Today is the first day of my celiac blog. I write in my daily journal every day, so I thought, why not bring it to the internet to connect with others on this matter…

When the doctor tells you that you have celiac disease, you look at him with one eyebrow raised, “What the hell is that?” I thought to myself. I may have had the thought it but confusion was written all over my face. My lovely sweet doctor informed me of the foods I had to avoid, “gluten, wheat, barley, rye,” he repeated. I swear he said more, but I honestly wasn’t listening after wheat, because last time I checked, wheat is PASTA, BREAD, BAGELS, OREOS, MILK BUNS. That day, I left the doctor’s office, with my blood test in my hand and written on it was a big fat red circle around the letters tTG-IgA 104 H (<15). Now, im no mathematician, but I can make out that it is nearly 7 times higher than the healthy level, that says <15 cuddles by brackets. I didn’t have the brackets, I had a letter H, that means High.

The hardest thing about celiac is telling people, it didnt help that I wasn’t 100% sure myself what it meant but you come to realise the more you they ask you about what it is. The more you stop telling people until you’re sure yourself about what it means. I’m not going to sit here and say that it doesn’t change your entire life. It does. I feel left out when I’m eating in group settings, I feel like a burden when my friends and family accommodate to my dietary requirements, all while my body and I are still trying to figure this thing out.

The internet doesn’t have too much information on celiac disease, besides science research papers, a fair few websites like Coeliac Australia, Celiac Disease Foundation, celiac disease foundation and Beyond Celiac. According to the National Institute of Health, 1% of the global population have undiagnosed celiac disease, this means tens of millions of people are completely unaware.

Regional Statistics

Australia: According to Coeliac Australia, roughly 1 in 70 Australians have the disease, but 80% remain undiagnosed. Out of an estimated 360,000 affected Australians, roughly 288,000 do not know they have it.

United States: The Celiac Disease Foundation estimates that about 2.5 million Americans are undiagnosed, meaning roughly 70% of the celiac population lacks a proper medical diagnosis.

Europe: Population-screening studies (such as those monitored by the Association of European Coeliac Societies) consistently show that up to 75% of cases are missed by standard clinical practices.

I’m not going to lie, I feel like the more I researched about it, the harder I struggled, so I found statistics more comforting because it gave me certainty in a time I felt uncertain about many things. It wasn’t long after that I began to isolate myself and not go out to social events because I was worried about what I was going to eat, gaining unwanted attention, or burdening others. That is not a good place to be. But when I went online, I didn’t find many celiac-friendly groups, especially in Sydney. My journal was my best friend, but I still lacked the human connection and bonding with people on similar topics and exchanging stories.

So now that you know this, I hope you don’t feel so alone… I hope this community will help you build confidence, knowledge, and get control back of your life. It may seem like a daunting adjustment at first, but I’m sure it will get easier with time.

– Love Nancy x