think, what are you eating that's making you like this? Finally in desperation I once again contacted Sue Dengate.

She very quickly picked up that we had coeliacs in the family and this was her reply:

"There is now a "Clean Label" movement by the food industry to remove additive numbers (such as 282) and chemical sounding names (such as preservative calcium propionate) and replace them with innocent sounding names (such as cultured dextrose, see https://www.fedup.com.au/news/blog/caution-cultured-dextrose). This has happened in gluten free bread quite recently and quickly, so I wonder if  your husband is currently eating the bread preservative without realising it? In my experience the bread preservative can be the very worst of additives, eaten regularly every day and often causing major changes"

Thank you Sue from the bottom of our hearts. That was exactly it. I was not up to date with this clean label movement and in all of my label checking we had been deceived. All our lives we had avoided 282 like the plague... until they gave it an innocent name. Which took us on a very, very unpleasant detour.

Maybe it happened so we can share our completely unintentional preservative journey and save others from the nasty effects of propionates.

It's been a long, difficult journey back to the road we originally were on. Many months of consuming cultured dextrose left damage that has been hard to undo.

The kids recovered fairly quickly, but my husband ended up doing the complete elimination diet and probably confirmed another of Sue's questions...

"Given that your children were "intolerant to almost everything", they probably inherited that from someone - possibly your husband. So I'm wondering whether he would feel better on the full elimination diet."

On the full elimination diet, he has come off all his sleeping tablets, and no longer has any heart issues. His skin has also cleared up.  This was a massive breakthrough! He absolutely hated having sleeping tablets.  Between those and insomnia and a racing heart, his quality of life was very poor compared to our pre-preservative life when he was fit and healthy and had no sleeping issues.

We believe that the months of consuming cultured dextrose daily, caused the major changes to his health and worsened his food sensitivities to the point that he became intolerant to almost everything!

Surely our story can convince anyone with health issues to take a good look at their diet. After our many years of food experiences we all firmly believe that most health issues can be resolved simply by diet!

Thank you again Sue and keep up your amazing work – Lorna

See hidden additives blog with links to more science

Does anyone else have mood swings as a major food symptom? I appear to get drastic mood swings when exposed to certain foods, the reaction is delayed but severe and lasts for days - Zoe

Yes, absolutely. That and sleep disturbance are major symptoms for me - Dean

Main reason we put my son on this was to manage emotions and behaviour -  Penny

Yes definitely. I find tomato chocolate and cheese are my worst triggers, and anything with preservatives in it. Also no sleep and very anxious - Lee

Not so much moods as brain fog which sort of slips over to appearing to have a mood 😳 - Jill

Sadly yes - fresh dairy cause me behavioural problems, violent & aggressive alternating with sadness (like depression) so much that I’ve been df for 40+ yrs – Josie

I fear my 3yo could be developing a stutter! Is this a symptom of eating something non failsafe? - Sam

For my daughter it’s glutamates and also a lack of zinc and B6 contributes for her. It’s amazing how quickly it cleared once I got those 3 things under control - Emily

I know I stutter worse if I’ve overdone salicylates or perfume exposures, so yes, it could be anything non-failsafe - Carmen

Some children also just go through a phase of this as they are learning to speak. Their brains are going quicker than their skills allow them. Both my girls went through this and neither of them have food intolerances. They just need patience - Maria

Mine too went from articulate toddler to clawing at her mouth to get her words out. Mine needed treatment which was successful although lengthy – Greg

My kids both stutter when amines are high. Speak beautifully if they are eating well - Ella

I find this so interesting! Some days I have real problems with speaking. My tongue gets all tangled up and it takes me 3 or 4 tries to get the correct word out. I feel like an idiot! I just put it down to old age and the brain not working properly. I also get some forms of migraine where I completely lose speech for about a half hour – Josie

See blog on Diet-induced stuttering with link to factsheet

 

What are your symptoms when you don't eat failsafe? For me I just feel more irritable and emotionally worse. I think I get itchy skin because of it and also I had restless legs syndrome (RLS) but more due to anxiety – Leo

Bloating, itchy skin, facial flushing, restless leg syndrome. The RLS is the most random symptom isn’t it lol. At first I thought my RLS was due to me coming off Zoloft but I’m back on them again and cut out salicylates and it’s completely gone away. I challenged salicylates and it came back later that night-super weird !! – Lydia

For me it's nausea, insomnia, extreme fatigue, headache with visual aura, bowel movement alterations, stomach cramps, restless legs, mood swings, rosacea, difficulty swallowing, brain fog, cough, and bloating. I think that's pretty much it (!). I may get several at the same time or just one, depending on the day. Some foods trigger some of the symptoms more than others - Terrie

Salicylates start off a sore throat earache and rhinitis and builds up to wheezing and breathless. If amines it’s over emotional cranky intolerant angry. It was so good to find out why I’ve been this way my whole life. I’m 62 now. I’m not just a cranky bitch after all - Renee

Oh gosh, our amines reactions are the same! Honestly don’t know how my husband can stand me – Anne

Bloating, gut cramps, itchy shins, itchy back, itchy ears, irritable – Leah

I endured pain in my hands, fingers for 6 years. Had tests for arthritis which were negative. It got so bad at night I couldn’t pull the sheets up over me in bed because my fingers would not bend. Nothing helped, until I monitored my eating habits.

I stopped eating everything that came in a can, tin, packet, or sauce bottle and started preparing my food from fresh. My fingers, hands, pain subsided. I then found this group, and found out I’m salicylates, amines, gluten, and dairy intolerant. The pain only returns if I mistakenly eat something I shouldn’t – Kerrie

See Arthritis, joint pain and diet factsheet

Years ago, a new mother (I’ll call her Beth) sent us a list of what she ate while trying to see whether food was causing her baby’s constant crying and inability to sleep. The problem turned out to be “cultured dextrose” in their daily bread. “But I thought cultured dextrose was a type of yoghurt!” Beth explained. Like most consumers, she had no idea it was another name for propionate preservatives such as 282 that she was trying to avoid.

This year, Beth contacted us again. Her daughter - now 9 years old - had just been diagnosed with autism. In the meantime, Florida researchers (Abdelli et al, 2019) had warned that propionate preservatives in early pregnancy could be linked to ASD - Sue Dengate.  

More info in our blogs: Harm from bread preservative confirmed and Caution cultured dextrose

I first became aware that annatto was a problem when I was in my thirties. I have always had sensitive skin but really couldn’t understand why I was still getting large, painful pimples so long after my teenage years (and still getting them at 74 if I don’t read the ingredient info carefully). A friend suggested that maybe I was allergic to cheese and so, looking carefully at cheese labels in the supermarket, I noticed the additional ingredient, annatto. It was a lightbulb moment. I then looked carefully at the ingredients of everything every time I went shopping and was astonished to see how often annatto was added to all sorts of products. Now in Europe and UK it is not added because of the allergic reaction it can cause, but I now notice the use of ‘paprika powder’ instead and this also has the same effect on my skin. The spots that I get are always situated around the mouth, nose and chin - Deborah UK

Our family has used the Failsafe diet on and off for a about 12 years now. My son was persistently unwell when he was young (from about 18 months plus) and the Failsafe diet was the only thing that worked. You know how difficult it can be to manage this diet in the culture that we live in, but the turnaround in his health was amazing.  He went from being a kid covered in eczema, non-stop ear infections, terrible asthma and limited speech to a well and happy boy.

At the time I used to think "Where does this food sensitivity come from?". Now I know. It's me! For the last 18 months I have used the Failsafe diet to help me through menopause. My main symptoms have been anxiety (from salicylates) and migraine (from amines). The diet also seems to be assisting with my blood sugar regulation at the moment (I've had bouts of hypoglycemia). If I was not on this diet I would be on all kinds of medication and I would be continually distressed. As it is, I feel calm and well while riding through these changes.

Your persistent work in this area is to be highly commended. Our family's health and well-being are due to your efforts. I am deeply grateful to you - Melissa

I used to be very moody and had a lot of anxiety. My husband just thought I was a pain in the butt haha. My anxiety and mood swings left after about 2 months of strict failsafe - Louis

My little guy barely tolerated food at all until after 2 and RPAH was a massive game changer for us. It’s not a complete solve but it set us on a path to finding more foods he can tolerate – Denni

We are on our 3rd week of strict elimination diet and free from soy, dairy and gluten. Finally - 3 nights of this week his sleep has been AMAZING! - waking only 2-3 times a night and going back to sleep easy with quick side lying nursing (instead his usual 10 times wakings, crying, being squirmy and restless, needing to be held and walked). So grateful to Sue Dengates Fed Up book and this group! 💕 - Nellie UK

Just thought I'd encourage others who may be new to FAILSAFE or are finding the process challenging.

We began this journey for my son almost 4 years ago. While it has helped him beyond measure and I will be forever grateful that we discovered the cause of his challenges, it hasn't been without its battles and has certainly be an emotional roller coaster.

Over the years we have tried to begin the process of liberating and building his intolerance but each time we were unsuccessful. Particularly once he started school (despite them being incredibly supportive) and spent more time visiting others, it became difficult to determine what he was being exposed to that was causing reactions. So many "mystery" sources meant there was never room in his bucket to try extra things.

BUT...finally we have begun to have success. After recognising that a major source of reaction seemed to be coming from bark in the playground and/or climbing trees at school, we trialled wearing gloves. Since then we have seen him overcome what, last term, had become an almost constant cycle of reaction.

Better still, last Friday he was able to have half an apple unpeeled without any symptoms.  He also had a sausage (containing sals and 223) and a marshmallow (without my knowledge) on Sunday and has also succeeded in tolerating that.

With the help of the gloves, we are now thrilled to be able to begin the process of liberating and trialling new foods.

I am also excited to see him feeling so much better in himself, to be able to better navigate challenges AND have also noticed that his reading has improved. He is also making great progress with his music thanks to his increased level of focus and concentration.

I definitely encourage anyone who is having doubts or feeling disheartened by setbacks they encounter to keep trying. It really is worth it - Becky

I have a 22 month old who doesn’t react well to Kids' Panadol (he gets restless and angry, different to the symptoms of being unwell). I suspect like my 4.5 yr old son he may be sensitive to some of the added ingredients. My older son reacts to additives, glutamates and a build up of sals, he gets defiant, negative, angry and moody. Thank you for the work you do! It has been a life changer for my older son and our family! - Sarah :)

 

I am currently in the baseline part of the elimination/failsafe diet, keeping sals predominantly low with the occasional moderate. I have found without calorie counting that I have lost about 8 kg in 5 months - Joan

See factsheet on failsafe weight loss

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My son who is 16 has suffered from gastric issues his entire life. We had no idea why and he has had tests done etc. When he had COVID a couple months ago we gave him orange colored vit C gummies. He got really sick but I just thought it was more symptoms related to COVID. He was not feeling well recently and gave him the same gummies. He again got very sick. We looked at the ingredients and found Annatto. We started researching it and was shocked and knew instantly by the foods annatto is in that this is the reason to his issues that mimic IBS. Though I am glad to know of his allergy I am shocked to see how many foods have it in them.

Thanks for your research on this so we have an answer and can eliminate annatto from his diet - Jen.

See factsheet on annatto 160b

I recently discovered Failsafe and found it profoundly helpful. After removing the Calcium Propionate from my son’s diet, he was able to read books again. He has M.E., diagnosed 8 years ago. He lost the ability to read books, so this was like a miracle. Small change, big impact.

My brother also stopped buying bread with calcium propionate, he was feeling exhausted all the time and suffering from brain fog. From the first week he already felt the difference – Marcia (UK)

(Sue comment: what an amazing story, 8 years of ME/CFS and non-reading due to propionates!)

See blog on confirmed harm from bread preservative

And a similar report on diagnosis of CFS really due to 282 propionate

I am in day 4 of my elimination diet… my blood pressure has gone up to 160/95 … normally my BP is about 138/90. Borderline high.

Day 9 - My blood pressure is actually better than before the diet ... Now it is averaging 125/80.

Day 14 - big news! …I was buying my chicken and beef at my local grocery store and it must all have been cryo vacuum packed. Everyday I got sicker and sicker … I am obviously a big, big amine reactor. I had chicken twice yesterday, so today is my first day off of cryo-vacced meats, yet I am already a little better.

13 months later -My blood pressure is fine. I am fine. My problems were all related to eating supermarket meats, which I found were all at least a month old. Once I went back to eating (fresh) plain beef and chicken … my symptoms all cleared up - Bradley (from 2007)

Ok so it’s only day 3 and I feel like giving up - that must be a record, right?  My son 7’s behaviour has gone through the roof since starting and I’ve no idea why. My 4yr old who doesn’t have to be on this diet (but is because there would be no stopping my son if there were foods in the house he couldn’t have) hasn’t eaten a proper meal in 3 days. She is fussy at the best of times but eats well enough. She is absolutely refusing any of the dinners I’ve cooked. Every spare second is spent on food prep while wrangling a busy toddler only for no one to eat what I’ve made. The kids are living off pear muffins but I’m freaking out. Should I keep going? - Kirsty

DK00A

In response, among a lot of great practical advice, were these encouraging comments:

It's really tough at first but if it works, it can be a life changer. Seriously. I'm not exaggerating – Terry

We found that the foods our kids were super keen to eat (i.e. your toddler with tomato dishes) were the ones they shouldn't have. Fed Up talks about this, it's like an addiction. Our two kids of similar ages to yours didn't want anything we fed them except the sugary things to begin with, and we'd come from a very nutritious whole foods diet before that. We stuck with it, and they are different, more composed, happier little people now that we have their food sorted out. Stick with it, it is so worth it - Sara

Weeks 2-3 were a nightmare for us ... totally worth the persistence though and ended up being more important that they ate something rather than what they ate for those few weeks until they got past withdrawals (lots of homemade nuggets and chips) and then had a complete change in behaviour 😊 Hang in there - Kerry

They’ll get more adventurous once you get through the withdrawals, but I found behaviour during the first week or two of elimination was far worse than whatever was going on beforehand xx - Helen

Good luck keep at it, it's totally worth it - Sharn

I got told withdrawals are usually day 3-7 and it would be hard and to push through and we were better off the next week. My Bub was falling through the percentiles and I was terrified when she wouldn’t eat anything other than pear for days but now she eats all of it and is climbing through the percentiles - Eli

I had terrible symptoms at first and it took me a long time to get to baseline but it’s so worth it to find out what the culprits are - it could be just one food group! - Kath

Just keep at it. I cried a lot at the beginning and it felt like all I did was cook and a lot of the time it didn't feel successful. We had horrendous withdrawals with our oldest son. But it was wonderful to get through that and have him hear me and for the first time say 'what did you say?' – Sue

FINAL WORD from Kirsty again: “I’m overwhelmed by the support of this group. I was ready to give up after a few days but the encouragement, advice and suggestions have kept me going! It’s awesome.”

See withdrawals factsheet

See how to start failsafe eating

Liz asked “Did anyone else get a little anxious over starting the challenges? My daughter starts the salicylates challenge today and life has been so nice and uncomplicated since we started failsafe eating”.

Comments:

Yes! I really don't like it when I feel sick again while doing a challenge! But I guess it helps me remember how far I've come - Dea

I think anybody who does the diet gets nervous when they do the challenges - Melissa

Yes! I like the accidental challenges better – Amy

I was after the sals challenge - big reaction from that (hives, congestion and reflux for sals. Rash over my face for amines. Pretty sure my main triggers are processed tomato and capsicum generally, but starting reintroduction phase now). I didn’t want to start another challenge - Val

I was nervous to but in the end my son got through Sals and Amines then had a massive Behavioural reaction to glutamate, so in the end we could add back in lots of stuff and be really targeted on what we avoid, definitely worth doing. And helped us in the long run. Good luck! - Anne

Yes it’s a horrible feeling. I struggle with this with my son but the joy when you can add more foods in is worth it - Helen

Yes, I had a reaction from a challenge on the weekend and had forgotten how rotten it felt – Lee

I did the big food groups with my son but then stopped as it was horrible for everyone when he had a negative reaction. Good luck - Nickie

I had IBS (lots of other issues, too) and my Dr. put me on the FODMAP diet. I didn't find it to be helpful for me. But posted on the FODMAP Facebook and a wonderful Dietician told me that I probably had an issue with "naturally occurring food chemicals". I asked him what food chemicals did he think as I was going to my own doctor. I had posted what I was eating and my issues and he said Salicylates, I hurried and printed out the food list and WOW! What a great change in my life!! So lucky to be pointed to the issue that I had - life was not good before I knew about Sals! Diet helped me to get back to normal. I blame my Cancer on all the issues that I had being Sals Intolerant! So very thankful for finding this wonderful site for all the help! - Karen

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Help! request from Liz:

We have been failsafe for about 8 weeks and my daughter is doing amazing. She has lost over 10cm in bloating on her waist and can finally sleep through the night without constant sinus problems. She passed the sals challenge no problems and we are waiting until after Christmas to do the next one.

The problem is school holidays 😩 we are going away with 4 other families for over a week. I definitely don’t want her to miss out on what all the other children will be having (ice creams, trips to the bakery, restaurants, popcorn at the movies….) but I also don’t want her to miss out because she is feeling sick. I guess I’m struggling to get me head around how I can find balance.

Do I throw caution to the wind because it’s only a week or do I try to stay on track and help her make the best of the situation? What is everyone doing over this crazy period?

Supportive answers:

We stay on track. It’s not worth it for us. We have failsafe treats available etc - Carie

I'd stick to it and keep going with the challenges rather than having to go back to elimination for another 3 weeks. If she passed sals may pass another one easily. Just have lots of Failsafe treats available and give her those instead – Brin

Keep with it. Have plenty of alternatives on hand. Explain to her that even though she can't eat everything they do she can participate and that is so much more fun than being unwell and left out. Good luck 🍀 – Karen

I'd keep at it, but perhaps there are sals treats she can have? Eg new fruits and gelato, or naturally coloured jelly snakes? - Celia

At the movies she might be able to have plain chips depending on what ones they sell. If the others are getting icecreams get her a lemonade icypole (some non-strict fs ingredients but not too bad) or a dixie cup. Schweppes lemonade for soft drink. Maybe make some fs treats you can share with the other kids. Buy fs pre-packaged biscuits, lollies – Angie

Easier to keep going. If you make it ok to eat the wrong foods, why would she avoid them later, if it is something she really can’t have. Even the adult in our house, when on fs elimination, kept saying ‘can I have this’, so often, trying to push the boundaries, it nearly drove me crazy - Lisa

I would just keep going. It took my son up to 6 weeks to be back to baseline after some mistakes and challenges – Steph

We just bring FS treats wherever we go that I know my youngest can tolerate. He’s been strict to moderate for 4.5 years - Maria

We always stick to it. My kids still bring up the times their dad said have whatever and that was several years ago! They push boundaries. But I always have our treats etc made up to go away – Mollie

I try to find a new treat or two, or even stop using one now so it's more exciting in a couple of weeks when we start using it again. Treats that she can share with others are a big hit, because then others are eating what she is. Current go-tos for that are milk bottles, Pascal marshmallows, French fries chips and Parkers pretzels. I always have mini packets of foods, as then it feels the same if other people have packets, and the packets add colour. All the best! – Amy (more below)

  • Homemade icypoles (I just bought the Cherub Baby reusable icepole pouchs to use since they have coloured prints), while on holidays you can water down Heinz pear jar and freeze that.
  • Choosing the right dinners I find more important than lunches/breakfasts for my daughter. Chips and bring homemade nuggets or just poach chicken pieces, served with Heinz pear as dipping sauce. Current favourite is self serve meals, e.g. wraps and toppings, rice bowls etc. She doesn't mind missing some choices if she can make her own from 4-5 of the available toppings (though we never put her old favs up like pineapple).
  • In terms of treats, like if the others are sharing lollies or chocolates, I have her lollipops or the milk bottles, but I also have a swap box that has stationery, little cars, balls, mini lego sets etc. So she accepts the food that's handed out, excitedly gifts it to her dad and then gets to choose and item or two from the swap box. I'll be packing the box for our camping holiday.
  • Just be aware that if you choose not to stick 100% and stray too far, it might take you weeks to hit baseline again and therefore longer to be able to do another challenge (speaking from experience!) so I'd stick as close as possible to it, and choose treats wisely, e.g. only every second or third day, from the next column up, but definitely avoid anything in "very high" category.
  • Only other piece of advice is be pre-emptive. See or hear other people getting food ready? Offer to add something to their Platter so she has something she could have. Or if it's something she'll struggle knowing she can't have, then it's the perfect time for you guys to have some family time and go for a walk or something so she doesn't know what she's missing out on. Also making sure they aren't hungry means less likely to be tempted to eat stuff or get caught out and have them eat a big serve of risky food. So we make sure any meal we have control over is full failsafe and filling, so that her bucket is as empty as possible so other things *hopefully* don't fill her bucket up.
  • Also make sure all meals and snacks are done on time, and offered even if she doesn't ask (e.g. busy playing with cousins) means she won't be hungry plus higher chance I can offer the rest of the kids what she's eating.

See also blog Holidays are a good time to do the elimination diet

Back in the late 80’s I was dashed to RPAH after I over-indulged on cinnamon candies. I was found to have severe salicylate intolerance and have pretty much remained on a very restricted diet for decades. Dr Swain was just beginning to put out recipes. 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! In the last few years, I have also been diagnosed with several auto-immune disorders and wonder if there is any research connecting the two. THANK you so much for your amazing work. So many more people are now aware of the dietary restrictions of salicylate intolerance - Marie

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I found recently that I am definitely intolerant to annatto in cheese, I normally buy white cheddar. But for the second time in six months I bought Red cheddar by mistake and both times became extremely tired to the extreme that I could not stay awake and completely exhausted for 24 hours. But luckily no long term effects - Ron from Ireland

My daughter has an intolerance to 160b. If she ingests even the smallest amount she will get severe stomach pain and constant vomiting for around 6 hours. She has not had an attack since we removed it from her diet - Sarah

See factsheet that reminds us that you can get intolerance and allergic reactions from this natural colour

As a naturopath and nutritionist I thought I was as conscious as I could be in terms of what was healthy and what was not around food. But then my youngest child was unable to be enrolled in school and exhibited severe behavioural disorder and emotional dysregulation and the only thing that kept him settled and life somewhat normal was the "failsafe diet".

Between 2012-2016 we worked hard on sticking to failsafe foods for the whole family and it was the best decision I ever made. I fought the school system and three schools later, was able to have my child enrolled in a regular class without any need for formal diagnosis (which I flat out refused). He is now 14 yrs of age and thriving academically and socially.

We transitioned to regular style of eating (minimal processed of course) around 2017 and haven't looked back. I believe the strict break healed his gut completely without intense gut healing protocols and tonnes of supplements.

By contrast many families I know who wouldn't touch a diet like this with a barge pole have children who still have high needs and require special classes and schooling and are years behind my son in mental cognition. I sing the praises of Failsafe to parents far and wide.

My son has a future because of failsafe! – Vicky

Thanks for always keeping us safe and safer!! Love the community, how we can all help each other do better. Commend you both for all you have done to start this and keep it going – Diana

My life is definitely better because of you! - anon

Thank you for all the work that you and Sue do. I'm just finishing the additive challenges that we have chosen to do with our 4 year old and hoping to get to liberalisation before starting school next year, and have a 1 year old who is definitely Salicylate intolerant amongst a whole lot more. Without your work, there is no way I would have survived the past 7 months - Amy

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 Sedelies, dietitian in Berlin, Germany

We are from NZ.  I spoke to you at least 20 years ago on the phone regarding our 2 children who were intolerant to almost everything.  Your  support and website information has been a go-to and a life saver for us ever since. Our children have grown out of a lot of their intolerances and over the years I have become less obsessive with ingredient checking.  We live gluten free due to a coeliac being in the family and all of us feeling better without gluten in our diets ...We are very aware that 282 is the worst of all additives, so I'm very grateful for your heads-up...Sure enough, cultured dextrose is listed on Pam's Gluten Free bread that we have been having this week. I have also googled the ingredients for the Vogels GF loaves we normally buy, and it's in those as well!! I am so glad you mentioned it. I've just fed the remainder of Pam's loaf to the ducks …" - Linda

See why to avoid 'cultured dextrose'

Q: When suffering from the symptoms of a food intolerance over a long period of time are there known detrimental effects on any other parts of the body like liver, kidneys or nervous system? – Anne

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I suffered for 40years before I discovered my intolerances, my health seems to have reversed. I’m in excellent health now. I was on prednisone for salicylate induced asthma, drugs for reflux & skin issues. Now no drugs at all. I’m still pretty sensitive, I can’t eat fruit ever, but my pretty dramatic symptoms (throat spasms, loss of vision) clear up pretty fast once I started FS, the challenges where really tough. It changed my life - Kath

I also feel so much better since going on this diet – Sharon

You’ll feel much better and may be able to ditch some drugs that were previously helping you deal with symptoms. But unlike coeliacs who’s gluten intolerance actually causes stomach damage, at this stage there is no evidence to suggest that other food intolerances cause damage to your body – Jody

My liver function wasn’t optimal and I had fatty liver - yet never had alcohol. I was also puffy and looked unwell. My iron level was way too low (7, when meant to be 45-55) and I was permanently exhausted. 6 months after being on failsafe: normal liver function; 15kg lighter; headaches gone; no puffiness; iron now normal – Susan

I’ve had chronic sinus issues my whole life. Was going to have sinus surgery due to CT Scan and severity of symptoms but I changed my diet (no wheat or dairy) and my subsequent CT scan showed much healthier sinuses. I also had positive Anti Nuclear Antibodies (ANA) in my 20s, which disappeared when retested last year (15 years on). The body and brain are so fascinating - Katie

Q: Has anyone had trouble with thoughts...like out of body experience? And thoughts not coming in chronological order and just all crashing around? My DS20 is having a terrible time! - Janine

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Salicylates trip for me - Narelle

Yep salicylates make me feel like I’m in a cloud & not really present. Makes me feel like I’m on the outside looking in 😒🙃 – Abbie

I was a complete space cadet on amines, turned up to a massage that had not even been booked, but really thought it had. Put wrong contacts in wrong eyes. Super tired and spaced. I get really cold too, when I eat the wrong thing ... - Peta

I get the same thing! Brain fog, feeling fuzzy or “feeling out of it” I call it. It’s so frustrating but so glad I am finding relief now I am on elimination 🙂. (And also glad that we can all understand what we are going through. It’s tricky explaining to people who don’t experience it) – Pam

Thanks for your comments! I'll pass it along. He said he felt sooooo bad. It was quite scary - Janine

See more in factsheet on withdrawals with antidote for salicylate reactions.

Q: Has anyone found that the elimination diet has triggered eating disorder behaviours that weren’t present before? - Terri

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(c) Can Stock Photo / Givaga

It can trigger orthorexia in some people, which is sort of like considering all the foods that are bad for you, as being inherently toxic to *everyone* and not just, bad for yourself - Belinda

Unfortunately going on any sort of diet is a risk factor for developing an eating disorder – Sara

I have done the failsafe diet for both my husband and our son (one in, all in) and I am a recovering anorexic (last hospitalisation was over 20 years ago). I found that I had to start seeing my psychologist again when we first started the failsafe diet 3 years ago. Together we came up with strategies to overcome the feeling of restricting food intake etc which was extremely helpful – Kath

Yes. But on a lighter note....any diet that allows me to eat chips and jersey caramels is going to cause issues! - Annie
 
It was partially responsible for triggering OCD for me (but trauma played a big part too) because realizing I react to things like wrong cooking method or food kept a bit too long or contamination from other foods was something my brain grabbed hold of and ran with 😬 - Rene

I am the opposite. I never liked eating as I often felt unwell after eating. Now, I can eat without feeling sick so I actually eat more & enjoy eating - Sharyn

Yes, to the point I made myself really sick from malnutrition. I was already struggling with medicine-related poor appetite before failsafe. Around week 3 it all went downhill as I preferred starving to the idea of eating the stage one food options again. It took months for anyone to realise how little I was eating. It is still very early in the recovery stages where it is a huge achievement if I manage one meal and a snack two days in a row - Becky

Yes, but my dietician was aware that this happened a bit last time I did a gut healing course. We agreed that I had to do all the steps properly and transition off properly and check in often and have a food diary and write honestly so that if I wasn't eating enough or focusing on things too much he would steer me away from that. I have been better than last time but I want to get off this diet because while it's been helpful I know mentally I need to more food options again soon – Megan

Yes, this diet made me utterly bonkers! I was obsessive to the point if throwing food away if it was cooked a minute too long. Would be wonderful if there was a support group for this – Anne


We always recommend a supportive and experienced dietitian to supervise the RPAH protocol, particularly if there are food disorder issues. Elimination and challenge is a diagnostic protocol, not a lifestyle, and it is important to liberalise diet to your limits. Ask for RPAH’s liberalising advice This email address is being protected from spambots. You need JavaScript enabled to view it.


See more in our excellent factsheet with scientific references

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It was my go-to when I was explaining to school and health care providers what I was doing. It was reassurance when I couldn’t remember the details and also a go-to for troubleshooting - Kristan

The references. It's strengthens your case enormously when dealing with sceptics, or those that thinks it's another form of 'fashionable' diet fad, including hospital admissions folk, teachers, etc – Stephanie

Didn't read the book but use the website. It's really useful for navigating tricky stuff like how to avoid glutamates etc. I was making mistakes and this helped me see where – Sarah

It helped me understand that I wasn’t just a naughty kid as I was treated - Ruth

This book was my bible when my kids were little. I did the failsafe diet 16 years ago, and it was the only reference I had. What have I got out of this book? Boys that went from being the ferals of the school to the politest boys in the school (in three weeks). Boys who I could take places, without fear of a food based tantrum, peace in the household, some of my sanity back. This book re-defined food for us, and has made our life so much better. It gave us the tool to let them be the men they are supposed to be. Now my oldest is 22, and we have been on this way of eating for 16 yearsand they still check labels. I have two at uni and one aimed there, all doing engineering of one form or another. Thank you for giving my boys back to me - Liz

This book is the only book I source recipes from. Can’t live without it. Thank you both. I recommend it to anyone who suffers allergies - Jean

In September we recorded our 13 millionth website visitor at www.fedup.com.au. Thanks everyone for being so supportive and positive! Feedback:

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Woah! What an achievement 🙂 . Another sign that you've made it: you have a hater group on Facebook, called 'Sue Dengate Failsafe Group Exposed'. Apparently your dietary advice needs to include much more about the impacts of vaccines and water fluoridation on dietary intolerance! 🤣 Last I saw, it had six members – Tiffany

That is wonderful. What a help it is to so many. Thank you both. I first made contact with Sue nearly 30 years ago – Robyn

Thanks so much for all the straightforward, practical advice over the last 22 years (in my case!), you have truly been life savers - Helen

1 million of them is probably just from me checking stuff over and over 😂. Thank you for helping me SO much! 🙏💕 – Kristy

Thanks for all the advice you have shared over the years – Judy

What an incredible service you have provided families for all these years...through my daughter's journey i also learned about my own issues with amines and it has made an incredible difference to my quality of life, thank you! – Silv

Wow. Thanks for being there for so many years. A great knowledgeable support for so many people - Lorraine

Thanks for being there for so many of us in despair, then to see the way ahead - Helena

 

Whether you believe in God or not please celebrate this failsafe win with me!

My 8 year old son just told me sheepishly he wanted to tell me something god did for him today. His friend gave him 50c so he decided to get an icy at the canteen (full of flavouring and additives and we have been on strict elimination diet for 5 weeks)...then when he went to get it out of the cup the stick broke. So he went to the canteen and they gave him a spoon. Then the spoon broke. He thought in that moment god was telling him not to break the diet so he threw it in the bin. Bless his little heart ❤️- Kylie

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