My name is Andrea and I am 35 years old. I always grew up knowing what a “coeliac” was, but I never understood that their bodies could not digest gluten. My dad and his sister are coeliacs. My dad was diagnosed in his late 30’s therefore I knew what the symptoms were and what food he could and could not eat.
As a teenager, I start showing symptoms. Constipation, diarrhoea, bloating, mouth ulcers, mood swings. I attended my GP many times and was told it was puberty etc. No bloods were ever done even when I disclosed that there was a history of coeliac disease in my family.
I had my first child when I was 23. I was diagnosed with hyperemesis gravidarum. I was unable to keep any foods down apart from plain bread/toast and plain biscuits. This led to severe constipation and other unpleasant symptoms. Again, this was diagnosed as a complication of pregnancy.
In the years after my first child, I requested that I be specifically tested for coeliac disease, I was given a blood test and the results came back “borderline”. I was not told to change my diet etc. basically, given no further instructions, only to eat more fibre to help ease the constipation.
I fell pregnant with twins in 2018 and by 2019 I could not cope with the bloating, stomach cramps anymore. I again requested further investigation with a new doctor. She took bloods which came back positive for coeliac disease, in fact my inflammatory markers were extremely high. I was then referred for a endoscopy which again confirmed that I was in fact a coeliac and confirmed I had a hiatus hernia (maybe brought on by twin pregnancy). I was sent for a DEXA (bone) scan which diagnosed me as having Osteopenia in my bones due to my body not absorbing calcium over the years.
I have had 1 dietitian appointment with a hospital since I was diagnosed in December 2019, everything else I have learned by myself or through the Coeliac Society. My GP has prescribed me (Vitamin D/Calcium) which I take every day with an iron supplement to ensure all my nutrient levels remain level.
I have been very strict with my diet and I feel so much better for it. At my last set of bloods, I was advised that my inflammatory markers had come down to single digits due to the management of my diet.
I believe there is still little awareness of coeliac disease and its often passed off as something less sinister. It has taken almost 15 years to get a diagnosis. I feel I’m in a happier place since my diagnosis but feel there is still a lot people can learn. Awareness week will definitely help promote both the Society and make people more aware of the disease.
