Our oldest son attends a Montessori preschool and his teacher had been concerned from day one over a few of his little habits. In November 1999 he was assessed because he has always been an over emotional child and his concentration was not developing like his teacher expected. He was also rolling his eyes when doing work at school and he was starting to fall behind. At no time did anyone (teacher or assessor) think ADD / ADDH was a problem. Needless to say our feet hit the ground running since that assessment.
First stop was diet. The lady who did the assessment recommended getting both our children off additives immediately and reducing dairy and wheat. We were lucky to get into Sydney's Royal Prince Alfred Allergy Clinic a few weeks after the assessment. By then we had totally removed additives, dairy and wheat from the children's diet. I'm sure anyone that has gone through this will remember the shock of those early days. Did we really eat that unhealthy? What was left that we could eat?
Within three days after removing additives, wheat and dairy from the children's diet our children transformed into angels. Our son and daughter had always fought. After three days there was no fighting. They were settled and calm within themselves. They slept longer. They ate more. The teachers at school wanted to know who possessed our son. All of a sudden he was focused, able to concentrate and more sociable. Parent's of his friends noticed the change. His 5 year old friends noticed a change. Of course no one believed us it was due to a major diet change. After
all, bread is good for you! The children have done the elimination diet and we have been steadily challenging food chemicals. Judging by the reaction from our dietician our children are not fitting the usual reactions. The children have had no physical reactions. All reactions have been behaviour related. Wheat made both children aggressive, giddy and unfocused. Cow's milk (both with lactose and without lactose) made both children emotional basket cases however they had no reaction to tasty cheese. We think they reacted to cow's milk yogurt but we are going to retest. I know they reacted to ice cream also. Our dietician explained that an emotional reaction to cow's milk has been observed so we weren't imagining things. Currently the children are being tested on additives from unlabeled capsules. Our son’s first test was food colouring. Even without a label the additive was obvious when I broke open the capsule. Within minutes he reacted with hyperactive energy. I believe his teacher had one of the worst days in her teaching career that day! She told me never ever ever give him that again. He was unfocused, talking non-stop and could not concentrate. It took three days to get out of his system.
A few things have amazed me through our food testing experience. Once the chemicals are out of the diet the reactions when the chemical was re-introduced has been over the top. How could the children have ever eaten those chemicals before and we did not see the reactions? Once you start from a clean slate and looking at one chemical at a time the results are amazing. I'm also amazed how many foods contain unsafe chemicals. Has anyone ever tried to buy corn chips with
no anti-oxidants? Not many edible choices out there. Lucky we're not corn chip people! I am also astonished how long it takes for the children to regain their angelic natures after a food challenge. RPA gives approximately three days but we found it takes at least one week for the bad stuff to get out of the children's systems.
I am convinced that our children are not the only children with food intolerances. I think all children have food intolerances but parents are living in denial. I speak to friends and they all agree that their child should cut back on this or that food. No one has the commitment to do this unless they have reached crisis point. We knew our son was a high needs / high returns child from day one but we never thought that food intolerances were part of the equation. We now see that unless your child has a good clean diet then they have no chance to reach their potential.
Our son’s overall problem is neurological. His birth was very bad. It appears that structural damage prevented parts of his brain integrating hence the result is he has problems getting information out. He has seen a cranial chiropractor, a behavioural optometrist and a kinesiologist plus weekly visits to a neurodevelopment therapist. The bottom line is until his diet intolerances have been confirmed and his metabolism rebuilt by the kinesiologist the neurological side will not be totally fixed.
Our daughter has been dragged along on his journey. At one stage blood tests indicated she had coeliac disease. A visit to the specialist concluded she has a strong disposition towards coeliac disease but she is not a coeliac. I was amazed that a specialist dealing with gut problems was skeptical of results from the food challenges. That specialist was recommended because he was one of the open minded ones!
Meanwhile the children are permanently off gluten, dairy (except a little cheese) and additives. We have gone back to the old fashion make it at home cooking and baking. I don't even bother with the instant gluten-free additive-free box foods. Hey, I can make a pizza base that tastes just as good from scratch. We continue with his other therapies. He's making great progress. Still up and down because the diet is still being sorted out. Our daughter is two years younger. Luckily she is young and she has not been under the scrutiny academic wise that our son has. She has had food reactions but shows no neurological problems. The thing that frightens me most is that we live in a world of children (and adults) who are zombies due to food chemicals. All those beautiful little minds being drugged by legal chemicals in our foods. Parents who have gone through food challenges and have children with food intolerances need to educate their friends. A parent just needs to change their diet for a short time to see the proof that their child is affected by foods. - Mother, Sydney
I have been meaning to write to you for years to thank you for your books. We were on the right track with our then four year old son, Jack (now coming up to 10) when I read "Different Kids". I already suspected ADHD and knew very well that he reacted to food as do I. Jack had his first food reaction at 20 weeks gestation! I ate some of those awful red sugar-coated peanut things and he just went berserk, looping the loop and throwing himself all over the place for about an hour or so. So we were prepared.
I breastfed him for nearly three years - breastfeeding was only time I got to lie down and rest. He was a "windy" but fairly normal baby early on and I did avoid any foods in my diet that seemed to cause problems. He never liked to be left alone and would panic if put down while awake. From three months constant movement and novelty was required to keep him happy. When he was happy he was radiant and when he was not he was grizzly and constantly squirming with this giving way to frantic screaming if the boredom lasted for more than a few minutes. Out shopping, strangers loved him as he responded with such joy to any attention and he was a very attractive baby. I had to carry him on my back in a sling, the stroller was too boring, too far away from me and not social enough. I accepted all this as I had been told I was a very, very difficult baby - colic - and my expectations were therefore "realistic".
At four months I began to introduce solids - rice cereal with breast milk to mix. The novelty seemed to appeal to Jack! Then I began to mix a small amount of orange juice in with the cereal to boost iron absorption. From there I introduced apple, ripe banana, pureed vegies (broccoli, pumpkin, etc.). He wasn't so keen on this but I heard about adding cheese to make the vegies more appealing, so I did this, often using parmesan cheese as well as milder cheeses. Jack loved bolognaise sauce mixed in too. Another favourite was avocado. He loved apricot and yogurt. He had a small amount of mashed prune to counteract a tendency to constipation. I was so pleased that he ate well and proud he had such a good appetite and such an ideal diet. When others asked how he slept (pretty awfully) I could at least say, "But he eats really well".
Meanwhile our little boy was getting more and more grumpy and demanding and more and more miserable when he wasn't amused. I looked frantically for the "ideal toy" the thing that would hold his attention. Each new item was met with delight and then discarded within thirty seconds and the grizzling began again.
Jack woke at least twice a night. He was into everything and seemed to always want more - more - more. He wasn't babbling - ba ba ba & da da da at 10 months. (In retrospect, the first sign of his problems with auditory processing that later resulted in speech delay and difficulty in learning to read.) He never sat and played. He never sat! He went straight from crawling to being dissatisfied because he couldn't yet walk.
From the 4 months we put his "difficult" and unhappy behaviour down to "teething". The first tooth didn't appear until eleven months.
When Jack was four months old I ate a small amount of dark chocolate in an ice-cream and about one hour later breastfed Jack. Within half an hour he was screaming inconsolably and instead of being tense as crying babies are he just lay back in my arms in an almost relaxed way as he screamed (low muscle tone no doubt). I identified the chocolate as the most likely culprit - I'm now sure I was right. After Jack went to sleep I sat up and expressed my other breast out into a
nappy!
He was still a delightful, smiling, social child as long as he had the undivided attention of someone and a constant stream of novelty.
I've gone into this first year in detail because it really shows most clearly what was going on even if it was not obvious at the time.
My second child, a daughter called Ellen, was born when Jack was nearly 3 and a half. Jack was delighted and adored his little sister. The pregnancy was complicated by my blood pressure going high from 23 weeks. My mother came to look after us all as I was meant to be resting as well as taking anti-hypertensive medication. My mother just couldn't take Jack's behaviour.
I had been avoiding wheat in Jack's diet as I believed I had a problem with it. (My problem was actually with calcium propionate (282), of course, but cutting out all wheat did solve my problems of fatigue and fuzziness and so for years I thought I needed to avoid wheat). For convenience we changed to normal white bread from the supermarket. Jack loved it after the drier rye bread I had used formerly. I had not a clue about the preservative in the bread. Jack's behaviour went from bad to atrocious.
Jack's behaviour was at its all-time worst between the ages of 3 and 4. It was during this time he was eating the preserved bread. He put his hand through a windowpane during a tantrum. He woke with nightmares and screamed madly about and it was impossible to get through to him.
He went to bed late, reappearing often saying he was hungry and wanting (surprise, surprise) another slice of bread. He would wake at 4.30 in the morning wanting to be entertained. The only toy he persistently liked was his ride-on car. His behaviour and manner were almost autistic but for his insatiable sociability. His speech was very delayed and I don't think he really understood a lot of what was said to him. He was however very imaginative and inventive and liked to play pretend games, but always with someone. He had no liking for being read to but preferred to have me act out stories with both of us taking roles.
Needless to say I was exhausted and miserable. We lived half an hour out of town. My husband, Nick, was at that time managing farms. It was a very similar situation to yours, I think.
Jack was going to preschool in town a few days per week. Although they did not complain about Jack's behaviour (he has never been physically aggressive towards other people, even at his very worst and he's never said "I hate you" either - he is a very gentle character) When pressed they would say he was a bit weird, hiding in the playhouse and refusing to come out when the others were sitting on the mat listening to stories and taking off outside at inside time, etc, but he was only three so a lot of immaturity was allowed for.
My mother and my husband, Nick and I discussed Jack and his behaviour and decided that his things had got much worse around the time of the change in bread type. I took Jack of all wheat. The change was astonishing. He could have his socks put on without going berserk. You could talk to him and he would act on what was said. He didn't scream through everyday tasks such as bathing, dressing etc. When he went to preschool that week I dropped him off and didn't say anything about the changes. When I picked him up the teacher approached me and said "What have you done - he's a different child - he's playing with the others and listening to us."
Just before Jack went off wheat he had been assessed by a speech therapist at the preschool. She diagnosed, as best she could -we couldn't really keep Jack in the room much less anything like on-task - a severe expressive language delay and a moderate receptive language delay. Six weeks, later when off the wheat products, was reassessed by the same speech pathologist, using the part of the test that Jack had not done due to being non-cooperative. This time he seemed to have no significant receptive language delay and was only mildly delayed in his expressive language. She said she had never seen a child change so dramatically within such a short period of time.
Of course avoiding wheat meant avoiding a lot of foods, such as sausages. So Jack's diet also became generally blander and so did Jack. He was still difficult but at least he was "on the planet" now. He was only four but used to ask me "Why am I so happy, Mum?"
After a couple of months I screwed up my courage to do a challenge for wheat. I cooked some pikelets so I knew just what had gone into them. No reaction other than a very happy child - yummy pikelets!
I challenged with bread, planning to do two-week-on -- two-week-off challenges to see if any difference was apparent. That challenge lasted for two slices of bread fed to Jack at 4.30 on a Friday afternoon (timed so as to coincide with the weekend when Nick would be about)!! Within forty-five minutes, Jack was off his brain. Screaming, upset by everything - he finally went to bed and woke at 4.30 and was off again. This reaction lasted as a major thing for three days and Jack was unsettled for at least a week afterwards. Nick strapped Jack into his car seat and spent a lot of time driving around checking the property that weekend! We have never rechallenged this one as Jack himself has no desire to repeat that particular experience and neither have we.!!
The clinic sister I went to for Ellen was very supportive of my efforts to unravel the cause of Jack's problems with diet. When I had identified bread as being a huge problem she pointed out that bread did contain a preservative. She did not know anything particular about this preservative and its effects and she only mentioned it because preservatives were believed to be a cause of behaviour problems in children. Unfortunately I didn't take this too seriously at that time - I still believed that they wouldn't put anything this harmful in our "daily bread" and therefore the preservative couldn't be that harmful.
I spent the next year or so thinking our problem was yeast. I also noticed that a lot of Italian food caused major problems and made Jack pale and blobby looking as well as affecting his behaviour.
It was around this time I found and read "Different Kids" and it all began to make sense. What I had been doing as a mixture of the observation that the blander the diet the blander the children, my little clinical-trials-with-one-(or two, three or four) participant(s) and intuition could now be done with structure. I think you saved us another three to four years of misery, money wasting and mucking about.
These days my husband says he feels better and doesn't get headaches any more. I've found I react to many things and I compete with Jack for the most sensitive-in-the-family status. Ellen reacts to salicylates by becoming easily enraged and blaming everyone for everything. She is, by the way, the most un-ADD person I've every met - highly organised, very logical, and a real old head on young shoulders -very knowing and mature and reasonable. She is also extremely bright and academically gifted especially with maths.
Jack becomes hyper and idiotic and unable to learn when he has more than moderate salicylates in his diet. His salicylate reaction is a rapid-onset-rapid- resolution-type reaction. Amines used to make him irritable and as close to aggressive as he got but these days the reaction takes the form of a migraine. Jack still has academic problems related to his ADD and particularly to his auditory processing disorder. He is on Ritalin for school. I liken it to wearing glasses and tell him his sister wears glasses at school to help her eyes focus and he needs Ritalin to help his mind focus. He takes a very small dose (1 tab then 1/2 tab three hours later) and he finds it very effective. He does not take it at weekends usually although he would have a dose if we were going to do something that required good behaviour despite being bored or to help with a task requiring concentration and organisation such as making a model etc. He also asks for a dose if he his anxious to be on his best behaviour.
We also need to apply behaviour modification techniques on a daily basis - I did a Triple P course and this has been immensely helpful in managing Jack.
To put it simply, our approach to Jack's behaviour and other problems three-tiered one: First comes diet and general good health including adequate sleep and food - this is essential as if his diet, in particular, is off then nothing else is really effective.
Second comes the behaviour modification. I believe a lot of poor behaviour in children is caused by not being able to understand their environment. It seems to me that all effective behaviour modification systems provide not only rewards and punishments but more importantly they organise and simplify the social environment for all players. This consistency enables children who have trouble reading those around them to understand what is happening and they are therefore able to comply.
And thirdly, medication is the icing on the cake. It does cause Jack persistent appetite suppression and sleep problems. (The appetite suppression can be a good thing for parties though as he will only pick at plain chips and have a bit of lemonade if on medication!) Once again thank you so much for your books - and for the great website, and please sign us up for your newsletters, discussion group and kids discussion group! - Alison, Queensland
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! - Alison, Qld
[See our report of 635-associated skin rashes in Failsafe #10. Anaphylactic shock has previously been considered an IgE mediated allergic response. RPAH researchers now suggest that anaphylactoid reactions may be associated with various food chemicals including additives, see Clarke and others, The dietary management of food allergy and food intolerance in children and adults. Aust J Nutr Diet 1996; 53(3):89-94. Note also that, unlike the National Registration Authority's Adverse Experience Reporting Program for agricultural and veterinary chemicals, there is no mechanism for reporting adverse reactions to food additives. There should be! Our attempts to do this have all been met with reassurances that additives are safe, yet they are not tested for their effects on children.]
I bought your book recently at a dietician's recommendation after being diagnosed to have sensitivity to salicylates and amines. It is really easy to read and contains a wealth of information. The dietician was especially enthused about your recipes - she felt they were easy recipes and it was therefore easier for people to comply with the limitations on food types. I agree totally. In my case, the initial symptoms included tiredness and lack of concentration, so it took a while for me to even begin to seriously consider looking at recipes - I started with a fairly standard and uninteresting diet that did not require any mental effort (rolled oats, golden syrup on toast, boiled egg sandwiches, stir fried vegetables). Now, after a couple of months, I am much more alert and awake, and interested in things.
In fact, the reaction checklist was a revelation - it revealed that things I regarded as normal were actually symptoms. And having filled out the checklist initially and again after a week on the diet, I was amazed at the difference ...
It seems from your book and website that children are the main sufferers from food intolerance. However, I know a couple of adults who have intolerance problems ... It occurs to me also that this might provide another avenue, possibly more fruitful, to continue the campaign against food additives, or at least having them tested more fully. When adults are ill, there are direct economic costs in terms of lost work time, reduced productivity, possible workers compensation claims or even superannuation costs due to early retirement due to ill health. Certainly in my case, my productivity has been down for some years due to inability to concentrate.
By contrast, children's behaviour can easily be dismissed with responses blaming parents, children or everything else but food additives. Pursuing the economic costs of irritable bowel syndrome alone may well reveal the true cost of having additives in foods. Further, once it becomes an economic issue, it is likely that further research will be done on the subject, revealing even more information. - David, Newcastle
You said you were interested to hear how our challenges went. Well, what can I say - they weren't fun times.
We challenged nitrates and amines and yes, my daughter does become irritable a day or two after eating foods containing these chemicals. Her mood only lasts around 24 - 48 hours and so this isn't too bad. I can tolerate this but as for the 282 bread challenge, I never want to see another slice of bread or crumpet or anything else that contains this preservative.
I felt cruel doing this challenge but as you say, we do need to know if she reacts to this preservative. I could see her mood slowly changing by the fifth day on the challenge and from then on it only got worse.
My food diary reads:
day 5 - cries easily
day 6 - cries easily, slightly cranky
day 7 - cries easily, sour faced (stopped challenge)
day 8 - angry, irritable, fighting with us and sibling
day 9 - foul mood
day 10 - terrible mood, irritable, cranky, easily angered
day 11 - mood still bad but improving
day 12 - bad mood, irritable, angry, stirring siblings
day 13 - irritability improving; still fires up but not as frequently
day 14 - mood much more pleasant
day 15 - pleasant child
The one good thing to come from this challenge was that it opened my husband's eyes up and he has now started reading labels and watches carefully what our children eat. - mother of two
I had to write and tell you how we are getting on. My son will receive a prize at the junior school prizegiving next week...we are just so pleased for him. He deserves it so much! It is hard to believe that this is the boy they wanted to keep back a year ... needed writing tuition and now has beautiful handwriting, wrote short boring stories and now writes amazing near novels. His reading has gone up three years in one year, his spelling four years in one year. He really has worked hard in all areas and has tried to keep within the diet.
I must say we are very proud and so pleased he will receive this trophy. Thanks for your many times of support, we know a lot of these results are because of your books and the diet and the on-going support. It is so very much appreciated. - member of the failsafe email discussion group
I just want to tell you how your book has changed our life in just five days! I had two of my children tested for educational problems as they were both very smart but were doing badly at school - just couldn't get it together and were repeating for their lack of progress. The child psychologist offered me a range of books to read whilst I was waiting for the hours to pass and I picked your book up - as I felt I had four 'different kids' without even knowing that it was aimed at ADD type of behaviour. I read the book in one sitting and then reread parts of it, reluctantly I returned it to the psychologist, who mentioned that she had suspicions that at least one of the children was intolerant to certain food chemicals (amongst other problems she has).
I then visited Dymocks and bought both your books - read 'Fed Up' in less than a day and felt ready to tackle the problem - we went shopping and explored what the chemicals were armed with your books and the code breaker book - not much to choose from but it has increased my awareness of how even though we try to maintain a healthy diet the corporations and food manufacturers are slowly poisoning us!
My children have been preservative and colouring free for about five days - a total change in their behavior and willingness to be obedient and cooperative and just really pleasant to be with, our little girl is a joy to be around with no sore belly and no temper tantrums (I have also tried to take her off as many salicylates as possible) - her sense of humour is really coming through. On Christmas day someone (well meaning of course) gave the kids a small bag of sweets and their behaviour change was reversed ... This behaviour is not just observed through me wanting change - we are currently staying with my parents and they too have noticed a difference in the kids and although scoffed at first, are also converts. - Dianne, Hong Kong
I am 23 years old and I have had Chronic Fatigue Syndrome for two years now. I thought I was never going to get better. It seemed the healthier I thought I ate (lots of fruits and veges!) the sicker I became and the more weight I lost, along with many other symptoms including headaches, muscle soreness and weakness, bowel disorders. You name it I experienced it! At my lowest weight I was 32kg which was a total loss of 30kg. After being an elite athlete I can assure you this was very frustrating.
It was only when my fantastic doctor happened to come across another patient who had the same problems as me that he was pointed in the direction of the allergy clinic at Royal Prince Alfred Hospital.
Through a dietitian there I was put on the FAILSAFE diet and dramatically improved within two days. Even though this meant that I only ate fish, rice and chicken for four months I didn't mind because I no longer had stomach pains. I am now able to tolerate most foods on the low list although not dairy or gluten. That may not sound like much but to me I can eat a huge variety compared to what I started out with.
I have managed to put on 12 kg and am almost ready to return to a bit of part time work! I can honestly say that this diet saved my life. - Emma, Sydney
Thank you for writing Fed Up.
A friend of mine showed me your book after I was speaking to her about my daughter and the problems I was having with her.
My daughter was a very short tempered, angry and defiant little 4½ year old. It got to a stage where I was so upset and couldn't understand how my sweet little girl could so easily turn into this nasty little girl.
To cut a long story short, I thought anything was worth a go and so I read your book. We have now been eliminating all the additives and preservatives that you suggest for nearly two weeks and the change in my daughter is just about unbelievable.
We may continue further into the diet as she has a terribly stuffy nose every morning.
Our whole family is now happier and healthier thanks to you.
Thank you so much for being so concerned for other people's health. You have given us our little angel back. - mother, Australia
I have just read your book 'Fed Up'. I suspect my whole family has food intolerances and would like to follow the elimination diet ... I have already had some positive results with my son by excluding preservatives and chemicals from his diet. He is much calmer and happier. Thank you so much for your book. - mother of 2, WA
Thank you so much for your book 'Fed Up'. The title jumped off the bookstore shelf at me for the simple fact I was indeed 'fed up'! The book has been very insightful for me and my family and we are eager to start an elimination diet to hopefully bring more harmony into our lives and our home! ... Thanks again for a truly wonderful, informative book. I have a feeling that we will enjoy some remarkable changes as a consequence of a dietary life change and reading your book! - mother of two, Sydney
My 6 yr old son is to be assessed at the end of this month for ADHD but after reading "Different Kids" (I'm half-way through - it's a GREAT book) I *know* what the answer is going to be.
He is an exceptionally bright child who started school this year. His reading, math and long term memory are exemplary. His teacher wrote in his mid year report that she had never met a child so young with such a broad knowledge base (I'm VERY particular about TV etc... - no mindless drivel in our house :-) . It was she who suggested he be tested as she felt his behaviour could easily impede a great potential. The first time she suggested it I brushed the idea to the back of my mind - defensive about a condition I had no knowledge of. The second time she mentioned it I decided to "look into it". I dug about on the internet first, rang support groups, and got hold of your books. Within 48 hours I was convinced she was acting in my son's best interests and the more I read the clearer it became.
I don't want him to be medicated so I am very interested in the elimination diet (I have "Fed Up" too - I just haven't got that far in my reading yet!).
I've suggested "Different Kids" to numerous people (a lot of them strangers) - some with possible ADHD kids and others with so-called "normal" children - purely for the depth of understanding and dignity you assign to "the problem".
Thanks for giving me an insight into my childhood - now I know why I did (& still do) some of the things that I did (& do) :-). - Kim
I have two children, boys aged six and three. Last year we found the oldest (Christopher) quite difficult to control. He was unable to accept 'no', he was aggressive and his temper was quite short. This behaviour did not extend outside the house. Behaviour at school was marvellous and teachers could not speak highly enough of Christopher's behaviour. It was like there were two Christophers. My husband and I felt it was not going to get any better and to try to get some help before Christopher's behaviour got way out of control.
We spent approximately four months with a psychologist, using the triple p program. Christopher's behaviour turned right around. His behaviour now is so much better, though at times, I do believe there is room for improvement. While working a couple of weeks ago, I was speaking to a lady who has a son with food intolerance, she gave me a full run down. That afternoon I started reading your book (Fed Up). It took me a day and half to read it. It is fabulous. I have contacted a dietican and am seeing her in a week or so. - Mother of 2, QLD
I am writing to thank you very much for your book 'Fed Up', and to say that our family has been on this diet since August 98. By eating 'failsafe' we have experienced great improvements in our family life. During this time my son has ceased using asthma medications, and his eczema, mood swings, behaviour, tiredness, and sinus problems have disappeared. He is now a happy, healthy and settled child. - mother of six year old, Melbourne
I have used your 'Fed Up' book for quite some time, and find it such a help. I have my little boy back, as well as my sanity! - mother of 7 year old
I spent all afternoon yesterday reading your book "Fed Up" and by chance this morning I came across the Failsafe newsletters on the web and have just finished reading them all. At times when reading your book I felt as though you may have been speaking about my family. The sibling squabbles; irritability; difficulties in getting a child to sleep; defiance; a child not helping herself get ready for school; periods of not wanting to sit and concentrate on schoolwork and homework.
I have always realised that my 7 year old daughter reacted badly to some foods, but in the busyness of life (particularly as our family has had a number of crises to deal with in the past two years) it was often easier to give and to avoid the arguments. However this would only deal with the arguments then and there and the behaviours would often kick in later.
My 7 year old has always been very active - she finds it difficult to sit/stand still (although she can sit for long periods and watch TV or read with us) and has never been easy to get to bed. In class I find that she ends up sitting on her own because she "annoys the other children" - although she will say that they annoy her first. I have often put her patches of annoying type behaviours (defiance; reluctance to help herself in terms of dressing etc; fidgeting in class; fighting with her 5 yr old sister) down to periods of unsettled family life. Whilst I think that this has had an impact I'm sure diet is also involved. In the past we have undertaken to watch our diet and have eliminated foods as dictated by a naturopath and I have found the children's behaviour to be calmer with more self control and they certainly had less colds. However, I never had an in-depth understanding of this whole area. I'm an educated women and in hindsight it never ceases to amaze me how in our private lives we do things over and over even though we know the outcomes aren't desirable eg: know the outcome of giving red lollies.
After a particularly heated run in with both my 7 year old and 5 year old and the most wonderful shopping centre tantrums - which came after lollies, iceblocks, chips and fruitjuice, I discovered your book in the book shop. I think fate may have been working at it's best.
I feel your book has provided me with a more in-depth understanding and a desire to pursue an elimination diet to see where it takes us. I have a number of concerns - especially related to the school environment and whole of family participation, especially Dad. For example - how do you get around things like cookie cooker at preschool? As you may know this is where each child takes a turn to bake/buy cookies and take them to preschool for the others to buy. I wouldn't like to isolate my child by not allowing her to participate when the others have cookies to sell.
Part 2
I realise that our issues are extremely mild compared to a lot of the families that have written to your newsletters but it is quite recognisable that the foods that my 7 year old craves are the ones that affect her. I think we will all give the elimination diet a shot. Although it was more the 7 year old that prompted me into action, after a junk food attack my 5 year old displays less than angel-like behaviour. It certainly can't do any harm - in fact it appears to me that what you advocate makes perfect healthy eating sense. You will be pleased to hear that my daughter was the cookie cooker today and all the preschoolers enjoyed failsafe cookies from your book. - Cindy, Qld
Just a short note to let you know that things are going really well and that I am becoming progressively more organised. I have been feeling fantastic lately. At uni I have been doing a lot more work than usual. I am feeling a lot more settled and focused, and I am able to memorise things a lot easier than before the diet.
Two friends whom I hadn't seen for a few months told me last week that I looked well, and one of the girls said that my eyes looked "clear"! I don't know if she meant it literally, or that I just looked more awake! - Ellas, university student
May I take this opportunity to say "THANK YOU". I still feel that I'm just a beginner with all this but I am so very appreciative of your efforts on behalf of us all. I also deeply appreciate the hard path you've trodden with your children. It sounds like a very long one, with more than its fair share of pain and loneliness. I can identify with many of the things you share re your experiences with doctors and the medical system ... the not-being-listened-to, the we-experts-know-best, the they'll-get-over it, the put-this-one-in-the-too-hard-basket and so on. Like you, I find the arrogance and indifference is sometimes utterly staggering.
By contrast, today I met a doctor who was so respectful. I found myself thinking 'where are all the other doctors in the world with a bit of humanity?' Then I felt sad that I even thought like that - but it was true. Too often I feel marginalised or discounted as a caregiver for my kids. - mother of 2, NZ
We have your books - wonderful!, changed our lives, took one of our kids off ADHD dexamphetamine because its what he eats that matters!!! We have five children and two parents on various variations of diets including gluten, dairy and additive free.
- failsafe father of five
Sue, I finally got around to looking at your web page and decided to tell you my story although I magine this sort of thing is all too familiar to you by now.
I am a middle aged male employed in a professional capacity. I have a family. For at least 25 years of my life I suffered migraine headaches. I saw doctors and specialists, I had CAT scans and no physical causes were found. In 1982 I was advised by a specialist to take large doses of aspirin together with ergotamine. I hated ergotamine. I had headaches at least every second day for many years. I took aspirin at rates of up to 2 dozen 300mg tabs a week. At one stage my doctor said I had "mild neutropenia". In the 1990s I took sumatriptin tablets (Imigran) which worked about as well as anything but were very expensive.
In 1995 ... I [found out about food intolerance]. I was ready to try anything and commenced the Elimination Diet. I had a continuous migraine for 6 days but stuck to it. I then started to improve dramatically. I have not taken an aspirin since. I take the occasional Panadol (maybe once a month on average) and this is almost always related to a dietary excursion (usually beer.)
Despite reading all the stuff about how I would improve and be able to reintroduce some foods I have stuck to the elimination diet. I have no wish to undertake challenges and no wish to start eating strongly flavoured but poisonous foods again ... I have learned to appreciate the food I eat and find a lot of enjoyment in subtle flavours.
Now the second part of this message. The more I read about food intolerance the more concerned I am getting. When I read your letter contained in Ministers.html my reaction is one of EXTREME ANGER. How can ANZFA possibly even consider softening of labelling regulations. I have been caught myself by ingredients lists that appear innocuous except for the word flavours or possibly oils with undisclosed antioxidants.
I have never written to a newspaper, never written to a politician and never even spoken to one on a serious matter except through work. However, I now feel very strongly that there must be changes made to stop food pollution.
How can a society where people will chain themselves to construction equipment to stop mining of toxic materials blithely tolerate the addition of things like BHA, BHT and TBHQ to the very food we eat. Sorry, there is no point preaching to the converted.
The point is I would like to HELP ... Of course I am very busy, but I am becoming very passionate about food intolerance issues as I read more and more. Please let me know what I can do.
[Many thanks to the writer of this letter and others like it. See 'FAILSAFE #11 http://fedup.com.au/newsletters/1999/failsafe11-october-1999 for suggestions about how you can help! ... Sue]
From the minute Daniel was born, he was a very unsettled baby. We went home on day three and I expected he would improve when my milk came in. I work as a midwife, so I had some idea of sleepless nights etc, but nothing had prepared me for a baby who screamed constantly when awake and slept very little. My mum said I had been a very colicky baby and my mother-in-law said my husband David had been an extremely colicky baby - so we presumed Daniel was the same.
After three doses of mastitis, I put Daniel on the bottle at five weeks of age. He was just as unsettled on formula as on breast milk. He continued to have several loose green bowel actions a day. The next day we left for the U.K. - my husband David was transferred over there for what was meant to be five weeks but turned into three months. I think ignorance is bliss, when I look back and see myself taking a screaming six week old baby half way across the world to live in a shoe box hotel room. In the U.K. Daniel continued to be very irritable and unsettled. He posited after every feed and only very occasionally vomited. The only place he was happy was in the bath, so we bathed him four times a day some days to keep him quiet. When I look back on my diary of this time, he began interrupting his feeds at about 8 weeks of age. A normal night out for tea (we had no cooking facilities in our room) would be David that would walk out on the pavement with a screaming Daniel while I ate and then we would swap. I remember feeling physically sick myself some nights, he would scream so much.
We visited a doctor for Daniel's immunisations and I told her of his constant screaming - she told me it was colic and that it would improve by three months of age. I started him on solids early in case he was hungry (rice cereal and tinned pumpkin) and changed to a formula for hungrier babies. He seemed better for a couple of days but then was just as bad.
When we arrived back in Australia I took Daniel to a local GP, the one I had seen as a child myself. Daniel was screaming and it was 11 am. This doctor gave me a lecture about colic (by this stage Daniel was four months old) and said, "how could there be anything wrong with a child that has such good weight gains?" I tried to explain that it was taking 1-2 hours to feed him a bottle, but he just gave me a lecture on midwives not making any better mothers. He threw a referral at me for a paediatrician on the way out the door (I think only to cover himself).
I tried making an appointment with the paediatrician, but. being Christmas, there were none available for another month. So we continued to battle on and tried Daniel on a soy formula which seemed to help for a while, but then he just went back to square one. He got worse with his feeds, arching his back. We would bang toys on his bottle to distract him. At this stage most nights he was sleeping though and I think that was the only way we survived. He continued to scream and whinge all day and I'm sure he was exhausted at night and that is why he slept. Despite all this he continued to gain weight and reach all his milestones. I lost weight rapidly and was lighter than before falling pregnant. We contemplated that he was just an attention-seeking baby because when we played on the floor, or took him somewhere different, with different toys, he was okay.
The feeding continued to get worse so two and a half months after seeing the GP, when Daniel was six months old I took him to a paediatrician He immediately diagnosed reflux and oesophagitis (inflammation and ulceration of the oesophagus) and started Daniel on Ranitidine (Zantac) which reduced the acid in the stomach, to stop the 'heartburn' type pain. I will never forget what a relief it was to get a diagnosis; little did I know that this was only the start.
Daniel's feeds immediately improved on the Zantac but he continued to be very irritable and whiny between feeds. Three weeks later we started him on Prepulsid (Cisapride) which increases the rate of the stomach emptying, but it didn't seem to make a great deal of difference. We tried him on Nutramigen, in case he was cow's milk intolerant. It seems to help for a couple of weeks, but then he just went back to the old irritable Daniel.
I had become suspicious of a few things in his diet. We went camping over Easter and I gave him a Heinz tomato based baby food - it came out the other end looking nearly same as it went in and Daniel was extremely unsettled all weekend. A booklet from a support group for reflux babies mentioned avoiding acidy foods for reflux babies so we presumed that was the reason it was upsetting him. Luckily, for this reason, we didn't give him Kiwi fruit, oranges or fruit juice.
At eight months of age he was still whingeing all day and throwing huge temper tantrums (head banging the dishwasher) so our paediatrician organised a barium swallow. He also started him on Mylanta four times a day. The first week on Mylanta he was wonderful and that week he had the barium swallow, which was normal, much to my disgust. The next week he was worse than ever. I stopped the Prepulsid at 12 months and started Daniel on cow's milk, which made no difference. At this time I went back to work two days a weeks and left my mum to cope with Daniel - there was no way a child care centre would have taken him. I think going back to work was the best thing. I would come home after my two days and feel ready to cope with another week of life with Daniel. My mum says she even dreaded him coming for the two days sometimes.
Around this time I tried a naturopath, masseur and chiropractor, but nothing really helped.
By fifteen months of age he was no better. A normal day was leaving him scream to get him to have his afternoon sleep and to settle at night. I would put him in his room several times a day on a bad day and sit for ten minutes and try to calm myself down. Normal daily talks such as cooking meals and washing were all done while he screamed.
I returned to his paediatrician and he referred us to a gastroenterologist at the Royal Children's Hospital in Melbourne. He told us that he doubted Daniel's behaviour was due to reflux (Daniel smiled at him and played with the toys in his room!) He advised I stop the Zantac and organised for him to have a pH study (monitors acid in the oesophagus over 24 hours) and gastroscopy (tube to look at the stomach and oesophagus). After stopping the Zantac, David actually seemed a little better and stopped his head banging.
The pH study showed 'mild' episodes of reflux. His gastroscopy showed moderate to severe inflammation and ulceration of his oesophagus and suggested that there may be an allergy involved. They suggested we see the allergy department at the Royal Children's Hospital. They put Daniel on the Neocate diet. He was only allowed Neocate formula, rice, zucchini, apple, pear and potato. The doctor at the allergy department also advised me that these children get into such bad behavioural problems that once they're fed and changed you just have to leave them scream! The diet was a disaster to say the least - to try to get an 18-month-old to drink this formula, that you gag on yourself it's so foul tasting, was impossible. Daniel screamed all week and was so bad by the end of the week I had to take time off work. He was constipated from only drinking small amounts of water.
In desperation we were referred to a surgeon about the possibility of surgical correction. He wasn't convinced - so he sent us for a gastric emptying study, which was very distressing for Daniel - they put a large dome over his fact and stomach. This showed he only refluxed once. The surgeon suggested trying Losec (Omeprazol) which stops acid production in the stomach and helps heal the oesophagus. We started Losec - after about a month we noticed a big difference in his behaviour - he was a much happier little boy and he actually sat and played with toys for short periods of time - something he had never done before.
I was suspicious of food colouring and artificial additives at this stage, as some evenings we described Daniel as 'bouncing off the walls' he was so hyperactive. For this reason we only let him drink plain milk and water and filled him full of 'healthy' fruits, vegetables and cheese!
Like everything else the effect of Losec was wearing off. Daniel was starting to complain of his 'tummy burning' and pointing to his oesophagus. He required constant amusement and was general a very unhappy little boy. I was finding him nearly impossible to live with and constantly comparing myself to the other mums in playgroup and wondering why they all got so much enjoyment out of their children.
When Daniel was around two and a half years old I happened to got to a seminar through work on food intolerance and allergy run the team at the Royal Prince Alfred Hospital in Sydney. I couldn't believe what I was hearing at the lecture - it was Daniel all over! I immediately sent away for the elimination diet books and got a copy of Friendly Food.
I started off by leaving him on dairy and wheat products. After 1-2 weeks we noticed a difference in his hyperactivity on the diet but he was still having many days of irritability and complaining of his tummy burning. His loose bowel actions were persisting. We stopped dairy products and put him on soy and we starting giving his Losec in pear jam instead of yoghurt. He had watery diarrhoea for two weeks after stopping dairy products as a withdrawal effect. Unfortunately what we didn't know was the Losec is not absorbed properly unless given in something acidic like yoghurt. After one month of giving the Losec in pear jam, Daniel's stomach pain was severe.
After being unwell for three days with a high temperature and complaining of shoulder tip pain, Daniel was finally diagnosed at the Royal Children's Hospital with pneumonia from aspirating on his vomit. (I had seen two other doctors who told me children don't know where their pain is and that he had a viral infection.) The pneumonia was in the back of his lung and was pressing on his diaphragm, which was giving him shoulder tip pain. I have never seen Daniel so sick - we thought he was going to die.
Again in desperation we returned to his gastroenterologist who advise another pH study and returning to the surgeon for fundoplication, which kinks the oesophagus to stop food refluxing back from the stomach. He felt he might have a physical problems as well as an intolerance, which caused hyperactivity. So when he was three, Daniel had fundoplication. We stopped the Losec the night before surgery. The surgery was major - four days in hospital and two days on a morphine infusion. As soon as the morphine stopped Danial started complaining of his stomach burning but now he pointed to his stomach rather than his oesophagus - the surgery had only moved the pain. We recommenced his Losec on leaving hospital. Daniel's weight had dropped from above to below average, as we struggled to maintain his nutrition on vitamised elimination diet. I hit rock bottom. I was waking at night in a sweat over what I had put him through. I rang the Royal Prince Alfred Hospital Allergy Clinic in Sydney, beside myself, and they suggested that we bring Daniel up to Sydney. I only wish we had done it prior to the surgery.
At the clinic, his behaviour chart revealed that Daniel was very high for hyperactivity and learning problems and we were told we were dealing with severe food intolerance and ADD. We were advised to try Daniel off pears as he is very salicylate sensitive.
Daniel is now nearly four and in the last month he has been consistently much better. He only tolerates rice, potato, cabbage, beans, chicken, lamb, Nuttelex and restricted amounts of sugar. He is still on Losec which we have increased in the last month to combat his stomach pain. We have found he is no longer reacting as badly to perfumes since stopping pears and maple syrup. Since stopping rice bubbles his aggressive behaviour have ceased. He will actually sit and play with toys now, although his concentration is poor at times. We have tried him on Ritalin but if he's having a bad day food wise, Ritalin only makes him worse.
The last four years all seem to blur into one big nightmare but I realise I was becoming very bitter about the whole thing. I have resolved to look ahead only. Daniel is really a beautiful little boy underneath all the problems he has had. I try to make the most of the good days and not dwell on the bad days.
It is in the hope of preventing someone else living our nightmare that I do the telephone counselling for D.I.S.A (Distressed Infants Support Association of Vic) and have agreed to be the Melbourne contact for food intolerance in Sue Dengate's book Fed Up. - Jenny
"We are witnessing immediate results in a 3½ year old grandson as one of our daughters implements a watchful discipline on eating habits as a result of reading Fed Up." - John
(June 1999)
Part one
"You might be interested in part of an article in a newsletter from my son's high school. It is a fact sheet : "Attention Deficit Disorder - The Facts" written by Dr Mark Gibbeson, Behavioural Paedatrician, Sydney Children's Hospital, Randwick.
It states as follows:
"MYTH: Drugs are the only treatment given to help these children
FACT : Medication is without a doubt the most effective management tool to help these children concentrate at home and at school. Dietary manipulation is of little help to most ADHD children [yawn]. Long term improvement is best achieved with the help of behaviour programs, family and teacher counselling and, of course, helping the children themselves come to an understanding of their condition as they grow older."
This article alarmed me because there was a contact number for further information and books on ADHD. You can bet your life that "Different Kids" and "Fed Up" are not on their list. I am also alarmed that these fact sheets are given out freely to parents and professionals alike really offering no other choice than to medicate.
I agree that a lot of parents would need to be helped with behaviour programs but I now think diet needs to be looked at first before resorting to medication. If the diet has been adhered to strictly, I am sure that most parents would see an improvement in their childrens' behaviour as I have seen with my son ...
It makes me angry that there are so many experts out there willing to medicate our children without first offering alternatives."
Part two (after 6 weeks on the elimination diet)
Today Jake was the best he has been, but even though I watch what he eats and drinks, I got caught. He sneaked some Sprite lemonade and I didn't know until I arrived to pick him up from after school care. The carers said his behaviour had been "ratty, obnoxious, argumentative and hyped up" all afternoon. He had told them about the Sprite. They said there really must be something in this diet thing as they had seen a rapid change in his behaviour since I had dropped him off. At this stage I hadn't seen him yet. Then Jake bounced through the door and nearly ran up the wall. It took me half an hour to get him into the car. He wouldn't listen to reason, he was totally off the planet. I will have to be so careful in the future. - Dianne
We purchased your book 'Fed Up' and started to use some of your foods mentioned and in a matter of two days we noticed a difference with our two children who are ADHD.
Our six year old was diagnosed ADHD 12 months ago. He was in the top 3% for hyperactivity. Ritalin has never been our answer but seemed to be the better of the two evils. He still finds it hard to fit in with children in his class and is often left standing alone when it comes time for the children to pick a partner. He however interacts very well with older children and all his friends at school are two or three years ahead of him. When you strip away the ADHD he is the most gentle intuitive animal-crazy kid you'd ever meet.
I had felt up until a day or two into your diet we had been robbed of the normal loving caring relationship shared by mother and son and it makes me sick to the stomach that all the so-called top paediatricians and psychiatrists have never mentioned diet, only increasing the amount of Ritalin and disregarding my theory on diet. Our son loves school, even if it comes with a few knocks. He's bright and he wants to learn so I want to do everything in my power to help him succeed and your diet works better and more consistently than Ritalin.
Our younger son is 15 months old and what a handful he is, exactly like his brother but with a temper, again the diet has helped him slow down and become more focused and much calmer to be around.
Thank you so much as it has brought our family closer. - Leesa & Stephen, NZ
This story is particularly interesting because it highlights the need to do the elimination diet absolutely strictly. One small problem on a daily basis can completely undo the benefit of the diet. Advice from health professionals about trying dietary management "but not taking it too seriously" is counterproductive. For at least three weeks you should take it very seriously indeed, until you find out exactly what the problem is.
Sue ... Thank you so much for alerting us to the incredible array of preservatives and additives etc. in the food we eat and feed our children, completely oblivious to the potentially damaging contents.
I am yet another one of the converted who read your book cover to cover from the moment I picked it up. I am 99% convinced now that one of my 6 year old twin boys is affected neurologically. The case studies were fantastic in relating to the range of effects and most importantly showing us that 1. there is a logical cause and 2. reversals are quite possible.
Jeremy has the classic attention difficulties, social interaction weaknesses and challenging behaviours although nowhere near those of some of the children in your case studies. I would class him as mild, but still there is a very noticable difference to other children of the same age.
I have started him on an elimination diet ... only to be foiled by party food at school which I was unaware of .... so we will start again. [about to see a dietitian]
Thanks again and I look forward to reporting to you very soon that another child and family has benefited greatly from your hard work.
Part 2
- a couple of weeks and we wanted to give the diet a fair trial and report to you the reaction from school after Jeremy returned from school holidays .
We had some fantastic results early on and saw some dramatic changes in social skills, attentiveness, motivation to learn, reading capability and focus to task. We saw a much happierchild who was noticeably gaining in confidence and self esteem . By Day 9 and 10, both his teachers at school and swimming independently noticed the marked change. We then had 2 weeks of school holidays and close management of the diet. We believed we had found that dairy and amines were the most likely causes.
.......At this stage we were absolutely delighted and waiting on the big test of returning to school as an effective independent review by his teachers as we felt he had made significant progress over the two weeks.
On his first day back the comment in his school diary was ......" WOW, What a change" Unfortunately, over the last 14 days we have noticed a gradual reversion to his old ways.... although there is still improvement from before starting the diet. I have documented his food diary since starting the diet and we are now in the frustrating process of trying to work out what is going wrong and what the culprit is. It isn't obvious to us, but something is lurking in there tripping us up.
The most obvious major change in his diet has been moving to So Good Vanilla flavoured drink. I noticed on one of your reports that So Good lite with corn syrup can have a slow build up reaction ..... I don't suppose there are any reports of the vanilla flavoured one having a similar effect ??? [Yes!! - many children react to vanilla, even natural vanilla. If in doubt, take it out.]
Other than this, we are grappling for ideas as to what it could be, especially as we have seen ... for a short time .... what a different little boy he can be. His grandparents and others who he sees regularly are all clearly convinced that there were marked changes .. so it is not just the opinion of wishful thinking parents who saw the dramatic changes.
Thanks again for alerting us to this most fundamental problem ........We're absolutely determined to find the answer to Jeremy's diet so we can re-capture the delightful little boy we saw a glimpse of recently, and remove the obvious frustration he also feels about the reversion. - Di
Epilepsy is a little-known side effect of food chemicals. Kerry from chapter 4 of Fed Up has noticed that her seizures are triggered by salicylates and tartrazine colour (102). Another university student noticed that some foods trigger his seizures. Of the foods he mentions below, chocolate and orange juice are both very high in natural food chemicals called amines (May 1999)
Thanks for your book Fed Up and web-site. They're very useful and an eyeopener, especially since I suffer from epilepsy.
My epilepsy is well controlled by medication so it is difficult to determine what causes a seizure. However, I know that feeling fuzzy headed, over-talkative & rambling, are precursors to a seizure - especially feeling fuzzy headed. I notice the fuzzy-headedness, first, after not sleeping well.
I will experience a bad night's sleep through restlessness and at some point during the night I will wake up and start scratching my forearms. Waking up in the morning is difficult. The next day I can't think, especially to do math, or to perform conceptual thinking such as writing an essay. Reading is a problem during these times - I'll find that I can't concentrate, nothing seems to "get in" and I keep re-reading the same sentence hoping to extract meaning (eventually I give up).
The worst foods are chocolate and dairy (but I have to eat a lot of dairy for about a week before I notice any effects). I went on the "fit for life" diet and noticed that juices were causing similar problems - I sort of became addicted to orange juice and was having major mood swings. The same problems occurred when I tried the "liver cleansing diet." Chocolate is, by far, the worst.
I find that I am not good at sticking to diets, but I keep trying - especially when things get bad!
Part 1
We are finding it difficult to start on the diet properly. Our vegetable garden at the moment is rewarding us for months of hard work by producing large amounts of tomatoes, sweet corn, strawberries and silver beet, it is very hard to pass all these up.
However, when we eliminated all additives - which wasn't many as we have always tried to avoid these anyway - our three-year-old started sleeping through the night every night for the first time - after only two days without two glasses of cordial each day. People said he is just growing up, but when he had commercial bread two days in a row for lunch (we usually bake our own) he woke up in the night on those two days only.
My own experience has been really great. I have suffered from migraines which last for two days every week for years. After five weeks of no additives and no foods high in amines I had not had a single migraine and felt wonderful. Then last week a friend gave us some home cured and dried beef, I couldn't resist. Guess what, a migraine the next day. I am going back on the diet straightaway.
Our 13 year old daughter suffers from asthma and headaches and was becoming what we thought must be normal at her age (withdrawn and sullen). Now she is hooked on the diet. No asthma, no headaches - she feels great and her general attitude to life in general has improved. My husband thought that sitting in front of a computer all day was giving him headaches every afternoon but has now made a connection between his headaches and chilli sauce on his sandwiches and the orange he was eating for lunch.
Our 11 year old son was actually the one we decided to do the diet for. He was extremely disruptive at school, could not concentrate or complete tasks and found it difficult to maintain friendships because he had a very volatile temper in the playground to the extent of injuring other children by throwing bricks, rocks and sticks. If he considered something was unfair he would destroy any cubby houses that the others had constructed. At other times he was a complete angel and couldn't do enough to help others. He is also the hardest one in the family to keep on the diet. He doesn't see his behaviour as his problem, it is always someone else's fault. He was going really well for a week or so then suddenly had an outburst one afternoon at school that his teacher, who is very understanding, could not account for. Later that night when he calmed down it came out that he had swapped sandwiches with a boy who had anchovies on his lunch.
Part 2 (two weeks later)
I've decided that I don't care how much our garden is producing after having two migraines following tomatoes for dinner one night and silver beet another. Both these left me feeling unwell and nauseous for 4 days.
This was also time for a breakthrough with our 11 year old son who also suffered from similar symptoms - as well as behavioural - for a few days after eating the silver beet. He is now aware that there is a connection with the food he eats.
You would be absolutely horrified to see the tuck shop at the school I am working at. Lollies, slush puppies, etc. etc. etc. It is a tough school with lots of behavioural problems. I am reassessing what I am doing. I am not questioning teaching and learning but am thinking about what sort of setting I want to do it in. I have real compassion for those with learning difficulties and much prefer working with those who need remediation work. Perhaps because I was a 'slow learner' I understand where these kids are coming from.
I value my time too much to waste it on people who aren't receptive. I do not want to spend my whole day managing behaviours that are influenced by many other factors beyond my control. Does this seem selfish?
... more news from the family whose story appears in Fed Up, page 329. After enjoying their 3000 km holiday through the Kimberley and the Gibb River Road so much, this family of four have taken time off to travel around Australia and New Zealand - how do they do it?
We are in a truck and a caravan set up so that we can get work along the way. We have two boys aged seven and eight. The eight year old is the food intolerant one whom we thank for showing us the way into learning so much about foods and our own intolerances and how the problems can be solved, even though at first we cursed the situation that he "caused" but now we know better ... and are still learning so much about these situations.
We always stick to the elimination diet or failsafe foods as that is the only way we "survive" so to speak. We have containers in one of the van cupboards with all the raw ingredients such as sugar, milk powder, flour, oats, rice, noodles, rice bubbles, etc and we carry the tinned foods and the bread maker along with the right bread-making mix. It's not hard at all and is quite cheap as it's all the old fashioned cooking ingredients.
We make up many different meals with those ingredients such as pizza, stir-fry with fresh/frozen meats, noodles and the right vegies. We often use cabbage, leek, shallots, green beans, red kidneybeans, rice - and we make up chicken rolls with pastry. We usually only eat meat every second night and our only take-away foods are hot chips once every so often. I try to make muffins and bikkies when I can and we have sponge/butter cakes along the way too. We use a small amount of shredded Mozzarella cheese.
Our meals usually just emerge from what we chop up and cook. We use fresh garlic and we also make up a pot of chicken stock using just chicken carcass, leek, shallot and lotsa water. Then we freeze this all down in recycled Philadelphia cream cheese containers (we have lots of those!) and it stays frozen in the van freezer part of the fridge (two door fridge) even when we are on the road all day and the fridge/freezer is off power. I didn't think they would remain frozen all day but they do which is wonderful.
Travel lots - it's great for everyone - the "travelling eliminators"
Thanks for taking the time to write such a great book. I am reading "Fed Up" as fast as I can, which isn't fast enough. My seven year old son shows all the classic signs of a child with a sensitivity to foods.
Last week I started by taking him off fruit juice and fruits except pears ... the school called me and asked why my son was different. Now we are into the diet full swing and hoping for good results. He is missing his tomato sauce but there are no other complaints from him. Thanks again!
"I still like my diet because it helps me."
Love Jake o:-) (the angel)
My name is Julie, and our family consists of my husband Ian, our daughter Sarah aged seven, and our sons Callum aged three and Devon aged 16 months. Last year in April Sarah was diagnosed as autistic and in November Callum also received a diagnosis of autism. Pretty interesting year, I can tell you! I knew nothing about autism, all I knew was there was something about my daughter that just wasn't working as it should. Both the children are what they call "high functioning" autistic. Which in everyday terms means that there is no intellectual disability and they have a lot of skills.
I remember now people commenting on how 'busy' Sarah was as a toddler. As she was my only child, I never knew any different. She very rarely slept, we used to be up until 1 or 2 am rocking her, pushing her, anything to get her to sleep. When she did sleep it was only for a few hours at a time. She started coming out in terrible rashes over her arms, legs and torso when she was around fourteen months old. I went to a naturopath who placed her on a very restricted diet and everything cleared up. Sarah's behaviour improved and I thought I had cured the problem. I now realise we had taken most of the problem-causing areas out of her diet. We were told that after Sarah's immune system had time to recover we could more or less resume a normal diet which after 12 months we did. The rashes never returned and we thought we had it licked.
But all that happened is the symptoms appeared in a different manner. Sarah became withdrawn, anxious, and suffered severe night terrors. When she was three, Sarah started Montessori school and then we started to notice other things. Sarah was exceedingly shy, she would not communicate with other children even after she had known them for a long periods of time. She had no recognition of colour and never described anything by its colour. We had her eyes and ears tested, but nothing showed up. When Sarah was four, Callum was born. When he was three months old we moved up to Tom Price in Northern Western Australia. We are fairly isolated here, our main centre being five hours drive.
Sarah started preschool and would vomit for no apparent reason in the mornings before school. She was tested and pronounced hypoglycaemic. I was told to feed her more often. Grade 1 presented more problems, huge anxiety attacks and night terrors lasting two hours. I would pick her up from school and find her sitting crying under her desk. Still I was told it was developmental and she would grow out of it. In desperation I rook her out of school and went back to Perth. I put Sarah back in Montessori and everything stopped - no anxiety, no night terrors, no vomiting. I eventually had Sarah assessed and we received a diagnosis but not a lot else.
Later that year Callum started repetitive behaviours such as pushing his head along the floor, staring at fans, complete withdrawal, no eye contact and delayed speech. By the time he was diagnosed I was drowning. I wanted to go back to the city, anywhere where I could get some help. I even withdrew from life myself. It was too hard to go out, I got sick of people staring, making helpful or unhelpful suggestions, it just all got too hard.
Then in November 98 a friend gave me Sue Dengate's book Fed Up. I started that day and on the first night of the elimination diet my two children slept through the night. That was the first whole night's sleep I had for nearly seven years.
I am convinced! Sarah is managing mainstream school without the stress of last year. She has made friends. Her communication skills had improved so much within two weeks of starting the program that her teachers asked me what had changed. Callum now makes eye contact with people and laughs and talks. He is just getting better and better, his vocabulary is so vast now it makes me gasp! He enjoys playgroup and is even starting to play with others.
I know a lot of autistic children will only eat a limited amount of food, and Callum is definitely in that category but I believe that it is so very beneficial to make the food they eat failsafe. I also found that after they withdrew from our previous diet, which with Callum took around six weeks, their tastes had completely changed so they didn't mind the failsafe food at all. In fact, Sarah has asked me never to give her food that isn't good for her because it makes her body feel bad.
I am grateful to Sue for writing her book. I has completely changed our lives and it has, I'm sure, completely changed my children's future. - Julie
Part one
Having just finished reading Fed Up I felt compelled to speak to you - your book struck such a chord! For two years now we have been battling with our daughter's health and behavioural problems and have been fobbed off left right and centre. It was such a wonderful relief to speak to you and read of your experiences and know that we are not alone in this.
Right from the start Emily Rose was a 'difficult child' - never slept for longer than two hours at a time at night and had only two short catnaps of about 30 minutes during the day. She cried a great deal, wanted to be held constantly and often woke up screaming. Clearly this was going to be a challenge. After four months the sleep deprivation really hit home and we began doing the rounds of the doctors in an effort to establish the nature of the problem. We had no answers apart from maybe it's colic, watch your diet, cut out brassicas, fruit juice, yellow stoned fruit, onions and garlic. No one mentioned cutting out dairy, tomatoes or tea!
We thought we ate healthily - no pork or processed meats (having worked at a food company and seen what goes into sausages, ham, bacon etc, we came off them in 1994), drank herbal tea, didn't drink coffee or fizzy drinks, had very little alcohol, didn't eat much in the way of processed or preprepared foods, don't eat take-aways and had a high proportion of fresh fruit and veg in our diet with little in the way of fried food. At one stage we stuck to the Fit for Life Diet for at least 18 months. We struggled on and wondered how it was possible to have a baby like this - did parents survive such an experience without going insane or committing infanticide? Here we were, both with post graduate degrees, fairly competent people, reduced to grovelling wrecks - the baby running our lives. Thank God, my husband David was very supportive I can't imagine how much worse it might have been had he not been there for ER and I.
During her first nine months, Emily Rose had three ear infections and was put on antibiotics. Although we do not believe in antibiotics we were desperate enough to give it a go. The problems with her sleep continued. We insisted on a referral to a paediatrician in an effort to establish whether there was a physiological cause. The paediatrician was most unsympathetic, of course ER was as good as gold there and didn't exhibit her usual crying or fretting, she gave Emily Rose a cursory examination and pronounced her a 'bright' baby (began to crawl at five months and proficient at getting around by six and a half months, sticking her hands into everything within reach). Her whole attitude was 'look, I have a three year old and he still doesn't sleep well, so just learn to live with it!' We were referred to [a health department facility for mothers and babies] and had a day stay as well as two home visits - the upshot of that was we were told we had a 'naughty baby' who should be taught to sleep (controlled crying etc and left in her cot for up to an hour at a time, very distressed, crying and screaming). I couldn't believe that at five months a baby could be naughty (it went against the grain of all my psych training and experience) and the controlled crying etc was nearly the undoing of me. We stopped using [the health facility] or their advice - I refused to be made to feel guilty and did not like the implication that we were bad
Finally when Emily Rose was about 11 months I contacted the Government Audiologist and asked for his advice and a referral - she had just blown a fourth ear infection and I was not satisfied with the doctor's comment that this is normal for young children - 'they have an average of 13 infections in their first year!' We were put into contact with a GP who specialises in distressed infants and it was the first turning point. This doctor's hypothesis is that some infants from families with histories of allergy/intolerance exhibit sensitive tissue which overreacts to irritants. This view is unfortunately not well accepted in the wider medical circles here in Perth. However, we thought it made sense in our case as we both have history of sinusitis and I am subject to migraines. Emily Rose's reflux caused irritation of her oesophagus and the lower end of her Eustachian tubes setting up an environment ripe for infections. It was a relief to find a reason and to be able to begin to treat the cause rather than the symptoms. Whilst we are very grateful to [this paediatrician], it is my personal belief that she does not emphasise the food intolerance aspect enough and tends to concentrate on the antibiotics and grommet course of treatments.
On her initial visit, Emily Rose was given a tympogram and we found that both her ears were effused - obviously she had been in significant pain for most of her life. She had probably had more ear infections than we were aware of as she exhibited asymptomatic otitis media. No wonder she did not sleep well, if she lay down for any length of time, the pressure built up in her ear drum until she woke crying/screaming. More antibiotics, and we were advised to move her off milk based formula for her complementary feeds to a soy based formula. I breast fed her until she was just under two but we had to start complementary feeds at about nine months - I think I was too exhausted to continue on my own. We used soy formula for about four months during which time her bowel motions became increasingly loose. Eventually we agreed to the grommet route because we did not want to continue with antibiotics, she was looking ill and peaky with dark circles under her eyes, and when read stories about children going to bed would clap her hands over her ears (we took this as an indication that she associated bed with pain). Within two weeks of her operation the difference in the child was astounding - she gained some colour in her face, the dark circles receded and she began to pick up weight. parents!!
However, her irritability continued and in fact began to get worse. We began to explore whether her behaviour was in any way related to food and took her for vega testing. We were astounded by the results: wheat, dairy and soy intolerant as well as sensitive to salicylates. Controlling her diet more closely produced even better results. In May 1998, when we took her off the soy and reduced her fruit intake, her irritability subsided, the runny nose also began to clear and she began to look healthy and rosy!
Over the last few months we began to slowly reintroduce wheat and dairy into Emily Rose's diet. She loves her rice milk and is a good eater when she is well and has an appetite. She eats a broad range of fruit and vegetables and is not what I would consider a fussy eater - apart from not liking chicken! On reflection I realise that we did not have enough information about food chemicals such as salicylates and this is where we have gone off the rails again. Thinking we were doing the right thing we introduced cranberry juice into her diet to provide her with vitamin C and gave her crushed almonds for calcium.. She loves olives and will go the fridge to help herself to them. We tend to eat a lot of home made tomato sauce on pasta and rice and lavishly pour olive oil on our steamed veggies and salad! We made sure Emily Rose had at least two - three pieces of fruit a day: watermelon, apples, grapes, nectarines, pears or banana.
The slide into the intolerable behaviour has been so insidious that we did not make the connection with food. Emily Rose has become increasingly obstructive, obstinate, defiant and plain horrible. This is more than just the terrible twos! The tantrums started about six weeks ago and are unbelievably dreadful - she will cry and thrash about for over an hour and on one memorable day had three tantrums! There is no identifiable behaviour which triggers the tantrum nor a particular time of day when they occur. What upsets us the most is the fact that she tries to hurt herself during the tantrum either head banging or biting her arms, wrists and hands causing bad bruising. Time out in her room was out of the question as it resulted in bruises and egg sized swellings on her head (banging her head on the closed door) as well as split lips and blood all over the show. We have learnt to sit and restrain her, all the while talking her through the episode. Very debilitating for all concerned.
We seriously wondered about the wisdom of our even considering having a second child when we obviously couldn't handle one! Needless to say David and I are both exhausted and somewhat depressed - our life revolves around how ER is behaving. Is it going to be a good day or one of those horrors? We don't seem to have any time to ourselves as we spend so much time and effort trying to deal with Emily Rose. She continues to be difficult to get to sleep - it can take us one and a half to two at night to get her to go into a deep sleep. We have very few uninterrupted nights - sometimes she will only wake once, other occasions it is at least three or more wakings. None of our friends seem to have these difficulties with their children. My sister has a dream child - you wouldn't even know that her daughter is in the house. Why us ???? As migrants we have no family support or the gaggle of houseservants we had at home. My greatest desire is to have a whole weekend of uninterrupted sleep whilst ER is farmed out somewhere!!!
The light dawned as I read Fed Up - this child is very sensitive to salicylates and we need to cut out all those foods. I now have enough information on what foods contain salicylates to begin to do this in a logical and constructive way. Previously when we went for the vega testing we were just told to cut out certain foods but not given enough information as to why or how. I am now very motivated to start on the elimination diet and finally establish exactly what her problems are
... David has said he will also do the diet in an effort to sort out his recurrent sinusitis so this will be a family effort.
Part two
We are on day two of the elimination diet and I must admit that I am finding it hard going especially as we are also dairy, wheat and soy free. Emily Rose is already so much better, not as good as she could be, but an improvement. Since withdrawing the cranberry juice 10 days ago we have been tantrum free - just crying fits which are easier to deal with. The other great thing is that her snotty nose has cleared up for the first time in months. She is still very irritable and easily frustrated but I am sure that will improve. We just have to hang in there for the next three weeks and will challenge with wheat first because I reckon cooking will become that much easier if we can have wheat! - Simone
Part one (after four days on failsafe foods)
"Our 4 year old son Simon is an extremely active child that we have suspected of food intolerances for a long time. I had a miserable childhood, labelled as a "Trying Child" at five years old and spent most of my school life outside the teachers office. When I was 11 my parents put me on a preservative-free diet which did wonders, but was very difficult as 20 years ago no food was labelled.
Simon is extremely volatile at home and little things set him off, for example a rollerblade through the plaster in the wall because he could not get the knee pad done up properly. He is a perfect angel when things are going his way, but explodes when he is challenged or things do not turn out how he wants. We have always been proud of his "mature palate" and his weekly diet would include foods like pesto, tuna, anchovies, olives, salami and parmesan cheese. He generally melts down in the afternoon at 3 pm. As he has never eaten sweet foods we thought he was not reacting to foods in an obvious way. He also eats heaps of bread, all with preservative 282 we discovered.
For four days we have been in heaven. Simon has done things that were just never part of his personality (washed his hair, flushed the toilet, picked up toys) and already he is much more communicative, following me around the house just chatting. He has been challenged by things not going his way a few times and had a couple of tantrums, but they are less severe and over very quickly.
The best thing is that I have been eating the foods he eats and I feel so much calmer and able to deal with him ... My husband and I consider we are reasonably intelligent and rational people but we have been at a complete loss about our son's behaviour.
Part two (six months later): Simon is at school now and has settled really well. We went to see a behavioural paediatrician before school started and he stressed that these behavioural issues cannot usually be solely dealt with by diet ... but he was very impressed with our details about Simon's change in behaviour and his diet, supported by testimonials from the day care centre.
We have had our first parent teacher interview at the school and we went along all defensive and ready to hear tales of mass destruction in the class room and were overjoyed to hear the teacher describe Simon as the "Model Student", courteous, hard working, able to concentrate. We were so overwhelmed that we did not even find out if he is intelligent or at the bottom of the class, because, quite frankly we do not care!!!! As long as he can sit still ... he still is very excitable in the playground, but not aggressive.
The next week he was awarded a "Special Effort Award" for "Excellent Cooperation in the Classroom", and had to go to the front of Assembly to receive it, and all this from a boy who six months ago we did not think was going to cope.
We are still identifying things that really affect him and we do not touch olives, cheese, tuna, meat pies and soy sauce now. We have had a couple of incidents with sausages and sausage rolls which have resulted in snitchy behaviour and bed wetting ...
We have been really pleased with the response from the school. They do not have a tuck shop and we have written to Simon's teacher about food sharing. There have been two birthday celebrations and on both occasions the parents have contacted me about what party food Simon can have, so the whole class has gotten sponge cake and lemonade icy poles.
The child care centre has recommended your book Fed Up to a number of families that they feel might need to address their children's behaviour through diet. They also have a low to moderate food chemical diet for babies room based on the Friendly Food book from Royal Prince Alfred Hospital Allergy Unit. They do not eliminate everything but are aware of not giving multiple serves of "high" salicylate fruits to the children and the menu is very low in amines. Again we have been very impressed with their help.
Thank you for your help, we have another appointment with the paediatrician next week to follow up Simon's progress at school. He was going to contact the school and work through some management strategies for Simon if the wheels had fallen off when he started school. Now it seems as though his unmanageable behaviour was a bad dream and that it was a completely different child to the reasonable, mostly rational and adorable 5 year old that we now have.
Part three
Although Simon was not a "basket case" before Failsafe foods, everyone we know has commented on his behaviour improvement, even though some did not think it was an issue previously and it was not an issue for us every single day. His change in general demeanour has made a HUGE difference to our lives, just the ability to communicate daily without the general crankiness has made us a much happier family. I think that many people do not realise what a difference it makes just not to have to battle over every issue and every point with someone who often realises they are being very unreasonable but cannot manage their responses, and that children do not need to be on the verge of being put on medication to greatly benefit from diet changes.
Part 4 (June 1999)
(This family was one of the first to buy Fed Up and started an elimination diet soon after when their son was in preschool. Here is the follow up after nearly a year on failsafe foods with Simon now in school.)
We have just had Simon's first school report and teacher interview. We were over the moon when we saw his report, he is doing really well in prep, has no difficulty concentrating (no more than other 5 year old boys), and is on track with reading and writing. AND - he scored in the highest category for "polite and considerate" and "cooperative in class"! We are so pleased at how well he has settled into school and how responsible he is with his food. We have maintained a failsafe diet for nearly 12 months now and we have never been happier. My husband and I have given up wine and beer (now we stick to gin) and this has added to the benefit. We cannot thank you enough for your book and your help. - anonymous
"Jessica was born a normal healthy 7lb baby. One of the first problems we had with her was with vomiting after breast-feeding. My sister, who came to stay with us when Jessica was 3 months old, asked me whether we had noted that she vomited after I had eaten certain foods e.g.chocolate cake one day meant that she was vomiting the next. We had noticed this.
We returned to NZ from Germany when Jessica was 5 months old and continued to have problems with her. She was very active, tiny and walking at 9 months. By the time she was one she was constantly wanting food but would eat very little of anything and would hide the rest round the house. She hardly ever slept through the night, crying for attention a lot. She seemed genuinely distressed. We were still concerned about the amount of times she vomited and the crying but were told that we were neurotic. It got to the stage that we thought, as there was nothing wrong according to the doctors that we must have hygiene problems. Her high chair was washed with hot water just before she sat in it (always using a clean cloth). The plates she ate from were rinsed with hot water before the food was put in them. But she still used to be difficult about eating and vomit a lot. Two things that we noticed her having difficulties with were yoghurt that her older sister loved - after two spoonfuls she became grizzly and refused food, and fish fingers that most children loved. Some nights my parents-in-law would keep her for the night just so that my husband and I could have a night's sleep.
By the time she was two I was expecting our third child and as I desperately needed rest we put Jessica into daycare three mornings a week asking them to give her lunch there as that removed the battle from me. This continued up until we left NZ even though she was so often sick during the afternoon when she came home from daycare. For me that bout of vomiting in the afternoon was worth it if I could have some rest in the mornings.
When Jessica was 27 months we borrowed my parents' caravan and took a holiday in the Bay of Islands. While we were there we took the children to visit a dairy farm we saw a cow being milked and Jessica drank some of the milk. Unfortunately being her she did pick up a bug from this and started vomiting and having diarrhoea. She very quickly started dehydrating and we took her to the local doctor who suggested that the best thing to give her would be Raro sachet drinks mixed up as that way she would get some energy and fluids. Over the next 18 hours we tried to get her to drink this but the more she drank it, the sicker she became, her temperature was so high that she seemed to be hallucinating and was having fearful screaming fits. We stopped the drinks and went back to plain water. The next day the doctor reluctantly agreed to prescribe stemetil to stop the vomiting and suggested we return to Auckland to be nearer a hospital if it was needed. The medication did work. We later realised that these Raro drinks were full of food colouring.
Over the next few months we settled back to our pattern of broken nights. The doctor did suggest to us that occasionally we should give her Junior Panadol to help her sleep. I told him that I thought she might not be able to have it, as she seemed to vomit it straight back after taking it. His reply was that she was difficult and we should hold her down and make her swallow it. Much to our shame we tried this and found that it did not matter how long we held her and made her keep her mouth shut for she would end up vomiting it back up within 20 minutes. Junior Panadol at this stage had the colouring E102 in it.
The weekend that our youngest daughter was born is one of our worst memories. Jessica had been quite difficult that week and on the Friday night David got up to her in the night as she was vomiting. At the same time I realized I was going to have the baby any minute. So we left her with my parents-in-law and dashed to the hospital. The next day she was still not at all well so David rang the doctor who said give her fluids but as she did not have diarrhoea as well they would not
see her. On Sunday afternoon David carried her into the hospital to see me and I was shocked as she looked all teeth as she was so dehydrated. I found out from my husband that his parents had said yoghurt was good for settling stomachs and given her yoghurt. I begged him to make sure his parents were very strict and careful about food and gave her fluids. My mother-in-law told me they found Jessica in the bathroom with her toothbrush getting water as she was so desperate for fluids and then she was sick afterwards. As happened many times she was vomiting mostly bile as there was nothing left to vomit. Finally on the Monday somebody suggested that she try lemonade ice blocks as a way of getting fluid in slowly enough and that was a big breakthrough.
Six weeks later we left NZ and shifted to Germany where we had some frustrating times with feeding Jessica but also made our biggest breakthrough. For our first year there Jessica's life went on as before - she was always on the go, always hungry but would not eat all sorts of things and was often sick. She was still not sleeping through the nights.
We had awful trouble keeping home help and babysitters as nobody could cope with her at nights or understand her eating patterns. She continued to gain reasonable amounts of weight during this time. By the time she was five she weighed 21 kilos and was still very difficult at nights while her older and younger sister slept calmly. The vomiting was starting to get worse and we were having to eliminate a lot of foods with cream or fat from her diet. She was also refusing to eat any of the sliced breads that could be bought in the supermarkets in Germany.
Christmas 1985 was a nightmare, she had not been well with a nasty cough and started vomiting but did not seem to get better. While she kept some foods down her weight was dropping and over three weeks her weight dropped to 18 kilos and she had vomited 21 days in a row, although she did keep some foods down.
By this stage we were with a new doctor who was very sympathetic to our plight and said that she could not continue like this and agreed that we start looking more deeply into the problems. We did find out that she was allergic to chocolate but as that was something that had been suggested to us by several people and Jessica was not eating it anyway as it made her sick. She eliminated many more obvious things with blood tests and then said that she thought the problem was
additives to which I replied " but we don't eat many additives." We were amazed when we took a closer look at everything and realised how many additives she was getting.
Our doctor first of all put Jessica on an elimination diet and within 2 weeks she was sleeping calmly through the nights. We all used to stand at her bedroom door in wonder and watch her stretched out calmly instead of being the tense little bundle we had had for years. It took no time at all to convince us that additives must have been our problem but I was not sure that I believed that you had to eliminate every additive from children's diets so I asked the doctor how we could find out which ones were the problem.
As our doctor knew of somebody else wanting to test additives for an adult patient of theirs they decided to approach one of the university hospitals and see if they could have capsules made up of different additives to use for testing. Once a week we would take Jessica down to the surgery with an empty stomach and they would feed her a capsule every hour and test pulse, blood pressure etc during the morning. It soon became clear that she showed no alteration in temperature, heart beat etc. and that there were three main causes of her problems.
The day she was given benzoic acid she stopped eating for several days because her tummy felt funny. The same thing occurred with a blue colouring. Two yellow colourings had no effect but tartrazine produced the most interesting reaction. After the first dose she became a little restless and would not play games with us or read. After the second dose she kept on taking her clothes off as well getting even more grumpy. By the time she had a third dose she was running round wildly and throwing things at the walls. We decided that a fourth dose was unnecessary. One of the foods we had noticed that was upsetting her was pre-packaged breads in the German supermarkets. These breads had a long shelf life. We cut these out and bought a bread fresh from the baker in our village. This was a plain loaf that would not keep longer than a day. We never had trouble with bread in NZ.
On reading some information that the doctor gave us we eliminated yoghurt, nutmeg and cinnamon from her diet as well as it was suggested that if she were intolerant of benzoic acid she would also have difficulties with them.
These tests made the most tremendous difference to her life and ours. We now eat many additives that we know she can tolerate. She leads a normal life, keeps healthy and active but sleeps well. Because she had vomited so much over the first few years she was having gall bladder problems and could not tolerate cream, milk fats etc. This is why she vomited so much before they started testing. Once she was on her additive free diet we were able to get her gall bladder back to normal too. Sometimes when we are out she will unknowingly have something she cannot tolerate and she is very quick to notice. There are occasions when two mouthfuls are enough for her to know that she needs to be careful." - Anonymous
"Trying to help my husband to get our new business off the ground in the last twelve months has meant that I have tried to balance on one foot while answering the phone, keeping the kids quiet, educated and entertained while cooking with one hand and cleaning the house with the other. I lost interest in cooking as it was too time consuming. Yes I opted for prepacked, frozen or take away. This as you can imagine was probably the beginning of the end.
My son has always been a problem sleeper, bedwetter, easily angered, always blames others when things go wrong in short impossible to live with. The new school had started to help but then I stopped cooking and everything fell apart. I did not know what to do. I blamed myself for not giving him the time he needed for tutoring (paying someone else is not a financial option). So I started to take a long hard look at myself and decided that I as well as my family needed to start eating better, to exercise more and to spend leisure time together.
The next step was to seek out help from books ... to guide me through the changes I wanted to make. One of the things on my list was a book on nutrition so I stopped at a bookstore. I'm sure that my guardian angle nudged me towards your book "Fed Up". At a glance I knew I would find some answers. I did. Your Rebecca sounds just like my Alex. I thought it was the way we had raised him that we, I, had done something terribly wrong. Scream it from the mountain tops he could have food intolerance. So could Sarah (10 year old) - she has that nasal drip down the back of her throat. Emily (6 Year old) has memory problems like Alex and she constantly chatters on and on and on until I scream for her to stop and they fight all the time.
Well, I purchased your book 22 hours ago and have read it cover to cover. I am going to ease them into the elimination diet over the next week so that they don't get too upset and so that I can diminish my current food stuffs without blowing out our budget. After reading your book and your easy simple recipes I am sure that with this and other life changes that have been set in motion that the light at the end of the tunnel is not as far away as I had thought." - Anonymous
"I have read your book Fed Up and it has proven a godsend to our lives and I can't thank you enough for putting your experiences in print. My daughter would have been expelled last year (1st term Kindergarten) for her aggressive, violent and unruly behaviour. Many times I sat in the principal's office in tears of disbelief as they told me about this horrid monster that was my child - I couldn't understand. GPs, specialists and paediatricians could find nothing wrong. She even attended a behavioural management unit for 20 weeks at the request of her school. Of course no-one wanted to believe that her access to a different range of food that she normally would not be given was at the same time her behaviour went off track. The school had not seen her pre-canteen.
We know that she is intolerant to additives, salicylates and amines and we are living on the range of foods recommended in your book. We have tested some foods and know basically what we can't have but have been very hesitant with the challenges particularly when reactions may occur later when she is in class. School holidays are our windows of opportunities.
The problem we now have is other children sharing food. We are approaching the school today regarding this as she ate a packet of noodles with the chicken flavour sprinkled on top yesterday and then reacted severely to the point of injuring her favourite teacher twice and being suspended for a day. This isn't the first time she has had someone else's food and although my daughter is so good most of the time, temptation is always there and luckily we have been able to pinpoint each time she has taken matters in her own hands and done her own little challenge. From this we seem to have found another problem - other people innocently undermining what we have achieved ... someone shared a packets of lollies and she came home proudly saying that blue is OK, the reaction is all here (pointing to her head). 5pm that night blue was not OK.
... I ran into a friend the other day who I hadn't seen for ages. During the catch up he mentioned the diet they are now on and even though it eliminated processed and natural foods the difference in his eldest's (4yo) behaviour was well worth it. The look of relief on his face was priceless when he realised that I truly did understand and wasn't just nodding my head ("ah, Sue Dengate's Fed Up" I said). I think it has given him even more determination to stick it through." - Alex