Coeliac Australia


My brother was diagnosed in December 1995 with a blood test and endoscopy, looking like a skeleton! The doctors had no idea why he was having these extreme symptoms, endless diarrhoea. My father suggested to the Doctor our first cousin had been diagnosed with Coeliac earlier that year. Could this be my son’s problem? Which it was.  

In 1996 my brother’s wife commented to me “You must have Coeliac too” I was quite slight, with three children ages 3,4 and 5 years old. I did feel tired but didn’t think anything of it. I didn’t really feel unwell at all just a bit tired, busy mum. The only real symptom I could think of was, about every six weeks I had very runny stools. It was so quick that I never made it to the toilet.  I was subsequently diagnosed with a positive blood test and a positive endoscopy with Coeliac.  

There are 4 children in our family (me and my 3 siblings), 3 have Coeliac. We were all diagnosed close to our 30’s.  

 My husband and I have 3 children. All 3 have Coeliac.

They were all in their teens when starting on the gf diet. 2 have type 1 Diabetes. One at age 10 the next at age 13.  

1st child with Coeliac has recently been diagnosed with Retinitis Pigmentosa.  She is 34 years of age.  

Our 2nd child with Coeliac and Type 1 Diabetes has been struggling with the symptoms from sarcoidosis since 10 years of age. Doctors only discovered it was sarcoidosis lurking in the last 5 years.  She is now legally blind unfortunately. She is 32 years of age now.? 

Our 3rd child with Type 1 and Coeliac does have problems with night vision as when he was diagnosed (by us), he had constant unbearable gut pain at 21years of age. His eyes reacted at that time and required laser treatment. He lost 15 kilograms and was in hospital in Melbourne. The doctors/professors were baffled as to why he had so much pain. Anyway, Gussy can’t have dairy either now. His symptoms severe gut pain.  

My eldest sister, who has Coeliac, 2 out of her 4 kids have Type 1 Diabetes. 1 might have Lupus, 2 may have Coeliac, they haven’t been tested yet.? These girls are all in their early 30’s.  

My brother has two children with coeliac, both diagnosed in their early years. One has recently been diagnosed with Rheumatoid Arthritis. He is 25 years old. 

We have 5 first cousins on my dad’s side. Two have Coeliac, one has Rheumatoid Arthritis. Our second cousins (their children) 4 have Coeliac.  I haven’t caught up with them for a while, there could well be more.