GLUTEN FREE awareness magazine March 2019 | Page 17

Diagnosis journey;
improving GP awareness
Sandra Barclay (CA Member Qld)
I was diagnosed with coeliac disease in 2017.
Coeliac Awareness Week prompted me to
share some of my experience to hopefully help
others get diagnosed more quickly.
The following resources have been designed to
help with correct diagnosis of coeliac disease.
Available for download from www.coeliac.org.au
• Family screening letter for your GP
My diagnosis of coeliac disease happened when I, thankfully,
needed to see a different doctor, as my usual doctor was away
for a month. She diagnosed me with Graves’ disease then went
straight on to screen for coeliac disease. I had one positive gene
result. I also had one border-line positive anti-body result and one
very negative anti-body result. However this doctor knew that low
IgA (which I’ve had for years) creates a false negative on one of the
anti-body tests and can also be indicative of coeliac disease. Given
the whole picture, she gave me the option to “rule out” coeliac
disease with an endoscopy. Rather than ruling it out, my diagnosis
was confirmed, with inflammation that was visible at the time of the
procedure (not just under the microscope) even though the single
positive anti-body result was only border-line. This GP is very aware
as her son has coeliac disease, so she is very well researched on it.
• Coeliac disease gene test - analysis and
reporting
• Testing and diagnosis of coeliac disease in
children
• Gluten challenge
• Plain English coeliac disease information
• Associated conditions and other autoimmune
diseases
• Video: Diagnosing coeliac disease - a brief
guide for GPs
Over the preceding couple of years, four other doctors had either
ordered or viewed my coeliac anti-body results (none of them did
the gene test). One was a specialist I saw for osteopenia in my
mid 40’s. She was the first one who had ordered coeliac serology;
however, she didn’t mention the result and I didn’t know she’d done
the screening. I followed up with a GP, discussing the results of
the numerous blood tests the specialist had done. She noticed the
coeliac panel and commented, “Do you know you have gluten
sensitivity? But you don’t have coeliac disease because only one
anti-body is positive.”
• AJGP article: Interpreting tests for coeliac
disease: Tips, pitfalls and updates
• Electronic CDM (chronic disease management)
templates for coeliac disease
I understand that Coeliac Australia is fully aware of the need to
continue reaching GP’s with accurate information about correct
diagnosis of coeliac disease. I also think the family screening letter
(available on the Coeliac Australia website https://www.coeliac.
org.au/uploads/65701/ufiles/Brochures/FamilyScreeningLetter.
pdf) for relatives to take to their doctor is great and extremely helpful.
On querying this a few months later with my regular GP, I was
advised, “You definitely don’t have coeliac disease because you
don’t have diarrhoea;” (I was presenting with chronic nausea,
constipation and low iron at the time, as well as osteopenia in my
health history), “however, you could have gluten sensitivity.” She
re-did the anti-body screening and at that point the border-line
anti-body had dropped just into negative.
From my experience, I feel it could be useful for the GP awareness
program to place a bit more emphasis on the following points:
1. Clarification about how to actually use/interpret the anti-body
screening tests effectively.
My sister, approached her GP as a relative following my diagnosis,
and was treated very casually as she also had no diarrhoea, even
though she does have chronic constipation and bloating, as well as
autoimmune thyroid that is treated by the same GP. Another sister
was told by her GP that “coeliac is a children’s disease” (in 2017!).
2. Stronger emphasis that not all people with coeliac disease
have gastrointestinal symptoms, or specifically diarrhoea, and
that sometimes there may be no obvious symptoms.
In my case, it was the autoimmune diagnosis that led the GP to
check for coeliac disease. I’d had no nausea for a long time. The
previous low iron was then just into the normal range. I still had
the chronic constipation but that has turned out to be un-related
(i.e. my gut has fully healed but there has been no change to the
constipation). I stick to the gluten free diet because I know I have
coeliac disease and don’t want further complications from it. I have
no obvious ill effects when I’m accidentally exposed to it.
Two of my friends were diagnosed with coeliac disease a year
before I was (2016). One presented with the classic coeliac
skin rash and was given cortisone cream to treat it. After seeing a
remarkably similar rash on the internet, my friend asked if she could
be checked for coeliac disease, which turned out to be positive.
The other friend had seen different doctors over five years for joint
pain and other non-gastrointestinal symptoms. Eventually, in tears of
desperation due to her symptoms, she saw the GP who ended up
diagnosing me. My friend hadn’t considered coeliac disease, but
this doctor was onto it and her result was positive.
I know that there are many different stories of people’s experiences
with doctors in their journey to diagnosis, but I hope that some of the
aspects that I’ve shared are helpful to others.
17