I suffered from terrible morning, afternoon and evening sickness when pregnant with my son (now 7). The only foods I could eat that didn't cause problems were cheese on toast, bananas and chocolate milkshakes.[these foods are all low in salicylates although not failsafe due to amines] We also had problems with breastfeeding - he would throw up most of what I fed him. Perhaps he was sensitive to salicylates passing through the breast milk. Needless to say we gave up on that after struggling for two months. (he was far happier on solids at 2 and a half months). Later down the track when trying to solve his behaviour and asthma issues, we tried (as a last resort) failsafe eating, and guess what? we are both sensitive to salicylates but not amines. If I'd known then what I know now... by email

I am 15 weeks pregnant with my fourth child and once again I've had a big problem with toothpaste and morning sickness. It was the worst with the first pregnancy, basically, I would feel a bit queasy before brushing and as soon as I cleaned my teeth I would throw up. As in the other pregnancies I've also gone off a lot of my favourite high salicylate foods and am completely unable to handle caffeine and chocolate (makes me very anxious and heart palpitations). – Julia

I have been failsafe now for 4 1/2 years and am very sensitive to salicylates, all of the artificial additives I have challenged, lactose, and especially amines. In my first two pregnancies I had strong cravings for cheese, cheese flavoured snacks, and cola soft drinks, I also had horrendous morning sickness (actually all day sickness for the whole pregnancy), and during the second pregnancy I was hospitalised for dehydration due to non-stop vomiting. By my third pregnancy I had become more aware of my lactose intolerance and did not touch any dairy products or cheese flavoured anything (by luck I stuck to failsafe soymilk), thereby unwittingly eliminating almost all amines from my diet and a lot of the additives I normally consumed. I was so well throughout the pregnancy, compared to the first two. I stumbled across the Fed-Up book when my youngest child was 12 months old and as we worked out our intolerances I slowly realised why I had had such terrible ‘morning’ sickness. Now that I am so much healthier it is almost tempting to conduct a Failsafe experiment and have another baby just to see what a completely Failsafe pregnancy would be like. However three is enough right now. – Jen, NSW

I have become pregnant unexpectedly. At 41 too, yikes! I think once I sorted out all my food issues somewhat, my fertility increased, whoops! Jane, by email [failsafe, gluten free, dairy free, and most recently reduced fructose]

Is pregnancy a side effect of going failsafe ? because that’s what happened to me. We had been trying for a while and had sort of given up. I never thought that changing my diet would help but I fell pregnant within a few months of going failsafe. – by email (failsafe but not gluten-free)

I attended one of your talks 12 months ago where you mentioned a link between coeliac disease and infertility. Since we have been trying unsuccessfully to get pregnant, I had a test for coeliacs and it was positive so I went gluten free and am now the very proud mother of a new baby. I just wanted to say thank you! – by email, Vic

I am a woman in my mid 40s and have been failsafe for 5 years or more. I notice I am starting to have a little more insomnia, and irritability, and some other symptoms which I attribute to peri-menopause. Thank you so much for your extra information about low fat diets for menopausal symptoms. It really makes sense. I know when I indulge in a big steak with potatoes, lots of butter and whole milk I get extreme breast tenderness the next day and feel warm all over. I will keep you posted, but I really think this could greatly help some of my symptoms.  6 months later: Thank you for your information regarding menopause, it seems to be working -   by email, U.S.

I recently had a case of cystitis (or urinary tract infection) - fairly mild but still uncomfortable.

I didn't want to try herbal remedies because I knew they weren't failsafe but in the end I did because I was so desperate!! "OUCH" is all I can say about the whole experience. None of the herbs or naturopathic remedies I tried did anything at all to help relieve the infection and as expected, a fresh herbal mixture from a naturopath made me feel terrible - fuzzy head and a terrible night's sleep with lots of weird dreams!

Luckily, after some frantic research, I found info on d-mannose and it was the only thing that finally worked for me. Once I got some of the powder, I started taking a dose every two hours for a few days and it gave me relief very quickly and cleared the problem within days. Having been an IBS sufferer (pre-Failsafe) I was worried I might get some adverse reactions from it but it didn't seem to bother my tummy.

I'm also staying well clear of the salicylates too. I definitely agree that they are a contributing factor (they really do cause their fair share of problems don't they!) – Jodie, by email

I have had painful bladder syndrome for over four years now. I have no damage to my bladder lining so in Australia it is not called Interstitial Cystitis but I have hypersensitivity of the bladder nerves which gives me constant bladder discomfort. Diet could not control completely so now I take Lyrica and Endep to calm the nerve pain. In the US this would fall under the general umbrella of Interstitial Cystitis (IC)

My symptoms presented after a series of bad UTI's. I started to get burning after wine and coffee: well known bladder irritants. But as time went on I started to react to many foods and my bladder became more and more hypersensitive. In the US a million people have IC and one of the methods of self management is diet. Many people control it this way without medication. Generally people eliminate coffee, wine, vitamins, spices and a lot of fruits and tomato. The clue for me was the awful reaction I had to blood thinners after surgery. Thinking I had another UTI. No it was a reaction to a huge dose of salicylates. It is interesting that common bladder irritants are all high in natural and in wine artificial chemicals especially salicylates. I am still struggling to fine tune the RPAH diet as the bladder reacts to many other things like hormones, sex, stress but generally the diet suggested as the 'rescue diet' for IC is pears, rice, chicken, milk and green beans all low chemical has always helped settle my symptoms. - by email

I had suffered repeated attacks of cystitis and infections which damaged my kidneys. ‘If you don’t take these antibiotics, you won’t live to be forty,’ my doctor had warned me, and talked about kidney transplants.The antibiotics made me feel sick all the time, didn’t prevent the attacks and probably set me up for irritable bowel symptoms later on. I stopped taking the medication, changed my diet and never had another attack. I had noticed that red wine and citrus seemed to cause my attacks although my doctors ignored this observation. ‘Your condition resembles analgesic abuse,’ commented one specialist. I had rarely taken painkillers but I had eaten a diet very high in salicylates which are part of the same family as aspirin. – from Fed Up by Sue Dengate

I have a nine-and-half-year-old daughter who has a day and night time bladder problem (urinary urgency) since the age of 3. I have seen all the specialists, psychologists, and natural helpers available. By the age of 8 she was, as it seemed, growing out of it. But after reading your book, Fed up, I linked it to preservatives, flavours and colours. Coincidently I was cutting down after our son had behavioural problems, and I heard you speak around that time. I took your advice and cut out the bread preservative first and then other things, but I didn't take salicylates seriously yet, especially with our daughter because she is so thin and a fussy eater. Her bladder problem seemed to creep back when Grandma was buying strawberries for her alone, as she knows our son could not have them.

Then when her brother was doing the salicylate challenge she was indulging in all these foods too, and of course her bladder problem is so evident now. – by email.

I am interested in the possible effects of sodium benzoate.  I note that this preservative is used in an aloe vera drink. When I increased my dose of the aloe vera drink, it was around the same time that I developed a case of candida. [Aloe vera contain salicylates, so it could be a combination of the salicylates in the drink drink as well as sodium benzoate preservative which is chemically very similar to salicylates.] -  by email

I have been wondering why I was regularly getting thrush despite being on a low salicylate diet. Then I challenged with a multivitamin I had been using until recently (not one recommended by RPA) and it gave me thrush immediately. – Lea, NSW

My kids (3-year-old and 15-month-old) get thrush as a sals reaction … Many thanks for all of your work.  I just can’t thank you enough for the difference in my kids – M from NZ

When my son had a nasty chest infection/bronchitis I gave him crushed up Panamax paracetamol 4-hourly for a couple of days, as well as the inners of amoxil capsules.

A couple of days later, his behaviour was absolutely shocking and it culminated in him having a night terror one evening, the most severe one he has had since being failsafe since last September.

I knew something was going on, and I decided to check up about Panamax – and discovered it has potassium sorbate (202) in it. We have not yet done any challenges on additives as we already avoid dairy and salicylates, so decided to pretty much stay additive-free. However, we do seem to be okay with moderate amounts of pure MSG and amines.

I strongly suspect that his behaviour and night terror were induced by the preservative 202. What angers me more is that I was completely unaware of the existence of the preservative in this product, due to the lack of these medicine companies having to label their products. Our kids are already sick when we need to give these drugs to them, and they need to get better, but how can they when their body is also trying to fight against an artificial preservative?

Even when I asked at the chemist for a preservative-free paracetamol, they were not able to tell me what was in the products they sold. If only we could have good information about what is in these medical items, ie. through labelling. I don’t accept the excuse that there isn’t enough room on the packaging – if a box of soap can list its numerous chemical ingredients, so should a box of pain relief or any other medicine.

Please use our experience in your endeavours to fight for better information labelling on medicines – it’s our kid’s future. – Joanne, Vic

Update: this reader was using an old box of Panamax. The formulation hasn’t changed but the labelling has: Panamax boxes now list potassium sorbate on the label. For young children, ask for our recipe for additive-free children’s paracetamol. (We would like to hear any other reports of reactions to sorbates – email This email address is being protected from spambots. You need JavaScript enabled to view it.)

See also [1221] 202: Night terrors and sleep disturbance in a senior related to potassium sorbate preservative? (August 2013)

I too had a reaction to Panadol branded paracetamol, which occurred after taking it for multiple days. I know that I react to sorbates so made the presumption that this was what I was reacting to in the Panadol. - Ruth (June 2016)

On August 27 2008 we emailed you some information following concern about the ingredients of a certain brand of fluoride tablets 0.25mg. Our daughter, now 6 yrs, has been taking this particular brand of fluoride tablets for the past two years or more, following a recommendation by our dentist. Please note that our daughter has always had good healthy teeth and was only recommended them since we live in an area that has a non-fluoridated town water supply. The tablets by the way were sold by the same dental surgery.

We have been involved with your network for some time now, whilst trying to overcome our daughter’s intolerance to the numerous additives found in foods and other products. Although we have worked with a dietician and followed all the recommended advice in relation to elimination diets and food challenges, we never seemed to achieve the results we hoped for.

It was only a fortnight ago that it occurred to us to check the ingredients of the fluoride tablets. There was no information on the actual bottle and no information available on the manufacturer's website, so I called their Consumer Information Service. I requested they forward a list of ingredients to me, to which they promptly refused, stating such details were confidential for ‘proprietary reasons’. Only through sheer persistence was I able to get the ingredients list ... it was not sent to me, it was read out over the phone.

I was initially given the colouring agent as CI 15985. I complained that this number was used within the industry but not widely known by consumers. They reluctantly told me CI 15985 was also known as FD&C yellow. Further prompting was required to get the equivalent term Sunset yellow. Finally they told me Food additive 110 is also another name for it.

We can see we had been making a huge mistake and stopped the tablets immediately. Over the past two weeks we have seen our daughter’s behaviour and learning abilities progressively improve to the point where she is a different little girl; happier, more co-operative and less oppositional.

We are now very angry that we mistakenly trusted a recommended pharmaceutical product that effectively has contributed to diminishing our daughter’s general well being.

Since the launch of the Kids First Campaign calling for the phasing out of additives such as 110, I was curious to find out if I could get the same information from the manufacturer and called their Consumer Information Service once again.

This time I was not so successful. I asked the representative where I could find information about the tablets on their website. I was pointed to another website which listed the product (copy of page supplied) but still no declaration of ingredients. When questioned, she replied that the tablets do not contain sugar or alcohol. I told them I needed a full list of ingredients to be emailed to me. Only after much persistence and placing me on hold to check with her ‘colleague’, did she take my email address, agreeing to forward the information I had asked for.

She also asked me for a contact number should the need arise. Sure enough, about two hours later I received a call from the representative, informing me that she had since been advised by her ‘supervisor’ she was not allowed to send the information after all.

Next I asked to speak to her supervisor. I asked the supervisor why the representative was told not to send the information after saying that she would. The supervisor replied "oh she's just new here and didn't know." The supervisor went on to say that their product is listed with the Therapeutic Goods Administration and they are not required by legislation to reveal the ingredients. After pursuing that matter further with her I was informed the only way to get the information is to go to a GP or a registered health professional who can then request the information from the manufacturer direct. She informed me that our GP could request the information by writing to her (the supervisor).

Despite the fact that we were able to source the ingredients in the first instance and have since stopped using the tablets, there is an underlying major issue that clearly needs addressing. As parents we are continually battling to find out the necessary information about such additives and preservatives to ensure the health and well being of our children, only to find that manufacturers hide behind terms such as ‘proprietary information’ or ‘trade secret’. I hope you find this information equally disturbing. I would like to know what we can do to evoke change in the regulations around the labelling of food and medicines. – Darren, Vic

I work in an operating theatre. One day last week we had a few kids on the list and I asked what the awful smell was. The result after process of elimination was, it was the oxygen masks. It seems that the kid size oxygen masks now come scented. I'm referring to the masks they hold over the face as the patient is going to sleep. I asked why they are scented and apparently it's supposed to be less stressful for the kid if it can smell something nice.

SO, to the parents of kids that are sensitive to smells, make sure you ask the anaesthetist about the masks if your child needs an operation. I don't know if we've still got unscented ones, I couldn't find any (but that doesn't mean anything). I made a point of letting them know it could cause major issues for kids with problems and all I could get as a response was, "but it's non allergenic". AARRGGGHHHH!!  We've got cherry and strawberry, which don't really smell like they should. - Jane, by email (Like the fruit they represent, strong fruit flavoured perfumes will be high in salicylates).

I am a 43 mother and have done the RPA elim diet. I have Colitis that was triggered by a single episode of food poisoning ten years ago. It took a long time to get a diagnosis of microscopic colitis. For a long time I was told that it was irritable bowel. Finally a colonoscopy and biopsy showed it - a very under-diagnosed condition. My big 3 "no-no's" are: annatto 160b, synthetic antioxidants such as BHA 320, and sorbates.  All of those cause cramping and diarrhoea. – Kate, by email

I have a 6 year old son who I already knew was intolerant to some foods. He has periods of eczema (which we have been able to control with his diet) and we have avoided these things for years. Luckily, because he was basically born with eczema, I had been very careful about introducing foods. I started giving him crumpets for breakfast when he was 2. He would be fine after eating them, however when he woke from his sleep he would be screaming and hitting me, very violent and uncontrollable. I initially thought it was hunger, as I found that when I gave him something to eat he would calm down. Anyway, to cut a long story short. I found out about preservative 282 and cut it out completely. He was normal again!!

On and off over the years I discovered other things that affected him, so I added those to my list of things to avoid. A few months ago we went over to Europe. When we came back he went back to school and started getting very clingy, crying and not being able to read or write properly and was not able to concentrate. I have had trouble with these symptoms on and off over the 1½ years. I mentioned this to my friend, she gave me your book and I started an additive free diet.

After about 1 week everything had improved dramatically. I waited about 4 weeks before I introduced additives, one a time … He reacted to 202 (potassium sorbate) in a drink of juice by crying and becoming clingy. He had it at dinner time, then had trouble getting to sleep. The next day he was very sensitive and cried a lot and hid in his room when our visitors arrived and would not come out until they had been there for several hours. He got better after he had his lunch (which he ate by himself in his room). He then came out, but didn’t talk much and sat right next to me. He only had it the once, as I did not want to make the situation worse. He can drink fresh juice with no problem. - Michelle by email

"I thought I would let you know that one of the dietitians recommended on the list you kindly mailed me was extremely helpful and was exactly the help I needed with the elimination diet I had begun. I cannot recommend her highly enough. I think it is too difficult to complete an elimination diet with just an outline of the diet from the doctor (as it was in my case) as your only guide" - Donna, Qld

"Failsafe (in a nut shell) saved our daughter and family! Thank you for the change in our family and quality of life for our daughter!!!!  It means so much to have people like you out there!!!" – Angie, USA.

"We have been following failsafe since November last year and the changes have been wonderful. If there is an occasional slip-up then we know about it! My son doesn't have violent tantrums any more. He still gets upset over things, but we can reason with him and he calms down quickly. My daughter doesn't wet the bed unless she has salicylates so we can minimise that." - Alison, NSW.

"Your work is very admirable and I personally thank you for educating me about food and their effects on our health / behaviour. You both deserve an award for what you do!" - Kelly, QLD is this one too many Your work type comments?

“It's of comfort (and inspiring) for me to know there are others doing FS, GF, DF and low fructose” – by email - see our new fructose malabsorption factsheet

“Regarding chemicals not food: my son had an allergic reaction to the current Auskick brown and yellow striped socks. I forgot to wash the socks before he wore them (as recommended by the manufacturer). He got hives on his feet and ankles” – Lara, by email

“Your books and the Failsafe Network are huge lifelines for me with my 2 year old daughter who has IBS reactions to a wide range of foods and food chemicals” - Janelle by email

Thank you so very much for doing all you do. You have improved my family’s life immensely. My 5 yo son is now at school, and if I hadn’t found failsafe when I did last year, I’m sure that he would have been in the principal’s office on a regular basis for behavioural problems. He had spent three terms of kinder year not making a single friend at kinder, and having anxiety about going there, not to mention the tantrums he threw while he was there. After failsafe kicked in, he loved going and started to make a couple of friends.  He is at the end of his second term at school, and has done so well, made a number of good friends, has learned heaps and - has never been sent to the principal’s office!! There is still a way to go in educating the teachers in schools, but I am taking this one day at a time. - Joanne, Vic

Just a quick note to say thanks! I react very badly to any synthetic style fragrances and hubby refuses to use a roll on. My pharmacy ordered in the QV unscented spray deodorant you recommended and fussy hubby has used it no problems. I also bought the Schick sensitive shave gel (unscented) that was mentioned in the newsletter (Big W stocks it). No more headaches, watery eyes and sneezing for me in the morning now. WooHoo! – Danielle, by email

I do wonder if what mainstream media call the epidemic of depression is in fact an epidemic of food intolerances/sensitivities (or if I want to be more inflammatory, the poisoning of modern mankind!)  And ADHD?  I can only assume that a large proportion of children diagnosed with this in fact have the same kind of intolerances as our daughter.

When our 9 year old has consumed nitrates or other preservatives she becomes what I could only describe as deeply depressed, highly irritable, intolerant to noise and these days, self destructive. Any errors we have made in food the last months have led to her to:

- Attempt to jump off a balcony
- Scratch her nails deeply into her legs
- Bang her head on the refrigerator
- Threaten to kill her self.

No one who knows this child at school would believe that this is what we endure at home when she accidentally gets the wrong ingredients. Interestingly she will hold onto this behaviour at school and explode with it at home, if her diet has a hiccup earlier in the day.

Failsafers will know the rest of that story - tuck shop is off limits, birthday parties are a no no, all the other children in the family complain about the items (ice cream) that they can no longer have.  - Amanda, by email

We had our first run in with ribo rash last week.  My husband and I were both running late to get home and my mother in law had collected all the kids and was minding them until we got home. She was going out but needed dinner before she left so we decided to break our additive-free diet [for children's behaviour] that night and purchase takeaway chicken from a chain for dinner.  We knew there would be consequences because of flavourings in the chicken, antioxidants in the oil for the chips, not to mention the flavour enhancers that would surely be there. We woke the next morning to no behavioural reactions at all but later that day my eldest son, the most sensitive of all, broke out in a rash on the backs of his hands, backs of his knees, his face and up his arms. My 2 year old daughter broke out in large blisters like chickenpox and my other two sons both broke out in what looked like heat rash. It didn't even occur to me what could have caused that reaction until several days later, the day after I had spent a wasted appointment with our doctor who said the rashes didn't look like anything and not to worry.  My eldest son still has the rash a week later although my other kids' rashes have slowly resolved.  It makes sense as he is the most sensitive.

I rang the outlet to find out about 635 but they said they would have to research it for me and get back to me but I'm pretty sure that would have been the culprit. We will not eat there again, no matter how strapped for time we are! - by email, Qld

I have attached a photo of this rash that I developed over the period of a week. It started on my arms and legs first and gradually took over my whole body.  A friend had seen this rash on your website and asked me what different food had I eaten lately, and I realised I had been eating cheese flavoured rice crackers for 5-7 days previously.  I had been on phenergan and antibiotic injections as well as cortisone to try to reduce the rash, as I am a diabetic. However after stopping the rice crackers and anything else with possible flavour enhancers (my husband went through the pantry!!!!!! and removed all products with 635), the rash SLOWLY disappeared. - by email, NT

My six-year-old son Noah’s problems were moodiness, irritability, not really being there, and for years the white face and no energy that you described in your book. My husband and I did not know why Noah was going down the path of these mood swings and this year at school he just could not comply with what was expected of him. About two months ago I was handed a copy of your book Fed up and it was such a relief to think we may have found the answer.  It is plain to see that Noah must stick to a low salicylate diet cutting out all the naughty numbers.

Unfortunately over the last few weeks with Xmas, we let the diet slip, and we now see the effects. Back on to the good food now for the entire family, and hopefully a good year for Noah at school.

I just had to write a quick note to say thank you - the work you do is so good and so important. I tell anyone who will listen about this information, it must be spread around for people to be aware of, mums and dads and teachers.  – by email, NSW

My 7yo son suffered from asthma, and my 5yo daughter was borderline ODD, complete with sneaky poos, bedwetting - the whole rack of symptoms.  We removed preservatives and colours from their diet with fantastic results - mainly from the removal of propionates and sulphites. I noticed, though, that my daughter's behaviour seemed to deteriorate when she had certain foods such as vegemite, soy sauce etc.

We did not do the elimination diet correctly the first time. We made the usual mistakes - not enough commitment, cheating, coming off it too quickly – and were misdirected in our conclusions - thought salicylates were fine and amines were the baddies. We decided to put our daughter back on the elimination diet after she failed to improve when we removed amines.

This time we are 100% committed and the results are clear. Our daughter was fine the first day of the salicylate challenge, a bit iffy the second, and by day 3 she was back to pre-diet days, even resorting to deliberately (in front of me) urinating on the lounge room floor.  Add to this a constant headache, tummy pains and a small rash on both legs. I promptly cleaned out the fridge, and removed all salicylates from the house. Two days on and we are gradually improving, but what a shock!

An even bigger shock was my son's reaction. He was always 'the good one' and didn't seem to have any behavioural issues apart from asthma, which has improved greatly since we removed additives from their diet. By the end of the second day, he had stolen a can of coke from the fridge (dad's stock - banned for our kids) and drank it outside when he thought I couldn't see.  Screaming, shouting, fighting, defiance - completely unexpected from him.  Two days on and he is quite remorseful - and determined to stay away from 'those foods'.  He has also woken up today with big black rings under his eyes, and a wet bed.  No coincidence, I think.

I never imagined that food chemicals could have such a significant effect on health and behaviour. My daughter starts school next year, and we can now look forward to a future with more enthusiasm and positivity than we did 3 months ago.  – by email, NSW

I started the elimination diet with my daughter two weeks ago and for the first time in I can’t remember how long her eczema has finally settled down and she is so much calmer and happier.  My husband and I are just so thrilled with the results we have got in such a short space of time.

3 months later: my daughter is fantastic, the diet has been a huge success for us and I honestly can’t share it with enough people. I was just looking back at photos of her the other day and I couldn’t believe how bad her eczema was, in the recent photos there was none at all. We now know that salicylates are a real problem. Additives seem to have an impact as well but I am happy that they are no longer part of her diet and never will be.

Since our success a number of our friends and acquaintances that have tried it with the same results. As far as I am concerned the more people who know about this the better. Before reading your book I honestly had no idea of the real effect food had on us.- Abi, by email

We initially started my three year old son on the diet because of his hyperactivity, defiance and rough, impulsive play with others. Once we started the diet these symptoms slowed down but he developed new symptoms of increased emotional state and abdominal cramps. What we didn't realise at first was that we had increased his milk intake and so although the diet seemed to work it bought with it new problems. In hindsight I now have a list of symptoms such as stuttering, pale stools, abdominal cramping, poor appetite, face rash, ear infections, hyperactivity, defiance, dribbling, thumb sucking, rough play and itching head, that I can now link to cows milk as these have all gone since we eliminated it and its derivatives  from his diet. I had been to doctors about these individually but was never taken seriously so never connected them all together.

At this stage we think that too many amines make him nasty and too many salicylates make him hyper and we haven’t tested additives. Since we took him off the cows milk as well and got over the withdrawals my son now no longer needs speech therapy, has a great appetite and is putting on weight, is able to enjoy play dates, is calm, doesn't complain of tummy ache etc and our life is much easier.  We are a much happier family. I think we have further to go in our adjustment to the new diet but we are definitely leaps and bounds ahead from where we were pre-failsafe days. We saw your Kids First campaign launch interview on TV, thanks for being a voice for all us parents out there wanting to scream the same message!  -  Kylie, by email [Although rarely mentioned by doctors, milk is strongly linked to ear infections (otitis media) Juntti H and others, Cow's milk allergy is associated with recurrent otitis media during childhood. Acta Otolaryngol. 1999;119(8):867-73.]

Thank you for your wonderful work, time and love you have put into helping families like ours. Truly if I had not found your book, I believe that my husband and I would have split up and gone our separate ways as this stress was just too much for us. We got no help from doctors or specialists at the Royal Children's Hospital. Our 17-year-old who is doing year 12 this year is living with his grandmother as living with us was not possible due to our other son’s impossible behavior.  My sister who is a Primary School teacher visited us a month ago and said that if I do not medicate this son, he will not be able to go to a school. His behaviour was so bad. My husband and I still have marks on our bodies from his bites.

He was violent, kicked and hit us. We had to put him in the bathroom as it was the safest because any other room was trashed.  We needed time out sometimes. After a week on the elimination diet, family and friends asked if I had sedated him. His behavior had settled so much. He still is not there yet, however we are now on track and I can see light at the end of the long tunnel.

Also may I recommend the ladies buy the DVD to show your men as they will rarely read the book. Watching an hour of a DVD is more comprehensible to the male brain. That is how I got my husband to finally understand our son’s behavior and to support what I am doing with him. He now has the book in his van and every spare moment he has, he reads it. He has even told his family and his work mates about this. You would think that he was the one to have worked out our son’s problems. Never mind, as long as he is with me on this everything else does not matter – Irene, VIC.

I can't thank you enough for your website, for bringing this important information to public awareness. I am an Australian currently living overseas, mother of 2, expecting again. My 3-year-old has always been a 'difficult' child, with some days better or worse than other. In recent times her oppositional behaviour escalated so much that I was on the brink of a nervous breakdown. She was screaming non-stop, day and night, always looking to fight me on every little thing. I just didn't know what to do with her anymore. I have always been a firm believer that when something is wrong, look at diet first. But I didn't know what the problem was exactly. I searched high and low for info, until I found your website. What a Godsend! A simple thing like eliminating oranges from her diet has reduced her symptoms significantly. She is almost sleeping through the night. I am new to this, and still have a lot of reading and learning to do, but you give me hope. Thank you! – by email

About 5 years ago I started getting severe skin rash / hives and after a year of investigations (blood tests, strip tests and food diaries) by the Immunology Department at Kings College Hospital in London, it was suggested that I maybe allergic to white flour; though this couldn't be proved. The only medical evidence that the professionals could prove was that I was of an 'allergen type' and had proven allergies to grass/tree pollen, dust, and cat hair. They provided me with medication that is normally used to treat ulcers and reflux (ranitidine, Zantac), to use in emergencies, as it would help to switch off histamine receptors in the body that are working overtime to get rid of the allergy.

For the last 5 years I've avoided white flour, which resulted in a lot of weight loss and I never had the severe skin reactions again. Although I would always get the odd marking and often have irritable bowels very quickly after eating some food, I put this down to there being white flour in some ingredients from time to time and just put up with it.

Last night I had a return of the severe skin reaction that I've not had for years, which began to cover my arms, neck and groin - exactly as it had 5 years ago. Having being in the USA for three weeks I had not been eating any foods with additives, as my cousin who I was staying with, is allergic to MSG. I can only assume that on returning to the UK and suddenly eating foods with these additives, that my body reacted so quickly and that I had previously been reacting to the E635 in the foods and not the white flour.

I'm more shocked that every story and photo on your website relates to me, and to what I thought was a white flour allergy. If only I'd have been able to show this evidence to my doctor five years ago!

The product that I ate before the onset of the rash was Knorr Chicken Stock granules, which contained E635 and I have since discarded soy sauce and Oxo cubes, which were the only other things in my kitchen to contain those additives.

I'm now going to actively avoid the ribonucleotide flavour enhancers you list and see if I can eat white flour products, as long as they're not filled with additives. It's as if someone has just switched the lights back on and just wanted to say thankyou, as well as sharing my relief that I am not alone with my allergy, as I had long thought I was.

Six weeks later: The rash came back a couple of times, until I cut out every type of food that was manufactured, so anything with E numbers, flavourings etc. Since then I've not been ill at all and have introduced foods that have additives but avoided anything with any flavourings at all, so thus avoiding MSG and other E600 numbers. This seems to work well for me. I tried the white flour test [plain water crackers and pasta] and was fine, I even tried cakes, pastries and fresh white bread that didn't have any flavourings and was fine.

By the way for UK sufferers nearly all food in Marks & Spencer food halls is additive, colour and flavouring free and amazingly detailed labelling, so many things don't have to be cut out if you shop there.

Thanks for your interest and helping me solve a 5 year nightmare! – Mark, UK

Thank you so much for your factsheet on food additive 635! I have numerous food sensitivities and am very careful to avoid MSG in particular as it causes a more severe case of hives than most others. I live in the United States, and it's extremely difficult to find packaged foods that DON'T contain MSG here.

My parents live in Tasmania, and my mom went out of her way to find a French onion soup mix to send me that didn't contain MSG, since I couldn't find one here. I used it to make dip last week, and by the next morning I had dozens of patches of hives all over my body. Since it was the only thing I'd eaten the previous day that was different, I double checked the soup mix packet and saw "flavour enhancer 635". I'm out of touch with Australian food labelling after being gone for 11
years, so I wondered if this was actually MSG. When I pulled up your fact sheet, I was surprised to find that it wasn't MSG, but now I know that I need to be careful of ribonucleotides also!

For the last year and a half, I've been avoiding MSG almost entirely - I'll occasionally take a calculated risk and allow myself some flavoured chips or ranch salad dressing. My most recent bout of hives was the 635 reaction, which began about 8 days ago, within 12 hours of eating the soup mix. Today is the first day they've been completely gone since then. The hives appeared in all my usual places - fingers, hands, arms, chest, neck, back, stomach and face. The reaction was definitely more severe than my usual MSG reaction - more/bigger patches of hives, more intense itching, longer lasting, resistant to my triamcinolone ointment, and faster to appear. Normally, I could eat a single-serve bag of flavoured corn chips (such as Doritos) and it would take 24-36 hours for a reaction to occur, and most often only the backs of my hands, fingers, and face reacting. The hives would usually go away within 2-3 days unless I had an additional dose of MSG. Thank you for helping me to identify more items to add to my "do not eat" list! – Wendy, USA

My step-sister is 3 years old, and by god she is a ratty child! Her language skills are very under-developed for someone her age, and she very rarely does what she is told. She is extremely loud and boisterous, cannot sit still or quietly, is very destructive, swears, yells, screams, and cannot play nicely with other children as she is very rough. A clean room can quite easily become a disaster zone within minutes. We have given up cleaning her room, as she pulls clothes and toys out as soon as we have finished. She is also up to 10-11 o’clock at night.

She often dances and sings and often makes references to people's private parts as well as other embarrassing things, and we have cause to believe that these actions are done for attention (even though it is the wrong kind of attention).

I have cause to believe that food additives have a strong part to play in this due to her lax diet. She is spoilt and gets what she wants, from chips, lollies, chocolates, ice creams, and soft drinks. She has quite a lot of milos everyday, I once counted 4 in one morning! If she is not drinking milo, she is having soft drink, cordial or juice. She very rarely eats any un-processed foods or drinks any water.

Our dinner times are healthy, generally consisting of vegetables, a salad and some source of meat, or sometimes spaghetti bolognaise. She refuses to eat any of it, and shortly after dinner demands some kind of snack-type food.

My mother is finding her daughter’s behaviour extremely unbearable, even becoming embarrassed to take her out in public. My mum’s struggle to keep her sanity has increased since recently giving birth, making it extremely difficult to look after the baby and put up with my sister.

I need your advice to convince my parents that my sister’s diet is not ok, and drastic changes are needed. – by email from a teenager who wins a copy of our DVD Fed Up with Children’s Behaviour. Here’s hoping it will help with the family situation.

Your book and your website have saved us the agony of months (perhaps years) of trial and error. Our beautiful 8-year-old is back to normal after a year in the wilderness where we wondered if she was depressed, had an eating disorder or a mood disorder.  I am certain that you have heard this story a hundred times over. – by email, Qld

I react to salicylates with pain in my joints, also I get very tender, raw skin in my genital area and intercourse becomes very painful. I saw you mention sore vagina in children - makes me happy to know I'm not the only one - I have always felt like a freak - so thank you for your books - they have helped me tremendously! - by email

My partner is pregnant at the moment, and we worked out that what gives her morning sickness is foods high in amines. It’s amazing hey, how at important times (or when very little) our bodies are capable of sending us clear signals that say "This is poison. No more please"... it's even more amazing that people seem so unbelievably blind to these signals.- By email (we would like to hear from anyone else who has seen a link between food intolerance and morning sickness:
This email address is being protected from spambots. You need JavaScript enabled to view it.)

Our allergist said there are billions of dust mites living in the mattress and vacuuming it is like ‘taking a bucket of water out of the sea’. I highly recommend the Allergend all cotton anti-dust mite mattress, pillow and doona covers. Using these helped my four kids a lot.' - Heidi from the failsafe eczema group

I recently saw the dietitian who entered my son’s typical daily diet into a computer program - it turned out that he is getting very adequate nutrients in his diet except for calcium which was quite low. However, he is now enjoying rice milk and I add calcium powder to milkshakes so I am not concerned about his nutrition. – Louise, Qld

"I have been living with Sue's Failsafe Cookbook for the last 18 months and it has changed my two-and-half -year-old's happiness in his daily life. His eczema on his face, arms and legs went a few days after stopping salicylate and amine laden foods. I stumbled on the book by accident in my shopping centre as I was on the look out for anything that could help with my son's symptoms. Thanks to both of you for your work" - Jane by email.

Our children have been failsafe (with a few slip ups) since Jan 2008. To make it brief, remarkable change, still work to be done a few mistakes still being made by me however. An example of change, our pediatric neurologist doesn't feel the need to medicate our son as previously thought and doesn't need to see him anymore due to your diet. He congratulated us on our efforts and to my shock he said 'make sure I look at his amines and wheat!' - Leesha, Qld by email.

Some months ago I started eating Weight Watchers meals at lunchtime on week days as a change from sandwiches and thinking they were healthier than bread. My favourites were the lasagna and spaghetti and meatballs. During that time I saw my doctor and had an ECG done because I was getting chronic heart/chest pains.

After a couple of months the pains went away and I’ve not had them again until yesterday when I ate a WW Lasagne meal for the first time in months. The last time was when I was having chest pains. Yesterday the chest pains came back very badly. Today I’m better but still a bit sore. When I looked up the ingredients, I found 627 and 631 amongst other things can cause chest pains. It’s very scary that this is what it was – they must put a bucketload of the stuff in there because I had not had the chest pains before I had the WW Meals. I honestly did think I was having a heart attack, the pain was incredible. – Caroline, by email

My 14-year-old son has Aspergers syndrome. He experiences arrhythmia and severe heart palpitations every time he consumes any additives 211, 282, 220 etc. If he has been free from these additives for over two weeks then he will get away with the first exposure and then it accumulates and gets worse. We saw a heart specialist and he found no problems, just blaming it on anxiety. He also gets more aggressive and violent once it accumulates... like Jekyll and Hyde. Sadly it is so hard to convince and be believed by doctors and his psychiatrist that these additives affect him. – Therese, by email

•     My son is on the elimination diet and last week he had a MAJOR reaction to [a natural treatment] which I'd left on overnight.  I was really stupid and thought I'd done the right thing by avoiding a traditional chemical headlice treatment - instead opted for this natural treatment (1% lavender, >10% teatree oil, benzyl alcohol 0.5% ethanol 20%) - obviously he won't do well when I challenge salicylates! - failsafe mother by email 
•     I got a call from the principal at 10 o'clock saying he'd have to be taken home to have his hair debugged - my fault. I had suspected the bugs but I didn't want to put anything on his hair while we were doing the diet. I had no choice. I picked him up at 1pm and washed his hair with [a natural treatment not the same as above] - containing 10mg/g melaleuca alternifolia - or teatree - oil. I returned him to school at 2pm. When I picked him up at 3.30pm, he seemed fine, but certainly not calm. At storytime/bedtime he was acting really silly and I asked him twice to stop before I gave up and left the room. He then had a tantrum with tears. - failsafe father, NSW
•     I had to delay the challenge as they got nits a couple weeks back and had to be treated ... well ... didn't those chemicals send my kids haywire!  It took 4 days for the meltdowns to stop, extreme ODD for around 72 hours! - failsafe mother, by email

I first noticed something was not right when I was 18 years old. Mum had brought a Chinese meal home for the family to share.  Within 30 mins of finishing the meal my breathing began to get laboured and I started to sweat.  My nose blocked up and I felt like I was suffocating.  I thought I had a reaction to MSG and decided to leave it at that. I didn't tell mum as I decided I would just not eat from that shop again.

I would often get the same reaction if I went to a restaurant so for the next 16 years I always thought I got food poisoning easily and avoided restaurants and Chinese food.

About four years ago we ate a fish and anchovy meal at the home of some friends. Around 2am in the morning I started going incredibly hot, sweaty, fast heartbeat and felt like I was suffocating.  I couldn't breath but did not link it to asthma. I had diarrhoea but no vomiting. No nausea. I had no idea what was wrong with me. I thought it was bad food poisoning due to the fish. I thought I was going to die. It was that severe. I struggled until 4am when I thought I should call an ambulance. I got out of bed and almost collapsed. I was dizzy, seeing flying shapes and hallucinating. I took some antihistamine because my husband said it was more like an allergic reaction and 45 mins later I started to improve slightly so I did not call the ambulance.

I was 34 years old then. I didn't eat out for the next four years and told all my friends "I get food poisoning easily". Earlier this year I decided to see an allergist as I was convinced I was allergic to fish – as similar reactions have happened when I have eaten anchovies - and wanted to be able to eat out again.  Skin testing showed hayfever but no fish or food allergies.  The allergist mentioned sulphite intolerance to me and when he presented a list of the foods that commonly have sulphites in them, it all came together.  Suddenly, everything that I thought gave me irritable bowel had sulphites in them.

I knew that certain mueslis, all sausages and dried fruits made me very sick. I could never drink wine because it always left me with a heavy chest, flushing and I would feel every breath was an effort. Always diarrhoea and asthma and stomach cramps. I never linked the asthma to the sulphites. I always thought it was coincidental. Sometimes I'd get a rash. I know now the worst foods for me are sausages (instant stomach cramps, diarrhoea), wine, cold meats, certain mueslis with dried fruit. I have eliminated all sulphites from my diet since March 2008. I am now off my asthma preventer and feel great. I know now I can tolerate a small amount of sulphite, like in Vegemite but if I cross a threshold (particularly restaurant meals) I suffer terribly. I am too scared to eat out again. I have since taken my 10-year-old son off all sulphites and it's no surprise his asthma has improved considerably.- Yvette, NSW

I'm writing from the U.S. and have ventricular arrhythmia with sulfites. The point of this letter is to pass on another major source of sulfur poisoning. In the U.S. at least, the first major step in processing corn is to soak it in warm water for 48 hours to reconstitute it. To retard or eliminate bacteria growth in this process sulfur dioxide is added to the water. When the corn is processed into its hundreds of forms, this sulfur becomes concentrated and is a problem for sulfur intolerant folks like me. For twenty years I avoided commercial corn products totally, yet every year I would try my father-in-law’s organic sweet corn fresh from the farm and never had a reaction. Upon learning about the chemical contamination of processed corn, I began to experiment and it turned out that I can tolerate organically grown and processed corn but the commercial stuff is poison for me. – by email

Two years ago I became ill in the same manner as the ladies in story [641] 220: Two reports of sore throat and cold-like symptoms due to fruit cake May 2008. I had major headaches, sore throat, swollen glands, and then the side of my face began to swell. At first, I thought it was an insect bite and that I had a slight cold at the same time. But each day, my face was more swollen and my eye was barely opened. The doctor gave me antibiotics as he thought it was infected sinuses. It slowly got better, but at the time I was having dried fruit and white wine. My problems started again at Xmas time with a slice of plum pudding - home made from packaged dried fruit - and a glass of wine with lunch. I worked out myself that it was the sulphites and avoided them as best I could. Months later I had a problem with my teeth and X-rays showed I had two abscesses. The sulphites had been making such a reaction with the abcesses that my face had completely blown up.  I have had the teeth fixed but still have problems with my throat if I touch these chemicals. – Carol by email

I've always enjoyed the occasional glass of - maybe 1 or 2 a week on average. About two years ago we joined a mail order wine club and now I have up to six glasses per week, not a huge amount but it's three to six times what I used to have. The wine club has been really enjoyable for us but for well over 12 months I've had a mild mucous forming cough every morning sometimes lasting all day. I've been to the doctor and it's 'nothing'.

In the last failsafe newsletter there was a bit about sulphites and asthma which I basically skipped over because I don't get asthma. But a little later into the evening a light came on in my head. 220 in wine is sulphites, so I went to the best website in the world called the food intolerance network- yay for it - and looked up the sulphite connection with asthma. I now think my cough may be a mild asthma type response and I've noticed a slight wheeziness occasionally. I went off any food
containing sulphites for one week and guess what? No cough for that time. I still love my wine with dinner and cutting down has seemed to lessen the problem. – Leanne

Ever since I became pregnant with my first child 13 yrs ago, I have reacted to 220 sulphites.  Especially in red wine, well actually any wine and a range of alcoholic drinks.  Within half an hour I start sneezing heavily as if I am developing a cold.  My throat then feels sore and my face reddens and becomes puffy.  I have also linked 220 to eczema, which I have struggled with all my life. After refraining from 220, my incurable eczema vanished almost completely with in days. Beware though!  I have switched to preservative free wines. Happs is fine but some of the others which claim to be preservative-free still affect me. Reading the labels more closely, some only claim to have NO PRESERVATIVES ADDED. These wines still make me react. - Jenny, NSW

For years I have been trying to figure out what causes my rapid heart beats after eating sometimes. Three weeks ago I ended up being taken to hospital by ambulance with a heart rate of 150 bpm. I had eaten a cheese and tomato sandwich for lunch. I know for a fact the bread has no preservatives in it. I spent a few hours in ER but they were unable to tell me why this happened, heart rate went down and I went home. It has happened with various types of food, never the same thing. This has happened a lot over the years and answers I get from doctors is something like this - "If you eat a spicy meal it can increase your heart rate". That makes me feel like screaming 'Listen stupid I did not eat a spicy meal". The other symptom I get is increased ectopic beats. From now on I am going to keep a diary of food eaten and symptoms …

Three months later … I had two more trips to hospital with major irregular heartbeats, even the ambos were concerned. No joy from any of the docs as to what caused it all. I went to see my GP who I think has hit the nail on the head. He mentioned that coffee and chocolate could be responsible for causing both rapid and irregular beats. Chocolate seems to be my cause. He explained that it’s not just the caffeine in chocolate but the chemical that kills dogs if they eat chocolate. I told him that I had recently changed to dark chocolate because it was promoted as being heart healthy. He replied "that’s the worse of all". I did not think of chocolate because I would have no problems until 3 or 4 hours after eating it and I'm not talking about eating huge amounts, just 2 or 3 squares. I have since stayed away from anything chocolate and seem to be fine. My GP also told me that caffeine could raise blood pressure which in turn causes rapid heartbeats. If I do feel like a coffee I drink decaf. Not one person that I have told knew that chocolate could cause major irregular heartbeats. – Sally, by email

[Caffeine in coffee and theobromine in chocolate are natural food chemicals called methylxanthines. Dark chocolate contains about ten times more theobromine than milk chocolate. It is well known that chocolate can kill dogs but less well known that humans are also susceptible to chocolate poisoning if enough is consumed. The toxic dose for methylxanthines for dogs is about 150 mg per kilogram of body weight but as with other food chemicals, there is a wide variation in individual sensitivity. Symptoms of xanthine toxicity can include hyperactivity, irritability, nausea, vomiting, diarrhoea, and increased urination. These can progress to cardiac arrhythmias, epileptic seizures, internal bleeding, heart attacks, and eventually death. According to Wikipedia, the lethal dose for humans is approximately 10 kg. Food scientists warn that these food chemicals should be approached with caution by pregnant women: Eteng MU and others, Recent advances in caffeine and theobromine toxicities: a review. Plant Foods Hum Nutr. 1997;51(3):231-43. http://www.springerlink.com/content/r2j423713174l315/]

In response to your newsletter regarding 220 effects to the heart, I first had a reaction to wine a couple of years ago. I woke in the middle of the night with my heart absolutely racing - I paced the floor, drank plenty of water and tried to relax. Eventually I was able to go back to sleep. This has happened regularly since and loving wine I have found it difficult to control. Fortunately we have a cellar of aged wine and over the time I have found that I am able to tolerate aged red wine and better quality white wines without effect. A single glass of some white wines, however, will give me palpitations and wake me through the night with my heart racing.

Recently I have also been able to link my reaction to episodes of asthma. The first at the age of 30, and the second at 35. On the second occasion I had been drinking 2-3 glasses of white wine every day during a two week holiday. Whilst I was able to select wines that didn't affect my heart at that level, by the end of the second week I experienced my second ever bout of asthma. Recently I also ate some cheese and suffered palpitations. Checking the label showed that it had sulphites listed. – Amanda, by email

[cheese does not normally contain sulphites unless flavoured, e.g. – Mersey Valley sweet chili contains two sulphites: 223 listed as preservative and 221 listed as antioxidant.]

Although I knew I was allergic to medications containing sulphur, I never realised to avoid foods containing sulphites and other additives. During the 1990s I used to eat fruit mince pies and dried fruits (because I thought they were healthy) and many other things that are now out of bounds. I also started to experience sudden uncontrollable coughing fits at the most embarrassing times, so always carried a packet of Fisherman's Lozenges to pop in my mouth on these occasions. I noticed that I started having heart palpitations which would last a short time, but got scared at times when they became stronger or lasted longer (I likened the feeling to my heart being like a washing machine out of balance). The Doctor told me to go to hospital when it happened so I could be put on an ECG machine, but with no transport I knew it was impossible to get to hospital before the palpitations stopped. I got a taxi to the hospital one time, but of course it was over by the time they got the machine hooked up. Eventually I linked these palpitations to the Fisherman's Lozenges and I haven't had any more palpitations since ceasing to take them. Now I am a lot wiser about the foods I eat and I am certainly a lot better for it. – Gladys, by email
[Fisherman’s Friend lozenges are made from all natural ingredients and do not contain preservatives. However, they do contain licorice, menthol, eucalyptus oil and capsicum tincture all of which are high in natural salicylates – it seems that Gladys’ palpitations could have been associated with salicylates in the lozenges she took to overcome the coughing caused by sulphites.]

I suffer from mild arrythmia (I had a hole in my heart since birth and had an operation when I was 21) which is well controlled by medication. I am not a drinker, but do occasionally have one or two drinks and have noticed that the arrythmia is worse and now I know why. I know that MSG aggravates the condition and don’t touch the stuff. – Julie, South Africa

In reply to reader story [640] ventricular arrhythmia from sulphites, those are the exact same symptoms I get when having any sulphites. If I have too many I also get tongue swelling. This reaction happened out of the blue a few years ago at the age of 42. Wine and beer affect me the most and I avoid sulphites in any foods I eat – although I can have sips of wine and small bites of sausages etc with no ill effects, once I have the equivalent of about 3/4 glass of wine with sulphites, I suffer. I always wake up about two hours into sleep, with a temperature and my heart going crazy – then I get stomach cramps, nausea and a strong urge to use my bowels. The next day I feel lousy and my heart feels like it’s got an extra beat for a couple of weeks. I’m happy to have preservative free wine, beer and sausages in my life but 220 and 223 are in way too many products – and for no use at all – my preservative-free sausages last for 4 days beautifully in the fridge. MSG doesn’t affect me (I had a challenge of it in hospital) and I don’t know if the other flavour enhancers bother me, I avoid them and haven’t had them for three years. Although nothing is ever quoted in the medical literature, my immunologist is very familiar with these types of reactions. We have been conned by the manufacturers into believing food requires additives for our benefit but I agree with Michiko, ventricular arrhythmia is a terrible and frightening experience! – Corrine, by email

I found your book about 10 months ago after my four year old son Jacob was hospitalised for an asthma attack combined with the dreaded influenza A that children were dying of. Well, that was enough to scare me into action. We started the diet as soon as I had finished reading the book and soon the children all became well …I couldn't remember a time when Jacob hadn't had a snotty nose or cough.

Then three months ago, Jacob’s behaviour started to escalate. He also developed this phlegm that he couldn’t seem to get rid of. He wasn’t sick as such, no temperature just a very phlegmy cough. I asked my doctor about it and he said it was an irritation and would never go away.  Well I didn’t believe that for a second because it went away when we first started the diet.

Jacob’s behaviour was so awful I was at the end of my tether to the point where I didn't want my husband to leave the house and leave me with the kids. I went to your checklist of common mistakes (I thought I had the diet down pat by now). It said Annatto 160b - in the soy yoghurt I was giving the kids. So I started making my own and after a week I had a little angel again. Unbelievable. No more Annatto 160b for our family - never again.

But Jacob still had the cough. Then I stopped making soy yoghurt for a week. Jacob drinks ricemilk instead of soy milk anyway and I noticed a difference in his phlegm. After three weeks without soy, the phlegm, snotty nose and funny rings under his eyes had gone. He also stopped wetting the bed, and that returned when I made a slip up recently. – Carolyn, SA

I am trying to find out as much information as I can on the additive E635 but it appears that there is nothing on English sites.

My husband (62 years old) ate a packet of Cheese and Onion crisps which has E635 & MSG in them, within minutes his lips were swollen and he broke out in hives, this was over three months ago. I kept him off all foods with these in and when the rash kept appearing on a daily basis he went to the doctors. The doctor thought initially he was having a joke about the additive then realized that he was been very serious but said it would be rare to have such an allergy. He was given a month’s supply of tablets which helped but the moment he stopped taking them the rash appeared again. Back to the doctors who had said it would be rare and suggested that he took the tablets for another 5 days, stop them and then try to find out what he was allergic to!!! They class it as urticaria which has been triggered by an allergy.

He stopped the tablets and the rash appeared again. We are at a loss to what to do next apart from avoiding the foods that contain these additives and take tablets for what appears could be a very long time. – by email, from the UK

I have a son aged seven and a daughter aged five. Both were affected by 635 from birth - I breast fed them both for nearly 12 months while eating foods such as flavoured chips and pizza. They reacted quite differently to 635 and we were very surprised it turned out to be the same thing.

Our son had a rash over the thighs and sometimes the whole leg, bottom and trunk, worse at some times than others and very rarely on his face. He had nappy rash badly a few times.

Our daughter had the rash mainly behind the knees and elbow, sometimes on the bottom.

Because the rash was always there - although some times really bad and other times just there - we thought it had to be something they were exposed to all the time.  We were thinking wheat, dairy, dust mite, fruits, veg, etc - but something always didn't ring true because of the varying degrees of prevalence of the rash.

We went to a doctor who did a skin prick test on each of the children. Our son had a slight nut allergy and our daughter had a slight egg allergy. Some of the other things were also slightly elevated but not really what he thought would be causing their problems. So he suggested we go dairy-free, wheat-free and soy-free for three weeks. We started by re-introducing dairy first, but I didn't do it properly (I gave cheese, etc - thought we could do all dairy!!).  So, we went back to the DFWFSF diet again for a bit.  All was going well, and their skin was quite good (we were starting to think one of these must be the culprit).

When my son was five and my daughter was three, I was going out one night and decided to get ‘Honey Soy Chicken’ from the deli at the supermarket as an easy tea - they'd had it before many times (though obviously not since starting the diet.  Our son started eating it and was complaining about his mouth feeling funny. He had a few more mouthfuls but kept complaining heaps. ‘Stop eating the chicken’.  Was soy our culprit?  The next day his skin was an absolute mess and continued to get worse for a few days. I went down to Coles and asked to look at the ingredient list - Yuk!!!!!!!!!!!!

I saw the number 635 and something triggered (I had briefly looked at ‘Fed Up’ trying to find some information on triggers for eczema) and I went to your website.  Reading through some of the stories about others experiences with 635 - the puzzle pieces started coming together.

The fact that the symptoms last 2-3 weeks explained why sometimes the rashes were really bad and at other times they seemed to be not too bad.  We thought that we had our son’s skin culprit - we couldn't believe that it was also our daughter’s!!  We took 635, 631 and 627 out of their diet and within four weeks their skin was perfect and remained so.  We stopped the diet and began living.

By observation we believe our children do react to other things (behaviourally) - colours, salicylates and amines.

The foods with 635, 627, 631 that affected our children included barbecue shapes, two minute noodle sachets, party pies and sausage rolls, flavoured chips, rice crackers, pizza, tinned soup, cocktail saveloys and many others. They were all foods that were easy to take out of their diet - no sacrifice at all.

Their skin is fantastic now and has been ever since the honey soy chicken episode!! They are very aware of the numbers that affect them and always ask before they eat anything.  We have had a few ‘accidents’ and the skin break out that comes with it ... aaaarrrrgh!  These have generally come from things that are unlabelled - eg delivered pizza, restaurant meals, take-aways.  Still, because we understand what is happening we know how long it takes to go and ride it out. – Lisa, Tas

Three years ago, my son who is now 11 began getting rashes, headaches, always tired, mild asthma, allergic rhinitis, even his personality changed. He had a very bad allergic reaction once to a bought breakfast, but was not hospitalised. My doctor is great and referred him to a paediatrician who specialised in allergies.

I did elimination diets (wheat and dairy) and the rest of it as suggested by the doctor, however it wasn't until I started going through all of the labels that I found this 635 number in soup which he loved, and I and the doctor thought was relatively healthy. It wasn't on my list of additives, so I searched on the internet and found your website.

I then found flavour enhancers in many different foods and just eliminated them - all of the 6XX numbers. The worst was probably chicken noodle soup/ chicken & corn soup, which my son loved. It is an ongoing process as I find it pops up everywhere in foods which you may think are ‘healthy’, I must read the label even on brands I have bought before as they change, meat and chickens etc. It is also frustrating when things are labelled plain/natural/NO MSG as it makes it difficult for my son and anyone else. I must ask when buying take away as I find they add it to chips, without you asking for it or telling you.

When he had the soup his reaction was quite evident and within a few hours of having it - rashes, headache, rolling on the floor ... He once came home sick and with a massive headache - I later found he had had chips labelled ‘natural’ but with flavour enhancers.

My son was quite happy to stop eating these foods as he was much happier without them. I think children are much more rational about this than adults. I now cook my own chickens, soup, pies and go to a butcher who is happy to give me additive free meat.

I know it is difficult to cover everything but I think it important to eliminate flavour enhancers as a first step and for doctors to suggest this, as eliminating milk and wheat (which is what we did first) is much more difficult and has nutritional consequences, while flavour enhancers provide no nutrition. It is not something that is tested for in the blood test/scratch test. – Chris, by email

My daughter Bronte is 6½ years old and now in her first year at school. Aside from reflux until the age of 12 months, she was an absolutely delightful baby who was happy and content. She slept 12 hours through the night by 10 weeks old, hit all her milestones and was fairly average in our mothers group.

When Bronte was approximately 14 months old this deteriorated and we had a child who was frustrated, defiant, irritable and downright difficult. She was naughty on purpose and was impossible to discipline. She also developed eczema at this time but grew out of it after a couple of years. We felt that we were failing as parents. Our first son was born when Bronte was 17 months and he has been a delight. As our sons have grown up we realised that they were ‘normal’ kids and Bronte wasn’t.

When Bronte was three and her younger brother was speaking so much better than her, we had her hearing tested. She had the worst glue ear the ENT specialist had seen in years. She had grommets put in the next week and we were reassured that her behaviour and speech would return to normal reasonably quickly. We started speech therapy to help her catch up but things didn't improve. She didn't respond to the speech therapy as firstly she didn't have the concentration and secondly she simply seemed unable to attempt what was asked of her.

At three and a half she was assessed and we were told she had a global developmental delay of 19 months. That was almost half her life. At this point toilet training had become a huge issue. She was the first in mothers group to use the toilet but was always dribbling urine in her pants ven after recently going to the toilet. She resisted every trip to the toilet and it became a battle. She used to hide and poo in her undies every day and didn’t seem to care if we were out.

She was also very tactile and was into anything she could get her hands on that she could smear and finger paint in. This included dog poo. Many times she would emerge with her body covered on hers or the dogs poo. I hate to admit to how many times she ate dog poo and survived.

By the time she got to four she was still attending speech therapy and was about to commence early intervention. We were desperate patents and lucky to still be married at times due to the stress. We were ready to try anything. After many hours searching the internet, my next attempt to normalise our daughter was an elimination diet. A very daunting venture. With the support of my mother who stayed with us and a fairly skeptical husband we made it through the first three weeks. My husband then changed his tune quickly as a different child emerged into our lives. She virtually toilet trained overnight. The painting of poo ceased. Her language improved exceptionally. Everyone in her life commented about what a different kid she was. I will never forget bursting into tears at around the three week mark (in the diet) when she said ‘thank you mummy’ one day I was driving her to speech therapy. It was the first time she showed any emotion or acknowledgement of our feelings.

We continued the diet and commenced challenges. Two hours after eating chocolate and banana she went berserk. She stood on the carpet and wet her pants in front of us. She pooed her pants. She was defiant and oppositional again. And biggest of all, we couldn’t understand a word she said. We now know she is intolerant to amines in a huge way.

Bronte has since been diagnosed with dyspraxia, a language and motor disorder. She still requires speech therapy. Her private speech therapist has since done the diet with her child and encourages other parents to look into it also as she saw such a big change in Bronte’s speech and development.

We took Bronte to a paediatrician six weeks into the elimination diet to discuss her developmental delay. He bluntly told us that some kids were unlucky enough to be developmentally delayed and we shouldn’t expect too much from her. He said we would be lucky if she was able to catch a bus when she grew up. She would be able to do that now. When I told him that were currently on an elimination diet and had seen huge results he said he would never expect a parent to go to that much trouble and would therefore never suggest it. His last words were ‘When you are ready to put her on Ritalin come back and see me’. I walked out of there disgusted and feeling very sorry for the parents who are told this when they are searching for help.  I have to say that that elimination diet we did with our daughter Bronte, with help from you and our allergist, has absolutely changed my daughter's (and the rest of our family's) life. - Wendy, NSW

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