Tag Archives: coeliac disease diagnosis

Coeliac Disease: Being Diagnosed

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On behalf of my son I would like to publically thank Dr Gavin.  In 2012, I took my son, yet again to the doctor to talk about his on-going gastro issues.

I had prepared my words….”Give him a script for flagyl as I am sick and tired of being told that my son doesn’t have giardia because what ever he has just keeps on coming back”.

We walked into Dr Gavin’s room as our GP of 6 years was on holiday.  Some things are just meant to be and for KJ finally after 12 – 13 years of gastro-intestinal problems: countless doctor’s appointments, a trip to hospital and an appointment with a paediatric gastroenterologist, Dr Gavin in 15 minutes suspected Coeliac Disease.

In a conversation I had with Dr Gavin two years later, I talked with him about rates of diagnosis for Coeliac Disease and whether he found that there is an increase in the number of patients being diagnosed.  I hear so many misinformed people say… but everyone has coeliac disease these days or how come so many people have coeliac disease.

I found Gavin’s response interesting… for him, it has been a matter of catch up… yes, it appears that more people are being diagnosed, but these patients should have been diagnosed years before. Our discussion went along the lines of research and publications which drawn attention to a particular disease and diagnosis and so then there is a ‘window’ when there is increased rates of diagnosis.  He talked about Vitamin D deficiency as another example of this ‘catch up’ diagnosis.

Next month will be three years since my son and I walked into Dr Gavin’s consulting room.  It was ‘kismet’ on many levels. We were lucky to see a doctor who had read recent literature and tried to make sense of KJ’s unwellness.

And luckily for this mother, I didn’t have to launch into the “I just want a script for flagyl…” tirade.

Unfortunately, there are still too many people who haven’t found their Dr Gavin to help them diagnose their coeliac disease.

As a member of Coeliac Queensland, I applaud their ongoing and continued campaigns* to highlight coeliac disease and its diagnosis.

So I think about ways for those already diagnosed to help make a difference.  Maybe it might be worth making contact with your extended family  and to just let them know the hereditary link with coeliac disease. Talk with those relatives that you know suffer from osteoporosis about the link between osteoporosis and coeliac disease. I think that sometimes, while we might tell family “my son has coeliac disease”  we don’t also add the extra important information about hereditary links.

Being diagnosed is a severe disruption to the life of those with coeliac disease BUT for my son we are sincerely grateful to Dr Gavin who in 15 minutes identified a probable cause of my son’s lifetime unwellness.

*Coeliac Awareness Week is 13 to 20 March 2015 and Coeliac Australia’s campaign focus is

Moving the Needle: Promoting Diagnosis of Coeliac Disease

Dear Doctor…

An Open Letter to GPs and Paediatric Gastroenterologists

From a mother of a teenager with Coeliac Disease

LISTEN, DON’T JUDGE AND LOOK AT THE BIG PICTURE

Six months ago#,  I took my 15 year old son to the doctor’s for yet another bout of gastro and stomach cramps.  He had been off school for three days which had been preceded by a day off school 10 days previously.

Luckily this doctor, not our usual GP,  listened.  I was convinced that my son must have had some bacterial infection or parasite that just wasn’t going away, as 6 months previously he had missed some 10 – 12 days from school over a period of a month. And this GP listened when my son tried to put into words what his cramps felt like.

This doctor did not judge: he did not judge me or my son and sent my son off for tests.

And he listened.

As I glanced at the request for blood testing, I saw that the doctor was screening my son for Coeliac Disease.

Suddenly, the last 12 – 13 years all made sense.

In September the previous year, I had taken my son to our GP twice to discuss the latest ongoing or recurring bout of gastro and debilitating cramps and to obtain medical certificates for the school.  We discussed the normal treatment which included hydration and a gradual return to food with a dry biscuit or toast. As well, a stool sample was taken.  But I do remember the look I was given: that look which bordered on, this mother is overly sensitive to the workings of her son’s bowel movements and/or maybe this teenager is avoiding school.

Our visit to a Paediatric Gastroenterologist some 12 years previous also saw my son’s problems summarily dismissed.  After some 1 – 2 years of ongoing bouts of gastro, my toddler’s stomach cramps had escalated to the stage that my husband and I took him to the hospital in the early hours of one morning. From there, our GP referred us to a specialist who took a summary of our boy’s health, asked pertinent questions about milk, cordial and fruit juice consumption and then explained that gastro bugs tend to spread among toddlers at Day Care.

“ But our son doesn’t go to Day Care” we said and I then remember the look I was given: that look which bordered on, this mother is overprotective of her son and/or overly sensitive to the workings of her son’s bowel movements.  Suddenly, my son’s health outcomes were judged on how the Paediatric Gastroenterologist saw me.  Did he listen to find out that on the days I worked, my son was cared for by a nanny  or that at home I also had a preschooler and two teenagers? This judgement was further reinforced by his parting comment at the end of our second visit : “And when is your son going to Preschool?”  Our boy was only 3!*

On our return visit to the specialist, and after blood tests which all seemed fine, he commented that he could send us off for more blood tests but he didn’t think this was necessary or he could do an endoscopy but he also believed that this intrusive procedure was not necessary.  I cannot remember him ever mentioning our son being screened for Coeliac Disease.  And the specialist did not mention endoscopy in any context.  And off we went, still without answers as to what our son’s health problems were.

In those intervening 12 years, my son continued to have ongoing problems with gastro, vomitting and stomach cramps.  And we continued to visit our GP for advice and treatment.  Rotavirus.  Giardia.  Tummy Bug. Virus.  He was even tested for Cryptosporidium. We installed a water filter to filter out any nasties but still the bouts continued sporadically.  I suppose after a while, I even came to believe these problems were normal.  It was just something going around, although I never could fully understand why only my youngest always seemed to get that “something” that was going around.

Luckily for my son, it only took 12 years before we found a doctor who listened and didn’t judge and we thank this doctor for looking at the “big picture” and searching for some answers.

My son’s journey is similar to so many others who eventually find themselves with a diagnosis of Coeliac Disease.

And I am sure that these people also wished that their medical practitioners listened, didn’t judge and looked at the big picture.

Always a Mum

January 2013

*Preschool age was 5 years old.

# I wrote this six months after our son KJ was given his Coeliac Disease diagnosis.  It took many months for my anger to subside and be replaced by disappointment  for the many times our family doctor had failed my son.