Half a million people in the UK are living with
undiagnosed coeliac disease and many may
have been told they have IBS. Norma McGough,
CoeliacUKdirector,urgessuffererstogettestedINA RECENTSURVEY,only 3% of British
adultswereawarethatthesymptoms of
IBS(irritablebowelsyndrome) are like
thesymptomsofcoeliacdisease. These
includebloating,stomachpains or
cramps,diarrhoeaorconstipation and
feelingexhausted.Weknow from
researchthatasmanyasone in four
peoplewithcoeliacdisease have been
previouslymisdiagnosedwith IBS.
DuringCoeliacUKAwareness
Week(13–19May),thenational charity
CoeliacUKis thereforeurging anyone
withIBSsymptomstoasktheir GP for
a coeliacdiseasebloodtest, if they
haven’talreadyhadone.In fact, NICE
(NationalInstituteforHealth and Care
Excellence)recommendsthat anyone
withIBS-typesymptomsshould be
testedforcoeliacdiseasebefore
a diagnosisofIBSis made.
If Pam,fromSheffield,had been
tested,shemighthavebeen spared
yearsofpainfulsymptoms. Pam had
beenillsinceshewasweaned,
spendingweeksinhospital as a child
andbeingtoldinhermid-teens that she
hadIBS.Shesufferedwithsymptoms of
bloating,sicknessanddiarrhoea for 49
yearsbeforeshewasfinally tested and
diagnosedwithcoeliacdisease.Whatis coeliacdisease?
IT’SANAUTOIMMUNEDISEASE
causedbya reactiontogluten – but
it’snota foodallergyoran intolerance.
Whensomeonewithcoeliac disease
eatsgluten,thebody’simmune
systemattacksitsowntissues. This
causesdamagetothelining of thegut so the body is unable to absorb
nutrients properly.
There is no cure and no medication;
the only treatment is a strict gluten-free
diet for life. Coeliac disease affects
one in 100 people in the UK, but only
30% have been diagnosed, which
means there are nearly half a million
people in UK who have the condition
but don’t know it.The complications of a missed
diagnosis
THE AVERAGE TIME it takes for
someone to get a diagnosis is 13 years
from the onset of symptoms – by which
time, they may already be suffering with
added complications caused by the
disease. In fact, if left untreated, it
can lead to a number of serious
complications, including anaemia,
osteoporosis, unexplained infertility,
neurological conditions such as gluten
ataxia and neuropathy and, althoughrare, there is an increased risk of small
bowel cancer and intestinal lymphoma.
Another long-time sufferer, Wilma,
from Liverpool, was initially diagnosed
with anaemia in her 30s after being
turned down for blood donation. She
was diagnosed with osteoporosis
when she was 43 and told her chronic
bloating was down to IBS – and to
just get on with it! Finally, at the age
of 47, after developing constant
shakes, her GP referred her to an
endocrinologist, who passed her on to
a gastroenterologist. After 15 years of
symptoms, she was finally tested and
diagnosed with coeliac disease.
It doesn’t need to be this difficult. The
first step to diagnosing coeliac disease
is to have a simple, low-cost blood
test that can be done by your GP. Yet
thousands of people are not getting
the necessary testing. This not only
causes years of unnecessary suffering
for the individual, but also wasted
costs to the NHS, with repeated
appointments and investigations.
We urge anyone who has been given
a diagnosis of IBS without being tested
to ask their GP to test them for coeliac
disease. Don’t cut out gluten before
this, though: it’s essential to keep
eating gluten until all tests are
completed, otherwise they may give
a false negative result.
In addition to speaking to your
GP, you might find it useful to take
Coeliac UK’s online assessment at
isitcoeliacdisease.org.uk. This will take
you through the symptoms and risk
factors, and recommend whether or not
you should be tested for the condition.Is your IBS undiagnosed
coeliac disease?
^Thediseaseiscaused
bya reactionto
gluten– butit’snotthe
same as a food allergy_PHOTO: ISTOCK/GETTY IMAGES
Talking point
98 HEALTHY FOOD GUIDE MAY 2019