MY FAMILY STORY

MY FAMILYS STORY
I have no medical qualifications to advise anyone about allergies and their effect on our health, but I do have a great deal of personal and often painful experience of the subject. My husband Howard, our eldest son Peter and myself are all chronic allergy sufferers and it was only through flashes of intuition, the patience and kind support of our GP, and of course, the skill of our respective allergy specialists, that we have, by stages, got to the roots of our health problems.

I believe that our son Peters health problems began whilst he was still in the womb. At the time I was expecting him, I was working as a baker and confectioner in a small family business in Retford, North Nottinghamshire.

It was 1977, the year of the Queens Silver Jubilee. I was five months pregnant when the orders started rolling in for special gateaux with red, white and blue rosettes made of modelling paste. The colouring was kneaded into the paste by hand and my hands and fingernails were stained a deep navy blue and lurid red. The stains took nearly three weeks to fade and I am ashamed to say that I was greedy enough and stupid enough to eat the gaudily coloured scraps of modelling paste. This was not an isolated incident, I regularly decorated cakes and quite often got my hands stained with food colouring and nibbled on the scraps of paste which were left over without ever giving it a thought.
A childrens allergy specialist told me several years later that such high concentrations of food colourings were probably absorbed into my bloodstream and would have crossed the placental barrier, along with my antibodies, in effect, Peter was sensitised before he was born. There were other things too that I ate on a daily basis thinking that they were good for me and my baby. We made egg custards with eggs bought from the local supermarket, I had at least one a day. I never gave any thought to the egg colour (Tartrazine) that went into the pastry or for that matter what went into the eggs via the feed the hens were given, it wasnt until Peter was a few months old that I suspected the truth.

After Peter was born, he was a very windy baby. He never settled down to sleep for very long. He suffered dreadfully with nappyrash and certain types of washing powder and scented baby cleansers seemed to aggravate the problem. I was breastfeeding him and advised by the district nurse to drink plenty of fluids such as lemon barley water and dilute orange squash or lucozade. Id stopped drinking coffee when I became pregnant because it made me feel sick and Id never drunk tea for the same reason, so dilute squashes seemed like a good idea at the time. I had no idea that traces of colouring and preservatives were getting into my breastmilk. Looking back, theres no wonder the poor child had problems sleeping.

When he did manage to sleep, he would often wake with a start and begin crying and drawing his knees up to his chest, wracked with stomachache. We got through gripe water like it was going out of fashion, but the relief never seemed to last for very long. I sought advice from the local baby clinic only to be informed that, All babies love to yell,dear, and anyway, its good for their lungs!

Our problems began in earnest when Peter was three months old. Hed started teething so I had decided to put him on the bottle, Id had to supplement his feeds with formula milk for a while anyway so it was relatively easy to wean him. The trouble was that his teeth were pressing through blood vessels in his gums and it hurt him to feed. I was advised by the nurse at the clinic to rub Dentinox on his gums and to clean his new teeth with strawberry flavoured toothpaste. Neither of us were concerned that both of these products contained food colourings. In 1977 people were blissfully ignorant of the health and behaviour problems caused by azo dyes, (which are additives used as food colourings) and preservatives. Maurice Hanssen and Jill Marsden hadnt then written E for Additives and raised public awareness of allergy problems and so, as it was, Peters stomach cramps got worse.
The family doctor said it was probably three month colic. I pointed out to him that Peter had been like this ever since he was born, but that he seemed to be getting worse. The doctor prescribed Infant Gaviscon to be taken before each feed. It helped for a while but didnt get to the root of the problem.

Our local health visitor called and suggested he should be trying different foods each day, such as unsalted mashed potato, banana, baby rice and soft boiled eggs. (Nowadays, a paediatric dietician would probably not recommend trying a baby with eggs until the child was at least nine months old). Peter was fine with the first three foods, but when I gave him a soft boiled egg to try, some of it dribbled down his chin and he gulped it down with a shudder. He began to cry and was violently sick. I was horrified to see that everywhere the egg had dribbled on his chin there were huge blisters. He looked as though hed been scalded. I bundled him into his pram and rushed down to the clinic. The nurse on duty advised me not to give him egg again for a few weeks as hed had an allergic reaction to it.

I stared dumbly at a poster on the wall behind her. It was a colourful parody of a woman whos face and body were made up of a variety of fruits and vegetables, cream cakes and hamburgers. Underneath was the stark message You are what you eat. I have found out over the years that this is only partly true, the message should be, You are what you eat, drink and breathe.

I waited several weeks before trying Peter with egg again but when I did his reaction was the same, blistered skin, projectile vomiting and crying unconsolably.

One day Peter and I paid an unexpected visit to my parents. They wanted us to stay for lunch but all they had to offer Peter were homemade baps cut into soldiers, still warm from the oven, and some free range bantam eggs from a local smallholding. These were genuinely free range from bantam hens that were fed on corn and grits, bran mash and the odd juicy worm or two that they found as they wandered around the yard. I was reluctant to let my mother give them to Peter to say the least, but I was astounded to see him devour two bantam eggs with obvious enjoyment. Even though the egg white dribbled down his chin, there was no blistering not even slight redness! I felt elated as we went home on the bus.

A few days later I tried him again with eggs from the local supermarket. Within seconds of eating it, the skin was blistering on his chin and he was violently sick before bursting into tears. That was the last time I ever bought eggs from there to give to my son. I have since learnt that animal feed merchants take colour charts with them when they visit egg producers so that they can choose what shade of yellow they want the yolk to be, they then include additives to the feed and mix it accordingly.
When Peter was two and a half years old we moved to North Yorkshire. We had brought with us an old sheepskin hearth rug which Peter began to use as a sort of comfort blanket. He loved to curl up on it in front of the fire and go to sleep. He probably found that it reminded him of his first home and his first friends and so we just went along with him. Peter had also just been given a feather pillow and feather quilt by his grandad, To keep him cosy and warm. Neither Howard nor myself had ever heard of house dust mites or the devastating effects that they could have on you health, once you became sensitised to them. It was several years before we finally got to the root causes of Peters health problems.

When he started school, the wheezy chest hed had for a while became much worse. He was taunted and bullied because hed developed a squint and needed glasses and eye patches. He was often weepy and miserable with a constant runny nose and watery eyes. He would regularly wake up in the night crying with pains in his legs for no apparent reason. The doctor we had at the time thought they might be growing pains but they always coincided with his wheezy chest which was eventually diagnosed as asthma. He also developed eczema on the insides of his elbows and the backs of his knees. On several occasions when we had to call out the doctor, Peters asthma was so bad he would slip into unconsciousness and delirium. Our GP thought he probably had a re-occurring flu virus for his symptoms to be so severe and prescribed antibiotics to no avail. I was worried sick. My sister Sheila died of asthma at five and a half years of age. His attacks would often start with temper tantrums, flushed cheeks, vomiting, or a hacking cough, then wheezing, loss of consciousness and delirium.
One of Howards work colleagues saw an article in a newspaper about the work of two allergy specialists, one of whom is a paediatrition, who were both based at Airedale General Hospital near Keighley, West Yorkshire. By now wed moved house again and our new GP was very supportive and understanding and he managed to get Peter referred to the paediatric allergy specialist. We were amazed to find her office piled high with case files on children with allergy problems of various sorts. She cheerfully informed us that only the previous day a small boy, who had been as good as gold all morning, was given a banana as a challenge food and within less than ten minutes of eating it had gone totally berserk and literally set about wrecking her office. Hed thrown all her files on the floor, and then began tossing papers everywhere, before jumping all over her desk. She and the dietician had spent hours sorting things out again.

The Doctor put Peter on an exclusion diet and we had to re- introduce one food at a time. Interestingly, whilst on the exclusion diet, which consisted of Rice Krispies without milk (not even soya milk was allowed on them), lamb, potatoes, carrots, celery and pears for dessert, with gluten free bread and biscuits, Ketovite vitamin and mineral supplements and not much else, Peter actually put on nearly three quarters of a stone in weight. (Hed always been painfully thin, despite having a good appetite).

It was a slow and painstaking process. We had to make charts and write down everything he ate and drank and note down his reactions. It took the best part of six months to find out all his allergies. He was allergic to :- house dust mites, feathers, food colourings, preservatives, ie, (sodium metabisulphite, sodium benzoate, benzoic acid, potassium benzoate and sulphur dioxide,) antioxidents, ie, (Butylated Hydroxyanisol and Butylated Hydroxytoluene) artificial sweeteners, ie, (aspartame, asculfame, and saccharin,) artificial flavourings which contained sodium benzoate as the preservative, (although he could tolerate those which were preserved with isopropyl alcohol,) milk and dairy products, eggs, tea and coffee and cigarette smoke, (very severe reaction to this).

Both the specialist and her dietician were very kind and supportive and stressed that if we had any problems we should ring them straight away. I was amazed at their vast knowledge of food additives and painfully aware that my own knowledge of the subject, (gained on a four year City & Guilds Course,) was nearly twenty years out of date.

At the end of the six month period, Peters rhinitis had cleared up. As well as changes to his diet, wed changed his feather quilt and pillow for some dustmite proof bedding, developed especially for allergy suffers. He had a mattress cover to seal in the dust mites and new lino on the floor instead of carpet. I damp dusted every day and we bought an air cleaner. The pains in his legs disappeared, as did the eczema and his squint and he doesnt need glasses anymore.

Now several years later, my wheezy little invalid, who could barely swim a length at our local baths, is a strapping six feet two inches tall and he can easily swim thirty lengths straight off, although he complains that the chlorinated water makes his nose run.

He now has lots of friends and only needs his inhaler if he goes into a smokey pub. Its years since he had a severe asthma attack, thank goodness.

Im thankful that David, our younger son, doesnt suffer from allergies to any serious extent. He is three and a half years younger than Peter and I took great care when I was expecting him not to eat or drink any of the things that I knew had sensitised Peter. David has always been a placid boy. Hes quiet, thoughtful and intelligent with a wonderful sense of humour. He rarely gets colds or flu and is a popular lad with a wide circle of friends. He even manages to be popular with his course tutors!

I must stress at this point that under no circumstances should a parent attempt to try an exclusion diet on their child without support from their doctor and referral through him to a childrens allergy specialist who is working closely with a qualified dietician with a deep understanding of allergy problems in children.

*******

My husband Howards story is in some ways similar to Peters. And I will let him tell it himself.
As a little boy I'd had a squint which three operations only made worse.
Even as a small child Id begun to realise that certain foods, such as eggs, disagreed with me and the smell of my mothers perfume and cigarettes made me ill.
As I grew up my body was getting regular exposure to cigarette smoke from family and friends and regular exposure to volatile organic chemicals through my first job in a chemical company laboratory. I suffered dermatitis on contact with certain chemicals.
In my early twenties my life was shaped when I met Joyce, my co-author and wife. I was living in a batchelor flat, cooking for myself as my parents had bought a shop and moved to another district.

In my twenties, I went through good times of getting married and bad times as Mum developed Multiple Sclerosis, which eventually killed her.

Joyce and I were highly stressed as we moved in with Mum and Dad to help them with their business. I was now working full time in a paper mill. There was less exposure to chemicals but exposure to heat, noise, lots of tea and coffee, and lots of cigarette smoke.

After Mums death, the business was sold and we bought our first married home. Stress continued at work until one day, after lunch, I collapsed with severe stomach pains and heat exhaustion and I was rushed into hospital. The doctors could not find anything wrong and after a few days I was back at work.

This episode did not stop me from changing jobs back to my first chemical industry employer, in a junior management position. Fortunately, there was little exposure to chemicals, but the job did bring exposure to stress, cigarette smoke, travel and exhaust fumes.
Two house moves and two children later, I was smitten with a form of glandular fever. Foolishly, I decided to work on. Very, very slowly, after weeks and months, my health seemed to get better, but I was getting severe headaches on Saturdays, when we regularly bought Chinese take away meals after our weekend shopping trips. Mono Sodium Glutamate is a common ingredient in Chinese restaurant and take away cuisine and many people react to it, although I didnt know it at the time. I also got severe nausea after eating jam and bread. My reaction was to cut wheat out of my diet, which seemed to make me better.

Soon after this, Dad died. I went through a bad patch and my weight dropped. Eventually I got back to what seemed normal. To boost my health, I took the kids swimming quite often and regularly exposed myself to chlorine. Memories come back of occasional severe stomach pains, discomfort in the back passage and frequent trips to the toilet in the night.

Things came to a head on a business trip to South Africa in 1993. On the way there I noticed a mouth abscess which I dismissed as an ulcer. A combination of heat, stress, chlorine, from the hotel swimming pool, tiredness and the wrong food hit me. I was rushed to hospital with excruciating stomach pain and nausea, (still not knowing what was wrong or that I had severe allergies). After three days of being starved and rehydrated I was OK to travel home, but remained in a bad way until the abscess was removed and then rallied. Investigations at my local hospital did not reveal anything. Joyces strong suspicion that the cause was allergies was dismissed by the specialist. Although he agreed to do a RAST test which proved negative.
Having rallied, a holiday at the seaside was just the tonic we needed. Great Yarmouth proved less beneficial than wed hoped. Acute stomach pains and nausea started all over again and I was rushed into Hospital. As before, nothing was organically wrong and after starvation and re-hydration I was OK.

I started keeping a diary of my symptoms and experimented with my diet. Hardly a day went by without me having problems. No foods agreed with me. My legs swelled up after Christmas and my weight was dropping. Thankfully, at Joyces insistence, I was referred to an allergy specialist, (who was at that time based at Airedale General Hospital, where our son Peter went for his treatment.) It was actually his colleague, who saw me. She has written many papers about allergies, and is a leading expert in her own right. After a two hour consultation I was so emotional. She believed me and confirmed that I did have severe food allergies. I needed urgent radical treatment and advised that I should go on the Stone Age Diet immediately. She also said I should be admitted to Airedale Allergy Centre as an in-patient as soon as possible.

It became obvious that the NHS was not going to finance the treatment. Fortunately, an angel came to my rescue and I got quick admission.

I had no idea what to expect. The treatment was extreme. Starvation for four days, (It should have been five but I was too weak.) Testing of chemicals, inhalants and tap water. I was allergic to most things, including tap water! (I had drunk lots of tap water for years.) Then the food testing started. The one that really stays in the mind was the test for beetroot, (simulating beet sugar.) The stomach pain was unbearable. I pleaded for morphine. It was not possible to give it to me, somehow, I got through it and found my most potent enemy. During my three week stay, another thirty six food enemies were identified. It would be nigh on impossible to live without the thirty seven foods. Fortunately the treatment included the development of a Specific Neutralising Vaccine which literally switches off the allergic reaction and allows me to eat all the foods on a four day rotation. A separate vaccine protects me against chlorine and cigarette fumes. A third vaccine protects me against moulds and spores.

Perhaps even more importantly, the treatment has taught me about myself, my body and how to live a healthy active life. It also taught me that my experience could help others. I have found that allergies, eczema, migraine, asthma and other symptoms can be related. They can be caused by food allergy, food intolerance, chemical intolerance, and environmental factors. On returning home it was time to practice what the doctors and their staff preached.

Little things changed first. Bleach was banned. Perfumes were removed. Simple Soap, fragrance free shampoo and expensive unperfumed washing powder were adopted. Joyce filtered the air in the house with an air cleaner and the kitchen cooker hood. The next step was to hot wash the pillows and duvet at the launderette, (this was stressful as the launderette was full of cigarette smoke.) We got dust mite proof mattress and pillow covers. (Available at many leading highstreet stores.)

Having done all the simple things, we moved on to more expensive items:- A plumbed in water filter, (from the recommended list of suppliers issued by the clinic). An dehumidifier with air filter. (This reduces the dustmite, mould and spore populations in the house.) Later we bought a vacuum cleaner which was developed especially for allergy sufferers and was again from a list of recommended ones from the allergy centre, (we have not included vacuum cleaners in the list of useful suppliers at the end of the book because technology is improving all the time and there are now a great many vacuum cleaners fitted with HEPA filters to aid allergy sufferers).

Of course as well as environment, diet became a major consideration. I had to follow the four day rotation devised for me at Airedale and also introduce new foods. It was stressed that oily fish would be beneficial to me. My specific neutralising vaccines were taken as recommended and I started to improve.

I have never been rushed into hospital since and have only had one serious bout of pain requiring morphine from the doctor. That was brought about by intense stress at work and happened nearly three years ago. I look after myself and still follow the rotation. I take one daily multivitamin and mineral tablet, three 1000mg Evening Primrose Oil capsules and two Cod Liver Oil capsules daily. Since my time at the clinic, I have not had one day off work through illness. My weight is around thirteen stones in contrast to just above ten and a half stones after Airedale. My quality of life is much better and all the credit must go to Airedale Allergy Centre.

Joyce takes up the story again:-
I think my own allergy problems had been creeping up on me for years. When I became pregnant with Peter, I suddenly found that I couldnt bear the taste of coffee and that the smell of it made me feel sick, (as did broad beans and fried onions). Id never been a tea drinker. As a child it used to make me feel sick, but Id always loved the taste of coffee, even though it gave me stomachache.
As I grew older I suppose I must have developed a tolerance for it, but when I became pregnant that tolerance broke down and my system rebelled. I didnt drink coffee much until several years later. After David was born, people would invite me round for coffee with the kids and it seemed rude not to accept, so I began drinking it again. Soon I was hooked on caffeine and drinking it by the gallon. I began to suffer blinding migraine headaches that lasted up to ten days, at a time. I would be permanently exhausted, irritable and depressed. The only thing that seemed to give me any relief was my next cup of coffee, my next fix! I tried Migraleve, Codeine and even the Distalgesics Id been prescribed for a slipped disc but nothing seemed to work. In addition to the migraines, Id developed pains down my neck and shoulders and into my arms. My hands were aching and tingling with pins and needles. It was soon after Id realized that Peter was allergic to colourings and preservatives that I decided to take stock of my own health problems. I didnt need to be a genius to recognise that my headaches had started when I re-introduced coffee into my diet, so I tried switching to decaffeinated but I felt just as bad, so stopped drinking it altogether. My headaches disappeared, but I still felt tired and drained a lot of the time and had difficulty concentrating on anything for very long. I suffered a lot with backache and pains down my sciatic nerves, which I assumed were caused by the disc injury Id incurred a few years earlier. I spent a fortune at the local osteopaths trying to put it right. To cut a long story short, whilst Howard was in Airedale Allergy Clinic, he discussed my health problems with the doctor there who recommended that I should be referred to a clinic in York.

On my first visit to the York clinic, I had to fill in a questionnaire, listing all my symptoms and any foods which I already knew I was sensitive to. The doctor explained this would save time during the first consultation and that he had to be sure I really was an allergy sufferer before he would commit me to long term treatment which may not have been appropriate for me. This way, I would not be wasting his time and my money.

He recommended that I had a cytotoxic test, ( a form of blood test) to determine the full extent of my allergy problems, followed later by an Enzyme Potentiated Densitisation injection, EPD for short. (See appendix.)

I was shocked when I received my own test results in the post the morning after my blood test. The list was three pages long and the results were numbered, 0= no reaction, 1= mild reaction, 2= moderate reaction, 3= severe reaction.

I was severely allergic to white flour, eggs, milk and dairy products, citrus fruits and berries such as raspberries, blackberries etc, yeast, haricot beans, tomatoes, hazelnuts, tea and coffee and moderately allergic to chlorine, housedust mites, car exhaust fumes, mould spores, chocolate etc.

I had another consultation with the doctor to discuss my results and have my first EPD.

He advised my to avoid all the foods on my severe list and to rotate all the other foods on a four day basis. (By this time Howard and I had already worked out a four day rotation diet for him to follow after his treatment at Airedale Allergy Centre, roughly based on the Stone-Age Diet and so it was relatively easy for me to adapt it for my own needs.) Once wed got the instructions for my diet sorted out it was time for my EPD.

This was administered as an intradermal injection. In this, the needle was introduced in between the layers of skin on my forearm, to produce a weal which looked rather like a large insect bite. Indeed it certainly felt like a bee sting for the first few seconds. However,the pain quickly subsided and I was sent back to the waiting room for ten minutes, just to make sure that the EPD had taken properly.

I have to say that after my first one, I was spark out on the sofa for three days with a thumping headache and I felt totally exhausted and unable to think clearly but soon after that I began to experience a vitality and mental clarity I hadnt had for a long time. I stripped and redecorated our bedroom and gave the house a spring clean from top to bottom. But by degrees, my new found energy began to tail off and I was well ready for my next injection six weeks later.

I now have an E.P.D. once every six months, which will eventually stretch to once a year. I can truthfully say I feel much better, although I do still get headaches occasionally, especially if I get exposed to cigarette smoke, which Ive always had difficulty coping with. (EPD cannot desensitise a person to this unfortunately.)

At one time a trip to a city such as Leeds would leave me totally exhausted for two or three days, mainly due to air pollution, but the doctor discovered that my liver wasnt working properly and was failing to produce the enzyme needed to break down sulphites into harmless sulphates. This caused fluid retention among other things. I was put on a course of tablets to stimulate my liver into making the necessary enzyme, and hypoallergenic multivitamin supplements, for around eighteen months before the problem was rectified. I still have problems with cigarette smoke and traffic fumes but to nowhere near the same degree, thank goodness. I still take the hypoallergenic vitamin and mineral supplements everyday and they help a great deal. Im not chronically tired anymore, and I feel generally able to cope with life. Until recently I worked full-time in an office in Leeds, something that I would never have contemplated a few years ago, and I could happily delve into the basement archives, (which date back to 1947 and are quite musty) without any reaction to the clouds of dust which at one time would have left me feeling ill for days!