Dairy Intolerance The Trend Towards Self-Diagnosis

Dairy Intolerance
The Trend Towards Self-Diagnosis
A report by Allergy UK in association with Alpro
Allergy UK—Planwell House—LEFA Business Park—Edgington Way—Sidcup—Kent—DA14 5BH
www.allergyuk.org
Allergy UK is the operational name of The British Allergy Foundation, a charitable company limited by guarantee and registered in England and Wales.
Company No: 4509293. Charity No: 1094231, Registered in Scotland – Charity No: SCO39257
Foreword by Lindsey McManus, Deputy CEO, Allergy UK
Food intolerance is an increasingly common condition. Milk is the biggest cause of food intolerance in the
UKi, but is dairy intolerance on the increase or are people cutting out dairy unnecessarily?
The aim of this report, was to establish the breadth of suffering and varying routes of diagnosis for dairy
intolerance. Allergy UK wanted to establish how people came to the conclusion they have a dairy
intolerance.
What is clear from the researchii is that thousands of people in the UK could be at risk of nutritional
deficiency by self-diagnosing themselves as dairy intolerant.
In fact the findings of the research revealed that nearly half of individuals who class themselves as dairy
intolerant, are self-diagnosed. Meaning their condition hasn’t been confirmed by a medical professional.
The results are worrying to Allergy UK.
It is vital that the front-line healthcare professionals, such as, GPs and Practice Nurses, receive more
support in this area.
More credible and easily accessible resources need to be made available to ensure sufferers receive the
correct advice and are signposted to appropriate resources of information.
There is a clear need for more information and guidance from qualified health care professionals, to
ensure people are not simply cutting dairy out of their diet. To be able to safely go ‘dairy free’ individuals
need to include quality dairy free alternatives in their diet, so there is no impact on their health.
This report is produced in association with
About Dairy Intolerance
There are several reasons why dairy products might need to be avoided. It might be because
the proteins in milk are not tolerated, or because the milk sugar (called lactose) is not tolerated.
Unlike milk allergy which is most common in infants and young children, dairy intolerance does
not involve the body’s immune system, and symptoms are usually delayed rather than
immediate as with milk allergy.
Spotlight on: Hydrogen Breath Test
Lactose Intolerance
To test for lactose intolerance you could be
asked to undertake a hydrogen breath test.
Primary lactose intolerance is a result of a
reduced ability in the body to produce the
enzyme lactase, which may be a genetic
abnormality. Low levels of lactase, lead to
an inability to digest lactose (milk sugar).
This process will take around two hours.
Lactose intolerance can be detected through
a hydrogen breath test for adults, or a stool
sample for babies and children;
Approximately 15 minutes after having the drink,
you will be asked to blow up ‘balloon-like bags
‘every 15 minutes for the duration of the test.
Secondary lactose intolerance is a result of
disturbance in the bowel such as gastroenteritis, causing the enzyme to be destroyed,
which may be temporary until the gut has
healed. Tolerance to lactose can usually
return after recovery. Lactose is present in
cow’s milk, goat’s milk and sheep’s milk in
similar quantities.
You will be given a drink containing lactose
which may cause abdominal discomfort such as
bloating, diarrhoea.
Then the air you breath into the bags is analysed
to see if hydrogen is present.
In normal cases very little hydrogen is detected,
however undigested lactose can ferment in the
colon due to bacteria, producing gases including
hydrogen.
If hydrogen levels are found to be raised it shows
digestion of lactose is not effective pointing
towards lactose intolerance, or it could highlight
towards the presence of abnormal bacteria in
the colon.
Although dairy intolerance does seem to impact the digestive system more than anything else,
as with all food intolerances other parts of the body can also be affected.
The research asked people to feedback on what symptoms they suffer from:
“I am plagued
by eczema
and itching
frenzies if I
eat hidden
milk that is in
food and
drink, so I
rarely travel
or eat out any
more.” Mrs W
Gut symptoms were the main complaints from sufferers, but
eczema and nasal/sinus congestion were the fourth and fifth most
common symptoms.
Usually when the skin, and breathing are affected it is more likely
to be a food allergy involving the immune system, however
people do often comment that dairy products cause them to
produce mucus making them very congested.
This makes it very confusing for people when trying to establish
the difference between an intolerance and allergy.
Pain and discomfort caused by dairy intolerance can affect both
work and family life. Having to take time off work due to ill health
can often cause problems with employers that do not understand
the condition.
Self-Diagnosis
Worryingly the survey revealed that 44% of individuals who class themselves as dairy intolerant,
are self-diagnosed, relying on the internet and non-conventional methods of diagnosis.
As with most food intolerances it can be difficult to
get an accurate diagnosis for dairy intolerance as
there is so little known about the condition.
Because there are many different causes of dairy
intolerance e.g. lactose or histamine. It is difficult
for the sufferer to understand exactly what is
causing the symptoms, they just see it as dairy.
People that are suffering from tummy problems,
for example, will often be diagnosed as having IBS
when other medical conditions have been ruled
out.
There are no scientifically proven tests available to
diagnose dairy intolerance and because people
become desperate to find out what is causing their
symptoms, they will often cut out many foods
without proper guidance in an effort to find an
answer.
“I didn't realise up until
the age of 50 that my
symptoms were caused
by dairy intolerance.
Bouts of diarrhoea and
nasal/sinus problems
stopped when I put two
and two together and cut
out dairy.”
Ms H
Lack of Information
It was clear from the
research that those who
are, or maybe, suffering
from dairy intolerance
need more support.
Over half of those
surveyed (54%) said there
wasn’t enough advice out
there for dairy intolerance
sufferers.
There is a great deal of
confusion around dairy
intolerance, and good
clear advice is needed to
help people that are
thinking of excluding dairy
from their diet, make an
informed decision.
Finding suitable dairy alternatives can be confusing and costly, and choices are limited, particularly
when visiting restaurants. The survey highlighted that in particular, sufferers were looking for more
information on sources of calcium, recipes, suitable dairy swaps and ideas for eating out.
When it comes to how best sufferers can be helped. Three quarters (75%) of the individuals
surveyed said their preference was to be assessed through a face-to-face consultation with a
health professional, whilst written materials and online support were also key.
Education
While the message that credible information and support is needed for sufferers, it is also clear
from the research that more education is also needed. When asked what dairy based products
triggered reactions, milk was the main culprit, but other milk based products were not always
found to trigger reactions. Because of the varying causes of intolerance it can be difficult for the
sufferer to pinpoint triggers, and often the whole dairy category is seen as the culprit.
Better knowledge for both patients and health care professionals would enable a more speedy
diagnosis for the sufferer.
Allergy UK has a wealth of information available for both health care professionals and sufferers,
even something simple as a food and symptoms diary, will help identify possible causes. Once
completed it could be used as a practical aid to help the GP in diagnosing what type of dairy
intolerance the sufferer may have.
Cutting out dairy
72% of those suffering from dairy
intolerance symptoms have removed
all dairy sources from their diet, the
main source of calcium in the UK.
While a further 25% have cut out some
dairy food groups.
Allergy UK has found that when it comes to trying to self-diagnosis an intolerance, most people
think that dairy is one of the main foods that should be avoided, and this isn’t always the case.
People should have help from a Health Care Professional when removing food groups from their
diets, but in reality this doesn’t always happen.
Even if an individual has removed dairy from their diet and feel better for doing so, they will still
need support in making sure that their diet is nutritionally sound.
“There seems to
be little support
available from
the medical
community
regarding this
issue and we
have got most of
our information
and help from
friends.”
Mr G
Food & Symptoms
Dairy intolerance can make it very difficult to enjoy the types of foods that most people
normally have in their diet. All milk products need to be avoided these include butter, milk,
cheese, and yoghurts.
It also includes foods that use milk as an ingredients so biscuits, cakes, puddings, sauces,
pastries, even ham and many other foods that you might not think of.
Any processed food can contain milk so it is essential that the full ingredients’ listing is read
for all manufactured products.
It used to be very difficult to identify all milk derived ingredients, but with improvements in food
labelling due to changes in European Food Labelling law, foods which are manufactured now
clearly list if milk or a milk derived ingredient is contained in manufactured pre-packaged foods
or drinks.
At the moment this is not the case for foods that are sold loose such as delicatessen, butchers
products or bakery items, but this will change in 2014 when new regulations become
mandatory.
For this reason, non-packaged items should be avoided as their ingredients are unknown and
they may contain milk or milk derived ingredients.
There is still confusion over which
foods fall into the ‘dairy’
category. Anything that is made
from or contains an animal milk
is classed as dairy.
It was highlighted in the survey
that many people thought that
eggs fell into the dairy group,
however this is not the case and
may mean they have been
avoided unnecessarily.
“Eating out is miserable
as dairy free foods are
not widely available in
restaurants. My son is
four and we have to take
a packed lunch wherever
we go.”
Mr N
When following a milk free diet for the first
time it is easy to make mistakes and try and
take shortcuts but with so many foods
containing milk derived ingredients there is
no substitute for carefully reading food
labels every time a new food is used.
Often people new to this diet are surprised
to find out that many foods can contain milk
even food that you wouldn’t expect such as
crisps. However, other brands may not, so
there is a need to check every food label or
you may be restricting your diet
unnecessarily.
The recommendation is to start by completing a food and symptoms diary, before you make any
changes to your diet. This is the gold standard way of finding out what foods are causing
symptoms, and can be very helpful when done properly.
By accurately recording the times and duration of all symptoms, illness or stress, as well as
everything eaten or drunk. This includes all prescribed medicines and other supplements, all
sweets, nibbles and even licking out the mixing bowl when cooking!
This record diary should be continued for three weeks and should be representative of a normal
diet. This can then be taken to the GP to help them identify the culprit foods. Ask for referral to a
dietitian that has knowledge of food intolerance, as ideally, it should be analysed by a registered
dietitian or nurse with nutritional training.
It is helpful to keep any food packaging for reference by the health care professional.
“Dairy intolerance made
me feel useless as a wife
and mother as I felt awful
all the time. I didn’t want
to go out for meals and it
ruined my social life. Now
I’m on soya based products
I’m like a different person.”
Mrs L
Dairy Free Alternatives
When cutting out dairy foods from the diet it is particularly important to ensure they are
replaced with suitable dairy free alternatives such as soya milk and yoghurt with added
calcium. With so many plant based alternatives now readily available in the supermarkets,
following a nutritionally adequate, dairy free diet can be easily achieved.
The research has shown that soya dairy alternatives are the number one choice for 84% of
individuals avoiding dairy. This is promising as the majority of these now available in retail
stores are calcium and vitamin fortified.
Alpro UK has developed a 14-day dairy free
challenge in collaboration with allergy
dietitians to help individuals wishing to go
dairy free safely.
The challenge is available via the Alpro website
(http://www.alpro.com/uk/lactose-dairy-free)
and offers helpful tips and advice to help
sufferers including a calcium reckoner, dairy
swaps, ingredients list checker, recipes and
eating out.
Summary
It is clear from the findings of the report that there is still a great deal of confusion surrounding
dairy intolerance. People know that something is making them feel very unwell however,
once other medical conditions have been ruled out by their GP, they are left high and dry not
knowing which way to turn. It can be a lengthy process finding the cause of someone’s
symptoms.
It is often assumed that dairy is one of the main causes of a food intolerance leading people to
remove it from their diets without any guidance by a health care professional, this is a major
concern as even in this day and age we are still seeing people becoming malnourished due to
eliminating foods that are a main provider of nutrients.
Sufferers taking dairy products out of their diet will often see an improvement in their health in
the short term, but do not always think of the consequences of not having a well-balanced
diet. There are many excellent alternatives to dairy now easily available in supermarkets.
Good advice should be readily available to help them in both obtaining a correct diagnosis and
in how to best manage their intolerance in the long term. Allergy UK can provide this
information for both Health care professionals and the public via our helpline and website.
We believe it is important for us to work in association with companies like Alpro UK to raise
awareness about dairy intolerance and give support to those that need it.
For more information on dairy intolerance including downloadable factsheets visit:
www.allergyuk.org, or call Allergy UK’s helpline (01322 619898) which can offer further
guidance or provide details of allergy clinics in the local area.
This report was produced by Allergy UK, February 2013
Allergy UK is the leading national medical charity providing advice, information and
support to people with allergies and intolerances. Allergy UK acts as the 'voice' of
allergy sufferers, representing the views and needs of those affected by this multi
organ disease.
Allergy UK makes a difference through a dedicated helpline and network for
sufferers. The charity provides invaluable information and guidance to empower
sufferers so that they can manage their symptoms and receive appropriate diagnosis
Allergy UK Helpline
01322 619898
(9am to 5pm Monday to Friday)
www.allergyuk.org
Planwell House
LEFA Business Park
In association with:
Edgington Way
Sidcup, Kent
DA14 5BH
i Research carried out by Opinion Matters, December 2011, 2001 UK adults
ii Research carried out by Allergy UK, December 2012 to January 2013, 1225 dairy intolerance sufferers