I'm a card-carrying patient with confirmed allergies to multiple
foods, and an associated astronomically high total and specific IgE to
counter any doubters. I read both sides of the published argument in the
print version of the BMJ with great interest, and so offer a patient's
perspective.
I endured 21 years of severe eczema, sleep deprivation, social stigma
and more Betnovate than you could paint the Forth Bridge with. When my
'childhood' eczema failed to do the decent thing, as I had been promised,
and go away of its own accord, the dermatologist shrugglingly told me I
now had 'adult' eczema and discharged me. What a shame no one had the
courage to do an exclusion diet in my toddler years and before I started
school.
Many of the nutritional concerns raised about doing exclusion diets
are voiced particularly in the context of treating or investigating
children. An exclusion diet is not something to be afraid of: do it right
and you only need to do it once! Don't do it at all, and you will be
condemning an unknown proportion of your patients to years of avoidable
suffering, both physical and psychological.
Done correctly, an exclusion diet need not be continued long enough
for anyone to get malnutrition. Any benefit (or not) from strict allergen
avoidance is normally clear in under a month, after which the diet can
either be abandoned because it didn’t work, or be incrementally expanded
to a nutritionally complete diet and from there to a socially convenient
one. Three months into a competently executed programme, with adequate
support of a dietician or a nutritionist, no patient should be in a
position where their diet is too restricted, either nutritionally or
socially.
The main difficulty for doctors and patients alike, is that there are
hardly any NHS specialist centres to refer patients to. In the absence of
appropriate support, many sufferers never even consider food allergen
avoidance. A minority self-construct exclusion diets but these are often
flawed in design or execution: too many potential allergens still in the
diet, or very commonly failure to completely exclude any of the allergens
as actually intended. An obvious risk of this state of affairs is patients
incorrectly concluding they have no food allergies. A less obvious risk of
poorly executed exclusion diets is of withdrawal flare or
hypersensitisation reactions.
Eventually, two decades after my eczema and asthma first erupted, an
unusually enlightened dermatologist diagnosed my food allergies. Further
investigation and follow up was limited to an immunologist offering
further (false) hope that I could still grow out of it. But, if I didn't
I'd have to cope on my own. I’m 41 now : no change so far.
Anandan's 10-minute consultation (BMJ 2 Sep 2006) shows that at least
there are some clinicians interested in paediatric food allergy prevention
and management, though the evidence base remains weak and Hu's
observations suggest poor consensus on how to interpret what limited
evidence exists. But who is looking after the adults?
The lack of any interest in supporting or investigating serious food
allergy sufferers became relevant again when I had children. There was,
and is, no one I could turn to for advice on allergy prevention. Whilst
there is plenty of generalised advice, such as that found in the 10-minute
consultation, there is none specific to cases where the mother already has
known IgE mediated severe food allergies. For example, can allergy be
passively transferred even temporarily via immunoglobulins in breast milk,
in the same way that we understand passive immunity? This became highly
relevant when my first son failed to thrive on breast milk, despite
careful maternal diet control. Breast milk allergy was diagnosed and
happily he accepted the taste of elemental amino acid formula milk and
thrived on it. I approached the birth of my second son, 2 years later,
with some trepidation: to breast feed or not? We flipped a coin, and in
fact he thrived on breast milk alone. But only in the paediatrician did I
finally find someone who could give me sound and up-to-date advice about
my own allergies!
Finally, all three articles appear to be me to be working from the
tacit premise that death is the only adverse outcome of food allergy worth
considering real or worthy of either investigation or intervention. This
seems entirely misguided, as are many of the concerns that children risk
being socially excluded because of the necessary treatment of their
allergies. This is nothing compared to the playground stigma and social
exclusion that goes with having untreated, unmanaged and unexplained
severe atopic skin or lung disease. I would gladly have traded the
miseries my eczema brought me throughout childhood, for a diet that didn’t
quite let me eat everything my friends did.
Speaking as a patient who considers herself largely failed by the
medical profession, the true 'dangers' of food allergy aren't exaggerated
- they're either not recognised at all as dangers, or are disregarded on
the grounds that if it doesn't kill you (and it very probably won't),
you'll most likely grow out of it. Do we know how often this is actually
true in modern times and populations, such that playing the numbers game
in this way might be justified? And what of people like me?
Rapid Response:
Food allergy - another patient's perspective
I'm a card-carrying patient with confirmed allergies to multiple
foods, and an associated astronomically high total and specific IgE to
counter any doubters. I read both sides of the published argument in the
print version of the BMJ with great interest, and so offer a patient's
perspective.
I endured 21 years of severe eczema, sleep deprivation, social stigma
and more Betnovate than you could paint the Forth Bridge with. When my
'childhood' eczema failed to do the decent thing, as I had been promised,
and go away of its own accord, the dermatologist shrugglingly told me I
now had 'adult' eczema and discharged me. What a shame no one had the
courage to do an exclusion diet in my toddler years and before I started
school.
Many of the nutritional concerns raised about doing exclusion diets
are voiced particularly in the context of treating or investigating
children. An exclusion diet is not something to be afraid of: do it right
and you only need to do it once! Don't do it at all, and you will be
condemning an unknown proportion of your patients to years of avoidable
suffering, both physical and psychological.
Done correctly, an exclusion diet need not be continued long enough
for anyone to get malnutrition. Any benefit (or not) from strict allergen
avoidance is normally clear in under a month, after which the diet can
either be abandoned because it didn’t work, or be incrementally expanded
to a nutritionally complete diet and from there to a socially convenient
one. Three months into a competently executed programme, with adequate
support of a dietician or a nutritionist, no patient should be in a
position where their diet is too restricted, either nutritionally or
socially.
The main difficulty for doctors and patients alike, is that there are
hardly any NHS specialist centres to refer patients to. In the absence of
appropriate support, many sufferers never even consider food allergen
avoidance. A minority self-construct exclusion diets but these are often
flawed in design or execution: too many potential allergens still in the
diet, or very commonly failure to completely exclude any of the allergens
as actually intended. An obvious risk of this state of affairs is patients
incorrectly concluding they have no food allergies. A less obvious risk of
poorly executed exclusion diets is of withdrawal flare or
hypersensitisation reactions.
Eventually, two decades after my eczema and asthma first erupted, an
unusually enlightened dermatologist diagnosed my food allergies. Further
investigation and follow up was limited to an immunologist offering
further (false) hope that I could still grow out of it. But, if I didn't
I'd have to cope on my own. I’m 41 now : no change so far.
Anandan's 10-minute consultation (BMJ 2 Sep 2006) shows that at least
there are some clinicians interested in paediatric food allergy prevention
and management, though the evidence base remains weak and Hu's
observations suggest poor consensus on how to interpret what limited
evidence exists. But who is looking after the adults?
The lack of any interest in supporting or investigating serious food
allergy sufferers became relevant again when I had children. There was,
and is, no one I could turn to for advice on allergy prevention. Whilst
there is plenty of generalised advice, such as that found in the 10-minute
consultation, there is none specific to cases where the mother already has
known IgE mediated severe food allergies. For example, can allergy be
passively transferred even temporarily via immunoglobulins in breast milk,
in the same way that we understand passive immunity? This became highly
relevant when my first son failed to thrive on breast milk, despite
careful maternal diet control. Breast milk allergy was diagnosed and
happily he accepted the taste of elemental amino acid formula milk and
thrived on it. I approached the birth of my second son, 2 years later,
with some trepidation: to breast feed or not? We flipped a coin, and in
fact he thrived on breast milk alone. But only in the paediatrician did I
finally find someone who could give me sound and up-to-date advice about
my own allergies!
Finally, all three articles appear to be me to be working from the
tacit premise that death is the only adverse outcome of food allergy worth
considering real or worthy of either investigation or intervention. This
seems entirely misguided, as are many of the concerns that children risk
being socially excluded because of the necessary treatment of their
allergies. This is nothing compared to the playground stigma and social
exclusion that goes with having untreated, unmanaged and unexplained
severe atopic skin or lung disease. I would gladly have traded the
miseries my eczema brought me throughout childhood, for a diet that didn’t
quite let me eat everything my friends did.
Speaking as a patient who considers herself largely failed by the
medical profession, the true 'dangers' of food allergy aren't exaggerated
- they're either not recognised at all as dangers, or are disregarded on
the grounds that if it doesn't kill you (and it very probably won't),
you'll most likely grow out of it. Do we know how often this is actually
true in modern times and populations, such that playing the numbers game
in this way might be justified? And what of people like me?
Competing interests:
None declared
Competing interests: No competing interests