My daughter is allergic to mosquitoes and while we were doing the elimination diet she was badly bitten. Our doctor recommended daily double doses of claratyne liquid. On the second day my daughter started to talk incessantly and stutter a little (this had previously been a problem months ago). Then on day 3 at daycare she became drunkish, socially withdrawn and stopped talking (selective mutism, although not gone, had improved on failsafe). The staff at daycare had been amazed to say the least about her improvement on the diet, so this was obvious. When my husband came home, he picked up the bottle of antihistamine and read the label, to my dismay it contained sodium benzoate! Well, that went in the bin, we got claratyne tablets, she had a half, and the next day at daycare she was back to normal.

Sulphites (220-228) are used in a wide range of foods including dried fruit, fruit drinks, sausages (not in meat in the USA) and potato products such as hot chips and dried potato. We did the sulphite challenge with Deb mashed potato. My son was stuttering slightly before the challenge but by day 3 of eating ½ cup of Deb mashed potato per day, his stuttering was so bad that he would not talk at all. His stuttering continued for 4 months after the challenge stopped. Two years later he has had no sulphites and no speech difficulties.

Our two and a half year old son had difficulty with stuttering for a few months.  After my sister-in-law, a nurse, told us about the potential dangers of nitrates for children, especially contributions to developmental delays, we removed all nitrates from our son's diet and within about a week the stuttering was gone. Yesterday, our son went on an outing to the zoo with my mother. Strangely, his stuttering returned full-force today. I called my mother to ask what he had ingested for lunch
and dinner yesterday. The glaring answer:  a HOTDOG.

My 9 year old son started stuttering when he was around 4 years old. He seemed to be sensitive to preservatives especially 211 and I have steered clear of this preservative, but a few weeks ago his stuttering came back in full force, around the same time I had apple juice in the house. He is a big juice addict, and thinking back, has always had juice, either straight or diluted. I have always watched out for the preservatives in juice, and bread, but I now think he is intolerant to salicylates
as well. I have changed all of his foods to failsafe foods, and his speech is now good. He has calmed down a bit as well.

In 1997 at age 19, I developed an itchy, burning rash under my nose.  For the next six years, I went to doctors, naturopaths, homoeopaths, meditation and relaxation. Nothing worked and no-one could tell me why it was there and what it was.  In 2001 I gave up smoking and went through a lot in my life while living overseas and in 6 months went from 55kg to 72 kg.  I started getting bowel problems (flatulence, constipation, cramps and diarrhoea) and no matter what I tried I
could not lose the weight.

By the end of 2003 I had moved back to Australia and was on a wheat-free diet. My rash went away but I was still having bowel problems and irritability. Sometimes I would buckle over in so much pain I couldn’t walk, have terrible wind and then diarrhoea. I always needed to be near a toilet. That is when I went on the elimination diet and found that I was incredibly sensitive to sulphites and that the cramps and diarrhoea were from sulphites. The bad wind was caused by amines, and artificial antioxidants were a mixture of the two.  My rash is staying away too. I am also back down to 55kg after coming back to Australia, going off wheat but also enjoying the active Australian lifestyle.  I can now eat wheat as long as it has no preservatives - maybe it was never wheat that was the problem!

I am now only just on the other side of finishing the diet and am trying to come to terms with what I can and cannot eat. I have been trying no added preservative wine, which is a lot better, but I still sometimes have a bit of a reaction. I am very sad about Amines, I love chocolate and I can't eat much at all, same with cheese. I just know that it is not worth having sulphites because the reaction is too bad. My family have now begun to take out additives in their diets too after hearing from me just how bad they are. It gets confusing talking about natural food chemicals and chemicals to other people, but eventually they understand. – by email

Having four children who have all been milk and soy intolerant from birth, intolerant to artificial additives and sensitive to levels of salicylates and amines I've seen possibly every symptom food intolerance can produce raise its ugly head at some time or another. Unfortunately due to either being uneducated or narrow-minded, many mainstream medical practitioners including specialists just wouldn't go the food intolerance path so it took me several years to really get to the bottom of what was happening with my children.

The first symptoms that we came up against were reflux, eczema and a lot of skin rashes. My third child, Jessica, was extremely miserable and seemed to be in a lot of pain. She'd started refluxing from one week and was started on prescription medications. Luckily the paediatrician was able to identify a rash around her bottom as being associated with lactose intolerance so we went the road of trying various formulas until we got to nutramigen which settled her demeanour but did nothing to alleviate the reflux side of things, so we had unwittingly started down the right path. She also had a constant post nasal drip from very early on so we were shovelling her full of various antihistamine type medicines trying to alleviate that and she had eczema. My fourth child Zac knew that breast milk just wasn't for him so at two weeks he decided to starve himself in preference, refusing the breast. He also was covered in eczema and had silent reflux. Luckily for him he was put straight on to neocate, for during the couple of years leading up to his birth, our family paediatrician who by this point had all four of my children in his care had seen the flurry of symptoms food intolerance can produce.

As my eldest child Levi was still on syrup medication for reflux until just before he started school, his paediatrician felt it would be a good idea to see how he went, off medication. I was able to get him through with the occasional dose of over the counter antacid for a couple of months until he started school when his reflux exacerbated, so the prescription medication was reintroduced. I took him for his paediatric review a few days later and was told to start him on a prescription
syrup antacid as well as he'd been complaining of heartburn symptoms. Within 3 days something was going wrong. His teacher asked me what had happened to him, he was bouncing off the walls and displaying ADHD symptoms, being loud and disruptive. I rang his paediatrician and told her that I was taking him off the prescription antacid and told her what was happening. But things were going down hill fast, his ADHD symptoms were becoming worse, his coordination had
plummeted and he'd lost all sense of balance (which had never been a problem in the past), he'd fall over for no apparent reason, there were times that he would behave like he was drunk or high, giggling and slouching, and his eyes would zip from side to side really quickly (I was told the medical term, I think it was nystagmus…)

To top it off, Jessica, had started doing the parkinsons shake (she was still refluxing terribly and was also on both Zantac and Prepulsid syrup medications). Levi's teacher asked me to have him assessed by an Occupational Therapist who diagnosed him as having dyspraxia, a developmental condition that makes them have to have constant repetition as they have to relearn everything over and over because they can't retain it. I knew that it wasn't a developmental problem as he had always been in advance of his age appropriate milestones and I'd spent lots of time with him, he could climb trees, jump, skip, ride a bike without training wheels
from 3 years old, and had great hand eye coordination prior to this happening. All of that coupled with the ADHD stuff just wasn't right. So I made an appointment for the paediatrician (his regular paediatrician wasn't available so I asked for the one that was now looking after my other 2 children). He was dumbfounded. He'd remembered seeing Levi from time to time when I'd had to go for appointments with the others and he didn't have a clue what was going on. So he ordered
several blood tests, a CAT scan and an EEG. Everything came back clear. I remember saying to him at that stage that it had all started when the syrup antacid was introduced but I couldn't understand why it was still happening. I of course got a Tsk Tsk for pointing my finger at the medication. So I battled onwards for a couple of months, racking my brain, I rang the reflux support group and the lady I talked to said that her son who was on these medications was also ADHD. I was at my wits end, Levi's symptoms were getting worse, I resorted to ringing the drug company who manufactured the antacid and talked to one of the medics who worked in the lab. She told me that she had heard of this sort of thing happening before and that it was probably due to the alcohol, or the preservatives and flavourings used in the medicine as they are really concentrated in ALL syrup medications. BINGO. Now I was facing a dilemma. How could I treat my children’s reflux without the medications, I could see what it was doing to my kids - all 3 were on the same medications. I found a naturopath who made a tonic catering for my children’s reflux symptoms. In a matter of weeks I was able to control the older 2 with the herbal treatment alone. Within 7 weeks Levi's ADHD had settled down, his balance and coordination had returned and when we saw the neurologist at this point he agreed that Levi's problems were due to the preservatives and flavourings in the medications and felt that he was a normal 5 year old. Funnily enough Jessica was cured of the parkinsons shake and Levi stopped falling over.

I at that stage really started to read labels. With careful monitoring I was able to avoid foods that contained artificial colourings, flavourings and preservatives so the kids reflux and behaviour was settling down. At this time you could buy rice milk and oat milk as an alternative to cow’s milk and soy so the reflux for the 3 older ones was controlled purely by diet alone. I was able to see symptoms occurring when they'd eat a particular food or have a drink of juice. Jess was still in a flurry with the post nasal drip which would cause a persistent cough where she could barely catch a breath in between. At our next appointment with the paediatrician (I now had only Jess and Zac going), I told him about what foods would cause what symptom and he suggested going into the RPA clinic. So off we trotted, it was a big day that day, we found out Levi was anaphylaxis to peanut (I'd known he was mildly allergic and avoided it entirely) and I was educated about salicylates and amines. We did the elimination diet and with the reintroduction of certain foods it caused chaos. We lived a couple of years of pretty bland, I've found that they certainly improve with age, but I still have to be pretty strict with what Jess and Zac eat.

When Zac was two he was taken off the neocate. Our paediatrician suggested a follow on formula that was cow’s milk based but the protein was broken down into small chains. Within days the poor child was on the tantrum rollercoaster, throwing tantrums which generally lasted around half an hour at a time, where he'd hurt himself, belt into things, bash anyone who was around, and he'd have 6 to 8 of these a day. I was genuinely concerned that he was going to hurt himself or someone else. I rang the paediatrician (by now I was well and truly on a first name basis) and told him that I wasn't giving him any more formula and that he'd have to get by on rice milk.  Now you can get calcium enriched and vitamin enriched rice milk so that's somewhere else to go if you need to.

I've also seen dairy cause speech problems (this happened to Zac when he was on the follow on formula), tantrums, dyslexia (they can't get their tongue around words, mirror write letters and misspell words), very pale skin complexion, behavioural problems, ADHD symptoms, along with the gutty symptoms, reflux, eczema, and postnasal drip and that's just in my children. I understand that dairy and wheat are now being looked at as being causes for mild autism.

If you're at your wits end, if your child displays any of these symptoms or has a learning difficulty especially if there's something happening with each of your kids, even if their symptoms are different, food intolerance is worth looking into. It runs in families. Dietary modification may be the answer you’re looking for. My children are now medication free. If your GP doesn't want to go there, find a doctor that will. You need to be strong and assertive because you're going to encounter a lot of doctors and specialists who think it's all a crock, but you have to ask yourself why are there so many kids with ADHD, behavioural problems, learning difficulties ....unfortunately a lot of the food you buy from the supermarket has artificial additives, for the sals and amine intolerant remember that a lot of the fruits and veg that years ago were seasonal are now available all year round not to mention what they do to them to ripen them and keep them fresh, and for the dairy intolerant look to your genes for the answers, there are several races that are known can't tolerate dairy. It may just change your life. - Sandra Madden, Heathcote  NSW This email address is being protected from spambots. You need JavaScript enabled to view it. (Sandra now coaches children with dyslexia and learning difficulties and is happy to hear from others, please put food intolerance in the subject line)

I exchanged a few emails with you early last year in regards to a breathing problem I've had since my early teens (I'm 41 now) and thanks to your information on how to watch out for certain foods my life is MUCH improved. I have been weight training since my late teens and have picked up quite a bit of knowledge on nutrition along the way but looking deeper into foods containing preservatives, sulphites etc has opened my eyes to a whole different side of eating. As an ex-smoker I always put my problem down to that but limiting my intake of mince meat, prawns, pizza, processed meats etc. to a very small percentage of my diet has done more for me than giving away the cigarettes. – Richie, Vic

My 4.5yr old son has been our biggest challenge. All his problems are proving to be food related – it’s amazing. His issues are aggression, ODD, poor impulse control, argumentative, continual congestion and ear infections (2 lots of grommets), continual rashes, blotches, sore tummies, burning anus, bloating, bedwetting etc, all of which are being controlled now by diet. We had been giving him decongestants, antihistamines, nasal sprays and antibiotics since the day I stopped breastfeeding him at 6 months ... He was a wild little boy but we've now found out that benzoates are his worst enemy. His nose his dry now and needs no medication. – by email, NSW

Since the age of two I have seen a pattern develop in my daughter Jaslyn whereby she gets a cough every time she gets a cold. If I treat her with cough medicine the cough persists and becomes chronic, sometimes lasting weeks and causing great distress. In the worst episode two years ago she developed a serous asthma type wheeze with obvious distress and difficulty breathing after drinking soft drink – which she rarely has – and taking cough medicine.

Since them we have discovered that her symptoms and cough are greatly lessened if we do nothing when she has a cold and let it take its course. What we have found for the past two winters is that now if she gets a cold she will get a cough but it will last only for one or two nights if we do not give her any cough medicine. We have a strong family history of allergies and asthma and although I was aware of avoiding sulfites and preservatives in her food I was not aware of the use of benzoates in medicines. I realise now that the benzoate preservatives in cold medicines exacerbate my daughter’s symptoms and turn her persistent cough into difficulty in breathing and asthma like symptoms. – Julie Eady

About two years ago, I attended one of your seminars in Christchurch, NZ. When I first entered the room, I remember seeing information on foods to avoid including broccoli, avocado and olives. I was shocked. Not only were these my son’s favourite foods but they were healthy. I listened, watched the videos and felt these were all good descriptions of my difficult boy ... but I was not stopping him from eating "healthy foods"! Two years later and Shaun (not his real name) is now 10. During this time, his behaviour at school has deteriorated and he is having a tough time. Despite being an excellent reader and achieving high maths results, he cannot spell, his writing is messy and he finds it hard to stay on task. He annoys other children and is very defiant towards teachers. At home he can be demanding, argumentative, sulky and has low motivation. Last week I remembered the book "Fed Up" I had bought and pretty much shelved. I pulled it out and was surprised that two years ago I had highlighted the symptoms for Oppositional Defiance listed on page 3. It was an exact description of Shaun. He even agreed that’s how he felt.

Shaun has now been on the elimination diet for a week. On the first day of the diet, Shaun did a homework sheet for me in 5 minutes that normally would take him 15 to complete only half with lots of moaning and groaning. His writing seemed to be better. His teacher has noticed that he has more self control, and is doing his work. Shaun says he feels happier at school. Is it possible to see behaviour improve this quickly? I am really hoping that this will work because our lives have been very stressed. – by email, NZ  [this family was already additive-free, which generally leads to quicker results]

After failsafeing my children we have seen a great improvement in their behaviour. My eldest daughter (nearly 5yrs) was diagnosed with ODD. She is so much happier and easier to live with since being on the diet. My youngest daughter had dry eczema on her arms that has all but disappeared. Both of my children were on what would have been considered an extremely healthy diet (fit for life) with very little junk food and loads of fruit and vegetables. They have both improved considerably over the four or five months on the diet. Thanks for the work you have done in making us aware of what really is in our food. We have tried many things to help our eldest daughter with little success and were at our wits end. Food has turned out to be a big key. Now some of the other methods we had previously tried (eg. reward charts) actually work. If we have a slip on the diet it's like a wall goes up in her mind and she can't listen anymore. – Belinda, by email

My 9 year old nephew 'suffered' from super hyperactivity and very bad mood swings for most of his life which was very stressful for all his 3.5 school years. His violent behaviour, which only ever occurred at school, included pushing over desks, tearing up paper, pulling phone connections out of walls, pulling plants out of the garden and hurting a teacher when being restrained. They would ring his Dad to come and take him home. He visited many medical specialists, was finally diagnosed ADHD and prescribed adult doses of drugs  with no improvement.

Over the last six months he has been failsafe while being homeschooled and there was an incredible difference within two weeks. In four months he covered nearly 12 months school work and is improving rapidly. He has always been quick to lose his temper at home with his brother and sister but since he started on the diet we have not seen him angry.  He actually had his head slammed in a car door recently by his sister's friend.  It must have really hurt and his eyes watered but his response was "It wasn't your fault, Poppy". We were all amazed. He is now a healthy, happy little boy with a great sense of humour. It is frustrating to say the least that so much of the trauma this little boy and his family went through was to do with food additives.  by email, Qld

•     I have a son who was full on and no amount of discipline would work. We have been failsafe for two months and our lives have changed so much - this is now a happy house.

•     Within two months of starting the failsafe diet Lachlan's teacher came to me and said ‘Do you know, Lachlan is now one of my best writers.’  Prior to that Lachlan had been struggling through the bottom of the class, unable to grasp little things and his writing ability was appalling - almost illegible, dyslexic and with very limited vocabulary. Now he grabs a pen and a sheaf of paper and writes whole ‘books’.  He learnt to play chess after one session and overall his cognitive ability has improved no end.

•     My son’s cousin has taken Ritalin since aged about 10, and sadly now he's 18 and in jail. He also has a heart problem …

•     My 5 yo son’s asthma is triggered by MSG as well as artificial colours, preservatives and flavours.  If he is given a handful of lollies containing artificial colours he is usually wheezing by bedtime. Every evening I test his peak flow.  When he is well he consistently presents a reading of 110.  Last week when I knew he had been given some lollies (grrr) I tested his peak flow only to find it was around 60.

•     I have a failsafe daughter, and currently she can only buy one item from the school canteen: plain chips.

•     I have just started my 22 month old son on a failsafe diet and in 3 days he has transformed and I am converted!

•     I recently watched a pre-diet video of my boys taken 3 years ago and in it my oldest son was covered in eczema and scratching.  Now, he only gets eczema if he comes into contact with an allergen - eg certain types of grass - or eats something he shouldn't.

•     I saw my daughter when she was 14 months old transformed in a few days of failsafe, gluten and dairy free diet from so clingy, always crying and screaming - so tense she was felt stiff - to a smiling happy little girl who played normally.

My son used to bang his head when he was little. He's 12 now and we are doing the diet for his behaviour. After the annatto challenge he started banging his head against a brick wall for about half an hour. When he stopped he told us that he had a headache so bad that banging his head seemed to be the only way to make it feel better. - Australia

My daughter has been exhibiting rage and headbanging that has has progressed over the last 9 months with many other symptoms . After I dsicovered your website I eliminated annatto a week ago and the headbanging diminished but has not disappeared. Annatto was in her vitamins and granola bars that she consumed daily. It was also in many other items that she consumed such as ice cream, Doritos, salad dressing.  I am now eliminating all additives you recommend to avoid. - USA

I am a 30 year old Nurse living in the UK. A few days ago I had an anaphylactic reaction that came on within 20 minutes of eating cereal. I ate my usual brand of muesli mixed with some high fibre cereal my hubby bought from our local health food shop. It is called "Ultra Soya & Linseed Bran" made by a company in Australia called Vogels. I had not eaten anything else that morning and looking at the list of ingredients the only ingredient I do not eat regularly is the natural food colour Annatto (160b). My hubby has been looking this up on the net and found many reports of allergies to this. - UK

A few months ago I started chewing sugar free chewing gum several times a day and since then, my stomach has been almost continuously bloated. On occasions the amount of gas in my stomach is so extreme that I have to force myself to burp to relieve the pressure in my stomach   - Male, 30s, Australia, sorbitol and maltitol, twice daily.

I was suffering with a sort of what I thought was "gastritis", causing extreme obnoxious embarrassing gas and bloating, and after an hour or two, constant gas every 10 minutes for hours and hours .... it was so bad I wanted to run away from myself, I know that’s funny but it was quite disgusting, the doctors told me I had a spastic colon but I noticed the "health" food candy bars I thought were healthy had sorbitol and my stomach feels perfect since I've been reading the labels and staying away from the sorbitol - female, 30s, USA, sorbitol, daily

I ate 5 caramels that I thought were safe because they were free of artificial colours and other additives. A few hours later I had excruciating stomach pains and sudden diarrhea – female, 40s,
Australia, maltitol, one serve

I have suffered from a red itchy rash for the last 7 weeks which has worked its way over most of my body.  It started around the waist and moved down to my thighs and legs and then up the back of my legs and buttocks.  It has also appeared on my arms and underarms, neck and eyelids.  I first thought it was hives and went to the doctor who prescribed cortisone cream and antihistamine.  However, the hives didn't go away just appeared less angry at times. It appears to be worse at night and my itching has driven my husband and myself mad.  I have been very depressed and have had several crying bouts - I have even felt suicidal.  Clothing around my waist area seems to irritate and makes me come up in welts.  I have been to a naturopath and a Chinese herbalist, it sometimes looks as if is getting better but last night it was worse then ever.  Then I came across your website and recognised my symptoms from the descriptions and photographs.  I ate a take-away vegie burger yesterday for lunch and have also been using a stock powder (Massel brand) which contains 635 – Dianna from NSW.

I believe I have reacted to this food enhancer/additive.  About 3 weeks ago I developed red lumps/welts all over my arms and torso.  They appeared out of nowhere and caused the itchiest and annoying response I have ever experienced.  I had absolutely no idea what they were or what had caused it. They were almost like insect bites and as I have a few pets I thought maybe fleas, but found no evidence of fleas anywhere.  It wasn’t until the weekend just gone that my husband read an article in the Melbourne Herald Sun about 635 and told me that it sounded exactly like what I had/have.  Thank you for the more informative website and I will now be able to avoid certain foods that may trigger this response.  I still have a few of the sites remaining quite ‘itchy’ but nothing like the first three to four days.  I did attend my local GP who was concerned about the cause of the ‘obvious allergy’ but she was at a loss as to the cause.  I had eaten corn chips prior to the outbreak – Diane from SA.

My mother bought a roast chicken from Woolworths…within minutes of finishing her meal, my 11 year old daughter said her lips were itchy. Then her top lip started to swell up. It became quite puffy, then her bottom lip and tongue started to swell. We rushed her off to emergency. The swelling then seemed to slow down and after a couple of hours it went down although her top lip remained a bit puffy for a day or so. The doctor at the hospital told us she had definitely had an allergic reaction to something. She was given oral phenergan even though things had settled down just as a precaution. When we got home I checked the packet that the chicken had come in and the only thing I hadn't come across before was 635. I managed to find some stuff on the web and figured that it was most probably the cause. Since then we have avoided 635 – Judy from Victoria.

What can we do about this??  We had Dominos pizza last night - a rarity for us. My husband had quite a reaction (itchy, headache, swelling in the mouth, muscle aches, sore chest, chest pains) and when I phoned to enquire about the ingredients they were very defensive and apprehensive about giving me a full list. I was finally advised after much frustration on my part that the olive tapenade has 635 in it (this is after he said it 'pretty much' only has olives in it). I had a mild reaction as well (itchy face, swollen mouth, itchy eyes, pain in chest).

Why don't they have to advise people that it has this nasty additive in it? A FULL ingredient listing should be provided or someone (some food authority) should make people aware that this can happen. It should be law, as I understand the consequences can be quite serious and even life threatening.  My husband didn't get to sleep until well after 2am – even though the pizza was consumed at around 7pm.  The scary thing is that I have allowed my children to have some pizza but thankfully they both declined last night. I know the onus should be on the individual to be aware of what they are eating, and hey, we all know junk food isn't good for us, but every now and then it's nice to not have to cook dinner.

We've had a radical think about fast food as well as processed food and will now just make the effort to make dinner ourselves no matter what – even if we don't feel like cooking! - sincerely annoyed Rachael by email.

(later) I did forward a copy to FSANZ (for what good it will do). And I will forward a copy to Dominos as well.  I've got extremely itchy hands today and my face is getting itchier and more sensitive as the day goes on - it's also a bit puffy and I'm sneezing lots.

I was reading your failsafe information on the internet and came across the article on food additive 635. I couldn't believe the high number of people who seem to be affected by this nasty additive and I am sure you have seen thousands of cases like this but if you are interested here is one more!

My 3 year old son has had a nasty reaction to what I believe to be the additives found in a box of chicken flavoured rice crackers (621, 631 and 627) I am not sure if it is the same as these reactions described in your factsheet but I do know that as his mother it is very worrying that such a small child can have such a severe reaction to what I thought was a "healthy" alternative to snack foods!!

Within minutes of consuming these crackers Lachlan had started breaking out in welts all over his arms and torso. He is also allergic to peanuts and my initial reaction was that this was peanut related however now I am not so sure. The rash was very severe and would fade in and out for weeks (it lasted 6 weeks in total) He was extremely irritable and uncomfortable for this whole time and his behaviour was erratic with major mood swings. I have attached a photograph of his reaction for you to view – Marnie, WA.

Hello, I am 26 and since May have had shocking hives. I have seen an allergy specialist and he’s put me on a low allergy diet, very similar to what I have seen of yours. I have just bought Fed Up and Failsafe Cookbook today, …I am going to continue with the diet and go through the whole process and see if I have any other reactions. I will let you know the outcome. …I know at my worst (which now I am pretty sure in hindsight relate to consumption of the 600s) I was seriously ready to go to hospital and was having trouble breathing, missed 3 weeks of work in one block (then I had a month as holidays in July so I could get better which most of I was pretty sick), and have just had another 5 days of my life ruined. I think I have reached a turning point.

After sending you the email last night, I thought about what I had really done the week before I got sick. I had been really "healthy" and had consumed a cup a soup a day that contained 635 and because I was allowing myself to have a small special treat, I was having a dim sim or one chicken wing ding covered in chicken salt. And due to being sick, I wasn’t cooking from scratch as much any more using things like powered cheese sauce more than I ever had.  For the last few months I can safely say that I would have been consuming this substance at least once a week, more than likely more even if it was a small amount, usually in things like a few hot chips and gravy down the club or wonton soup for lunch or kfc on the weekend or huge amounts in cheesey pastas. No doubt, I have been unknowingly putting myself through utter hell.

I was having trouble breathing due to the swelling of my tongue and throat. My tongue felt like it was bitten really hard and I had difficulty swallowing, even water.  I haven’t talked about it  much because my family and boyfriend would freak if they knew how bad it was. I got through it by using the breathing method I learnt when I had whooping cough. I have constantly suffered for a swollen throat (not huge, but a slight discomfort) for along time and have had trouble taking tablets etc without my throat been red because it was swollen.

[See] a picture of me at my most beautiful. The funny thing is, I had to show the people I worked with and friends the pictures because I don’t think they quite believed me that I have such a problem. They have come up with some good nick names for me. Notice my left eye is slightly puffy too. They also have puffed up a few times, sometimes, like the lips, worse than other times. In this picture, it took about 2 days before they went back to a reasonable level. And this hurt. I could feel the fluid seeping into my lips. Usually, my lips swell the day before I have a major rash. The welts I had at times were as more than a couple of mills off my body. The most painful ones were probably on my breasts or on the inner thigh. As you already know, they itch like nothing else. I remember getting bitten by jelly fish and sea lice over the years, I always had a bad reaction needing a bit of Phenergan but this is ten times worse. My boyfriend kicked me out of bed a few times at first because he could not handle my moving around. Now, he understands I can’t help it.

(later) I am feeling better every day in my actual body, but I am still getting the hives all over my body. They are smaller and less itchy, but it seems like they are in places they really haven’t been much before. Last night my lip puffed up a little so it now looks like I have a cold sore, and I have about ten spots on my face. They aren’t itchy, and like all the other ones on my body now, they aren’t as red or welt like as before, just smaller and more of them. I am guessing that this is the last of this leaving my system, but it is just a worry that 12 days after I last consumed 635 I am still affected. Can this take this long to leave? Are there other cases of it taking this long? I am still following the failsafe diet to the t.

Even though the rash is worse, I definitely feel better in the head, much clearer and waking up not tired. My pmt this month is a bit better and I have less bloating and tenderness, not that it was that bad, but I can never figure out how when on the pill, the body knows to bloat up. Guess its just the extra hormones that have built up. Have checked pill packet, only got them in July, halfway through breakouts.- Alison, NSW.

On Thursday night my husband bought some marinated chicken at Safeway supermarket! I thought it tasted wonderful and really enjoyed it. Then the next day I woke up I looked like I had been bitten by some insects. I am allergic to insect bites so I didn't think anything of it. As the day went on it got worse I was at work and my whole legs broke out in the most severe itchy rash ever. I knew that there was something wrong the day before I went to beach I thought I was allergic to the salt water, when how could this be I’ve been to the beach my whole life.

By the time I got home from work, I was itching like crazy I put calamine lotion on it and it seemed to give me some relief, but it just kept on. At this stage I was worried I was alone, I thought I had caught a fatal disease like hepatitis or some thing, I was thinking suicidal thoughts, I suffer from depression and I was really thinking of offing myself, I tried to call family and friends no one was home. In desperation I went on the Internet to self diagnose myself. I typed in ‘rash’ in google not knowing what to look for. Your website came up at one of the top 10 searches. When I read the stories, some of them I could relate to but others I wasn't sure and still had some doubt. Then I thought back to the chicken, rang my husband he rang Safeway supermarket and they told him yes that it contained the flavour enhancer 635.

By the time my husband came home I had a rash everywhere over my body except my face - they were hives, some the size of 20 cent coins all over me big welts everywhere. I went the emergency department at Monash Medical Hospital in Melbourne, we talked the doctors and nurses about your website. I was at the emergency ward for three hours that night I was prescribed two medicines Promethazine hc1 (phenergan) Prednisolone (panafcortelone) an antihistamine and steroid. After two hours the welts and swelling began to calm down. I will be taking these medicines for the next three days.

Since suffering from this I am not buying any foods with additives in them. I am going to shop organic where ever possible. I have had to miss days of work before of this rash and I even contemplated suicide if it was for your website I don’t know what I would have done, thank you so much – Rachel.

I would like to share my personal story of hell from eating flavour enhancer 635. I have been suffering from a maddening itch and rash for over 2 years now, and I am quite sure that I would still be suffering from it had I not found your website. I am a 33-year old American female, and I moved to Australia just over 2 years ago. At that time I was riding my push-bike up the east coast of Australia, from Byron Bay to Cairns. Somewhere around Gladstone, I started to break out in the itchiest hive-rash I have ever had in my entire life. Naturally at first I thought it was heat rash which I have had before while cycling in other countries, so I bought some prickly heat remedy. In the past that has always worked, but this time it didn’t. The rash just itched and itched to the point where I scratched the skin off, and I just wanted to rip off my flesh.  Everyone told me it was stress from the cycling and heat, and I believed them. When I stopped cycling, I went to Sydney mainly because it was winter there and I so desperately wanted the rash to calm down but it got worse. I would wake up at night scratching, and my eyes often swelled up, I had heart palpitations, fever-like symptoms, and occasionally I would wake up with huge bruises as well. Hot showers would always make it worse. I tried every cream on the market, but the only thing that worked was calamine lotion. I thought I was dying. The itching was absolutely maddening.

Everyone told me it was stress, but I knew that it wasn’t. I have read other people’s stories on your site, and I am so envious of people who figured out what it was right away from one chicken or dried soup. But for me, I had no idea that a food additive was causing my misery. I am a vegetarian and eat pretty healthy.  From what I can gather, I got this ‘ribo rash’ from our Friday night pizzas in Sydney, as well as the occasional Dorito and sakata cracker.  I also have eaten the veggie burger from Hungry Jacks occasionally, and I think all of these things combined with the physical stress of the cycling cause me to have the initial outbreak of ribo rash.  The problem for me though was that I could not see any pattern in what was causing it. Although deep down I really felt like it was something I was ingesting.  For a while, I actually started to think that I was allergic to the water in Australia.  Also I wanted to mention that the rash started on my breasts, arms, and lower back, and eventually spread and moved its way around to my torso, legs, back, face, and neck. In addition, I would get these ‘waves’ of heat and unwellness that I could feel travelling up and down my body.  It is really hard to explain, but I am sure that anyone who has felt it will understand immediately.

This rash made me completely weak and debilitated, to the point where I turned down job offers and could barely even function. For a while I really did think I was going to die. My relationship suffered so much too because I felt so physically unattractive, and to be honest even during sex all I could think about was the rash or the itch or both. Looking back, I don’t know how I made it through. I decided to leave Australia and go to Thailand for medical treatment because at that time I had no medicare card. Spending those 6 months in Thailand probably saved my life.  Really I am shocked that no one has died from this yet. Anyway I was allergy tested for the basics such as wheat, gluten, etc, and everything came up fine. I stayed in Thailand to do meditation in case it was stress and I did a lot of fasting and eventually the rash cleared up.

When I came back to Australia, I was so happy that I battled my ‘mystery illness’ and I was so happy to have my life back. Sadly though, I was only in Australia for 5 days when the rash came back.  I cannot explain the frustration to be back at the very beginning. I got to that stage where I just accepted the fact that I was going to have this rash for the rest of my life. My family and friends all believed that it was stress, and that made me feel worse because I started to feel like everyone thought I was crazy.  Every now and again I would have a big blow-up, where my face and lips would swell up with fluid and my eyes would get so puffy that I could hardly see.  Every time it happened the swelling seemed to get worse and worse to the point where I was definitely at risk of anaphylactic shock.

I went to more doctors. I was tested for everything, including Ross River fever, heavy metal poisoning, strep infection, staph infection, and HIV.  Everything came up negative. The doctors would tell me it was eczema, give me cortisone, and send me on my way. It was so frustrating; even when I told them the rash did not respond to cortisone, they still couldn’t figure it out.

Eventually I decided to adopt a gluten-free, wheat-free diet in a desperate attempt to stop the rash and I took a job at one of the island resorts on the Great Barrier Reef. There were no shops or restaurants, so food choices were very limited. After 9 months of gluten free eating I was still suffering from this insane rash. One day I had a salad for lunch. About an hour after lunch, my face felt like it was on fire and started swelling up like a balloon until it was so swollen I looked as if I had been beaten up. The only thing I had eaten all day was a raw veggie salad with Master Foods salad dressing. Well, the salad dressing just had to be it, and what is often found in salad dressing but 635 … Some internet research the next day led me to find your amazing site after two years of hell, and I wept as I read so many stories exactly like mine.  Finally I could prove that I was not crazy. Two months later, my rash has completely cleared up after eliminating 635 from my diet.  After two years of trying everything else and having no results, the rash is gone.

One thing I know for sure is that this additive is a killer and it must be removed from all food in Australia and elsewhere in the world. If my body rejects it so violently, imagine how a small child may react – Jennifer Qld.

After reading the Ribo Rash Factsheet it appears this would have been the culprit.  My son's scenario was exactly the same as another child on the fact sheet with the map like raised hives all over his body and swollen eyelids and mouth.  It did take 1 week of prednisone, 2 weeks of antihistamines for the hives to disappear and a full 4 weeks for the facial flushing to go. Although I've always been careful about checking for MSG and sulphur dioxide in food since he was a baby (because he is a mild asthmatic) I had no idea that they could list something like 635 under the labelling' No MSG added'.  He did stay at my sisters the day before he reacted and ate chilli popcorn which had the No MSG labelling but now I'm fairly convinced that was it as he has been tolerating all the different natural food groups we have reintroduced him to since being on the elimination diet - he is now up to the very high list of the food groups and doing well although we still use sorbolene for bathing and moisturising as the skin on his face especially seems to be sensitive even though it's been 3 months since his severe reaction – Deborah by email

Our 1 year old twin boys started reacting to something they were eating about 2 months ago. It seemed to happen after they had eaten a sandwich.  At first we thought it was the food acid in the jam or cream cheese so we eliminated these from their diet.  But a couple of days later they had a reaction after eating bread with Devondale Extra Soft butter on it.  We looked at the ingredients and came across 635.  We had only been using this butter for about 2 months. We have stopped using this butter and will continue to watch out for 635 in other products.  The boys’ reaction entailed an itchy red and blotchy welt-like rash on their face and a severe and painful nappy rash all over their bottoms and genital area.  We hope that this flavour enhancer and the associated reactions become general public knowledge and 635 is banned from use – Katrina from Brisbane, Qld. (Note this product no longer contains 635 after pressure from the Food Intolerance Network).

I had no idea that other people were suffering in a similar manner to myself. I am more than happy to contribute my case to your case file.

Last July (2002) I consumed roast chicken that caused a dramatic rash to appear all over my body. I was sure the roast chicken was the cause as I had noticed on two previous occasions severe thirst and disorientation after consuming roast chicken bought from a Woolworth’s supermarket.  On the third occasion I had the same symptoms plus the rash. The rash was so severe that I was required to take oral cortisone to suppress it, as antihistamines had no effect. I enquired with Woolworths as to the ingredients used in seasoning the chicken and was informed that 635 was the sole flavour enhancer.  I saw an allergist about a month later who dismissed my view, saying that it was more likely to be a non-specific reaction that would eventually die down and disappear. I didn't subscribe to that diagnosis and decided to stay away from roast chicken for my health's sake. I began to notice that it would flare up occasionally (this is after taking the antihistamine zyrtec continuously for 3 months) after eating out or consuming commercially produced foods. I was particularly upset to discover that some of these products did not contain 635 but 631 which gave me the impression that I was becoming hypersensitive to additional food additives. I now realise from the fact sheet available from the ACA web site that 635 is a combination of 631 and 627! I have found 631 in a commercially available salad dressing to which I reacted badly. The rash usually starts on my upper thighs around my backside and travels down my legs. It also appears on my back and shoulders. At its worst when it first appeared it was also on my face and torso. The welts were large, covering a wide area, very hot and maddeningly itchy.

The most disturbing aspect of this situation is that 635 is being used in takeaway foods and I also suspect in restaurants. The consumer has no way of knowing that 635 is present in the food.  I am beginning to avoid all commercially prepared food. Can you believe it?  Imagine if I became anaphylactic to this substance. Just last Saturday night I attended a wedding reception and cautiously ate the three course meal provided, avoiding the gravy on the meat, only to find the rash reappearing by the time I got home. Another disturbing symptom that has only accompanied the rash twice (the second time was early last Sunday morning after the reception) is a very strong sensation of 'knotting' in my oesophagus. It’s similar to the feeling of eating a lot of food too quickly and having to wait for it to travel down. It comes in waves, like contractions, and I wonder whether it is the peristalsis of my oesophagus firing unnecessarily. It has woken me from sleep on both occasions and I find that it responds to taking an antihistamine. I am more than willing to be a part of the 'clinical evidence' required to nail this damn additive – Anna by email.

I am a 33 year old mother of two who had a severe allergic reaction last Sunday and was sick for a week.  I woke up Sunday morning with a red angry blotchy rash all over my body and my legs were burning.  I said to my husband to call an ambulance as I nearly fainted and felt like vomiting at the same time.  The next day a doctor put me on Prednisolone tablets which I was on for a week.  I also took antihistamines and smothered myself in Calamine lotion but nothing seemed to ease the rash which turned to severe hives all over my body.  I couldn't sleep and would be awake in the night clawing at my skin for some relief.  I ended up bathing in Pinetarsol Solution which eased the itching.  I was told that looking for the cause of the reaction was like "looking for a needle in a haystack" and I could not think of anything I had done differently.  So to see your story last night about 635 was fantastic as I could immediately relate to the people in the story.  I am sure it was from eating the Continental Oriental Fried Rice packet mix on Friday night and also Saturday night for tea.  I had a slight rash on my stomach on Saturday afternoon but it wasn't until Sunday morning that the severe reaction occurred.  I checked my cupboards and 635 was also in Continental Macaroni Cheese as well.  Let’s hope it can be removed from foods before someone has a fatal reaction.

[later] I wish I had taken photos.  I have thought a lot about the feeling of passing out and feeling like throwing up at the same time.  I am wondering if it was a shock reaction of looking at my body covered all over in an awful rash and not knowing what it was.  Although my entire body was swollen at the time particularly my stomach, neck and face.  So maybe it was a bit of both. I feel so much better now I am avoiding food with any of the 600 numbers in them.  I have actually lost a lot of weight.  I could never understand why I couldn't lose weight and would feel bloated a lot of the time.  I was even asked one time at a visit to an osteopath whether I was feeling ok because she thought something was wrong with my intestines as I was extremely bloated.  It was suggested that if the swelling didn't go down I should get it checked out by a doctor – Carolyn by email.

My 2 year old son came out in a raised rash which we had no clue what it was ... I told my mother-in-law and she just happened to mention that they had a TV program on a rash that came out after eating foods with Flavour Enhancer 635.

When I looked on the internet and saw the photos of the rash, it looked exactly like the one he had.  Then I remembered that at the time I first saw the rash on him it was at Pony Club the previous Sunday and I was out with my 5 year old son riding and my husband was back at the car minding the 2 year old.  That morning when I was with the other child riding, the 2 year old told my husband he was hungry, so he got him some Arnott's Shapes (I think Chicken Crimpy) out of our picnic basket.

We usually have a barbecue lunch with all members when they finish riding, but this must have only been early.  At lunch time when I went back to the car I noticed that half to three quarters of the box had been eaten and asked my husband if he had any and he said "No".  Usually we don't like him to eat more than a couple of crackers, and try and give him more substantial stuff as his diet is poor as it is not being able to have fruit and most veges.  As my husband was studying, and not watching him too carefully, the 2 yr old had devoured so many of these.

I realised when I saw your web-site that this is what has caused this raised rash.  He has eaten so many, and it has affected him.  Normally too, we don't usually give him that brand of crackers.  I have since checked the couple of different brands of crackers we normally give him and they do not contain Flavour Enhancer 635.  My 5 yr old had wanted these to get the Tongue card out of them.

In the future I will not ever be buying these, and my mother-in-law and our family will check everything for this flavour enhancer, BEFORE purchasing anything.

P.S. I saw the Arnott's Shapes biscuits were reduced in price this week (very cheap) at Woolworths, and when I was shopping there last night, plenty of people were putting them in their trolleys ... I felt like putting a sign up on the shelf in front of them warning people not to buy them ! – Dale from Sydney.

I have never suffered any kind of food allergy in my life (43 years) and then about ten weeks ago I found myself suffering from an extremely intense and constant itch of my hands and arms. After two days of this I found I had come out in hives, starting on my upper chest, abdomen and back. It then spread to my arms and my legs and from then on each day might be different combinations of location of the hives, but always somewhere. They were worse at night causing intense itch and lack of sleep, I can't begin to tell you how unbearable the itch was and how it affected my everyday living and my ability to work. On several occasions my lips have been swollen and I find on occasion that although my upper lip doesn't look particularly swollen, it feels 'thick' and like I have been to the dentist. Once my eyelids puffed up too. Through studying the foods that I had eaten I became almost 100% certain that it was 635 causing my problem. For almost two weeks I avoided all foods containing this additive and was finally able to come off the antihistamines I had been forced to live on. I then ate a seasoned lamb steak bought from my local butcher and the next night the hives were back. Guess what? On contacting the butcher concerned, he was able to tell me that the seasoning used on those steaks contained 635.

I wish this product had never been put on the market. I'm sure it is what, to put it frankly, has caused me absolute hell almost continuously for over 2 months. I have a referral to see a Dermatologist soon and I am hoping that she will be able to confirm my suspicion so that at least I will know what to look out for – Debbie by email.

A couple of days after initially eating a meal my partner and I made using a recipe mix containing flavour enhancer 635, I broke out in a rash over my neck and upper torso.  This quickly spread to the rest of my body the following day. The itch is unbearable, especially around my neck area, arms and breasts. The doctor didn't seem to believe that it could have been this enhancer, even after I showed her an article published in the Melbourne Sunday Herald Sun on 9 March 2003 entitled "Allergy hell in food additive".

It looks to me that there are many people who are intolerant to this additive and I believe it should be banned.  This is the first time I have ever had a rash of this magnitude develop and I am not impressed. The rash went away after about 5 days - thank God. After my wedding I will try eating the same mix again just to be certain my reaction was to 635 - I don't want to risk it before then as I want the existing spots to go away. These are from scratching too much.

It does not affect everyone, but those that it does, have several days (if not weeks) of unwanted physical discomfort. I am 33 years of age and this is the first time I have ever experienced a food allergy - Debi by email.

Thank god for people like you!  I saw a segment on A Current Affair tonight and talking about 635.  Instantly it explained my frightening rash.

I have never had a skin reaction to anything before but within hours of eating Coles Instant Noodles (with 635 - I just checked) I broke out in big welts on my thighs.  They spread up my tummy to my chest, under my arms and down my arms.  It was so frightening.  I went to the doctor and he couldn't identify it beyond saying I'd probably eaten something.  By the time I got home it was up my neck and half way up my face.

The antihistamines he gave me helped somewhat.  When I woke up in the morning it was almost gone but then it reoccurred during the day and if anything was worse.  By the time that night came my ankles had swollen and my skin was red and tight and very hot.  It came and went for three to four days. Now I know what to stay away from - if I can – Denise by email.

I have suffered terribly from this additive for a few years now becoming extremely ill whenever I eat anything that contains 635. I have to be so careful what I eat as I become extremely ill where I have to spend 5 to 7 days in bed, with very severe headaches, where even the strongest painkiller gives no relief. Then there is the vomiting for up to 4 days, where I cannot even keep a sip of water down. I would imagine food poisoning would be similar to what I go through. I often feel like I could die, or if not, I almost wish that I could, as I feel so ill and the pain in my head is so severe. It is not always possible to know what I am eating, as some things are not clearly marked, and restaurants do not tell you the truth either, as they are just not aware of how ill a person with this allergy can get.

So, I am fighting a losing battle where I can eat less and less these days, which is becoming very frustrating! I hope you can continue to publicise this problem to make these manufacturers aware of how much many people are suffering. What was wrong with foods before all these additives? Why can't we get back to the basics? I hope this clarifies it a bit more for you, and hope that someday, someone can do something to stop companies from "poisoning" half the population. Because believe me, when you suffer from this only once a month, it does ruin your life – Trudy by email.

I am 57 years of age last October I got asthma and since then have been rushed to hospitals and doctors with hives and swollen lips and a rise in body heat where I feel like I am burning and my blood pressure rises all of  which is very frightening. I have to have an injection of phenergan at that time and am monitored until my body settles and I also take zyrtec on a daily basis and carry a puffer.

Neither the doctor nor myself have been able to pinpoint the cause of these allergic reactions - is it wine? is it peanuts? all the questions with no answers where I have tried to introduce the things I thought may cause it but when I try I gag at the thought because it is so frightening but the next thing I know I am reacting again and not knowing what caused it made me too frightened to get on a train or a plane where I would be confined to not be able to get immediate medical attention.

My brother told me of the ACA segment on food additives and as I had missed it I went onto the site and I am so relieved to now know exactly and I emphasize exactly what it is that is causing these allergic reactions. When I think back to the potato chips, the pie, and the Woolworths chicken. Not that this makes it right it just makes it that now I know but the question remains Why? Why is it allowed to be used? MSG caused such an uproar that people stopped buying products with it added so now another additive is just as bad or worse. I am sure that this additive has caused deaths. When are the companies going to stop using it? When they are being sued? Maybe everyone who has had a reaction to this drug should band together and take on the Companies so that they realize the danger to our lives.

[later] I was so careful yesterday to what I ate during the day and shopped for groceries reading all labels and today I awoke with no hives and no swelling. Such a relief.

When I was at Woolworths purchasing the groceries I asked at the chicken section for the ingredients in the basting etc of the chickens and an employee took out the book of ingredients in their food supplies and read it out to me and there was additive  635 being used in the stuffing so I will not purchase any more chickens from there and I would have purchased one every week as well as when having parties I would purchase 3 to 4. I will assist in any way possible in the future
with this additive being withdrawn from use.

[later] I wrote to you last week regarding my allergies and I have had no reactions since refraining from using 635 - Elaine of Rockhampton QLD

I recently had two serious anaphylactic reactions which I attribute to 635.

- 12 Dec 02 Went to bed at 11pm (6 hours after I'd eaten some pizza shapes) awoke at 1am with fully swollen tongue, difficulty breathing, unable to speak. No rash, no asthma - in fact no other symptoms. Spent 2 days at the Alfred Hospital.

- 01 Jan 03  Developed a rash which moved around my body all day. Hot, moving spots. Awoke at 3.00am next morning with same reaction as above - swollen tongue, unable to speak, but with the rash continuing and with chest pains.  Used an Epi Pen to relieve symptoms and spent the day at the Alfred Hospital. No known cause of this episode

There was a third reaction, more mild, which was relieved by tablets.

In each case, prior to the reaction, I experienced extreme chronic tiredness. Had to cancel New Year's Eve arrangements, due to tiredness. Have undergone complete tests through allergist at Alfred Hospital, with no result - Gail from NSW

I recently developed a deep red rash around my mouth which progressively got worse whereby my lips became incredibly swollen and I experienced a severe burning sensation.  It also started to spread to my eyelids and became extremely dry and itchy.

I started to eliminate new products I'd purchased, for instance, hair goods and face washes.

Finally my mother heard about 635 and rang me to enquire if I had been eating anything with this food additive.  I instantly went to the bin to retrieve the packaging from the rice crackers I had been eating and sure enough there it was.  I instantly stopped consuming these crackers and have avoided any products since which contain 635.  The rash has disappeared and there has been no re-occurrence since.

I would also like to add that in conjunction with my mouth and my eyes, I experienced a dryness on my scalp at the back of my ears.  One Sunday, when the rash on my mouth became quite severe, I visited a doctor at a Bulk Bill Clinic, who took one look at my scalp and diagnosed it as dermatitis, suggested I use an anti-dandruff shampoo (even though I told him I didn't suffer from dandruff) and he prescribed a cortisone product to use.  I explained that I had been using a cortisone cream, previously supplied by a chemist, and although I experienced some relief to my eyelids it really didn't assist with my mouth or my scalp.  He strongly insisted that's what it was and cortisone was the best option, and if that if it didn't improve I should come back and he would refer me to a dermatologist.  I checked with the pharmacist and found that the prescription would have cost me $25 for a very small bottle of drops.  I chose not to purchase this product and was very angry and frustrated by the whole experience.   Shortly after my visit to the Doctor I discovered the real cause of my rash.  I appreciate that doctors are unable to know every new ailment that occurs, however, firstly I felt like I was brushed off without any real consideration of my problem.  Let's face it, when your lips are red raw and swollen like mine were, you've got a legitimate problem.  And secondly, if I was able to discover the cause of my complaint with relative ease then I do question whether this doctor is adequately keeping up-to-date with what's going on around him. Perhaps I should drop off a copy of the fact sheet to the surgery?

I am prepared to go through testing if it helps to raise awareness and get this food additive removed from food products and I will be telling everyone I know to avoid products containing 635 - Jan of Mt Evelyn.

Here is another story that is now "making sense" given the many I've read on your webpage.

During the final week of my first pregnancy I developed a rash that looked precisely like the ones in the photos on your webpage.  It was on both my legs and similar to the other stories, the itch was maddening and sleep was impossible (given that I was at term this didn't bother the doctors).  My GP sent me to a dermatologist who prescribed oral steroids and colloidal creams, which had no effect.  I was told it was probably just pregnancy, and as with another of your stories, the rash cleared up after the baby was born.  As this was five years ago you would think I'd have trouble remembering a specific food cause, but funnily enough one of the things I've always remembered fondly about this period was the lack of guilt I felt for eating takeaway chicken 3-4 nights a week.  It was 35 degrees outside and I didn't feel like cooking.  When I came home from hospital my Mum was there and helped with the cooking.  We ate no more take away from that shop.

What I am now thinking about is the fact that my son was diagnosed with anaphylaxis related to extreme food allergies at age 5 months.  His main problems are dairy, egg and peanut, but even with a total avoidance of these triggers, he usually has a blocked nose and dry, itchy skin.  My second son has asthma and to date, touch wood, my daughter has excellent health.  I have been told by doctors that the milk I drank whilst breastfeeding probably exacerbated my eldest's food allergies, but I am now wondering about the food additive issue in late pregnancy.  I realise that until we get the issue of food additives on the agenda for primary sufferers, there is no chance of research into the effect on unborn babies, but I am voicing my concern on both issues nonetheless.  I came to your site after an article in the paper about food additives and behaviour issues, I am now thinking about the ramifications for our family's overall health.  I will now start looking at additives in our diet and take note of any changes - Jane from NSW

Well thank you ...I have finally been able to put a name to the itch I developed late in 2001, although I am not a big eater of chips or what seem to be the main culprits, I still suffered for over 7 months with the rash, nothing would seem to stop the rash. I removed all processed foods from my diet and after about 2 months the rash disappeared. Although I never knew what caused it, so began to eat normally again and in the last 2 months I have developed the rash again, so now I know what it is I can adjust my diet . (My diet) contained Devondale (blended) butter, I used that quite a lot but since the rash I have been using Nuttelex, I will definitely be more vigilant with my buying of foods – Jayne by email.

I am not game to even contemplate eating anything with 635, as once I knew what my reaction to MSG was like, I found out the hard way, and saw the flavour enhancer 635, so I thought it may be OK. My face swelled up, I developed a rash all over my face and neck, and consequently all the skin peeled off my tongue, inside of my lips and gums. You have never seen such a mess!! At least I didn't have to go through what these little kids had to suffer and their poor parents. I just couldn't eat anything much for a few days!! – reader by email.

Two months ago I too broke out in a rash covering at first my torso, which eventually spread partially down my legs. I found myself scratching uncontrollably and was so puzzled as to where this came from. I found the ACA story amazing. Then after the show I started going through my cupboards, and to my amazement I discovered a particular 'cup a soup' which contains the additive 635, that I have bought recently which is not a regular item on my shopping list.  At present, the rash and welts have gone down, but I’m still scratching as a partial amount of the rash remains. How do these companies get away with it?????? – reader by email.

I am not sure whether I am a sure case, but your article on ACA definitely made me think about my problem and mysterious itching. I have been waking with welts on my body, not unlike mozzie bites, but extremely itchy, and quite hard. Thinking there was a spider or something similar in my bed, I changed the bedding, and spray my room before retiring to bed every night. But still they would mysteriously appear. I got them on my hips, breasts, legs and arms, not many, but enough to be worrisome.

Now I know more about 635, I am willing to put these itches down to the snack-sized packet of chips that I have been eating every day after work (I usually only have them once a week, but have been on teaching rounds and come home starving!) Add that to the Asian food I have eaten, plus the many gravies and sauces, I may have just found the cause of my problems. Now, I must leave you, to go and scratch my itches! – Fairlie by email.

I have been experiencing an unknown rash on and off for about 2 years now. I had the rash recently and this time it was severe and was all over my body. On other occasions it was only in small patches. Sometimes on my torso and other times on my back. I have an extremely healthy diet and eat fresh food everyday. I don't eat fast foods and rarely eat any form of junk food. The last rash was awful. Legs, feet, hips, torso, back and neck. Prior to the outbreak I had extremely hot skin and itchy arms. 24 hrs after the itching I noticed some spots on my stomach. By the time I arrived home the following day my body was covered. It has taken 7 weeks for the scarring to settle. This is the case every time the rash breaks out.

I went to the doctor on a couple of occasions. I was told it was pityriasis rosea and on another occasion I was told it was shingles. I studied my eating habits very closely until I worked out the cause. I have always had a suspicion that it was chicken stock. And now I am positive. After making my favourite Greek Lentil Soup the rash appeared. On this occasion I accidentally added extra chicken stock. I ate the soup for 2 days. This time with the extra stock the rash went crazy. My last outbreak had occurred after eating the soup also. I do not use any chicken stock at all now. I have been made aware of 635 by a mate who also experienced rashes from eating certain foods. His rashes are confined to his feet. Thanks for the story. I am not alone! – Luke, Melbourne.

I am now 58 yo, I came across your information by accident while looking for something else on the net. I was dumbfounded when I saw the pictures of the effects of food additives, this was what I had for nearly 3 years!

I could not believe it, mine too started in the early hours of the morning with dreadful itching, by the time I got up my thighs were black and bruised from rubbing them. Over time this went and the welts came all over my body. I looked like I had been beaten, I also had rashes, itchy and painful, the only part that was not affected was my face and head.

So many Doctors and tests, and so many creams and tablets. And nothing would stop it. I had tests that showed I was allergic to things I had never had (like horse hair and oysters). Eventually I was told "it’s emotional" or it could be change of life.

It never occurred to me that it was the food I was eating as I had changed very little in the way of diet. I would have meat pies or sausage rolls at least once a week. I still do not know which one started this torment off but I have thrown out everything in my pantry with 635/621 – Maree, NSW.

Over the past 2 years my husband has had a rash, which failed to be treated by the dozens of creams numerous specialists prescribed.  Recently, when it reoccurred again, we thought to look at the label of the cheese and onion flavoured chips he had eaten the day before.  Sure enough 635!  We then looked at the foods he commonly eats, and sure enough 635.  As a Dietitian I didn't even think of this until checking out your website. Thanks for your hard work over the years with food intolerance.  It is certainly much appreciated by many clients who have benefited in my practice as a Dietitian - Frances from SA.

I started to react about 18 months ago. My skin felt like it was on fire and the itch was unbearable. The 'welts' that raised on my body, where any restrictive clothing touched my skin, including bras, panties, shirt stitching etc... would remain for days, even weeks depending on how severe the attack was. I tried everything to find the cause and find a cure. It was only when reading an article in the Herald Sun that I realised the woman was recanting exactly how I reacted. She told of her allergic reaction to 635. I used to have Continental chicken noodle soup every single day, at work. (Summer or winter). I loved the stuff. I also ate Lays flavoured chips, packet gravy.

I have since eliminated everything with 635 in it out of my diet. Although I still have 'flare' ups I can actually work these back to pre-prepared food...Dolmino spaghetti sauces etc...I found that I cannot have any food with 621, 625, 627 or 631. I react to all of these, and was wondering if any one who has had a severe reaction to 635 finds they react to these others as well. I have recently learned that 635 is a combination of 627 and 631. Foods to avoid like the plague are:

Red Rooster both chicken and chips

KFC both as above

Mac Donalds - I only ever ate their chips but flavour enhancer is in the salt.

All flavoured corn chips, CC's Doritos...Pretzels with added flavour. (Cracked pepper have no flavour enhancers listed)

Maggi packet gravy

San Remo pasta and sauce sachets

Continental chicken stock

All stock cubes

I have recently been told that some foods may have flavour enhancers added but do not have to list them because the percentage is so low.

In fact if the word flavour is on the label I will not purchase that product now for fear of it causing another reaction. My doctor did not know what was wrong with me when I saw him about my rash months ago. He gave me Periactin, an over-the-counter antihistamine that works well, although I have had to half the tablets because they also make me extremely drowsy.

If any one needs proof that these flavour 'enhancers' are reactionary I would be happy to prove it. It doesn't take a brain surgeon to see the cause and affect of these additives. I have had to restrict my diet, to avoid coming into contact with these 'poisons', because that is what they are to me. I am basically going through detox/withdrawals at the moment, which are causing headaches etc...

If the Food Standards people want to try to 'fob' this off, perhaps we who are suffering should take them to court for compensation - you know pain and suffering - because believe me, we are suffering. At 38, and having suffered for almost 2years with this, I can't imagine what it must be like for the little kids who react as we have! – Melanie, email.

My son is 14 and has been diagnosed with having severe allergy reactions to 621 and 627 flavour enhancer. All the foods you list are foods that he also can’t eat. He can have very severe reactions to these where his throat swells and he can’t breath and other times where he comes up in welts all over his body and lips and eyes swell quite severely. I have four boys and it becomes very difficult to feed them with one being allergic to so much food – mother, Victoria.

I believe that I am yet another victim of flavour enhancer E635.

I had a strong allergic reaction to "something" in Early February of this year.  At first I thought it was a prescription medicine that I have just started taking (again).  I stopped taking my medicine but nothing improved. I was confused because this medicine had never caused a reaction before.  My Doctor suspected food or some kind of virus.

I suffered the following reactions: (in order of appearance)

*       Burning sensation to the skin

*       Rash on my feet

*       Raised rash on my chest and then sides

*       Severe, raised, rash on my back and very itchy legs and arms

*       Mild stomach upset

*       Heavily swollen face and lips ( 3 occasions)

*       Mild anxiety

The symptoms lasted for about 5 days and required 3 trips to the Emergency ward of the Royal Melbourne Hospital, seven days off work, a stay over night in Hospital and even a trip in an ambulance.  Needless to say, my wife and I were greatly distressed during this ordeal. I then read about E635 and discovered that it was in a wider range of foods that I had expected.  Tracing back through foods I don't normally consume I found that the probable culprits were either a seasoning mix for a popular Taco Dinner Kit OR two sausage rolls I had consumed.  Both foods were consumed about 20-30 hours prior to the initial reaction.  The long delay led me to blame the prescription medicine.  I never knew that a reaction could take so long to appear. I am now loath to consume E635 in any form again in case I suffer an even worse reaction. Please feel free to use my account (less personal details) on your site, or, in your battle with the authorities that permit such chemical junk to enter the food chain. Keep up the good work – John, Melbourne

Recently I had my 13 year old son at the doctors for a facial rash that was preventing him from going to school.  The rash was only on the face and neck and was beetroot red.  The doctors told him that he was allergic to the sun.  This is a child that you cannot keep inside.  I have since found out about 635 and have taken him off all of the known products.  (Which is difficult considering how a 13 year old growing boy eats.)  His skin could not be better.  We now watch everything that he eats.  Thank you for all of your information.  It is great to know that we are not alone – Jacqui by email

The rash is finally on its way out, I've had to eliminate lots of things, tomatoes, red wine amongst them and one that I only started to appreciate much later in life, garlic (sob, sob). Anything with 635 is an absolute no, no. Keep up the good work – Phil by email.

More Articles ...

  1. [510] 635: Not to let her eat anything like that more than 5mins from a hospital (January 2006)
  2. [511] 635: My hands burn, then I get a rash all over (January 2006)
  3. [512] 635: Rash all over arms and legs (January 2006)
  4. [513] 635: The itch is unbearable at times (January 2006)
  5. [514] 635: Uncle Tobys salt and vinegar popcorn (January 2006)
  6. [515] 635: Lasted two weeks and was agony (January 2006)
  7. [516] 635: Sitting in my loungeroom sobbing (January 2006)
  8. [517] 635: Scratching myself to bits (January 2006)
  9. [518] 635: Flavoured cornchips (January 2006)
  10. [519] 635: He said food additives do not produce a long lasting reaction like this… (January 2006)
  11. [520] 635: My throat feels 'thick' (January 2006)
  12. [521] 635: Incredible rash with itching (January 2006)
  13. [522] 635: Poisoned by a Coles hot chicken (January 2006)
  14. [523] 635: No history of allergies (January 2006)
  15. [524A] 635: Country Ladle soup (January 2006)
  16. [382] 635: Irritable bowel symptoms (December 2005)
  17. [377] I thought we were low salicylate (breastfed baby) (November 2005)
  18. [378] Mr Revolting due to dairy (November 2005)
  19. [379] Behaviour due to hairspray, airfreshener (November 2005)
  20. [380] 635: Lasted two weeks and was agony (November 2005)
  21. [381] One liners (November 2005)
  22. [296] Rough, dry skin responds to failsafe (September 2003)
  23. [369] You didn’t mention the failsafe diet was also cheap (July 2005)
  24. [370] 210: Asthma and benzoates in medication (July 2005)
  25. [371] A reaction to instant noodles as seen by a psychologist (July 2005)