STORIES & OPINIONS 7
Readers are invited to
contribute to this section. Please send your stories and opinions to suedengate@ozemail.com.au. State
whether you would like your name or email address used, or to remain anonymous.
Some names have been changed to protect privacy. My mailing address is PO Box
718 WOOLGOOLGA NSW 2456
NOTE THAT
STORIES ABOUT ADDITIVE 635 APPEAR FROM [475] – [524A]. THE LATEST STORIES
(November 2006) ARE [459] – [474].
[524A] 635:
Country Ladle soup (January 2006)
I have experienced a very severe reaction to Country
Ladle soup a couple of weeks ago. I started taking Livatone and the rash
started the next day, so naturally I thought it was the tablets. I contacted Dr
Cabot's website and informed them of my symptoms. I ended up in hospital as I
could not breathe and was administered an IV line. I had the same soup a week ago
and had exactly the same symptoms and that was when I thought that it could be
the soup, as I stopped taking the Livatone after the first rash appeared. Being
diagnosed with Chronic Dermatitis, I was used to a bit of a rash when I come in
contact with deodorants, but have never experienced anything like this before.
Needless to say I was off work for a week and was given steroids and cortisone
cream. I will definitely read ALL labels from now on. – Zonja,
[523] 635:
No history of allergies (January 2006)
I am a 25 yo man from
Thank you for your exposé on this
"poison". I believe many people out there are suffering - but
are just taking antihistamines and living with the problem. If there's anything
we can do to help your cause in getting this rubbish off the shelves - be sure
to let us know!!!!!!! –
[522] 635:
Poisoned by a Coles hot chicken (January 2006)
I have just been "poisoned" by a Coles Hot
chicken. After eating it for lunch and dinner I got a terrible migraine with vomiting
and nausea. The migraine was terrible and lasted for 5 days. I read the
bag and found that it had it had at least 4 lots of flavour enhancers in it,
including the stuffing, marinade and seasoning. Just another thing
I can't eat out in case it came from Coles. Also Devondale now has
flavour enhancer in their soft spread. Of course I wouldn't buy it but
who knows what you get when you buy a sandwich out. Where will it
end? Everyone is trying to poison me.
I was very angry at the time (and still am) that some
people can poison my food and not care that I'm extremely sick and lose 5 days
out of my life having to cancel all arrangements etc. I wrote to Coles
…(and) Safeway…(and) Devondale… I will purposely avoid all their products. I also
spoke to KFC and found there is nothing I can eat there except a dinner roll as
everything has flavour enhancer in it. It is so difficult now going
out to people homes or functions where you get served chicken and feel
it's rude to ask where they bought it from but too scared to eat it. With
the Devondale spread it's even worse; it could end up in cakes, scones,
sandwiches from anywhere.
Now I have to ask “What brand of butter do you use in
your cakes, sandwich etc" before I buy it or eat it. Life is
getter harder with these additives. The food must be pretty tasteless if
they have to use enhancers all the time. – Wendy.
[521] 635:
Incredible rash with itching (January 2006)
Just a quick note to say that after catching a small
piece on ACA last night I think I'm also a victim. In the last year and a half
on about 4 occasions I have broken out in an incredible rash with itching that
almost drives me mad. The red lumps end up turning into sores before they
finally heal and slowly get better, it takes weeks for it to go away. I get
them all over including the palms of my hands, soles of my feet, inside my
mouth, (therefore was told I had foot and mouth disease) I get a fever, filthy
headaches and have no energy whatsoever. I actually have a mild case right now.
The last 2 times I had it I was out of action, not able to work for a week at a
time. Hope this will add to your effort to have something done about these
shonky chemicals and the shonkier people who are responsible for their use –
reader by email.
[520] 635:
My throat feels 'thick' (January 2006)
This afternoon I discovered the effects of 635.
When I eat foods like chips and things that are very processed I find my throat
feels 'thick'. It feels a bit lumpy and like I am getting a
cold. Most times after friends parties I get this throat thing... after
reading about the 635 I figured it could be related to the CC's etc I eat
occasionally. Also I always get it after eating 'Arnotts
Shapes' and '2 min noodles' – 14 yo girl, by email.
[519] 635: He
said food additives do not produce a long lasting reaction like this… (January 2006)
I am writing to share my daughter Freda’s experience.
I suspect she is currently recovering from an allergic reaction to 635. She is
turning 2 next Saturday and we are hoping she will have recovered sufficiently
to celebrate. I have a history of
allergies and asthma in my family, so have always been careful when introducing
Freda to new foods. However, until now she has appeared to have escaped the
food (and other) allergies which were a problem throughout my childhood, but
does have a Penicillin allergy (it gives her a rash).
Ten days ago (Friday) Freda woke with a rash all over
her torso. By that evening it had spread all over her body, including face,
hands and feet, and she had developed a fever. We took her to
The next morning I took her to our GP and he was
perplexed. He was trying to find some sign of infection to explain why her
temperature was still up. He advised we switch to using Phenergan to try to
control the itch. I gave her three doses of Phenergan - the maximum available -
that day, and yet the itching continued. That evening we had a repeat of the
screaming and scratching frenzy. We ended up calling an ambulance. By the time the paramedics arrived, Freda had
stopped screaming and was quiet. They were very helpful; one paramedic raised
the issue of this possibly being an allergic reaction but was wondering if it
was something to do with clothes detergent.
They took us to
The following morning we took Freda to see an allergy
specialist. He advised us the rash was urticaria, and his belief was that she
did initially have a virus and her body had an allergic reaction in response.
He advised it could take up to 2 weeks for the rash/itch to clear up
completely. He said the only other explanation would be a food allergy and that
if there was no improvement over the weekend we should bring her back this week
and make changes to her diet. We are continuing to give Freda Phenergan to help
ease the itch. The allergy specialist called me today to ask how Freda was, and
I was happy to report that although she is still itchy, her mood has improved
and the irritation seems to have decreased. He discounted Flavour Enhancer 635
as a possible cause for Freda’s reaction!!! He said food additives do not
produce a long lasting reaction like this… Well, I am not taking any chances.
My mother (a very devoted grandmother) has already
been to the supermarket today and spent some time compiling a list of
biscuit/chip products that contain 635 so we will know what to avoid. Now aware
that 635 can cause the exact symptoms I have seen my daughter suffer during the
past few days, I have reflected on her diet. The day before Freda’s rash first
appeared, she ate something she had never eaten before: flavoured chips. My apologies for such a long-winded letter, but
these details are all too fresh in my mind and it has been an exhausting and
distressing ten days for my family! –
[518] 635:
Flavoured cornchips (January 2006)
Over a month ago I developed an itchy skin rash which
gradually got worse. The doctor could not say what it was even after blood
tests. Approximately two years ago I told my husband that I would no longer eat
flavoured cornchips (cheese or nacho cheese) because I felt strange after
eating them an often woke the next morning with a "hangover" type
feeling. Five weeks ago my daughter and I bought a large packet of nacho
cheese cornchips and scoffed the lot, me eating the most. Almost immediately I
regretted eating them.
Three days later my rash appeared and got
progressively worse. I can only link it to 635. I feel I have it under
control by taking Telfast and using Amcal 1 per cent cortisone cream however it
is not yet gone and at times still drives me crazy. Previous to this I
have been healthy and fit and my only other known allergy is to Penicillin.
It’s getting on for 6 weeks now and if it is 635 afflicting me with this
problem it makes me very angry to think that manufacturers knowingly subject us
to these health risks –
[517] 635:
Scratching myself to bits (January 2006)
One of the pictures Today Tonight aired was of a
person with a red rash on the body. I have been getting a rash like that, as
well as swelling on the eyes and mouth for the past three years and doctors,
allergists and skin doctors can not find the problem.
Could you please tell me what flavours are most likely
to cause this reaction. I will be so thankful if you can help me stop
scratching myself to bits – reader, email.
[516] 635: Sitting in my loungeroom sobbing (January 2006)
Although an eczema sufferer most of my early life (now 50 years old) in the past 12 months I have on different occasions developed a rash worse than anything I have ever experienced with eczema. I have been to dermatologists and allergists and found that I was severely allergic to the dust mite. In the past couple of months I changed all my bedding etc and have been free of rash.
On Saturday night I cooked
apricot chicken. The welts on my body stated to appear again on
Sunday night. I finished the chicken for dinner on Monday evening not associating
it with the rash. Last night I woke tearing my body to pieces.
There were huge welts all over my torso, arms and upper legs. I was in a
terrible state. It was 2 in the morning and I was sitting in my
loungeroom sobbing and distressed. I thought I had found the problem with
the dust mite. This was however was something far worse.
I went into the kitchen and
checked what I had eaten. I had read the article a few months previously
on food enhancer 635. I checked the Continental french onion soup packet
that I had used in the casserole. There was no mention of 635. I
was totally distressed and at my wit's end. I went back to the soup
packet and checked again and saw - food enhancer - ribonucleotides.
I had kept the article on 635. I rushed to my purse and took out the
article. There was the chemical name for 635 - the same as on the soup
packet.
This is nothing short of
criminal that the Food and Health departments will not ban this additive.
To tear yourself to pieces, with huge welts on your body is the most
demoralising thing I have ever experienced. Obviously this had caused
problems for me previously and had gone undetected. Not only do I now
have to wait for the welts to die down, I have scratched up my skin so badly it
will take weeks for that to heal.
I am writing this in the hope
that it may help in having this additive banned. Surely big business
should not come first over the health and well being of Australians –
[515] 635: Lasted two weeks and was agony (January 2006)
Recently I suffered an extremely itchy
rash that kept me up at night and became very inflamed and sore from
scratching. I consulted the doctor and all he could tell me was that it
was a rash, and it could be a virus. That was all he could tell me. That and he
asked if I'd ever had chicken pox ... this rash was nothing like a chicken pox
rash. The rash itself lasted two weeks and was agony, to say the
least. I still bear marks on my arms from scratching. I went
through the usual what did you eat routine and nothing out of the ordinary -
although I did have Hungry Jack’s in the 30 hour time frame.
(Later) As I tend to avoid most overprocessed foods, I
can honestly say that my rash
after 3 weeks is much better. The rash I developed was
small, intensely itchy bumps over my stomach and back, and my arms. These
bumps were constantly itchy, antihistamines helped but did not alleviate
much. I couldn't sleep and felt irritable – although that had a lot to do
with no sleep. However I still have some marks on my arms where I
scratched too hard – reader by email.
[514] 635:
Uncle Tobys salt and vinegar popcorn (January 2006)
I don’t suffer from rashes or food allergies normally,
but tonight I made myself some popcorn, in the box was a smaller packet of salt
and vinegar flavouring, I sprinkled this over the popcorn and ate it (Uncle
Tobys salt and vinegar popcorn. It had a sachet of 635 in it to sprinkle
on the popcorn after you had cooked it in its bag). Within minutes I started to
get a prickly rash under my arm, near my bosom.
The rash got worse and escalated to around my neck up my arms and right
around my right bosom. Within 1 hour of
eating the popcorn I have the rash up the inside of my arms, down my back and
around the back of my neck, up into my hairline and into my ears.
Attached are some photos taken with my digital camera,
due to the lighting it doesn’t show the rash in all its redness. As I am typing
this it is slowly moving all over my torso and arms. I hadn’t eaten anything
else that I don’t normally eat this evening. – reader, Victoria.
[513]
635: The itch is unbearable at times (January 2006)
It started out as what I thought was a
cold sore on my lower abdomen…It wasn't until the size of the rashes grew that
I knew I wasn't dealing with cold sores. I now have three areas on my lower
torso with a fourth area trying hard which are covered with this rash. The
itch is unbearable at times. I try not to itch but sometimes I catch myself out
and it's too late.
By this stage I was getting a bit worried
as to what was the cause for the rash. I ruled out shingles because there was
no pain as such just the itch. It wasn't until I saw the report on 635 on the
website that I thought it was a food allergy. The description of the rash on
the website was very close to my rash so I decided to look into
any foods that had been eating and sure enough there they were.
In Lays Sour Cream and Chives and the new
Spicy BBQ Kettle Chips I found they had the additive and it just so happened
that there was a special on Kettle Chips so I purchased a couple of the large
packets (200 or 250gm) and polished them off over the period of about 3 or
4 days. That was when the huge break out occurred. The initial outbreaks
would have coincided with me trying the new Kettle Chips which would have been
one packet a week which would account for them seeming to go away.
I now check every label when I purchase
them because this rash has severely affected my quality of living. I am an
aerobics instructor and the rash sits just under my leggings waistband and my
microphone belt. I am extremely embarrassed and hanging out for the day I don't
have this hideous itch.
(later) Since my initial e-mail I have
discovered it was probably not just the chips which caused the rash. It
was more likely the combination of a lot more foods than I
thought. I went through my cupboards this evening and was horrified to find
that most of the packaged pastas had either 635 or 627. The new Pasta stops
which are heavily advertised on television at the moment, the macaroni and
cheese has 635 and I was eating these at the time I was eating the chips.
Are you aware that 635 is in Greenseas
Salsa Tuna. That really blew my mind. I was actually eating it when I read the
label. I honestly did not expect it to be in Tuna but there it was.
It's quite disturbing to think we have to
check every label when shopping. What is this world coming too? Here’s hoping
for a 635 free world – Sharon, Melbourne.
[512] 635:
Rash all over arms and legs (January 2006)
My son had been covered in a skin rash all over arms
and legs for several weeks and I couldn’t seem to get rid of it. It seemed
to be getting worse and more severe. He is susceptible to asthma,
allergies and has had mild cases of eczemas - so after all attempts to clear it
took him to doctor. She said it wasn’t any skin allergy and could
possible be a viral or staph infection and gave him antibiotics. It
really didn’t improve after medication.
My sister heard a radio interview on
He loves flavoured chips and 2 minute noodles.
So since hearing about 635 I have been religious about reading labels and have
kept him off 635 to best of my ability. The skin irritation has gone and
has not reoccurred again – Sally by email.
[511] 635: My
hands burn, then I get a rash all over (January 2006)
I have had this allergy for three years and a month
ago I found out why I get it, it’s the food additive 635. My hands burn, then I
get a rash all over, very big welts that itch sometimes. I have swollen lips,
even had it in the throat, on the ears, in the hair everywhere, what can I do
about it. Thanks for letting us know all
about 635 I have been worried what has caused it. Thank you – Ruby by email.
[510] 635:
Not to let her eat anything like that more than 5mins from a hospital (January
2006)
I have recently had my 2 year old daughter at the
hospital for an ear and throat infection, while waiting for the doctor she had
a packet of Smiths BBQ chips. Within 10mins the left half of her face started
to swell then her right, within 7 mins her whole face was swollen. Luckily I
was at the hospital when this happened as they thought they would have to give
her adrenalin to help her breath, but because they were able to administer
antihistamine and Ventolin straight away she was fine and we could take her
home after a few hours. I think a warning of some kind would help, so if it
happens to someone's child they may know what it is, or better still maybe they
could change the additives to something else that can not harm or kill. If I
had not been at the hospital it may have killed my daughter.
I would not like anyone to have to go through that, I
was lucky to be in the hospital and have been told not to let her eat anything
like that more than 5mins from a hospital – Rebecca, ACT.
[509] 635:
So swollen I couldn't talk or breathe properly (January 2006)
I believe I had a very real dangerous reaction last
year to chips whilst I was in early stages of pregnancy. I was admitted to
emergency and due to difficulty breathing a nurse had to stay in with me. They
asked me had I taken any unusual drugs etc and were baffled when the only
different thing I had eaten was flavoured chips. I even took the packet with
me, the reaction started almost immediately. Previously I had only ever eaten
plain, but due to a craving I got a flavoured variety. I thought I was going to
die.
By the time I got to hospital (luckily it wasn't far
from home) my mouth and throat was so swollen I couldn't talk or breath
properly, of course because of this I was treated as high priority and treated
straight away. Thank God I had realised straight away when I got a tingling
burning sensation and felt like I had been to the dentist and had a local
anaesthetic. My mother had said something about these chemicals recently in our
diets (I had actually dismissed this at the time) but thank goodness she did -
Raechel (lucky I think to still be here)
[508]
635: Anything with 635 is an absolute no, no (January 2006)
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.
[507]
635: Allergic to the sun! (January 2006)
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
[506] 635:
Symptoms lasted for about 5 days (January 2006)
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
[505] 635:
He comes up in welts (January 2006)
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.
[504] 635: Just another itchy victim
(January 2006)
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
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.
[503] 635:
Failed to be treated by specialists (January 2006)
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.
[502] 635: I
was told "it’s emotional" (January 2006)
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.
[501] 635:
The last rash was awful (January 2006)
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.
[500] 635:
Not unlike mozzie bites (January 2006)
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.
[499] 635:
Scratching uncontrollably (January 2006)
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.
[498] 635:
Skin peeled off my tongue (January 2006)
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.
[497] 635:
Devondale (blended) butter (January 2006)
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.
[496] 635:
The itch was maddening and sleep was impossible (January 2006)
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
[495] 635:
Deep red rash around my mouth (January 2006)
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.
[494] 635:
Two serious anaphylactic reactions (January 2006)
I recently had two serious anaphylactic reactions
which I attribute to 635.
- 12 Dec 02 Went to bed at
- 01 Jan 03 Developed
a rash which moved around my body all day. Hot, moving spots. Awoke at
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
[493] 635: I
feel like I am burning (January 2006)
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
[492] 635:
Vomiting for up to 4 days (January 2006)
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.
[491] 635:
Frightening rash (January 2006)
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.
[490] 635:
Went away after about 5 days (January 2006)
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
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.
[489] 635:
Absolute hell almost continuously for over 2 months (January 2006)
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.
[488] 635:
Raised rash (January 2006)
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
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
[487] 635: I
nearly fainted and felt like vomiting at the same time (January 2006)
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.
[486] 635:
Rash travels down my legs (January 2006)
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.
[485] 635:
Devondale Extra Soft (January 2006)
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).
[484] 635:
Map like raised hives all over his body (January 2006)
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
[483] 635:
“Hell from eating flavour enhancer 635” (January 2006)
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
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
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
When I came back to
I went to more doctors. I was tested for everything,
including
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
One thing I know for sure is that this additive is a
killer and it must be removed from all food in
[482]
635: Safeway marinated chicken “really
thinking of offing myself” (January 2006)
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
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.
[481] 635:
Swollen lips and shocking hives (January 2006)
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.
[480] 635:
“Breaking out in welts all over” (January 2006)
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
[479] 635:
Domino’s pizza (January 2006)
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
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.
[478] 635:
Roast chicken from Woolworths (January 2006)
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
[477] 635:
Itchiest and annoying response I have ever experienced (January 2006)
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.
[476] 635:
Even felt suicidal (January 2006)
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.
[475] 635:
Severe irritable bowel symptoms (June 2006)
I knew I had food intolerances to the Nightshade
family of foods so I had been avoiding them and my symptoms were much improved
but even when I was sure I hadn't eaten any of them I would occasionally get
severe sudden reactions: severe irritable bowel symptoms, a slight but very
itchy rash and a severe feeling of nausea.
From looking at the responses on your website and
finding a lady who said 635 in soups was the problem for her I went and checked
the packaging of what I was eating and I realised flavour enhancer 635 was the
common link for me. At the times I had sudden reactions I had been eating foods
like Continental cuppa soups, packaged noodles, and beef stock, which all had
635 in them. Thanks for helping me find and kick this unhelpful additive out of
my diet – Selina by email.
[474] One-liners (November 2006)
·
After
seeing your DVD, we immediately cut out all dried fruit and muesli bars from
our two-year-old’s diet and were absolutely stunned to see that her persistent
cough that usually kicks in around
·
I
first read Fed Up seven years ago when my then 3-year-old was suffering severe
eczema. I started eliminating additives
and colours and her eczema went in a week and has not returned.
·
We
solved my father-in-law’s severe eczema after visiting your website. He was
using Wintergreen and Deep Heat to relieve joint pain symptoms and
dermatologist couldn't cure his problem at all. Since following the low
salicylate diet, he is 100%. He can not believe that the stiffness, aching
joints and bad eczema have all disappeared.
·
We
are attempting to do this in a split family. When I first started my son’s dad
was not on board, however, he is now seeing the amazing changes and is slowly
becoming more failsafe as time go on.
·
My
three-year-old son has been on the diet for three months now and it has been a
miracle for our family. He has no eczema, his behaviour is fantastic (the sweet
gentle caring child I knew was hiding in there somewhere), his faeces are back
to normal, he has not had a runny nose since starting the diet, no abdominal
pain and he goes to sleep and sleeps all night with no night terrors (we were
dealing with three or four a night). WOW, what a difference. We have found he
is sensitive to amines and salicylates.
·
Thank
you for providing such an informative website without requiring payment to view
the information - it shows that you all really care about helping these kids
and their families.
·
My
10-year-old daughter recently started becoming tearful and depressed sometimes
- I was amazed when she worked out it was a reaction to sharing her Dad's chips
- 'It's the flavour enhancers Mum, they just make me want to cry for no
reason'.
·
You
were right about salicylates! My six year old son has improved so much more now
that we are avoiding them.
·
My
hayfever has completely disappeared and my two children have become angels on
this diet - my 2 year old has stopped her temper tantrums and is sleeping
better and my 5 yr old son is like a new boy, happily playing on his own for
hours, drawing, building blocks. He realises that "food with colours and
chemicals make me silly" - I can't believe he is actively trying to avoid
those foods because he feels so much better!
·
Your
information has helped me overnight. After 36 years of difficulties and the
last 5 years of stomach problems I am in a state of euphoric bliss. I have read
so much on health over the years but have felt I was fighting a losing battle,
I can’t believe how simple this has been to fix. Thank you for it is an amazing
journey this life which I am sure I will (permanently) no longer feel like
ending. I’m off for failsafe toad in hole now with a big smile on my face.
[473] Two weeks of hell from coloured antibiotics (November
2006)
‘Middle ear infections
suck!’ Words from my own son’s lips - he is suffering today, poor darling. So
of course it was off to the doctor for some antibiotics and of course they are
in an attractive bright yellow capsule. I painstakingly undid all the yellow
caps one by one and repackaged them in clear caps. Took me almost 30 min to do
21 caps but well worth the effort in not having diet issues together with
illness. Had that issue before and it's not fun. It took my son almost two
weeks to get over the "junk" hit the last time he was sick, it was
hell. Just thought it might be a good tip for others, providing their children
can swallow capsules. Finding pre packaged anti B's in clear or white caps is
hard (see Surgi Pack clear gelatin capsules under product updates). – Michelle, by email
[472] ‘Years of difficult days, tears of frustration and
questioning myself as a mother’ (November 2006)
Two years ago I made the
link between certain breads and my then two-year-old’s out-of-control
behaviour. He had been born with reflux, and at 8 months we found he was
allergic to wheat, which later became an intolerance. I have endured countless
judgements from people regarding my "theories" that even preservative
free breads from the supermarket still affected his behaviour considerably.
Making my own bread has had a major impact on improving his behaviour, he is
like a different child, but I have been struggling to find compassionate people
to help me take the next step in assessing his diet further. He is a great
child, but is "more excitable", "over active",
"emotional". Many words have been used to describe him but I've
always been told that I lack parenting skills and I am hiding behind excuses to
explain his behaviour. In your website I have found people that understand me
and him. In other people's stories I read my own, countless times. After years
of difficult days, tears of frustration and questioning myself as a mother, I
feel I've finally found people who are "on my side". I feel validated. – by
email,
[471] Chronic tic disorder from synthetic antioxidants
(November 2006)
My three boys have been
avoiding a number of additives for many years now because of obvious affects on
their behaviour and health. Last year my oldest son – then 8 years old - was diagnosed with Chronic Tic
Disorder which is one step before Tourettes Syndrome. He could not sit still,
having tics in his face, neck, shoulders and arms. After a period of time, I
realised that this behaviour coincided with an increase in eating hot chips. I
stopped my son eating hot chips and the tics went away. I have since tried him
on hot chips and the same thing happens. The culprit is the synthetic
antioxidant 320 (and/or 319) that appears in most chips and oil used for deep
frying. However, manufacturers of frozen chips, and other products such as
packet chips/crisps and dry biscuits do not need to list the additive on the
label if the oil is less than 5% of the product. Not good enough! How can I
help my son be “tic free” if we don’t know when these nasty additives are in
certain foods? – by email
[470] Overcoming resistance (November 2006)
I purchased Sue's book
"Fed Up" 8 years ago and tried to implement it into the family but
met with resistance. The one thing that all in the family agreed was that our
daughter was food colouring intolerant. Now after viewing the DVD the entire
family and grandparents agree that she needs further help. We removed preservatives also from her diet
and have seen some amazing results. Not only has she calmed down, but so have
her brother and sister. Thank you both for all you are trying to do. We do need
to encourage more people about the dreaded inclusions in our diet. I am a
primary school teacher and I see too often the detrimental effects of additives
on children’s behaviour. Our children are screaming out for help, if only the
officials would open their minds and hearts to listen – by email
[469] ‘Old fashioned butcher is safer’ - asthma from amines
in meat (November 2006)
My amine-sensitive
asthmatic daughter has been back on Ventolin daily for the past five weeks. The
only amines she gets are from lamb from our local butcher who I know well. When
I rang him he said that he changed lamb supplier five weeks ago (the same time
my daughter’s asthma commenced) as our local abattoir closed down, and this is
complicated by the drought as the butcher will only buy large carcasses and
these are not always available in the drought.
I have located another
butcher who tells me his lamb is at local saleyards on Wednesday, slaughtered
Thursday and they get delivery late Friday. My daughter is better today after
nearly a week off lamb and hasn’t required Ventolin for the first time in five
weeks. I worry as to how new failsafers would pick up things like their meat
not being entirely fresh as it appears harder and harder to get. The safest
butchers appear to be the 'one man' butcher i.e. small business operator who
runs the old fashioned butcher shop. I have found failsafe eating harder and
harder to achieve and I am experienced with the diet. This makes me very sad as
I know it is the answer, just hard to achieve! – Susan, NSW
[468] Lots of mistakes at first (November 2006)
My daughter Samantha is now
eight and has been failsafe for about two years. To begin with we were making a
number of errors with the diet and it wasn't until I started referring to your
web pages that I was able to better refine the diet and start to work through
some of the possible reasons why the diet didn't always seem to be working.
Samantha was always a
fairly demanding baby but as she was our first we didn't really know any
different. As a toddler she was not the
sort of child that was easy to take out to a café for lunch - sitting still
wasn't something that she could do, frustrating but I could cope with that and
didn't really worry about it.
The first signs that
started us thinking were a little eczema after eating dried fruit and
complaining of her skin burning after urinating, which seemed to be much worse
after eating oranges and tomatoes. At
about the same time that we started taking note of these I met someone whose
child was failsafe and I started reading about food intolerances. It all started to make sense. Pity that we
didn't find your material straight away however we fiddled around eliminating
some of the very high foods from her diet. Some improvement on the skin
irritations but her behaviour although not extreme was becoming noticeable at
times
When Samantha went to
school she was displaying some behaviours that were inappropriate. We could
never really put our finger on the type of behaviour that she was displaying it
was just silly inappropriate behaviour, silly noises, crawling under the desks
etc. As she is a bright child we were perplexed about why she couldn't seem to
understand and learn how to behave at school.
It was at about this time that we discovered your material although it
was not a total success straight away. When Samantha eats food that is not
failsafe it seems she displays symptoms of oppositional defiance. It took time
to realise just how sensitive Samantha is and to sort out some of the common
errors we were making.
We are extremely lucky as
Samantha is absolutely wonderful about sticking to the diet. I grew up on a farm where my mother did all
the cooking so I guess I have learnt pretty good cooking skills. As I now cook
just about everything, it does seem to be a bit of a bonus. – by email,
[467] 635: Ribo rash and increased sensitivity (November
2006)
I suspect my daughter has
an intolerance to flavour enhancer 635 because we have noticed reactions to the
noodle flavour sachet and since then she has had a few reactions (itchy rash)
to other snack-food products containing 635. A recent bout seemed likely to
have been set off by eating sour cream and onion flavoured Pringles. Although
the tiny print on the box does not list 635 or ribonucleotide, it lists the two
other flavour enhancers which 635 is made from (627 and 631). We had let our
guard down as she had not had a reaction for some time and begged on the school
holidays to have the Pringles. Her rash seems to also flare up when she goes in
the swimming pool, so obviously it is more complicated than I thought ... once
a few years ago she got an insect bite which swelled, and then for about a week
she'd get a rash when going in the school pool or our pool at home. It
eventually went away, and she's been fine swimming for years, until now. But
the cross reactivity (is that what you call it?) in the past with the insect
bite, and now with the 635 (if that is indeed what it is) and the pool water
shows how allergy/intolerance ain't that simple. Has anyone else noticed
subsequent problems with rash flaring up when going in a swimming pool? – by
email
[466] Swimming pool chlorine triggers oppositional defiance
(November 2006)
Part one: In the last five weeks our son’s ODD behaviour has been
getting steadily worse. A lot of the time he is fine (with flashes of
naughtiness), and then BANG, major, violent tantrum. I have just gone over the
diary fairly meticulously and noticed that exactly five weeks ago he started
swimming lessons in the local swimming school. The very next day after his
first lesson, I noted that he seemed to be a bit irritated, and was a bit irritated
on a couple of other days that week.
The following Saturday,
after the lesson, I noted that he seemed grumpy, but it was short lived and
reappeared off and on a couple of days later.
By the Tuesday we had a screaming tantrum (unheard of for weeks and weeks).
From there on the irritation was there much more often, and every couple of
days he would be in timeout, mouthing off (ODD raising it's ugly head).
The last three weeks have
been not good for him (or us) and this morning, I could see it coming on before
school and sure enough we had a huge tantrum, where he was threatening to hit
me with the toilet brush (he was timing out in the bathroom), he was being
really nasty calling me names etc and was out to hurt me. When I got him to school (he had calmed down
and was really sorry by then), I had to warn his teacher. I was thinking of taking him out of school
until he calms down again, or at least until we find what is causing this.
Could this all be coming
from chlorine? Usually after the
swimming lesson we would take him to the local pool next day to practice so
there's a double dose. He has always swum in our spa and his cousin's pool with
no ill effects, however is it possible the swimming school and public pools
would be more heavily chlorinated than the normal backyard one?
(Sue: It is common for ODD
kids to react badly to chlorine, and yes, the chlorine level in public pools is
usually much heavier than home pools. Some people get around it by having the child
wear goggles -you can easily absorb toxic chemicals through your eyes - and
shower immediately after leaving the pool. Others prefer to swim in fresh water
swimming holes, the sea, salt water pools, or low chlorine pools.)
Part two: another look at the diary shows that for the last three
weeks we have had a major tantrum on the afternoon following the lesson and
then again the next day after the local pool - the reason for the behaviour was
staring me in the face, and I didn't see it as I was looking for food triggers.
I have looked back further
in the diary, where it showed the last real tantrum was during the last school
holidays. I had noted that he had been at the local pool that morning, and lost
the plot in the afternoon, so I don't think I need any more proof than that! I
wish I had twigged earlier, I kept looking for food reasons. I'm really pleased it wasn't food. – by email, NT
[465] Trip report: food in
We are just back from a 5
week trip around
[464] Food intolerance developed in an adult (November 2006)
Seven years ago at the age
of 55 I had a very nasty gastro-intestinal virus which led to CFS and IBS. Because of the severity of the IBS, I had
many tests - some nasty, with scary implications. Finally, a very helpful dietitian (who works
closely with the RPAH allergy unit) put me onto the elimination diet nearly 2
years ago. We have found that I have
numerous intolerances: lactose, gluten,
salicylates, amines, soy, MSG, sorbitol, sulphites, benzoates, annatto - to
name a few.... – by email
[463] “Tell Sue I’m not a cranky pants anymore” (November
2006)
I am a primary teacher and
thought I had done everything 'right' to prepare my daughter for school. I was
surprised and shocked when the teacher was less than enthusiastic about her
first day. Despite her apparent high intelligence, Amelia has progressed slowly
and her teacher describes her as inattentive and unaware of what is going on in
the classroom.
After three terms of this I
finally relented and took Amelia to see a paediatrician. She was diagnosed with
ADHD (it is also suspected that my husband had ADHD as a child and has leant to
channel his energy into work and sport). I was very reluctant to give Amelia
the prescribed dose of Ritalin, particularly as her behaviour wasn't
unmanageable at home. (After reading your book, perhaps I have been an
'immersion' mother and have fooled myself by thinking 'my child isn't a bad as
that'.)
After much discussion my
husband and I decided to trial Ritalin. I only lasted two days before maternal
guilt, severe anxiety (particularly after looking at www.Ritalindeath.com) and Amelia's racing
heartbeat helped us to make the decision to stop the medication. It was after
my husband talked about our experiences at work, that one of his colleagues
suggested we look at your website.
That was a significant day
in our household. The next day, with the help of my children we emptied out the
cupboards and started failsafe. The changes that your suggestions have made to
my family are impressive. After 11 days on the diet, I received my first
unsolicited positive comment from Amelia's teacher about her work and she also
got two awards in the same week.
My 2 1/2 year old son has
demonstrated even more dramatic improvement. Even though we didn't think there
was a specific need for him to be on the diet, we are doing it as a family.
Behaviours that I put down to being a boy – climbing on everything, running
everywhere, talking loudly - have all stopped and he is now a gentle, quiet
little boy. His day care teacher is amazed by the changes in him.
As for me, the headaches
that I have experienced every few days have stopped and the psoriasis on my
arms is starting to heal. I have read three of your books and it is if I have
woken from a dream. Your description of your daughter in year 1 and husband
could be about my family. When I read p38 "She'll grow out of it" Fed
up with ADHD I was astounded - that is Amelia!!!! She is also very good at
drawing and is a creative, lateral thinker (not that these qualities have been
recognised at school).
Sue, I thank you for the
years of trial and error that you have gone through to make this so much easier
for all the families who are experiencing problems now. Amelia asked me to say
thank you from her in this letter. 'Tell Sue I'm not a cranky pants anymore'
she said. – email, NSW
[462] Failsafe homeschooling (November 2006)
My daughter is nine years
old now and I intend to keep her home schooled for the rest of her school
years. Not only is she behaving better because she eats only failsafe food but
her concentration has improved, she enjoys learning and is learning more and is
a far happier child as a result. I'd strongly recommend home schooling for
parents of kids with ADHD. Before we started home schooling, my daughter
exhibited strongly ODD behaviour patterns and was becoming a very unhappy and
unsettled little girl. It's so good to see her playing happily with the others
and being able to hold a conversation instead of fighting and tormenting.
Socialisation is no problem
for us. We are already a large family, however, we organise outside activities
as well. Our kids do a horsemanship course (their choice) as well as other
activities that bring them into contact with others. Last year we tried our
daughter with ballet for a while but would have been better with all-in
wrestling. This year she's doing trampolining. It's more her style. Largely, I
think that kids in schools get too much of the one kind of socialisation. I
personally think they develop better if they learn to socialise with people
across all age groups.
To get permission to home
school is easy, in NSW you download the application forms from the Board of
Studies website, fill them in and send them, but there are a few things that
need to be in place.
Firstly, you need to
develop a plan of what you are going to teach. To help with this, the website
of the Board of Studies has a site that tells what subjects have to be taught
and what sort of components in each subject you need to address. It's the
normal school curriculum that has to be followed. I found this a bit worrying
at first but it ended up being fairly easy. I am a trained primary school
teacher which did of course make things much easier, but I found the greatest
amount of help from other home schooling parents on the internet. You do not
have to be a teacher to home school but you do need to develop a pretty good
program. I'm pleased to say that the Board of Studies has approved the programs
that I've written for my girls and has asked if I would help other
homeschooling parents in my area, which I do and I'd be happy to help
'failsafers' with theirs if they need it.- Chris (vwilder@optusnet.com.au).
[461] At 8 my daughter was a horrible bully suspended from
school (November 2006)
My story started with an
uncontrollable daughter who at 8 years of age was already getting suspended
from school and was a horrible bully. The school wrote me a referral to a
paediatrician. At the time I thought would only mean having her medicated to
control her which I was dead set against.
I have two older boys that
were very well behaved so I wanted to find the cause of the problem and not
just cover it up with medication. Three days after Christmas 2002 my daughter
went off to such a degree that all I could do was hold on to her while she bit,
kicked and screamed until she was physically exhausted. That was when I knew
there was something seriously wrong so I went to see a child psychologist who
fortunately for me recommended your book Fed Up.
Within a month I went from
thinking my daughter was destined for jail to thinking what a lovely young girl
she is turning into. The results were noticeable that quickly. And from my
daughter’s point of view she felt better within herself. She was no longer on
an emotional roller coaster every day. Because of how she felt on the diet it
made it easy to keep her on it. She was feeling a whole lot more in control of
herself.
Since cleaning out our
cupboards I noticed that my eldest boy no longer suffered migraines and no longer
took so long with gut aches on the toilet. So obviously he also was affected by
these chemicals but in a different manner than my uncontrollable daughter.
Now in our family two of my
nephews and a niece have also gone on the diet with the same excellent results.
One of my nephews went from struggling to get through one reader a week to
reading one a night almost instantly.
My daughter is now twelve
with her full potential being realised and is the biggest advocate of all for
the failsafe diet. We laugh now about what we refer to as her "psychotic
episodes" (which thankfully we haven't seen in a few years now). I used to
think "what did I do so wrong with my daughter. My boys are good boys
where did I go wrong." It was good to learn that it wasn't anything I did
wrong as such. It was the food I was feeding her. – email, NT
[460] Severe egg allergy in a 3 year-old discovered through
the elimination diet (November 2006)
Our 3 year old always had
puffy eyes, we just thought that was the way she looked. We don't eat whole
eggs, I would only use them in cooking such as in a cake or at most a quiche
because I used to throw up after eating them as a child. After we started the
elimination diet my husband made the home made Mayo in your recipe book and
because it uses raw egg, she had a more pronounced response. We missed the
first response, it’s so much easier with hindsight! She mucked up at the dinner table straight
away after trying the salad, wouldn't sit still, so we sent her to her room.
After 5 minutes I went in and her eye was all puffy, I asked her what happened,
did she fall? and she said "yes". But I noticed that the eye didn't
blacken like a bruise over the next day or so. Two days later my husband gave
her the same salad dressing. Again she mucked up at the dinner table, I took
her to her room, but I laid her on the change table and that's when I saw she
had hives coming up around her mouth. I knew that was bad so I grabbed her and
took her straight to the hospital. Over three hours she slowly reacted, the
hives went down and then the eyes started puffing up. We saw the Paediatric
Registrar who told us "these things sometimes happen when they have a
virus - take her home and giver her antihistamine". At that stage one eye
was almost closed and the other eye was well on the way and the doctor had
noticed she had a runny nose. I was yet to learn so much. I took her home, the
runny nose wasn't from a cold it was her nasal airways closing up. I gave her
the antihistamine and we stayed up most of the night to make sure she was
okay.
After that I rang the
hospital and asked for a referral to get her checked for egg allergy and the
paediatrician tried to fob me off. If there is one thing I have learnt with my
five year old, it is that I have to be my child's advocate. I stood my ground
and pushed until the doctor gave in. When we eventually got to see the
allergist some four months later, my suspicion was confirmed. My daughter was
very allergic to both egg white and egg yolk. Not anaphylactic, one step away.
I have since been to a number of talks and learnt about anaphylaxis. One of the
most important things I have since learnt (for us) is that children who have a
decent allergy to an item, will often turn anaphylactic if they go on to
develop asthma. My husband and I are both asthmatic and are now very vigilant. – by email, and see Nell’s egg free cake recipe
in Cooks Corner (Failsafe Newsletter #50).
[459] Dealing with ex-husbands (November 2006) COURAGE AWARD STORY NOVEMBER 2006
Hi. I can already give you
some feedback, as my 3 children and I have been on the elimination diet for 3
days. My eldest child is 14 (depression, asthma, sleeplessness, fatigue,
restless legs, easily irritated, unmotivated etc): this morning she got out of
bed without being nagged, had a shower without being told, all while smiling! I
stopped taking antidepressants 2 weeks ago, and today for the first time since,
I am not feeling my normal symptoms of depression. My youngest, 3, is
hyperactive and today has been a lot calmer. He also normally wakes about
(later) thank you thank
you! Despite all of my best efforts, my
ex-husband is aggressively sabotaging my efforts with my children, constantly
telling them that failsafe foods are 'silly' and if they ask for failsafe foods
he gets cross at them. They spent one night at his house (Day 11 of the
elim.diet) and he gave them everything he could think of that was on the list
of 'Don'ts'. Consequently they came home silly. Neither of the boys (6 and 3)
could get to sleep that night, the littlest one crying and rolling around in
bed sobbing 'I can't stop, I can't stop'. In desperation I gave them both a
half teaspoon of bi carb, thinking 'this isn't going to do anything' (I should
know better!). As it tasted so awful I let them chase it with a Werther's.
Within 10 minutes they were both asleep....-
by email.
[458] 635: Irregular heart beat - “thought I was dying” (September 2006)
I had suffered from a
slight temporary problem now and again which seemed like an extra beat of my
heart but couldn't pin it down to anything so put it down to probable
after-effects of a cold or flu but one morning after enjoying a very large
multi-course Chinese meal while on a works outing dinner the night before, I
felt terrible and quite ill! I could sense an irregular heartbeat that seemed
to be every second or third beat, I was going dizzy and feeling faint now and
again, had a funny tingling feeling going up my neck into my head and scalp and
felt very weak. I honestly thought I was dying. It was so bad I even wrote a
quick note to the wife and kids. Obviously I sought medical treatment, had
various tests and an ECG which all showed up normal...the irregular beats were
intermittent now and I got to feeling a little better, the doctor said everyone
suffers from irregular beats now and again, it’s a benign condition and no
problem!
Anyway I decided it may
have been to do with the amount of alcohol I had drunk at this works dinner and
gradually the beats got back to normal and I put this down to my now 'sensible
drinking' . ....a few weeks later my wife and I arranged to meet up with a
couple of friends and have a Chinese takeaway at their house...you guessed it …
in the night and next morning the same feelings came back and the irregular
beats ... I now dismissed the alcohol connection and thought it could be
something I had eaten, so being a bit computer literate I looked up on a search
engine the phrase 'heart problems after eating chinese food'. I was amazed at
the search results, that so many people suffered from this and that largely
doctors were ignorant of this! One web site even referred to it as Chinese
restaurant sydrome!......so knowing the problem and after extensive research on
the net I know if I can avoid MSG as much as possible I do not get these heart
flutters!...even a packet of hula hoops (potato snacks) can give me slight
heart irregularities.
Two years later: I still
get irregular beats even after a packet of corn snack type crisps. I find that
the irregularities with MSG kick in after about 12 hours and around 24 hours
after eating 635, and that the 635 tends to hang on longer than MSG. With me
the effects of MSG last usually a day sometimes two, and with 635 it’s usually
two days sometimes three. – from the
[457] 635: Heart palpitations from 635 (September 2006)
I have been getting heart
palpitations for about 18 months. Saw a doctor who said it was anxiety attacks.
Rubbish. So I started to take more notice of the foods I was eating. I noticed
that it was instant after certain foods - corn chips, Sanitarium vegie sausages
and some chinese foods (fried rice etc.).
I know its 635 because the
palpitations come within half an hour of eating those foods, and are quite
strong for about 2-3 hours. I'm still trying to figure out if it lasts to a
lesser degree for a few more days, or if I've eaten something else in the
meantime that I don't react well to. – by
email.
[456] Heart palpitations and buzzing sensation (September
2006)
Some time ago I found some
corn chips (Viva brand) that advertised having no MSG. I bought them a few times before connecting
with them a very uncomfortable feeling of restlessness, agitation and panic,
heart palpitations, hot flushes and a "buzzing" sensation; I thought
I was having a panic attack. Since recognising
the link I bought the chips once more to test the idea that this was the cause;
after about 5 chips I started to feel the ‘buzzing’ and threw the rest of the
packet away. - Kathy from
[455] Diet diary of a six year old self-harmer (September
2006)
My 6 ½ year old son, Tim
(not his real name) is currently undergoing investigation of mixed depressive
disorder with anxiety and obsessive ruminations. We have used failsafe in the
past with one of our other children, but had not ever thought of foods being
linked to Tim’s mood problems. When you mention a “gifted and depressed” child
at your recent talk my ears immediately pricked up and took note. Tim has been
identified as highly gifted and everyone has been saying that is the cause of
his problems but I have always felt there was something else underlying that
was contributing. We will be contacting our GP today and hopefully starting the
elimination diet as soon as possible.
2 weeks later…
Just wanted to let you
know, we are all amazed at our son's improvement over the last two weeks. I
have been in contact with the dietitian you recommended, she is lovely and very
supportive. We will be starting the "proper" 3 week elimination diet
on the weekend after the school camp (couldn't manage that one!) But I wanted
to tell you also that even my GP has taken to your book for herself and her
family. She is raving about it!
2 months later …
Since starting the
elimination diet Tim has not self harmed once! He is much calmer and has
noticed this in himself. He no longer seems to be as restless and has been falling
asleep easily at a reasonable time in the evenings. We started with the
salicylate challenge this week and there seemed to be no reaction, until day
5/6 when we started to notice his behaviour was getting worse. We will stop
this challenge tonight and wait to try some other groups. His GP and Clinical
Psychologist are both thrilled with the change as well! …
One week later ….
After I emailed you we
finally had the BIG reaction we were looking for. It happened on Day 7 of the
salicylate challenge - we had already stopped the challenge that morning. Tim
went to bed as normal then began to write swear words all over his bed, his
sheets and his body. ("I was angry with you because I couldn't fall
asleep") This is the behaviour and obsessive ruminations this poor boy was
experiencing on a daily basis before the elimination diet, which we have not
seen until this challenge.
[454] 'Wanted to warn others'
about fish oil capsules (August 2006)
Previous to the diet, on the recommendation of our pediatrician we tried
fish oil capsules for 4 weeks with good results for concentration. We stopped
using the fish oil supplement when we started the diet as we wanted a clear
reading of what it would do. (We were very much non believers at this stage).
The difference on the diet was amazing and we did the diet very successfully
for over three months. We were into our second challenge when I reintroduced
the fish oil thinking nothing of it as it was recommended along with diet by
the pediatrician. We never got back to where we started even after four weeks
of strict diet. We came off it thinking it was possibly a one off and his body
had adjusted to the diet. We have paid heavily for it, forgetting what life was
like before the diet. My son is unhappy and we even began Ritalin trials
feeling that we had exhausted all avenues. Then a friend who is also a
failsafer was told by a doctor at the RPA Allergy Clinic that there is a
problem with fish oil and I just wanted to warn others who may fall into the
same trap. We have begun the diet again today and my son is happy to go back on
it even though he knows it means no McDonald parties and fruit and pizza which
are his favourites. Thank you for giving us another option, and this fabulous
website which makes the daunting task much easier.
[453] One liners (August
2006)
Our 6 year old son’s urticaria and rhinitis have improved dramatically
by avoiding cats and dustmites (for allergies) and additives annatto 160b and flavour
enhancers 621-635. He is now starting to feel better, sleeping better and
behaving better (previously we were told it was ADHD but I have my doubts now).
It is great to see that food intolerance and other chemical
sensitivities are now getting recognition - I have spent a lot of time and
energy explaining to people why I can't eat certain foods or why certain smells
(paint, new carpet, nail polish) cause nausea and sometimes cause an asthmatic
reaction.
Our dietician has already cleared one thing up for me - why I often find
my throat closing up when eating peppermints. I had no idea that it would be a
salicylate issue.
An added benefit of this plainer diet is that their tastebuds have
become accustomed and now they actually eat vegies etc more than they ever used
to because they don't taste so bad compared to everything else (previously
highly salted and flavoured) on their plates.
Since failing her amine challenge three months ago my six year old
daughter has had no more amines, and no more snotty or blocked nose, nasal
sprays, nightmares, sore tummy, teeth grinding, sore legs or nail biting - and
her nails are growing for the first time in her life.
Your DVD opened the eyes of my family and my son's school teachers! It's
really well put together, and my son was excited to be able to take a DVD to
school to show his class all about his food!
- Karena, Tas.
Without your information about diet, my family would have been torn
apart, purely because of the behaviour of our five year old son. He is now a pleasant
person to have around - most of the time. My husband and I are also much calmer
and handle our children in a far nicer way than we did previously.
I look forward to your newsletter - keep up the good work and there are
more and more of us sounding the warning bell.
Food additives are a big issue with consumers and getting bigger all the
time. – excerpt from an email from a failsafer to a food manufacturer – thanks
to Helen.
[452] One liners 2 (August
2006)
I let my 7 year old eat as many dried apricots as he wanted for the
sulphites challenge because he’s definitely not salicylate sensitive - he ate
10 (little) whole apricots yesterday and said it was a bit hard to breathe even
thought he has no known asthma problem.
Last night my son had 3 night terrors close together, where he screams
and his legs cramp and he twitches. I
phoned his day care as he spoke about eating glue. I found out it was a thing the school calls
'gloop' to tailor fine motor skills. It
is made with flour, water and (yesterday) green food colouring.
I am another recent convert - my almost 5 year old was always difficult in
terms of behaviour and the term oppositional defiance describes her well - when
we cut out preservatives after seeing you on TV last year she improved heaps
(no more threats of violence). Since
then I have borrowed one of your books and now we don't touch flavours, colours
or preservatives, WOW what a difference - I will most likely do the elimination
diet in the near future to pinpoint other possible issues like salicylates etc.
Positive symptoms I've noticed since we started our elimination diet
include that we all seem to eat less ... and less frequently. The children seem
to be more or less satisfied with 3 meals and the odd snack. We’ve also gone
from three wet beds a night to none most days so I figure the extra time I
spend in preparing food is time I don't any longer spend in the laundry - a
very fair trade!
Thanks for your time, Sue. I really appreciate the hours you have put
into this to make it so much easier for people like me. I've seen such a huge
improvement in my (I suspect ADHD) son. It's lovely to see him a happy, coping
little boy. You and yours have been a great blessing to our family.
I noticed a dog food advertisement on TV recently stating "no added
flavours or colours" for the health of your dog - if they do it for DOGS
why not people??
[451] Severe eczema and
cradlecap in a fully breastfed baby (August 2006)
My two and a half year old daughter has had severe eczema and cradle cap
since she was a few months old, I never made the connection between the eczema
and food allergy because she wasn’t even on solids when we first noticed the
eczema. She was fully breastfed and I am embarrassed to admit that it didn’t
occur to me that what I ate may be causing the rash! I had her to the doctor
plenty of times over her first two years and came away with all sorts of creams
and lotions, but nothing that worked. (Mind you the doctor never once suggested
food allergy either!)
Anyway six months ago she had an allergic reaction to peanut butter, we
took her to an allergist who performed skin prick tests and not only is she
anaphylactic to peanuts but also allergic to egg and tomato. We eliminated all
nuts and egg and tomato from her diet and whilst she improved and her cradle
cap went, her skin still didn’t clear up. She still scratched a lot (mostly at
night), got allergic shiners under her eyes, and always seemed to have a slight
cough and a clear runny nose.
I recently got hold of Fed Up with the idea of doing the elimination
diet then slowly introducing things back in to see what else may be causing her
eczema. I am pleased to tell you that the eczema is now completely cleared up along
with all the other symptoms simply due to avoiding all preservatives.
Before going fully failsafe we eliminated all those nasties from our
diets and what a difference it has made! I just want to say thank you for what
you do and for making it so much easier for parents like me, who 18 months ago
had no idea what 160b or 282 were and thought I was giving my children healthy
food with their yoghurt and cheese spread etc. I almost look at my daughter’s
anaphylactic allergy to peanuts a blessing in disguise, because if not for that
I never would have investigated food allergies and would still be obliviously
feeding my family all sorts of nasty things.
[450] Mostly failsafe at
boarding school (August 2006)
Our eldest started boarding school this year and it has been both awful
and wonderful. Tina is affected behaviourally by foods. Have you read the
'Animorphs' series of books for kids? Well there is a little creature called a
'yerk' that takes over people’s brains and that is how Tina describes it when
she is not failsafe. It is scary for her.
Boarding school has been hell and she has been miserable, but by term 3
the staff started to take us seriously that the behaviour, social and academic
problems would virtually go away if we could remove problem foods from her
diet. The school counsellor is very supportive and suggested I cook cakes and
biscuits to be kept in the freezer in the kitchen for her to pack her own
morning teas and snacks. They are buying additive free bread for her and
keeping vanilla yoghurt. When they have a roast they freeze slices of meat (not
pork) for her lunches. One day they ran out and boiled eggs up just for her.
She just leaves the main queue and goes to a different door and they help her.
They have also purchased pats of pure butter instead of margarine. Her diet is
not pure failsafe but it's heaps better and now she is so much happier. If
boarding school doesn’t work out this year, she can do Distance Education next
year. – by email, Qld [contact confoodnet@ozemail.com.au
for the name of the boarding school].
[449] 635: Severe rash due to
635, we didn’t realize until we saw it on TV (August 2006)
My seven year old son recently developed a severe rash that covered all
parts of his body after he had tried salt and vinegar chips for the first time.
However we did not realise this until we saw you on Today Tonight and realised
he had never had these chips before. When the rash had almost gone (it was
completely covering his back, stomach and groin) he went to his nannas and had
Arnotts chicken crimpy and crispy bacon biscuits (which we now know contain
635). He came home covered in a severe rash this time on his legs. He was
scratching it so badly that he made his legs bleed.
I was going crazy trying to figure out what was causing it until I saw
your segment. I am very grateful to you for solving this problem for me as the
medication was getting expensive and I was getting nowhere with the doctors. On
the first visit for the initial rash I was told he had hives and given two
types of medication that didn’t work so we went back. Then we were told he had
eczema and we were given a different medication. This one was working until he
had the chicken crimpys and the rash came back in a different area.
[448] 282: Identical twins
react differently to bread preservative 282 (August 2006)
Since food intolerance runs
in families, I would expect identical twins to be affected by the same food
chemicals, so when this mother wrote about the reaction of a twin to the bread
preservative, I asked whether the other twin was affected. You can see her
answer below. This is an excellent illustration of how parents are more likely
to identify behavioural reactions to food chemicals and to miss other types of
reactions. Yet usually if one member of the family is affected, others will be
affected in different ways.
I am the mother of identical twin girls aged three and a half. I have
discovered that one of my twin girls reacts violently to the preservative 282
in bread and since my girls were 18mths old have been purchasing bread through
Baker Delight with great success. Recently for the first time in two years she
was eating preservative bread on holiday and went off her head. Screaming, tantrums, the whole nine yards so
to speak … later … When you asked does my other girl react differently, I
really had to sit down and think about this one. Yes I suppose she does. It
seems to me that her ability to hold her bladder disappears while being
affected by 282, that is, she says she needs to go pee, then her pants are wet.
Off 282 for a few weeks, mentions she needs to pee in the middle of grocery
shopping, I have time to quickly finish off shop then get trolley through the
checkout and then get to toilet. A big difference. At home now she will need to
go, but can keep playing for about 2 – 5 minutes whereas if she is eating 282
and needs to pee, she will pee on floor on the way to bathroom. – by email.
[447] ‘Fear of the dark’
really a food reaction (August 2006)
We started the diet nearly a year ago for my son, a sweet 5 year old who
would become an aggressive, extremely hyperactive and an emotional monster
nearly every day. I saw you on A Current Affair and after taking muesli bars
and sultanas (which I had thought were healthy) out of his diet I noticed most
of his aggressive behaviour disappear.
After that we started the full diet and not only did our son become an
angel, we noticed that our daughter was a very strong amine reactor, becoming
uncontrollably emotional, depressed and ‘full on’, as well as having frequent
nightmares and bedwetting. Unfortunately since we have moved 2 months ago our
son has gone backwards fast, I now think as a result of amines in meat from new
butchers. It is so upsetting to see all the progress disappear, and he has had
HUGE problems at school this term. I have traveled back to our old butchers to
stock up on meat and am started to see some improvement after one week.
The biggest shock for me however, was when I recently discovered I was a
food reactor!! I was a junk food addict and would eat about 5kg of chocolate a
week. I can’t believe now I had so many symptoms, and I never even put them
together as symptoms, let alone found the source of the problem! I was getting
migraines, I constantly had a headache behind my eyes, I felt very faint and
disoriented, had stomach pains that felt like needles - usually after eating
lollies, and I was always bloated - something which really upset me.
The weirdest thing to attribute to food however was my extreme ‘fear of
the dark’ as I called it. I would be terribly scared of the dark, I would think
that my mind thought it could see little people and things out of the corner of
my eye, even though I knew they weren’t there, I would open my eyes every 10
seconds while trying to get to sleep, just to check if there were monsters or
robbers there, and every time I closed my eyes all I could picture in my head
was horrible things that would scare me. I was a bit worried I was starting to
go crazy, then I stopped eating chocolate and didn’t even notice all these
symptoms disappeared.
It wasn’t until I splurged on a whole chocolate cake over two nights
that I discovered what had caused these problems. After eating the cake I was
completely on edge. I couldn’t sit down for ten seconds without turning around
to make sure there were no monsters or robbers behind me. Eventually I had to
sit with my back to the wall so I wouldn’t think there were things behind me.
That was the last time I ate chocolate, and the thought of ever eating it again
scares me! – by email.
[446] The 12 days of
salicylates (August 2006)
This is the diary of a
salicylate food challenge with a five year old boy who suffered from two
different kinds of effects, behaviour and rash. Note that effects can be
delayed, build up slowly and fluctuate. Behavioural reactions are likely to
occur and resolve more quickly than rash. Behavioural symptoms can depend on
what is happening around the child. Food
chemicals can cause irritability resulting in tantrums when children don’t get
their own way and good behaviour when they do.
Day 1 – No reaction
Day 2 - Tantrum, kicking, punching (wanted more peppermints)
Day 3 - Punched a peer’s arm at
kindy
Day 4 - Itchy rash appeared on
inside of elbow
Day 5 - Well behaved
Day 6 - Red blotches and pimples all over lower half of face, tantrum,
screaming and hitting me (didn't want photo taken)
Day 7 - More blotchy and spotty, face sore and raw. (End of challenge foods)
Day 8 - Wet bed
Day 9 - Wet bed, sore tummy, sore red anus, constipated
Day10 -Wet bed, kindy complained of very small attention span, loss of
concentration.
Day11 - Face clearing, no wet bed, generally seems to be getting better
Day12 - wet bed again.
[445] I wanted to hurt my son
because he was driving me nuts (August 2006)
I have started my two year old boy on an additive free diet and I can’t
believe the change in him. I had come to
a point where I wanted to hurt my son because he was driving me nuts. I hadn’t
a clue what from till a friend said try this diet and I’m so thankful to that
friend for showing me the light in raising a great son who I now enjoy. It’s still hard at times as we still need
training in what he can and can’t have but now I know what sends him so silly
and don't blame him for being a pain.
I have always watched what he was eating and thought he was eating all
the right foods. How wrong I was. When I starting looking at what was in food I
was shocked to see that all the foods he loved were really bad for him.
I have taken him off additives, we now do lots of baking and making
foods from scratch and I watch the amount of fruit he has and what sort. He is
great and loves bananas and when we go to the shop instead of asking for junk
he will say mum can I have a banana. All I can say is thanks for making my son
normal. – by email.
[444] 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.
[443] 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.
[442] Thoughts from a 12 year
old failsafer (August 2006)
I have been on the diet for nearly 4 years. It has helped me a lot
because when I was eight I was really naughty such as screaming all the time
and hitting people and hitting my head on the wall. It felt so bad but now I am
on the diet I feel so much better - I don't get headaches or pains in my side
and feel sick in the stomach all the time. When I first found out about the
diet and Learning Connections explained why I was acting and feeling the way I
did I was so happy - happy that it wasn't me that was naughty or bad inside -
it was the food I was eating. I can't eat takeaways now but I don't mind
because my mum cooks nuggets and chips. I used to be sad that I couldn't eat my
favourite fruit but I am used to it now. I haven’t been able to eat lollies
that other people can eat but mum cooks me lollies ... [mum does the smashi
lollies ... see www.smashi.com] – from Qld
[441] Tim's world (shadowings
of Asperger's) (August 2006)
When we had our son Tim assessed for Asperger's, we found that his way
of viewing the world was different from ours. The tests highlighted his
strengths such as maths, eg he scored 17 out of a possible 19 for this area,
comprehension and reading skills. They also highlighted his weaknesses in motor
coordination and his differing ability in various social situations.
Tim's world can be black and white. He doesn't cope well to change and
is like a sponge soaking up written information. He was described as a little
adult trapped inside a child's body. This can vary from day to day, depending
whether Tim is in what I call 'child mode', happy to play with trucks and toys
and his brother, or 'adult mode', needs specific jobs to do, be busy, needs to
know and plan ahead.
Tim's overall score fell just a few points short of the criteria for
diagnosis. When this happens, the person is described as having shadowings or
ghostings of Asperger's, that is, enough of the traits to be a huge concern.
This has helped us to find ideas and strategies to cope with his condition.
An occupational therapist with a special interest in sensory/tactile
areas explained such things as why Tim likes to wear specific clothes, bounces
up and down, spins (though this only happens every now and then) and why his
hearing and sense of smell are so acute. These actions and sometime making
noise help Tim balance himself. We were advised not to stop these actions, but
find ways of directing them into a more socially acceptable form eg bouncing on
a trampoline.
Overall, if we can improve his motor skills, his social skills and
behaviour will improve.
Tim struggled socially at school last year, but this year things seem
much better. We have had friends around to play, though I'm always on hand to
help direct the play and social skills needed for a happy afternoon, and I can
honestly say Tim is not the lonely little boy he was eight months ago.
My advice to other parents who feel there is something different about
their beautiful child, but no one will seem to listen: don't give up. We were
patted on the head by doctors for three and a half years ('he's just highly
strung, he will grow into himself ' - what a great help that was!) and it was
my own sister who suggested Asperger's due to an article she had read.
Having put a name to and found a reason for Tim's behaviour has
empowered us to help our beautiful, bright and unique child to be happy. Tim
seems sensitive to any artificial products, either additives or smells. We have
seen him react to smells such as air fresheners and roadwork smells such as
tar. We were also told to watch if his ears go red as this can often be a
warning that something is not agreeing with him chemically and we have found
this to be true. He can eat salicylates but is limited on amines. - Elaine (pekeely@cybanet.net.au)
[440] "my son had an
horrific reaction to fish oil " (August 2006)
I complained to the Adverse Medications Events hotline (thru your
website) about the fact that the label on a particular brand of fish oil
supplements says free of salicylates and amines and they were most sympathetic
and helpful. They asked the Queensland Nutrition Council to investigate and
discovered that not only does the lemon and lime flavouring contain salicylates
and amines, but so does the tuna, and how high depends on whether the tuna is
fresh or canned. As I told you, my son had an horrific adverse reaction to it,
and was waking up through the night on it - in fact, he asked me if he could
stop taking it. I tried lowering the dose to a teaspoon in the morning only
(two teaspoons recommended morning and night), and it made no difference, so I
stopped it. The AME spokesperson told me she had written to the company
involved asking them to justify their claim. She also told me the product has
been withdrawn in the
[439] "Migraines due to
amines including fish oil" (August 2006)
My daughter has had migraines since she was about three years old. We
had no idea what they were for several years. She usually gets a fever with her
migraines and because of the fever the doctor would always put it down to 'a
virus', prescribing painkillers. I would often give her panadol for four days
straight just to keep the headaches at bay. She goes limp and listless, her
eyes droop, she lies there and sleeps for hours until the panadol wears off and
then the pain and fever return. Most times she will scream and cry at me
grabbing her forehead, pleading with me to take the pain away. “Mummmy Mummy my
heads hurts, please stop it.”
A year after she started getting the migraines, we were referred to a
paediatrician who could find no medical reason for them. He thought it may have
been an attention grabber or perhaps the start of a cold. He was at a loss too.
He asked me to diarise her migraines. The migraines continued on and off with
no regular pattern that I could work out. Once a week, then maybe another in 6
weeks times, then two months. It varied greatly. Two years later we started
taking a fish oil supplement [not the same brand as the one mentioned in the
two stories above]. The migraines became more frequent and she started throwing
up with them. She would go to sleep with a migraine, wake at
On the second day of the amine challenge, my daughter got a migraine,
fever, droopy eyes and became listless. School rang and asked me to collect
her, again. She stayed unwell for several days with the headache. Since the end
of the amine challenge three months ago we haven’t had one migraine! So, no
more amines for my daughter. It turns out that the fish oil supplement has
amines in it which is why her migraines would have become so frequent and
regular. I was giving her six capsules per day for three months as per
instructions. - mother of a seven year old.
[438] I have well and truly
got their attention now (August 2006) COURAGE AWARD
STORY AUGUST 2006
Maybe as parents we should take our children into these places, give
them the harmful products and walk out and say see what happens and good
luck. Then they might start listening. I
did this to my son's school recently after they thought I was a mother
overreacting to my son taking part in morning tea that was brought in by other
students in the class. The Principal
actually commented that "you need to let your children have a bit of fun
in their lives". So I decided to
let him join in the fun!
They got the shock of their lives when they saw the reaction they got in
my son. His teacher made a comment to me
that she was shocked at the change it caused in him. He was totally uncontrollable. I said "yes, I am not a mean mum just a
caring one". She then said that she
had discussed it with the Principal and they know that I am trying with
him. It's amazing how they change their
mind when you show them. Unfortunately he had to get into trouble to get their
attention. But I think I have well and
truly got their attention now - Tania
from WA
[437] Amines and eczema (August 2006)
I am now 46, and have lived
for most of those years with dreadful eczema all over my body, some times much worse
than others. I went to many skin specialists, all who told me that diet was not
linked, not to scratch, bathe in the sea when possible, not to use harsh soaps
and apply cortisone creams. My eczema never got any better. I started the
elimination diet a few years ago with my daughter, who suffers migraines, and
not only did her headaches decrease, but my eczema also faded to almost
nothing! Amines were the trigger for her
migraines, and with keeping off amine rich foods in our house, I have not had
any eczema problems since, and I no longer need to apply creams to any parts of
my body. What a relief!
[436] Amines: depression and hungover (August 2006)
This father who was doing
the elimination diet to support his son chose to do the amine challenge first
because he thought he wouldn’t react. ‘How wrong can you get!’ he wrote in his
account of the challenge:
'I had a violent reaction
within a few hours and have never felt so awful in all my life. Here are some
of the symptoms: depression, suicidal tendencies not just thoughts, melancholy,
looking for an argument, feeling the whole world was against me, lethargy,
shakes, pressure on the skull and tingles in the extremities, feeling of
hangover, inability to focus on thoughts, ringing in the ears, inability to
sleep. The hungover feeling lasted until the next day. Not the best 24 hours
but at least I know there is a cause for symptoms that I have experienced in
the past.’
[435] Amines are the really big problem (August 2006)
My 14 year old son goes off
his face with food colouring but it only lasts a couple of hours so we can put
up with that. Salicylates aren’t too bad either, at home, although it must be
terrible at school. He gets bouncy and silly. In class he wouldn’t be able to
sit still or listen to the teacher. He would be too busy poking and prodding
the kid next to him. Amines are the really big problem though. When he eats
amines it’s World War III at our place. We need an air-raid siren. He’ll get up
in a foul mood, kick the wall, swear, throw things, yell. Absolutely revolting.
After we started the elimination diet we had five months of a perfect child but
when we started our challenges that was the end of our wonderful existence.
With his amine challenge he took nearly four weeks to calm down again.
[434] My daughter’s epilepsy (August 2006)
This is about a mother's
struggle with her daughter's epilepsy and what it took to give her daughter's
life back to her. (from Andrea Collins' epilepsy list)
"My daughter is 7
years old. She has development delay, autism and was diagnosed with Lennox Gastaut
Syndrome at the age of 2. She began the Ketogenic diet Jan 2000, and came off
of it July, 2003. She was on the diet for 3 years and 3 months. She became
seizure free 14 months after the diet was started. (It took 9 months to wean
her off all the drugs and another 5months to take out all the foods that were
causing her problems.) I found the diet very difficult as I didn't have the
medical backup to see me through it. Found a Paed 3 months before she became
seizure free who believed in what I was doing. A mum off this list was my only
support. I would not have done it without her. I was so tired and felt so sorry
for my daughter being on such a restricted diet and yet still having seizures
but I had to see if the diet actually worked on its own. Her last seizures were
all occurring during her sleep and I thought "at least she's not hurting
herself" but I was forever running into her bedroom to help her get
through her seizures. I was so frightened that I had done the wrong thing,
weaning her off of all her drugs and the seizures were not getting any better.
I was lucky to find a Paed that believed in what I was doing. She actually
advised me not to reintroduce the drugs. The best thing I ever did was getting
rid of the drugs altogether because I was then able to fine tune. What I did
find however, that whatever she ate really affected her. Two days before she
became seizure free I removed carrots from her diet because that was the only
food I was giving her in the last meal that wasn't "failsafe" and a
miracle happened. The following night she had a cluster of 20 very slight
myoclonics and that cluster was the last seizure she ever had (April, 2001) and
has been off the Keto Diet since July 2003, however she remains on the Failsafe
Diet and Dairy free. I have since tried her on carrots and found her to be
having staring sessions (were they absence seizures??) and keep her off of
foods with beta-carotene. It's paid off in the long run. She is talking, doing
well at school, playing with other children, enjoys her food (although I still
have her on a mild diet watching what she eats) and is generally happy 100% of
the time. I don't know what I would have done without the Ketogenic Diet and
Failsafe foods."
[433] Preservatives including sulphites (July 2006)
"I have a 3 year old
son who was diagnosed with eczema around the 12 month mark. He started having rashes
when he was put on solids but nothing too serious. Last year we took him to a
skin specialist who told us his condition was very mild and prescribed
cortisone (Elocon). When we asked for allergy testing, she told me it was not
caused by foods. Fourteen months and a few tubes of Elocon later, his condition
was very bad. He would scratch himself in his sleep to the point of bloodstains
on the sheets and had problems staying asleep. His skin was permanently scarred
and bloody because of scratching the same spots so they never had a chance to
heal. I was in despair and did not know what to do especially as I took him to
my GP and he again refused to do anything other than prescribe Elocon."
Eventually this mother
decided to try diet for herself and contacted the Food Intolerance Network
through our website. Through cutting down on additives she found that
preservatives were the main culprit and wrote:
"Since we took him off
additives and preserved foods (eg lollies, juice, sausages), his skin has
improved very well. He stopped scratching and started to sleep through the
night. Then on Saturday he had half a sausage and bam, itching and redness
started within 30 minutes. Luckily it only lasted a few hours and again
yesterday we went to a party and against my better judgment I let him have
orange juice and soft drink and same thing happened.
“Because I now know exactly
what he eats, it is easy to pinpoint the cause.
I am disappointed with our medical practitioners, the so called
specialists, especially the one who saw my son last year and put him on
steroids. I have become an avid label reader and when I explained to my 3 year
old why he cannot have all the stuff he normally loves, he surprised me with
how well he is coping."
[432] Eczema and sulphites again (July 2006)
My daughter developed
eczema when she was being introduced to solid foods at about 6 months but I
didn't take her to the doctor for another year and then we managed it with
eczema cream until we went travelling when she was two. The eczema got much
worse while we were travelling and eventually we tried the elimination diet. We
went gluten free right from the start and at first she got much worse. It took
us months to work out that she was sensitive to many food chemicals but
especially sulphites, which were in gluten free flours and also in the bore
water on our property. I was also using a herbal cream that was making her
eczema worse. She is very sensitive and reacts to Sorbolene, and smells like
Estapol.
[431] My daughter gets eczema and asthma from salicylates
(July 2006)
When my daughter was two I
noticed that her eczema seemed to flare up after I had given her spaghetti one
day or two before. I asked my dietitian
if it could be tomatoes and she said "yes - it can be
salicyates". So I stopped giving
her spaghetti and tomatoes thinking this would solve the problem however she
still had eczema so I just treated it.
When she turned three years old she started getting asthma, about every
month and when she had a virus or a cold. My daughter always only drank water
or milk but at her Kindy Christmas Party we had to give her some cordial to
drink because there wasn't anything else and that night she had asthma. The
same thing happened a month later after she had a raspberry fruit drink. My
doctor just told me how to treat the asthma so I went to my dietitian. She
prescribed vitamin supplements and took my daughter off dairy which reduced the
frequency and severity of the asthma but made the eczema worse. It took a couple of months for me to realize
that I was mixing the vitamin powder in orange juice, then the dietitian gave
me a list of all the foods that contained salicylates so I could avoid them. A
few weeks after we started avoiding salicylates, my daughter's skin started
clearing up. So you can see the pattern with the tomatoes, fruit juice and
orange cordial with real fruit juice – reader by email.
[430] 635: “hive/welt rash and …swelling in the throat and breathing difficulties” (September 2002)
"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." (
[429] 635: “itchy rash … kept me up all night” (September 2002)
"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." (
[428] 635: “corn chips” (September 2002)
"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." (
[427] 635: "crabbiness, itchy eyes and black circles under her eyes” (September 2002)
A mother from
[426] 635: “chicken flavouring”
(September 2002)
"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)
[425] 635: “face very
swollen and lumpy” (September 2002)
"I woke up at
[424] 635: One-liners
(September 2002)
- 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
- 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
[423] 635:
“life-threatening anaphylactic-type reaction” (September 2002)
"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!
[422] 635: “just a few CC's” (September
2002)
"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.- by email.
"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."
[421] 635: "I'm 56
and another victim of 635" (September 2002)
"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." – by email.
[420] 635: "A
maddening itch" (September 2002)
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