Allergies and Intolerances – How Complicated

Allergy kid is 14 this year and I write this with thirteen years experience dealing with allergies explaining how complicated this subject is, maybe it explains why it’s so misunderstood.  I myself have intolerance to dairy and rye and my oldest daughter is intolerant to dairy and we have a family history of dairy allergies that we know of, going back to my Great-Grandmother born around 1912.

Before writing about allergies in general I’ll start by telling the story of my daughter as her story highlights well the complexity of allergies and intolerances.

I’ve written about my middle daughter, the one I refer to as allergy kid, under the Kids Page, describing the difficulties of not having her properly diagnosed until she was 8 months old, when she was finally admitted by Great Ormond Street Children’s Hospital for treatment.

Allergy kid was born with multiple food allergies and because she was breastfed I didn’t know this until the day I tried to feed her solid food about 4 months old, baby rice with formula milk.  I fed her a spoonful of the baby mixture and within minutes her lips swelled up to a horrific size, distorting her face and frightening the hell out of me.

I knew allergy kid suffered with more food allergies but back then, nearly 14 years ago, it was difficult to get her Paediatric Consultant to take it seriously.  Her baby’s body covered with eczema was seen as nuisance to be treated with E45 cream, something to be put up with and tolerated.

We went through hell as a family, two hours a night sleep, taking turns to be up with her to stop her from scratching and breaking her skin making it bleed and cry with pain.

Looking at the photos of her as a baby I remember how she use to have her hands covered to try and stop her from scratching but that never worked, she still rubbed her skin so hard breaking it.  Today she has a couple of scars on her face from the scratching.

We lived in a zombie state for months, I took trips to find alternatives and we spent money on alternative treatments but treating her severe eczema was never going to solve the problem.

I knew ultimately the only solution was to have her diagnosed by the allergy clinic at Great Ormond Street to find out what foods were causing this.  In order to get there we needed to be referred and my daughter’s Consultant was stopping us, telling my husband I was “being too demanding”  that my daughter’s situation wasn’t life threatening warranting a special referral.

One day after crying with despair changing yet another babygrow covered in her blood I snapped.  I booked to see my GP and said, “If you don’t refer us to Great Ormond Street I’m leaving my baby here because we’re in danger of harming her through lack of sleep, she’ll be the tragic story you’ll read about in the Evening Standard…we can not cope any longer, I’ve had enough of changing her bloody clothes”.  Thank the mercy of my then GP, she referred us through the local hospital to Great Ormond Street straight away, within 3 days my daughter was admitted to that most wonderful institution, the best children’s hospital in the world.

I love that place, it was the beginning of putting my baby back to normal, making her smile once more, giving back her freedom to play again and develop as babies should.  The senior Registrar on seeing my baby asked if photos could be taken for hospital records, my daughter was one of three worst cases they had admitted in the last year.

Allergy Kid Born With Multiple Food Allergies

My daughter was diagnosed with allergies to:  Dairy – Fish – Eggs – Nuts – Sesame – Bananas.

She was put on oral steroids for two years and every night we had to bandage her up like a mummy including a balaclava, in which I had to cut out a hole for her eyes, nose and mouth. This bandaging was not easy to do every night but allowed her to sleep soundly for the first time in her life.  She was put on Neocate a synthetically made dairy alternative, an animo acid-based product where the proteins are broken down singularly.

It was easy to control her diet while she very young but it was hard for her in social occasions, going to parties and never being able to eat the food there or able to eat birthday cake.  We worked around it and I would create a rice-crispy birthday cake for her celebrations.  There were times over the years as she became more aware of her differences when she would sob her heart out, asking me why she had to be different to other kids?

As my daughter has grown and gained more independence it has been a challenge for her and a huge worry for me.  I have my heart in my throat until I hear her return home safely.

Being on oral steroids gave her an abnormal large face, chubby cheeks that everyone wanted to pinch.

At 10 Years Old Things Worsen

My daughter’s allergies going by statistics should have improved by the age of 10, maybe not the severe ones like milk, fish or nuts but the others, that’s what the figures show.

My daughter wasn’t so lucky, at the age of 10 she started having epilepsy fits and around the same time we discovered an increase of allergies and additional intolerances she had to content with.

Her Allergy List Grew

Allergy kid is now also allergic to: Beans – Lentils – Peas.  Intolerant to: Soya & Corn.  Many foods we also avoid.

I use to make soups with beans but one day when making black bean soup she complained her throat felt “fuzzy”, it’s the description she always gives when a food doesn’t feel right, a reaction at the back of her throat.

The pea allergy was a really hard one to discover because she never ate peas and would always push them aside on her plate.  I never knew she had a problem with them until tracking down why she was feeling so ill over a period of time.  Tracing back I realised it was the little sausages from Marks & Spencer she use to snack on and the chicken slices for sandwich fillings that contained pea starch, it took a while to connect the two.

When she was about 4 or 5 years of age her allergy treatment was transferred to St Mary’s Hospital and there the Consultant, Dr Cox, told us to stay away from family of foods, we were also told to stay away from exotic fruits and things like avocado.  For this reason because there is a problem with beans, lentils, and soya we stay away from the legume family, this allergy is common among kids with severe problems to nuts.

She use to tolerate chestnuts when young but in recent years I have avoided them just in case.  She can’t eat raw pears but can eat them cooked, some melons she has a problem with and these complications can also be heightened through her hayfever season.

Cross-contamination

Her fish allergy is so severe she only has to be too close to the fish and her face will itch and her eyes turn red and swell.  If she touches raw egg she can’t touch her face, again itchy red eyes.

There is great paranoia sometimes on my part when making food for her with cross-contamination and I’ve had to throw away good food when my mind goes blank and I can’t remember if I was careful.  I’m always nagging the oldest daughter and Bikerboy about using chopping boards or things like serving themselves nut cereals too close to where allergy kid prepares her food.

I’ve tried to make sure the other children don’t suffer because of stories I’ve heard, where adults feel they were penalised as children when their sibling had a food allergy and their mother use to ban food from the house.  The only time I banned my oldest daughter from having something in the house was popcorn for a while, after I discovered allergy kid was intolerance to corn.  The smell of popcorn use to have allergy kid in tears over it.

Allergie Kid’s Epilepsy

After many investigations, MRI, EEG and other tests in three or four different hospitals my daughter’s epilepsy is the unknown puzzle.

The scan showed on the right side of her brain she has what they call an anomaly, dictionary translation: ‘an odd, peculiar, or strange condition, situation’.  The doctors believe this was probably caused by lack of oxygen shortly after birth.  This ties in with the epileptic fits she had for a week when she was a two week old baby, but then disappearing for 10 years.

Epilepsy is a broad term like Cerebral Palsy, meaning it covers all sorts and what triggers an epileptic episode will be different to the individual and to many it will stay unknown.

My daughter’s epilepsy is the type that only occurs just before waking up, and I’ve been told by a Great Ormond Street Consultant this type is the worst because of implications it has if not controlled.

Her neurologist wanted her epilepsy to be controlled by drugs and reluctantly we tried.  After three different types of drugs over months they all had terrible side-effects and I decided to bring her off them slowly as it’s required.

With my daughter there seems to be a weird connection with her allergies.  This is something the doctors don’t believe is possible, and I myself can not be a hundred percent, but the correlation between her eating soya for days in a row and feeling like she’s suffered a fit is too coincidental for me.  Allergy kid hasn’t had an epileptic episode for over a year until about two weeks ago.

Soya & Fits

I said above she is intolerant to corn and soya, she eat these as treats in-between “clear” days of being on her strict diet.  She is fine if she has them only one day, her eczemas might flair up but her body can recover.  It’s when she abuses this and has it over two, three, four days even in tiny amounts, her body can’t tolerate it and makes her very sick.

When she is sick she lies in bed asleep all day with chronic stomach pain, migraine, throwing up her empty stomach until finally she emerges from this episode, which can last three, four days.  At the end of it she’ll have big fat ulcers to content with, can’t talk, eat or drink.

Allergy kid use to miss a lot of school before I figure out she had intolerances as well as allergies.  It took years to discover she had a problem with corn, and a year after that I realise she was also intolerant to soya.  This was the reason I started to bake my own bread.

Two weeks ago she made herself Japanese miso noodles three days in a row using what I thought was 100% brown rice miso but as it turned out the miso is a mixture of rice and soya.

After the third day of eating the miso noodles, the next morning she woke up complaining of the same type of headache she has when she suffers from an epileptic episode and her body feeling the same way.

This doesn’t make it a fact but I can not help seeing how the control over her intolerances has seen a stop with her fits, it would be good if I was right about it and she can indeed control them this way .

Difficulties in Diagnosing Intolerances

You would’ve thought being a household of allergies I would figure out quickly my oldest daughter was intolerant to dairy but it took months because at that time she was already a teenager and I couldn’t control what she ate outside the home.

In order to figure out intolerances one has to stay away  100% from the food you suspect for a good three to four weeks, then eat the suspect food and see how your body reacts.  In my case it can take up to two days to have a reaction making it incredibly hard to track down what could be causing it.

My oldest went to the doctor with these severe headaches and they were diagnosed as tension headaches, I didn’t believe this, but after this visit my daughter took what I said seriously and tried a dairy-free diet long enough to see how she felt.  She then worked out a correlation between her headaches, her stomach cramps and eating dairy.  We now have our treat days and suffer the consequences afterwards.

It’s incredibly hard to have a dairy-free diet for example if you know how good it tastes, it becomes unbearable at times, we both miss cheese and the joy of picking up pot of yoghurt for a snack.  If you ask allergy kid what she misses it’s not being able to eat popcorn as often as she likes and soya rice crispy chocolate bars, but her allergy foods which she’s never eaten means nothing to her and don’t enter into her mind.  You don’t miss what you’ve never had.

Diagnosing Allergies

Allergies are an immune response, where the body reacts to that food as if it’s a poison and if you’re lucky all that will happen is you’ll throw it up straight away, but if unlucky the body will go into anaphylactic shock.  This is why sufferers like my daughter carry an Epi-pen, a shot of medicine called epinephrine to be injected into the thigh.

Contrary to popular belief even the belief of some Paediatric Consultants I’ve met, you do not have to eat the allergen food in order to have an allergy to that food.  Like my daughter you can be born with allergies to foods you’ve never eaten.

The Challenge Test 

My daughter born with allergy  to sesame has never eaten sesame.  At the age of 10 her blood and skin-prick tests were showing a decline in the reaction to it and her Consultant told us she should have a challenge test.  This is where my daughter has to attend the hospital to eat a small amount of the allergen food under supervision.

Firstly they put some tahini (sesame paste) on her lips and left it for 10 minutes, the idea being if no reaction is shown she would proceed to eat a teaspoon of tahini.  Unfortunately with my daughter after the tahini was put on her lips they started to swell, that was the end of that, she is still very much allergic to sesame.

Here you have an example of a food a child has never eaten in her life, with allergy tests showing a decline over years but it means nothing until trying it for real, my daughter can not touch the stuff.

Testing for Allergies

The only tests exist at the moment for allergies are skin-prick and blood tests and as shown with my daughter these are not a hundred percent accurate.  A test can show a negative but this does not mean you are not allergic, only through eating can you really be sure of it.  These are not sophisticated tests but are the only ones we have.

A machine test that use to be available in many chemists here in the UK is absolutely rubbish, giving people false readings of a long list of foods they’re supposedly allergic to, I’m glad it appears many of these machines have been removed.

The Peanut Allergy Test in Cambridge

I spoke to one of my daughter’s allergy doctors a few weeks ago, Dr Abbas Khakoo, to clarify a few things for me including what was the outcome of the Peanut Trial carried out by Dr Andrew Clark.  My daughter was asked years ago to participate in this trial but we couldn’t take the time to do it.

Dr Khakoo said this trial showed many of the children’s peanut allergy were dampen down with the desensitising method but the allergy unfortunately came back.  In this desensitising test the kids ate one or more peanuts every day and the children tolerating this, did so for as long as they kept it up, but once they stopped eating the peanuts for two weeks or more the peanut allergy would return.

Dr Khakoo said currently there are no food allergy trials going on anywhere in the world.

The Allergy Epidemic

There is a feeling that now we have more people with allergies than ever.  I certainly can speak of allergy clinics full, waiting 3 hours to be seen, and remember when my daughter’s clinic had to close for 6 months to new admissions in order to cope with the work load.  There aren’t enough allergy clinics it seems, especially when you’re the desperate parent trying to have your child properly diagnosed.

In spite of this appearance when I asked Dr Khakoo about it he said statistics were carried out through the 1990’s showing by the end of the decade the numbers had remained stagnant.

Statistics shows 7% of children of the UK population suffer from some kind of food allergy (those known about) but only 2% of the adults have food allergies.   Dr Khakoo said those adults who’ve grown out of food allergies will most likely suffer from another type of allergy like rhinitis.

There Are No Allergen Foods

For some reason there seems to be this idea that the food itself is the allergen and if we somehow change it in some way then we would see a reduction in allergies.  Huge sums of money have been poured into this subject and it still baffles the experts.  There are foods which are common with allergies such as dairy, eggs and soya but then you have to look at how much more these are consumed through many of the processed products we now eat and size of population increase.

Rye Allergy – Case in Point

This year I confirmed something I suspected last year when making my Gran’s Portuguese Corn & Rye bread, broa, that I have an intolerance to rye,  it brings up the same rash on my arms, and causing stomach problems as dairy.  I met blogger, Vanessa at Dan’s workshop last year who’s allergic to rye and who has a family history of allergy to rye.  In a book Dan recommended to me, Breads White and Brown by R. McCance the author quotes from a diary by Celia Fiennes in the 18th century and her allergy to rye.

Rye today is seen by many as a low allergen food especially by those with problems to wheat.  Rye is not consumed anywhere near the quantities wheat is eaten around the world, if it were could we see a large increase of allergies and intolerances to rye?  This is the point I’m trying to make.

Me in my twenties, my mother, my Gran and my Great-Gran

In The Olden Days People Had Allergies

It appears to be a new phenomenon this allergy business but what you’ll find often is stories like mine and that of Vanessa, a family history of allergies.

My Great-Gran born at the beginning of the 20th century was allergic to dairy, and so was her daughter, my Gran, but my mother skipped it.  My mother however has some strange fruit allergies while she lived in England but would disappear when staying for more than 2 weeks in Portugal.  I developed an intolerance to dairy in my thirties and my oldest daughter a dairy intolerance as a teenager, and obviously there’s allergy kid.

In my Gran or Great-Gran’s day they would never visit the doctor, there was no money for such things, you had to be dying before a doctor was called, if you felt unwell having a particular food, well, you simply avoided it.

My Great-Gran was born poor and although brought up in a village the access to dairy was not in abundance it is today.  You only had access to milk or cheese if you were a farmer and the majority in the village were too poor to buy them.  You would buy things as treats for special occasions if you could afford it, and this would extend to cakes as special occasion treats because you had to save enough eggs to bake a cake, they would normally be used as protein for meals.

20th Century Invention?

And here you have a prime example of someone born around 1910’s with a dairy allergy in a remote part of the world with very little access to dairy, why and how did someone like my Great-Gran become allergic to milk?

If you go on the popular belief today of food allergies increasing because of over-exposure to foods how do we explain my Great-Gran or Celia Fiennes in the 18th century allergy to rye?

In the olden days we didn’t know how many intolerance or allergies there existed, and we also don’t know how many children died because of allergy reactions.  My Great-Gran had 13 children but only 8 survived into adults, those that died no one knew why, unless there was an obvious visible disease like chicken pox.  Years ago many children of the poor (and rich families) died for unexplained reasons.

Allergy Conundrum

I’ve said above how my daughter stays away from the family of foods like legumes, but it doesn’t mean she is allergic to all beans necessarily, we don’t know this until she has a challenge test to all beans.

During last year’s visit to the allergy clinic I was talking to my daughter’s doctor who described the complication of certain allergies. She had a family where the child is allergic to all lentils but in another family the child can eat red lentils but not green lentils. The allergy will be different to each individual and this is why one has to view the person having the problem and not the food.

Why was my daughter born with allergies to all nuts including tree nuts but somehow tolerated chestnuts? I’ve only stayed away from them in recent years since her allergy list increased, but without really knowing if she has developed an allergy to them.

April 9, 2012 1:35 pm