As a dietitian I was surprised to receive a diagnosis of coeliac disease at the age of 38 years. The Coeliac Society of Ireland has been a huge support since then to support me living with this condition, and despite having a general background of knowledge on what a gluten free diet might involve this support continues to be so important to help me stay on track.
Where it all began.
During my time working as a dietitian in a paediatric hospital one of the paediatric consultants presented a lecture on Coeliac Disease, bursting the myth that it is solely a disease of childhood and mentioned the iceberg effect: for everyone diagnosed in Ireland, there are 5-6 people undiagnosed. She herself was diagnosed in her late 20s and was able to recount both a personal and clinical account. It started me thinking. I had no obvious symptoms apart from chronic tiredness and infertility. During my teenage years I was chronically anaemic and slept 12hrs plus daily taking regular naps when I came home from school. Could I possible have undiagnosed coeliac disease?
I went to my GP who didn’t consider a coeliac screen was necessary. I had no obvious gastro-intestinal symptoms at the time, no bloating and no obvious pattern of diarrhoea or constipation. This left me with only one option to order the test myself online … I found an online accredited lab that did a ttg test and decided to try this out. (The kit I used however was for health professional use only). My results came back with elevated levels and when I took this result straight to my GP he organised a referral to a Consultant Gastroenterologist. The diagnosis was confirmed through my GP and my first OGD came back with a report of almost ‘total villus atrophy’, meaning my digestive track was so damaged that it was difficult for me to absorb nutrients from my diet. This was a huge shock to me at the time, but I also felt my chronic tiredness had an answer.
What I learned in those first days
One of my first ‘things to do’ post diagnosis was to seek a consultation from a dietitian that specialised in GI disorders. As a qualified dietitian myself I had some knowledge but needed more expert advice to ensure I was on the right track. I had not been aware that using separate cooking utensils was so important and that gluten contamination can be so widespread – using wooden chopping boards, being careful when baking (avoid inhaling wheat flour), using separate toasters and of course when eating out to ring in advance.
Joining the Coeliac Society of Ireland was also key. In those early days I attended information days, demonstrations and encouraged all my family to complete a coeliac screen. I find the Food List very helpful and now have a brother that also requires the diet so pass on tips and information in his direction.
Having a supportive husband, family and friends was vital in those early days and it can also be a unseen burden for family and work colleagues to have a ‘coeliac in your party’ during holidays and especially eating out.
Over time my gut started to heal and the repeat OGD about a year later showed considerable healing and a return to what a normal GI tract should look like. However, shortly after I excluded gluten from my diet any time there was a source of contamination I started to have extreme reactions. This was when I noticed the commonly reported symptoms: severe abdominal bloating, constipation, diarrhoea and even vomiting. These was symptoms I hadn’t experienced to this extreme while I was pleasantly unaware of my underlying condition. This made coming to terms with the condition in the longer term psychologically more difficult. Eating out became more challenging as not only was there less choice/options on the menu but now I was becoming extremely anxious every time I ate out. Eventually, I came to accept that taking a risk occasionally was important for my own mental well being and if I have an important event I try to minimise taking any risks. This has helped me cope better with any anxiety associated with eating out although this remains a challenge at times.
Living with coeliac disease in the longer term
So here I am 15yrs later and looking forward to new research in the area and what this might mean for people living with coeliac disease.
Every year I get my coeliac bloods checked with my GP and he keeps on top of my related health issues. For example, I just had a routine Dexa scan last week to keep an eye on my bone health.
Life is easier due to the range of gluten free products available and there is greater awareness in restaurants and the food industry. At times there remains confusion between people who have a medical condition that requires a gluten free diet and those who choose to reduce gluten in their diets for a variety of non-medical issues. Cross contamination is also a challenge. Its always reassuring when you arrive at a restaurant and the staff convey they have a friend or family member with the condition… I secretly jump for joy (internally) as I know I will be catered for by someone who knows the condition and the diet well.
This is my story so far … more to follow I expect!
