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
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 )
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
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 - Carlos
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
(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.
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)
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] )
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
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
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.
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
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
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
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
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
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
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
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
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
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See more in our excellent factsheet with scientific references
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:
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
Q: My 12yo son was diagnosed adhd & specific learning disorder 3 yrs ago & medicated. His teachers feel as though he is not progressing at all & he seems to be getting worse. They question his diagnosis, hence they are reassessing. I was hoping to try the elimination diet to see if this would help - am I best to do the 4 weeks elimination or just the ditch foods with additives, being that the main issue is that he is particularly vague, switches off, loses focus? - Bella
Answers from facebook group:
My son was diagnosed with ADHD when he was 6, he’s now 36. He was put on medication that didn’t help. Find something he’s really interested in, my son loved lego, to boost his concentration span, also reading, something that he loves, you will be rewarded, it takes time and a lot of effort from you but worthwhile – Della
Couldn’t agree more avoiding additives (incl synthetic perfumes etc), eating 100% organic is very effective for me as an autistic adult with ADHD. Medication still helps—it’s just not enough if the body is assaulted by inflammatory chemicals - Miff
I was asked to take my son for testing for autism but when he went onto strict elimination he completely changed overnight. His teacher told me she could see no sign of autism (although I know he's still got more subtle sensory needs, fixates on some things like science, how things work, screens, minecraft)...If he has something like broccoli he will run around crazily, sugar gives him a high but then a low where he'd lie down and cry, carrot for example he'd be aggressive or argue, some things he'll be very sensory and touch all the walls etc. Anyways, not a 'cure' as I think it is how he's wired and he's a really beautiful smart child... but it makes his life a lot easier - Micky
Autistic and ADHD person here. An elimination diet can help an environmentally Sensitive Autistic person but that's not the only thing that can help. Autistic people are sometimes capable of something called "Masking" which means suppressing Autistic traits. It's exhausting to do and causes fatigue and burnout. Getting him to stop doing the things that make him ADHD will lead to burnout. I would suggest you test him for Autism anyway and make sure his accommodations are met. There's lots of tools to help with sensory issues; headphones, weighted blankets, chewelry, fidget toys, etc. These will help him regulate his emotions and sift through uncomfortable stimuli - Sam
Any diet will not "cure" your child. Diets will only help your child if they are environmentally sensitive to those chemicals. Even if diet does do something, your child still has Autism or ADHD and finding ways to accommodate their needs instead of suppressing them will lead to an infinitely happier child. Put it this way, if loud noises bother your child you can teach them not to react to the noise, but the noise will be as loud or bothersome as ever. They just won't feel safe enough to show that they're hurting - Sam again
I get so upset when people try to “cure” neurodivergence. I can confirm that whilst I get grievous mood swings from artificial flavours, no amount of bloody vanilla ice cream will get me through Kmart exposure for longer than 30 minutes. The sensory overload is hell. The language used around the discussion of diet and asd/adhd needs to change otherwise people will continue to feel unacceptable members of society – Kate
The thing is, the ND people who don't have these food and chemical sensitivities see the whole thing as a myth. They don't understand the relationship that things making us sick, tired, or in pain can impact our focus or our tolerance for sensory overload – Kate again
My son had behavioural issues at home and in classroom around age 8 and the elimination diet resolved most, it was amazing the difference within 3 weeks. He was found not to have ADHD as there was never an issue of concentration on things he was engaged with. He reacts to salicylate, amines, antioxidant, benzoate and glutamate all with different reactions. Although he has less adverse reaction to salicylate which make him more sensitive, emotional etc. I have always wondered if they contribute to his lack of concentration in class. My son now 14, eats relatively well at home but whatever he chooses away from home has fewer behavioural issues as he has grown but has zero interest in reading/writing school subjects and is behind for his age – Nicky
Everyone is different, so react to different things. So I'd definitely try full elimination. My 5yr old has ADHD, after 4wks we definitely saw improvements in focus and sitting still. Eg. from getting up from dining table 20+ times while having dinner to only getting up 2-5 times; finally sitting at group time and not running around the classroom and touching the child next to him; sat and focused on colouring in a picture for the first time. So hopefully he will be able to sit long enough to actually learn something now. Sals made him return to previous non-focus behaviours – Lena
It is very hard at first, I may have had a bit of a meltdown in the first week of planning menus. And being out and about or birthday parties is hard. My son has delays also, but has noticed himself that his speech has improved (his oppositional behaviour has reduced considerably so that he actually partakes in his speech sessions). He is so proud of himself, so I use that to remind him at parties etc, so he understands why he's on the diet. Plus I give him marshmallows and chips so he doesn't completely miss out – Lena again
It's easier with the assistance of an RPAH trained Dietitian - Samantha
My nose bleeds have finally stopped 4 days post Amine Challenge 😁👍 My ENT has been trying to work out the cause of sporadic nose bleeds for years! They even happen mid race up mountains but I know why now. I have heard so many crazy reasons for my nose bleeds over the years 😂. Pat yourselves on the back all of you celebrating failsafe wins out there 😁🤗 - Pam
Erin: Me too! Amines also. Unbelievable that I put up with it for so long!
Mary: Happens to me too!
See Amines factsheet
(Howard's comment: amines and other food chemicals can also alter blood pressure, see [1129] for instance)
Just wanted to report my good news about the elimination diet working to stop vertigo! It's the salicylates, after trying to include some moderates, (too many at once) the vertigo came back mildly. Next time I try some moderates I will have half a cup every second day to start with. My 'healthy' only wholefood diet before Failsafe was VERY high in all the natural food chemicals. So thankful to the Dengates and RPAH for sharing their knowledge about how to relieve food intolerance symptoms – Laura
More in blog on vertigo
We started the strict elimination diet 8 weeks ago. After 5 weeks we reached baseline - it was incredible. He was a totally different child - calm, relaxed, focused, went straight to sleep and slept for 11 nearly 12 hours, was easy to reason with, had increased self control etc etc. Then we trialled dairy nearly 3 weeks ago......many of the behaviours returned, his sleep was instantly affected and his skin broke down in cracks and rashes. We are still trying to get back to baseline after the dairy challenge - could be weeks, months before we do. But at least I know dairy is part of the problem. We consult a dietitian regularly - one recommended by Sue Dengate. And I've read everything I can get my hands on. It makes so much sense to me now - Jacqui
UPDATE to [952] 5 years later: I must say also, thank you so much you have changed my eldest's life! In fact, you have changed our whole family's life (including the Grandparents!) as we have all been avoiding additives for the past 5 yrs and wow what a difference it has made - Emma
I'm not too sure what the big words mean but the irrational defiance my kids showed vanished when we removed their food triggers through the diet – Mimsy
Failsafe changed our world - Charlotte
After suffering for some years from quite debilitating and embarrassing problems caused by food intolerances I finally found the RPAH Elimination Diet Handbook. I have been using it now for the past 11 years. It has become an essential part of my life and is always close by. When slips happen and problems start to return I go straight back to the charts. The Failsafe Newsletters are a great source of information and inspiration, please keep them coming! I am very grateful to the RPAH and the Dengates for shining a light on the terrible problems intolerances and food additives can cause both adults and children – Lynda
Carpal Tunnel in both wrists is gone. No more braces for me. Salicylates caused the inflammation – Jo (Carpal tunnel syndrome is possibly the most common nerve disorder experienced today affecting 4-10 million Americans)
Amines were our trigger for "hating the world", sleep and anger which is supposedly common. However unfortunately everyone is different so you will need to do the elimination – Jane
My daughter diagnosed with ADHD, severe anxiety and reacts really badly to high sals, artificial colours, dairy and wheat. Definitely worth trying elimination process, it has helped us heaps – Lucy
My son (7.5) had a lot of success with the diet and teachers comment on his new found concentration. I would suggest doing in conjunction with a Failsafe dietician – Emma
Failsafe changed our lives. Our son couldn’t stay on task long, struggled to deal with other people changing what he was doing/playing with, etc. We have been failsafe for over a year. We did doctors first but got nowhere even with sample testing, hydrogen tests, ultrasound tests, etc – Donna
Our 9yo was very angry, upset, defiant. Often he would wake up and he “never relaxed” that day. That was our term for how he was emotionally when anything just seemed to trigger him. The diet really helped - Peter
More Articles ...
- [1611] Restless legs (August 2021)
- [1610] How long does it take on diet to get changes? – facebook thread (July 2021)
- [1609] Salicylates: “comfort food doesn’t always bring comfort” (July 2021)
- [1608] Wein Personal Air Purifier “very helpful” for MCS (July 2021)
- [1607] Danielle’s story - ‘every day felt like groundhog day’ COURAGE AWARD (July 2021)
- [1606] Salicylates and nasal polyps (May 2021)
- [1605] Seizures: "I need to tweak my sals" (May 2021)
- [1604] Sharing the positives – facebook thread (May 2021)
- [1603] 5 positives about finding the right dietitian/health professional – facebook responses (May 2021)
- [1602] Eczema: Looking back 2 years (May 2021)
- [1601] Chronic migraines and Hemicrania Continua – facebook responses (May 2021)
- [1600] Prostatitis as a possible food intolerance reaction (April 2021)
- [1599] 160b annatto: serious allergic reaction to popcorn (April 2021)
- [1598] 160b annatto: “completely out control” (March 2021)
- [1597] Salicylate-induced nosebleeds and asthma (March 2021)
- [1596] 160b annatto: "I did not sleep for an entire night" (March 2021)
- [1595] Frequent night waking in breastfed baby (March 2021)
- [1594] Teenager with autism and depression (March 2021) COURAGE AWARD
- [1594] 282: Bread preservative in breastmilk
- [1593] One-liners (February 2021)
- [1592] 200 sorbate: serious allergic reaction (February 2021)
- [1591] Obsessive-compulsive disorder OCD and diet? (edited facebook thread) (January 2021)
- [1590] Salicylates: over-indulged on cinnamon candies (January 2021)
- [1589] ASD: “Please give me some hope” (edited facebook thread) (January 2021)
- [1588] Autism: “ASD improved out of sight” (January 2021)