FOOD INTOLERANCE NETWORK FACTSHEET
MSG boosters: Ribo Rash (flavour enhancer 635 or ribonucleotides E635, 627, 631)
Reader comment: "The crystal meth of MSG" - Shawn
Keywords: itchy rash, redness, swelling, ribonucleotides, 635, 627, 631
Welcome to our special feature on the effects of new additive ribonucleotides (flavour enhancer 635, a mixture of 631disodium guanylate and 627disodium inosinate), which cause what we call Ribo Rash.
This set of additives seems to be very different from all other additives. As well as the usual effects of food additives (such as children's behaviour problems, headaches, heart palpitations, irritable bowel symptoms) this group can cause an unbearably itchy rash or welts and/or possibly life-threatening swelling of the lips and tongue up to 48 hours after consumption. The rash can come and go and last for up to two weeks and can affect people who have never in their lives before suffered from itchy rashes.
The delayed long-lasting reaction means that most people don't realise the cause of their symptoms. Some consumers have suffered an unbearably itchy rash for years before identifying these additives as a problem. In some people and possibly unborn babies, a reaction to 635 seems to have triggered severe multiple food intolerance.
Flavour enhancer 635 (ribonucleotides) was approved in Australia in December 1994. This new additive is a combination of disodium guanylate (627, originally isolated from sardines, now made from yeasts) and disodium inosinate (631, originally isolated from the Bonito fish, now made from yeasts).
As a group, these additives are known collectively as ribonucleotides, nucleotides or scientifically as 'the 5 prime nucleotides'. In the USA, these additives are called Food Flavor Enhancers Disodium Inosinate (DSI or IMP), Disodium Guanylate (DSG or GMP), and the combination of IMP and GMP (I&G). IMP, GMP and I&G are also known as nucleotides. Reactions can range from a single itchy rash to life-threatening swelling of the lips and tongue. If you eat these additives once a week or more, you may appear to have a chronic rash. You don't need a history of rashes or food allergy. Anyone can be affected.
Effects of MSG increased 10-15 times
Scientists have found that the flavour enhancing effect of MSG is increased up to 10 to 15 times when MSG is used in combination with ribonucleotides. (Ref 'Yeast Extracts: production, properties and components' by Rolf Sommer, paper given at the 9th International Symposium on Yeasts, Sydney, August 1996.)
'No added MSG'
MSG (monosodium glutamate) is normally listed as flavour enhancer 621, but can also be listed as hydrolysed vegetable protein (HVP), hydrolysed plant protein (HPP), 'yeast extract' or even 'natural flavour'. Many products claiming no added MSG will contain ribonucleotides as well as a source of natural glutamates.
Not for babies and young children
Ribonucleotides are not permitted in foods intended specifically for infants and young children, and people who must avoid purines for conditions such as gout are advised to avoid these additives.
Reactions to nucleotides can range from a single itchy rash to life-threatening swelling of the lips and tongue. If you eat these additives once a week or more, you may appear to have a chronic rash. You don't need a history of rashes or food allergy. Anyone can be affected. Some people are affected by the more usual reactions to food additives – irritability, children’s behaviour problems, headaches, irritable bowel symptoms - but what makes these additives different is the number of rash reactions in people who are usually affected in other ways.
Reactions to ribonucleotides are difficult to identify because they are not a true allergy. They can occur within minutes or can be delayed for hours or even days.
Most doctors, allergists and dermatologists appear to have no knowledge of the effects of these additives.
Symptoms have been variously misdiagnosed as a virus (including chickenpox and pityriasis), psoriasis, shingles, chronic eczema, dermatitis, dandruff, allergy to soaps and detergents, food allergy "but it could be any one of a thousand foods, you'll never work it out", a "non-specific reaction which will eventually disappear", hypersensitive vasculitis, allergy to sunlight (rash on face and neck), pregnancy, menopause, 'emotional', foot-and-mouth disease (rash inside mouth), ideopathic anaphylaxis, and "it couldn't be a food additive because the reaction wouldn't last that long".
What to look for
1. You are any age, either sex.
2. You may have never noticed a reaction to food before.
3. Your reaction may be:
- itch without rash
- mild to severe itchy rash (the itch may be unbearable and prevent sleep)
- mild to severe swelling of the lips, throat and eyes (technically called angioedema) with or without rash. Swelling of the lips, throat and tongue can interfere with breathing - seek medical help.
- loss of consciousness due to the above
- other common food intolerance symptoms, such as irritability, children's behaviour problems, difficulty falling asleep, headaches, irritable bowel symptoms including sudden diarrhoea, and alarming heart palpitations
4. You have eaten foods containing 635, 627 or 631 minutes or up to 48 hours or more (can be the previous day or two) before the onset of the symptoms.
5. You may have eaten these foods before safely but in smaller quantities or the food manufacturers may have just starting using these additives.
6. The rash can last for a week or two or even longer. It may come and go and travel over the body during that time.
7. If you eat products containing 635, 627 or 631 at least once week, you will appear to have a chronic condition which can last for years.
8. Breastfed babies can be affected by this additive passing through breastmilk. The rash may be misdiagnosed as infantile eczema.
Look for 635, 627 and 631 in tasty processed foods such as:
- instant noodles, flavoured chips, CCs corn chips
- flavoured (eg BBQ, chicken) biscuits and rice crackers
- packet or canned soups or stocks and stock cubes
- pies, party pies, sausage rolls
- some instant mashed potato
- seasoning in the stuffing of supermarket fresh chickens
- flavouring salt added to hot chips or rotisseried chickens
- flavour added to frozen turkey
- pre-prepared or instant sauces, gravies and meals
- salad dressing, Greenseas salsa-flavoured tuna
- Devondale Light with Calcium
- pasta meals including macaroni cheese
- marinated meat from your butcher
- sausages from your supermarket or butcher
- some fast foods such as chicken, chips, batter for fish, Hungry Jack's vegie burger
- check even fresh chicken labels closely as there have been some recent reports
- seafood extenders
In the USA, food flavor enhancers are most commonly used in dehydrated soups and gravies; canned meat, sausage and fish; soups and gravies; fish (preserved); sausage; prepared meals; tomato sauce and ketchup; mayonnaise; snack foods (mix in salt); soy sauce; crab, prawn and shellfish (preserved); Asian cuisine; prepared vegetables and a variety of other products. More information from www.truthinlabeling.org
Reactions are related to dose
You may be able to eat a certain quantity of these additives - eg a packet of flavoured chips every day - safely, but just a small amount more may cause a big reaction.
Reactions can occur up to 48 hours or more after eating this additive. One woman ate rotisseried chicken on Friday evening, started itching in bed on Saturday night and got up on Sunday morning to find she was covered in an unbearable itchy rash. She blamed the food last eaten (Saturday night's meal) and phoned to enquire about preservative in wine. It was only when we went back through everything eaten in the last two days that we found the culprit.
Avoid ribonucleotides, sodium guanylate or sodium inosinate (flavour enhancers 635, 627 or 631). Some people find they do better if they avoid all 600 numbers including MSG 621. You will have to:
- read labels
- ask about ingredients in fresh unlabelled foods such as sausages, sandwiches and prepared meats
- phone restaurants before you visit (ask to speak to the chef)
- talk to your child's teachers and carers
- teach your child which foods to avoid at parties and when visiting friends
- Calamine lotion
- White antihistamine tablets like Claratyne. Telfast is OK too.
- If you are desperate, your doctor can prescribe cortisone cream. Some people need oral steroids or adrenaline.
- Tell us. We are keeping a register of reactions. We have been lobbying the national food authority (FSANZ) to investigate the effects of ribonucleotides for years.
- Tell others.
- Politely inform the food supplier or manufacturer of your reaction. They will probably deny it, tell you to consult your doctor (who almost certainly knows nothing about these reactions) and possibly be very rude, but the more complaints they get, the more they are likely to listen.
Why are these additives permitted?
Food Standards Australia New Zealand (FSANZ, www.foodstandards.gov.au) is in charge of approving food additives. FSANZ acknowledges that a certain percentage of the population will suffer adverse reactions to food additives. FSANZ policy is that people who are affected should read labels and avoid the food additives which affect them. Although this sounds reasonable, unfortunately, the majority of people who are affected by ribonucleotides - and their health advisors - don't realise the cause of their problem and therefore can't choose to avoid them.
Who can you complain to?
At present in Australia there is no government-funded institution that is prepared to accept consumer complaints about adverse reactions to food additives. The government regulator Food Standards Australia New Zealand (FSANZ) doesn't want to know - see their letters and responses here.
We recommend you report your reaction politely to the manufacturer of the product. They are likely to deny the effect, but in the long term they will change.
Other additives and natural food chemicals can also cause rashes. For more information, see our factsheet on eczema and other itchy skin rashes.
Reader reports on reactions to food additive 635 (77 pages pdf)
 635: 6 year Ribo Rash due to chicken seasoning? (October 2012)
"I developed this terrible itchy rash six years ago. The doctor doesn't know what caused it. He just gives me steroids but it doesn't really help. Sometimes the rash drives me mad ...Yes, I do eat BBQ chicken once a week. No, I've never heard of ribo rash." - senior at a roadshow 2012 talk
WARNING!!! This sounds like a typical Ribo Rash due to ribonucleotide flavour enhancers 627, 631 or 635 used in "chicken seasoning" on the skin of BBQ chickens and many other foods - the rash is delayed and can last for a week, making it seem like a chronic rash not a food reaction - however, we are now receiving the same reaction reports due to cooked chickens with chicken seasoning additives "yeast extract, natural flavours" so it seems manufacturers have found a way to avoid listing Ribo additive numbers. See our Ribo Rash factsheet http://fedup.com.au/factsheets/additive-and-natural-chemical-factsheets/635-msg-boosters-ribo-rash-ribonucleotides-627-631
 635: WARNING - ribo additives in "yeast extract, natural flavours" chicken seasoning? (October 2012)
A few weeks ago I developed burning red spots like tiny bee-stings all over my face, also my mouth and tongue are burning so much it is hard to eat, my tongue feels a bit swollen and even my ears feel a bit the same. People who don't know me just think that I have red cheeks, but I don't normally have red cheeks, and the burning sensation is really painful. I also feel like I have a bit of asthma (I never had asthma as a child). The only time I've had anything similar was when I tried a bite of my boyfriend's crab in an expensive restaurant and straight away my lips started swelling and tingling. I went to a doctor but she just said it was a bit odd and prescribed an antihistamine. The pharmacist said the prescribed antihistamine was old fashioned and recommended a different antihistamine and said I should carry it with me at all times.
I read the Ribo Rash factsheet on your website and thought about everything I've eaten - for each of the last two weeks I've bought a cooked chicken from the supermarket, eaten over several days. I've eaten these before, but it turns out they are now adding seasoning with "yeast extract, natural flavours". I complained about that and they just said it's not them doing it, it's the suppliers. A few days ago I had a meal of tinned salmon and plain rice - I've eaten hundreds of cans of the same product for years with no problems - and the burning seemed to get worse. Now I'm scared that I may have developed an allergy to seafood. I'm 44 years old and before this happened I was perfectly healthy. Now I'm scared to eat anything in case I get worse. - Liz, NZ
Commercial rotisseried chicken
The latest report of a reaction to flavour enhancer 635 involves commercial rotisseried chicken. Remember that reactions can occur up to 30 hours later or more. A woman ate rotisseried chicken on Friday evening, started itching in bed on Saturday night and got up on Sunday morning to find she was covered in an unbearable itchy rash. Of course she blamed the food last eaten (Saturday night's meal) and phoned to enquire about preservative in wine. It was only when we went back through everything eaten in the last two days that we found the culprit.
"A maddening itch"
In response to the articles I have seen on your website, I am 99% sure that my 30-year-old husband has a nasty reaction to 635. He had been complaining of a maddening itch at night on occasion, like he was shedding skin, and it was almost impossible for him to sleep. The last time it happened he had eaten Maggi 2-minute noodles earlier in the day. It was serendipity that a few days earlier I had been researching food additives in relation to migraines and found mention of the dreaded 635 and then thought to check the labels on everything he had eaten. We now consciously avoid anything containing 635, and to date he has been itch free. - Rhonda, by email
"I'm 56 and another victim of 635"
"Congratulations on an excellent website, I wish I'd found it a few months ago when I was scratching myself until I was bleeding from the worst rash I have ever had. Just in case some people think that food additives only affect children, I'm 56 and another victim of 635.
"I believe that packet soup was what triggered the rash, then things like BBQ chicken from Woolies, pizza and even KFC, although I can't prove that it contains 635 (but I bet it does) … The most amazing thing is that neither my allergist nor my dermatologist had heard of 635. I could have saved the $1000 that I spent at the specialists. My allergy specialist says I can now safely eat those foods again because the rash has gone but I won't be charging into a 635 diet to see if it comes back. Nine months of hell was long enough for me."
Here is a typical response:
"I ate just a few CC's at a staff function. Within an hour I had a red rash and itch like that from a caterpillar inside my right elbow. By the time I went to bed I was scratching myself all over the armpit and upper body. Having a shower really made it go, across my chest and up my neck on the right. The next morning at an aerobics class I had a red rash over my entire right body from the waist up to my neck, where it formed an unsightly and extremely itchy vivid red high-water mark around my neck.
"Three days later I still have lumps and itches in my right armpit and up to my face. I seem to have become hyper-sensitised to other allergens that rarely affect me, sneezing, scratching and itching. If I hadn't seen this all happen to my son I wouldn't believe that it was caused by such a small amount of an additive. And I know that it will last a week, based on his experience."
And here's one that appears to be anaphylactoid:
"I have a story regarding flavour enhancer 635 from the eight-year old boy next door.
"Last year he ate a pie bought from a bakery shop near his mother's workplace. Not only did he get the skin reaction he also suffered a life-threatening anaphylactic-type reaction with swelling of mouth, tongue and throat. The doctor (fortunately a doctor's surgery was just around the corner) who treated him said that he was probably a matter of minutes away from death. He remained on antihistamines for weeks and missed a lot of school. For days his lips protruded four inches or so! The family was unable to find out what was in the pie and so the cause of the reaction remained a mystery.
"A little over a month ago this child was given two or three CC's by a friend at school. Within a short time his arms were itching and his chest was covered in red and white wheals. This reaction was not as severe as the pie incident (the dose was no doubt much lower). I think that reaction took a week to subside.
"His mother has commented that this boy has had no problems of this kind until last year, although he does have a history of mild asthma.
"It wasn't until I was looking through your web site that I found the more-than-likely culprit. The family is very grateful. Once again
"THANK YOU! Surely 635 cannot go on being legal - if it was a drug it would be taken off the market or used, if deemed necessary, with extreme caution under hospital conditions, I'm sure!
These detailed anecdotes are backed up by e-mails from all over Australia and New Zealand about the effects of this additive. There appears to be nothing in the scientific literature about these effects of this additive.
Here are some brief stories:
- Soon after its introduction an NT pediatrician asked us which ingredient in Maggi two minute noodles could cause 'a dramatic skin eruption' in a four year old boy
- nearly 6 year old girl from NT developed an intensely itchy skin rash 24 hours after a class party with party pies, pediatrician at hospital prescribed Phenergan, 3 others in class with milder rashes
- 55 year old woman from SA, developed a dramatic rash that lasted two weeks after eating Gibbs party pies, antihistamines were not very effective
- 13 yo boy from NT developed an intensely itchy skin rash from the soles of his feet to the top of his head after eating a pie at a friend's place, the contents of the pie could not be determined
- 11 yo boy from NT developed an intensely itchy skin rash from 30 hours after eating party pies at a class party, the rash spread from chest to feet, then from chest to top of head, reappearing for 10 days. Missed one week of school. One other in class with milder rash.
- 2 yo girl from Victoria, developed a dramatic all-over itchy skin rash after eating Maggi instant noodles for dinner. Rushed to emergency room at midnight, needed antihistamines for two weeks. The family's regular brand of noodles (all the same ingredients except for 635) do not affect her.
- 50ish woman from NT, developed a mild but persistent skin rash after changing brand of frozen pie eaten once a week. New brand contains 635.
- 40ish man from Qld, developed constant itchy rash over the last two years, eats CC's corn chips (containing 635) every day
- 50ish man from NT developed a dramatic itchy rash within hours of eating "a few" CCs corn chips.
- A pregnant woman in the NT who developed all-over itching was told it was due to pregnancy. Sure enough, after the birth, the itching stopped. When the baby was four months old, the woman watched a grand final on TV with a plate of party pies to hand - the first time she'd eaten them since having the baby, although she had eaten them constantly during the pregnancy. The next day the itching started again.
- 8 yo boy from NT, ate one packet of Lays Country Style Sour cream and Onion chips on Easter Saturday (wanting the Pokemon card inside). The next day he ate another half a packet and developed a "head to toe itchy rash like a map of Australia, huge and bumpy" according to pharmacy assistant. Eyelids started to swell. He presented to a pharmacy with the chip packets and his parents saying, "we think it was these". Contents included 635.
Here are some more detailed stories:
- "I woke up at 3.30am on a Sunday covered with a rash, particularly bad on arms and torso. My face was very swollen and lumpy. The rash was terrible, the facial swelling was quite frightening and I felt as though I was gasping for air at times. My doctor said because it was all over my body, it was likely something I had eaten. The only thing different I had was a vegie burger from Hungry Jacks that I ate shortly before going to sleep. I went back later and asked about the ingredients. The only thing that I was not sure that I had eaten before was additive 635 (it was the only additive). I’ve never experienced a reaction like this. In the past, when I have had allergic reactions, the result has been hives, not rash, and always cured quickly by an antihistamine tablet. This time I had to take a course of antihistamines and steroids. I assure you I won’t be consuming this 635 again. It has been a most distressing experience for me and caused me to cancel my holiday. It is almost incomprehensible that this additive is allowed (without any sort of warning) if this sort of reaction can occur." (Brisbane)
- "My 16yr old son had a bout of hives last year. Covered his arms, legs and body in large swollen itchy welts. Telfast 180mg stopped the itching and reduced the swelling, but we could still see the red welts. For almost a week he woke each morning with the welts raised and itching again. We couldn't identify anything different in his diet or environment. Two weeks later he had another outbreak, similar in intensity. But this time I realised that both times it happened after he had worked an 8hr shift at a charcoal chicken shop. He has worked at this shop for over a year, and eaten there with no problems. However, it was unusual for him to eat both lunch and dinner at work, and for him to choose chicken and chips, smothered in gravy, for both meals in one day. He read through the ingredients of everything used in the shop, and found that the 'chicken flavouring' added to the stuffing includes E635. This same chicken flavouring is mixed with salt and sprinkled on the chips. The gravy mix used also has E635, and the chicken flavouring is added to the gravy, so there's a double dose there. He has since avoided eating large quantities of E635, ie. he doesn't eat the gravy, he leaves the 'chicken salt' off his own chips, and he's careful to monitor the quantity of 'chicken flavour' added to the stuffing mix. He's had no hives at all since those two episodes. I'm very concerned that the shop owner had no idea that E635 could cause reactions, and that there is no real control over the amount of E635 in any one meal. E635 is in the 'chicken flavour' added to gravy, stuffing and salt. The 'chicken salt' is liberally sprinkled on chicken and chips. How much my son ate that day depends on who made up the gravy and stuffing, and who salted the chips, because there are no exact measurements." (Kiera)
- A mother from Melbourne who reacts with a quick, dramatic skin rash (excellent photos are available) to flavour enhancer 635…in Doritos, CCs and a particular flavour of rice crackers. Her 9-year-old daughter also reacts to this additive (after eating only two CCs), with "crabbiness, itchy eyes and black circles under her eyes, like someone has punched her in the face." (Food Intolerance Network letter in response to query from TV producer).
- "One of my friends had a frightening experience on Christmas Eve, which we thought may have been caused by 635 in corn chips. She has never had a reaction like it before, but had eaten quite a few corn chips (and not much else) at a family outing...here is part of what she wrote: - there was one bottle of mineral water, one bottle of wine, 2 packets of corn chips and a salad consisting of lettuce, tomato and cucumber!! Not only that but halfway thru the nite I started to get these itching lumps on my neck and legs. Felt ordinary for the rest of the nite and next morning I noticed more lumps and my ears were red hot and swollen. Managed to get thru the day okay but I didn't feel much like eating and was tired. Next morning…I woke absolutely burning and covered in lumps (or hives as you have probably figured out). I tried to get up and shower but I fainted…my lips swelled up and (my husband) was in a panic. The doctor came and gave me an anti-histamine and within an hour I was better but my blood pressure remained low and I had to stay in bed til my body battled whatever I ate that I was allergic to. Today I am better…the hives are beginning to go and no new ones are appearing. I can walk but I have to tell you I am scared. I don't know what I ate…I think maybe the corn chips...they were flavoured." (Melbourne)
- "I had an itchy rash a few weeks back that kept me up all night. I thought it might have been a reaction to a new soap, but then I remembered the 635 in CCs…I had dug into a larger packet than usual. I hadn’t had any other processed food. I haven’t had CCs or the rash since then." (Sydney)
- "I realise that Jake is very sensitive more than most, but he also had a very severe reaction to 635…He broke out in a hive/welt rash and also had swelling in the throat and breathing difficulties. The doctor gave him an injection which helped, but the redness was there for days along with headaches. And I also react…I also get welts the size of plates and severe headaches for days where I can’t move." (Sydney)
Here are some of the hundreds (!) of reports that have arrived since this web feature was first posted in September 2002:
More photos (September 2007)
 635: 'Knotting' in the oesophagus due to 635 (August 2006)
Another disturbing symptom due to 635 that has only accompanied the rash twice 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. - by email.
 635: Spasms of the oesophagus due to 635 (August 2006)
On occasions my tongue would swell and my eyelids would swell up and I couldn’t figure out what it was. I’d been to doctors and a naturopath and I was still getting it, and then I read an article in the Sunday Sun, and it was all my symptoms on 635 and that the reactions would take 48 hours or so to come out. I thought “that sounds like me”, so I eliminated them from my diet, and then I ate them again, and within two or three days the reaction came out, so I stopped it again, and to be sure, I ate it again, just to see what would happen, and it came out again, but I also get what I was told was spasms of the oesophagus. I started off thinking I was getting indigestion, and it would just pull really tight across my chest. It would last for hours, and I thought I was dying. - verbal report after presentation.
 635: Irritable bowel symptoms (December 2005)
A few weeks ago I started having a Continental Low Carb instant soup every day. I knew the 635 was in there, but thought I didn't react to it. BIG mistake. No doubt you're expecting a description of the rash and swelling. Yes, I did get those, but not until week 2.
In week 1 my stomach progressively got sicker and sicker. By the end of the week I could only lie on the lounge and visit the loo. The doctor diagnosed mild food poisoning that turned into a very nasty stomach bug. Antibiotics and no food for three days cleared the bug. So what did I do? I had a miso soup from a local Japanese restaurant. A few hours later my stomach started going odd again and I began to itch. By that night the typical 635 rash and unbearable itch had set in. For some bizarre reason I didn't think of 635 with the miso. The next day I had one of those damn instant soups again and of course the same thing happened but worse.
Needless to say I have ditched the soup and banned 635. My son is actually quite pleased because one of the things that make him itch makes Mummy itch, so he feels a little less alone about it. The itch and rash have gone, but my lips are still very dry and cracked. But I have LEARNT MY LESSON! – Megan NSW,
 635: 'This damn additive' (June 2003)
Thank you for bringing this horrible food additive 635 to the attention of the media. Until the program on ACA, I had no idea that other people were suffering like me.
My problems started in July 2002, when I ate 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 Woolworths supermarket. On the third occasion I had the same symptoms plus the rash. The rash was so severe that I needed oral cortisone. Woolworths informed me that 635 was the sole flavour enhancer in the chicken. I saw an allergist a 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 was affected by other commercially produced foods, including a salad dressing which contained 631. 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 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. I recently 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.
I now religiously read the ingredients provided on packaged foods and have stopped eating Asian and Indian takeaway and takeaway pizza.
Are you aware of an allergy clinic in Sydney that screens for allergy to 635? If so I would very much appreciate the details as I am more than willing to be a part of the 'clinical evidence' required to nail this damn additive. - Anna, NSW, 35 years of age.
 635: 'At death's door' (June 2003)
I am 58 years old and came across your website by accident. I was dumbfounded when I saw the pictures of the effects of food additives 635. This was what I had for nearly 3 years!
I could not believe it. My symptoms 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 scratching. Over time this went and welts came all over my body. I looked like I had been beaten. I also had rashes which were itchy and painful. The only part that was not affected was my face and head.
So many doctors and tests, 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 horsehair and oysters. To top it off I started to get fungal infections in my fingernails. I had bouts of crying and wanted to die.
Eventually I was told it could be emotional or change of life. Then in June 2002 I started have rigors (uncontrollable shaking). I ended up in hospital, where I had every test under the sun including biopsies. My body was swelling up and I had blood tests every couple of hours. My temperature would not come down. I was seen by the elite of dermatologists and a professor of infectious diseases who told me that 'sometimes the body will not reveal its secrets'. They called what I had 'hypersensitive vasculitis' or a toxic shock from an unknown source. They said that I was at death`s door. Then my temperature went down and I was discharged.
It never occurred to me that it could be the food I was eating, as I hadn't changed anything. I would have meat pies or sausage rolls at least once a week and sometimes pizza. Eventually I cut out processed foods and now make my own sausages rolls. I still do not know which one started off this torment but I have thrown out everything in my pantry with 635/621 and my symptoms have gone away.
At the very least, these food additives should be listed in bold lettering or a different colour. - Maree Lowe.
 635: Call an ambulance (April 2003)
I am a 33 year old mother of two. I woke up one Sunday morning with an angry red blotchy rash all over my body and my legs were burning. I asked my husband to call an ambulance as I nearly fainted and felt like vomiting at the same time. A doctor put me on Prednisolone tablets 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 on A Current Affair was fantastic. I am sure my reaction was from eating 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. Thank you, and let's hope it can be removed from foods before someone has a fatal reaction.
 635: Afraid for my safety (April 2003)
I began to suffer strange, itchy swellings about seven years ago and spent a lot of time and money going back and forth to my doctor to try to ascertain the cause and a treatment. As you guessed, he couldn't find a cause. I gave up asking and had to suffer in silence. I have consulted doctors only when the swelling occurred in my tongue and throat to such a degree that I was very afraid for my safety. These swellings have probably occurred on a two-monthly basis for several years, with some incidences being more extreme than others.
Since the article appeared in the Melbourne Sunday Herald Sun about 635, I have tried to be very careful about what I eat, and check, where I am able, that any foods I consume do not contain 635. I have noticed a reduction in occurrences, although one morning I woke up looking like Eddie Murphy in the Nutty Professor. It was interesting to read that rotisseried chicken can be a culprit, as this is one thing I have eaten recently, before suffering an occurrence which I could not explain otherwise. Thanks for getting the information out there. You may just save some precious lives. - Cathy, Vic
 635: Ten week rash from 635 (April 2003)
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 two months. - Debbie, by email
 635: itch was unbearable (April 2003)
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. - reader, by email
Reader reports on reactions to food additive 635 (77 pages pdf)
Fed Up by Sue Dengate, Random House, 2008
The information given is not intended as medical advice. Always consult with your doctor for underlying illness. Before beginning dietary investigation, consult a dietician with an interest in food intolerance. You can see our list of experienced and supportive dietitians http://fedup.com.au/information/support/dietitians
© Sue Dengate September 2007