by Sue Dengate

During the first three weeks of her life, baby Emily Ridden slept most of the time. She rarely cried, sometimes having to be woken for feeds and her weight gain was good. Then Emily started to have wakeful times during the night. Feeling tired, her mother Cindy relied on up to five cans of carbonated lemon drinks a day to give her energy. Emily's wakeful periods increased until soon she was sleeping only about eight hours total in a day. 'I kept trying to feed her to sleep but even if I could get her to sleep she would wake as soon as I tried to move her,' recalls her mother.

Cindy's lemon drinks contained an artificial yellow colour called tartrazine (code 102). Six years ago, medical researchers discovered that tartrazine can cause irritability, restlessness, inattention, difficulty settling to sleep and frequent night waking (Rowe KS and Rowe KL 1994). The more you have, the more likely you are to be affected. Young children, and especially babies, are the most vulnerable to the effects of food additives because, dose for weight, they take in greater amounts than adults. Food additives can be transmitted through breastmilk (Clarke L et al 1996). Unknown to Cindy, the soft drinks were making her baby restless and wakeful.

Cindy also noticed that Emily's bowel motions had become dark and frothy, 'like cappuccino'. This can also be an effect of food chemicals. Altogether, 50 additives (see box) and some natural chemicals have been associated with problems including stomach-aches, bloating, diarrhoea, reflux, itchy skin rashes, migraines, headaches, asthma, depression, anxiety, unexplained tiredness, forgetfulness, hyperactivity and recurrent mouth ulcers. No child reacts to food colouring alone, and it was to take Cindy the next 15 months to find out exactly which foods affected her daughter.

In the meantime, Cindy's doctor suggested that sugar might be contributing to Emily's 'cappuccino poos', so Cindy cut out the soft drinks. Emily improved, although she still woke frequently at night and never slept for more than 30 minutes at a time during the day.

Introduction of solids at nearly five months started a new round of problems. For the first time, Cindy heard her baby really scream. Episodes, which lasted for hours, were accompanied by back-arching. Cindy tried the usual foods, introduced one at a time - rice cereal, potato, pumpkin, apple, pear, chicken, lamb and vanilla yoghurt. During this time Emily was restless and woke often with occasional bouts of screaming. The night after her first mouthful of broccoli, Emily slept only ten minutes at a time, tossing and turning, screaming and arching her back all night.

Child health nurses, doctors and paediatricians all agreed that Emily was a healthy baby. Settling techniques learnt at a sleep management course helped but were not enough. If Emily was feeding well she would sleep well. Sometimes she would arch back off the breast and constantly wriggle and fidget while feeding. At these times she would sleep badly. There was no problem with supply or let down. Medication for reflux made Emily worse. Cindy wondered if her baby's behaviour might be caused by stomach aches associated with certain foods.

During the next six desperate months, Cindy gradually identified a number of seemingly unrelated foods eaten either by herself or Emily that could cause problems. But it didn't made sense. As well as medications containing artificial colours or flavours, Emily seemed to be affected by a number of healthy foods eaten either by her or her mother. Tomatoes and broccoli were the worst. Eventually Cindy found a doctor who could interpret these reactions. Broccoli and tomatoes are very high in a number of food chemicals including salicylates. Cindy Ridden's daughter is one of an estimated ten per cent of the population who react to these natural chemicals.

Salicylates (sal-i-sill-ates) are one of many chemicals that all plants have developed to protect themselves. Most people are able to detoxify many of these poisonous chemicals. However, some common foods contain enough of these chemicals to cause reactions in sensitive people. Intolerance to aspirin, which is a form of salicylate, is well recognised. Yet most people are unaware that significant amounts of salicylates occur naturally in foods such as fruits, fruit juices, vegetables, herbs, spices, nuts, wines, tea and coffee. According to researchers at Sydney's Royal Prince Alfred Hospital, an average Australian diet may contain up to 100 mg of natural salicylate per day (Swain AR et al 1985). This quantity can easily trigger food intolerance symptoms in sensitive people. Salicylate intolerance is usually difficult to identify since salicylates are eaten so frequently.

Reactions to food chemicals are not true allergic reactions, so they cannot be confirmed by allergy testing. The only way to be certain of which food chemicals affect you is to try a strict elimination diet for three weeks, followed by careful reintroduction, or challenges, of certain food chemicals. This is to make sure that healthy foods are not avoided unnecessarily. Cindy was referred to a dietitian who started them both on the Simplified Elimination Diet from Royal Prince Alfred Hospital. When she and Emily began the elimination diet, Emily improved almost immediately.

Three days later, Emily worsened again. By now, Cindy had read my book Fed Up and, discouraged, she phoned me from Perth. We had a lot to talk about. Seventeen years ago, I lived through the same experiences with my daughter. The elimination diet was not available then. Food intolerance symptoms can change with age and for years we lived with Rebecca's reactions, starting with colic, restlessness and wakefulness and progressing to oppositional defiance, learning difficulties and eventually a diagnosis of attention deficit disorder. Her younger brother suffered from headaches, stomach aches and skin rashes. When Rebecca was 11, we all tried the elimination diet, and everyone in the family improved in different ways. Rebecca sticks to her diet strictly and is now in her final year of school, happy and successful.

I have talked to thousands of parents who have struggled with the effects of food on their children's health or behaviour. I have experienced myself, and seen in others, that mothers who are using the elimination diet need support. They need information and child-friendly recipes, and need to be able check on little details because even one small mistake a day can ruin the effects of the diet. To help with this, I wrote Fed Up as a guide and support manual for parents, and established the Food Intolerance Network of Australia. We now have members from 12 countries. We publish regular newsletters, available free by email. These are displayed on the website with reader feedback and new information. Readers are welcome to ask questions by email and there is an email discussion group. Several food intolerance support groups have been established around Australia. Information about the elimination diet for management of food intolerance in children and adults was only published in the Australian Journal of Nutrition and Dietetics in 1996, so it is quite new.

If you suspect food intolerance in your breastfeeding baby, you might like to first try avoiding additives (see list of additives to avoid). Some people find that cutting down is enough. If you still have problems, especially if there are any relatives with food intolerance symptoms like migraine, then you might want to try the elimination diet. It is essential to be supervised by a dietitian. Your dietitian will give you two booklets from the Royal Prince Alfred Hospital. If your dietitian is supportive but inexperienced, she can refer your questions to the RPAH Allergy Unit, a group that acts as a resource for dietitians all over Australia.

Everyone is different and although some children improve within hours of starting the elimination diet, others can take longer. If there is no improvement at all within a week it is worth checking for mistakes with your dietitian. Sometime in the first two weeks, often on days four and five, symptoms worsen. These are withdrawal symptoms. These withdrawal symptoms are a good sign that the diet will work.

Eight weeks later, Cindy reports that Emily is waking only once a night. Emily can tolerate a wide range of additive-free foods including permitted fruit, vegetables, wheat, egg and sugar, but not dairy foods or salicylates. She's more settled and content than ever despite teething and as Cindy says, 'When she's happy, I'm happy'. Cindy's only regret is that she didn't know right at the beginning about food chemicals that could affect her baby.

References
Rowe KS and KL. Synthetic food colouring and behaviour: a dose-controlled, repeated measures study. J Pediatr 1994;125:691-8.

Swain AR, Dutton SP and Truswell AS. Salicylates in foods. J Am Diet Assoc 1985; 85:950-60.

Clarke L, McQueen J, Samild A and Swain A, The dietary management of food allergy and food intolerance in chidlren and adults. Aust J Nutr Diet 1996; 53(3):89-94.

Thank you so much for the "Restless Babies" article. I recommended it to a distraught mum via a breastfeeding support bulletin board. She was shocked to discover that tartrazine was hiding in many 'healthy' foods. Within just 2 days of changing her diet, her baby had a normal sleeping pattern. Not only that, but her 2 year old 'spirited kid' is much calmer, and has stopped throwing incessant tantrums.

Other board members have benefited from the article, including one mum who recognised the frothy 'cappuccino' poops mentioned. She had asked her pediatrician about it, but he had no idea what caused it. Changing her diet to exclude tartrazine cured both the frothy poops and the night waking.

Here are the foods that the mother in the USA was surprised to find tartrazine in: potato bread, yoghurt, canned soup, margarine and cough syrup. She was also eating, and feeding her 2 year old, cakes, cake mixes, donuts, muffins, snack cakes, ice-cream, cookies and crackers, drink mixes, lemonade, pudding mix, boxed meals, rice and pasta dishes, cheesecake, butterscotch candy, jelly and chips all containing tartrazine.

[152] The first 19 months - Dani's diary (April 2002) in Stories 3

Birth - Chris is born nearly 2 months early. We stay in hospital until Chris is a month old. Staff regularly comment on the huge amount of crying he does and his restlessness. They put this down to a consequence of being prem and assure me he will be more normal and settled by the time he was due to be born.

2 mths - Chris doesn't settle - he gets worse, screaming and crying all the time all day and night. Regularly passes out from lack of oxygen. We try every colic remedy available - nothing helps. I even try giving him a range of formulas on the doctor's advice - none of these make any difference so after a few day on each I go back to breastfeeding.

2 1/2 mths - we notice Chris has a serious hernia and needs an emergency operation - his stomach is split right across and the muscles are trapping the arteries going to the testes - we hope no permanent damage is done - staff and doctors tell me it was probably caused as a result of the bad colic he has and him pushing in pain all the time. They assure me he will be a lot better when his stomach heals and should settle down - a bit of a contradiction but I go home and hope.

3 1/2 mths - I am totally exhausted and can not cope at all anymore - sick of the lack of support and everybody telling me that babies cry and I should just get over it. They all think I am a hypochondriac. I start colouring behaviour charts showing his screaming/crying/grizzling and sleep. I now know I am not exaggerating or pulling things out of proportion - the charts show he is worse than I thought. He is crying and screaming for about 18 hours out of 24. When he does sleep out of exhaustion it will be for one or two hours only - generally throughout the night. He rarely sleeps during daylight hours.

I ring my doctor in desperation. I am afraid I might hurt Chris if I don't get some sleep soon and get him sorted out. My doctor admits us to hospital. The staff take over Chris and I get to sleep. Staff are amazed at the amount Chris screams - at first they think it is just because he is away from me and home but I assure them he is the same at home. His crying continues non stop even after being in hospital over a week and in my arms a lot of the time. The doctor suggests we try the elimination diet. We see our local dietitian. I start the diet. The dietitian suggests we don't give Chris any solids for a while. I read somewhere that he shouldn't get them until he is about 7 to 8 months old.

4 1/2 mths Chris is getting a lot better. He isn't screaming near as much though is still crying a fair bit. We really notice it when I eat anything on the no go list - we have to cope with his screaming within 24 hours.

Chris's diarrhea is nowhere near as constant. He is now sleeping for 4 to 5 hour blocks at night and settling quickly after a feed and change. His body language now shows more tiredness rather than pain symptoms when he is upset. His reflux has disappeared.

5 1/2 mths My behaviour charts show that Chris is improving a lot. He is now crying more than screaming. He is slowly getting over all withdrawal symptoms of the many chemicals in the foods that I was eating that were affecting him. I still can't get him to sleep during the day. (The diet is not as effective as it should be because I am making salicylate mistakes like drinking way too much lemonade and eating lots of carrots and pumpkin - but I don't find that out for another 10 months.)

7 1/2 mths We start using management strategies to try to get Chris to sleep during the day. Our doctor thinks he can't sleep as he doesn't know how and is not in the habit. We succeed after a week and now Chris is sleeping for 2 hours in the morning and afternoon. We also introduce some solid foods. Chris's crying and grizzling improves hugely. He is now actually appearing to be really happy sometimes.

12 mths Chris weans himself and has been on Neocate ever since - other formulas such as soy cause instant unpleasant reactions - back to no sleep and crying a lot.

14 mths Chris goes off all carrots and pumpkin - makes it really hard for me to find foods to get him to eat as he eats a huge amount of each of these. We notice a big change in Chris - he stops grizzling altogether and is suddenly really easy to manage. He is a lot more agreeable!! Have a look through my books and discover that pumpkin and carrot are moderate in salicylates - I thought they were low!! No wonder he wasn't 100%. He was obviously getting too many salicylates!

19 mths Chris is now fantastic. We are really enjoying him. He reacts to all the things avoided on the elimination diet still so it is not much fun when we try challenges. We really pay for it - he reacts differently with different chemicals. Salicylates, preservatives and amines make him scream in pain and he gets diarrhea. Preservative 282 in bread is by far the worst - within 3 hours Chris is screaming in agony and has chronic diarrhea. When I was breastfeeding and ate 282 he would react within 12 hours. Colours make him really hyperactive, uncontrollable and he ends up getting hurt. - Dani Hewton, WA

[151] "We were doomed from the start when you look back on it" - Rita's baby (April 2002) in Stories 3

We were doomed from the start when you look back on it.

I grew up on the Great Lakes in Canada. My father worked at Allied Chemical (located on the water) for 20 odd years. We ate fish that he caught in the Lakes two or three times a week. I remember tumours being common in these fish in the latter days. I do wonder what effect living in this environment and eating the fish has had on the situation I am presently in.

I used to be a hairstylist, but had to give it up due to reactions to colours, perms, allergy to latex gloves and sensitivity to customers' perfumes. I also have hayfever. My husband has asthma and seasonal allergies and his whole family has asthma.

Then an early childcare nurse lent me a copy of Fed Up and sent me to a dietitian. I immediately started on the elimination diet. My baby calmed down in the beginning, but it wasn't a cure all. I was to the point of just eating rice, chicken and egg and trying to keep my milk supply up to breastfeed. When my baby started losing weight we went to RPAH and started on Neocate. It took a few weeks to wean her but once she was feeling better she accepted it.

Once she was settled we tried to slowly introduce foods from about 6 or 7 months. Except for a small amount of potato and chicken she reacted terribly to everything. She would wake all through the night screaming, refuse a nap and scream all day, refuse her formula and food in general. She was irritable, had loose bowels several times a day, and would be very aggressive.

I also try to stay away from all chemicals in the house for cleaning. She has had terrible reactions to paint fumes in the early days when I didn't realize how sensitive she was. We were trying to renovate our house, that's on hold for a long while.

I had never heard of this before. Allergies to nuts and things yes, but food intolerance and everything that goes along with it, no.

- Rita Mallet, NSW

[004] Daniel's story: severe colic and reflux (June 1999) in Stories 1

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 this 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 acidic 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 tasks 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 Daniel 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.