GLUTEN FREE awareness magazine March 2019 | Page 14

The importance of research,
education and advocacy initiatives
by Julia Jensen (Miss Universe Australia 2019 NSW State Finalist)
I have learned that susceptibility to developing
coeliac disease can be inherited; however,
the disease itself is not inherited. In order to
trigger the onset of the disease something else
is required, i.e. an environmental factor, usually
some type of emotional or physical stress. confirm the diagnosis, I was referred to a gastroenterologist
for a gastroscopy and duodenal biopsy. A month later,
at my post procedure appointment, my gastroenterologist
unequivocally confirmed I had coeliac disease. I was
prescribed a strict gluten free diet for life and referred to a
dietitian. As a huge fan of every type of food from warm
baguettes to tiramisus, I cried the entire journey home;
dwelling on the life sentence I had just been served.
In January 2012, just months after completing the gruelling
HSC, I plunged head first into studying a Bachelor of
Commerce and Bachelor of Laws (Honours). After a few
months of being buried under piles of textbooks, my first
boyfriend broke up with me. My world crumbled. From
then on, I would come home each day both physically
and emotionally spent. I wasn’t just ‘tired’; merely walking
through the house became a Herculean task. Everybody
seemed healthier, happier and more energetic than me. After realising the benefit the diagnosis would bring to
my future health, I quickly shutdown the pity party and
scheduled an appointment with my referred dietitian.
At my first consultation, I was told by my dietitian that I
could cheat on my gluten free diet whenever I felt like it!
I now know, for coeliacs, this is not an option. Coeliacs
must avoid even small traces of gluten for their lifetime
or risk serious long term health complications. Having
already experienced prolonged misdiagnosis, as product
of ignorance of coeliac disease within the healthcare
industry, it was at this point I experienced its other effects
- problematic advice given to relying patients. The truth of
the matter is, if it were not for the Coeliac Australia website
(www.coeliac.org.au) and its bountiful resources about the
disease, I would still be spending weekends hospitalised.
The next year saw the inner parts of my elbows
permanently bruised from continual blood tests. Although,
many times I looked okay from the outside, a war was
taking place inside; and my body had surrendered. In
addition to chronic fatigue, I started suffering from iron
deficiency, hair loss, constant mouth ulcers, anxiety,
depression, memory loss, absent menstruation, chronic
constipation, bloating and abdominal pain. I was quickly
prescribed iron tablets, antidepressants, pain medication
and the contraceptive pill; then shown the door.
Now marks seven years of a strict gluten free diet. I have
come a very long way since I was diagnosed and even
further from the months leading up to my diagnosis. I
finally feel human again (most of the time). However, the
last seven years have not been easy, to say the least.
The burden of the gluten free diet is comparable to the
treatment burden rated by patients with both end-stage
renal failure and congestive heart failure.
Despite the daily cocktail of prescription medications,
months went by with no improvement. Desperate for
answers, I turned to numerous doctors to seek help. Every
doctor told me the same thing: ‘It’s all in your head’. They
said there was nothing wrong with my stomach that positive
thinking couldn’t fix. My pain was merely an aspect of my
anxiety that no amount of antidepressants could fix.
One gluten crumb can make a dream vacation, or even
dinner and a movie, become a great deal of torture.
Currently, living with coeliac disease for me has meant
having to feverishly research every restaurant I dine at then
feel anxious for next 24 hours, skipping social events to
avoid the awkwardness arising from being the only one not
eating, feeling like a burden to my family and friends, and
constantly apologising for and feeling self-conscious about
my disease.
After a carb fuelled holiday in Bali in 2013, I returned
to Australia with debilitating abdominal pain that made
Bali Belly look like child’s play. I was convinced I had a
community of rare parasites living in my stomach. I went
back to my local medical centre and was seen by a new
doctor that had been recently employed by the clinic. As
expected, I was ordered a broad spectrum of blood and
other sample tests.
Although tremendous strides have been made over recent
years, my mission is to help bring an end to the suffering
caused by coeliac disease through raising funds for
and voicing the importance of research, education and
advocacy initiatives.
However, this time, a coeliac serology was added to the
pathology request.
A few days later my life changed forever. I was called by
the medical centre to return for a review of my results with a
doctor. During the follow-up consultation, I was told that my
blood tests had come back positive for coeliac disease. To
I strive for a future where we can all live well, be
well, and by all means... eat well!
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