“It’s complicated”—My relationship with Food as a Type 1 Coeliac


Type 1 came into my life nearly 17 years ago when I was diagnosed at age 13. One of the things I can remember thinking was, “What can I eat now?” I’d always loved food, eating out, having treats and cooking too. As time went on living with type 1, it became more and more clear to me how much impact food has on my type 1 control and therefore my life. Food, I discovered, could save my life when my blood sugar levels were low. It could also make me feel lethargic, sick and pretty useless if my blood sugar levels were high.

Then, four years ago, as part of a routine blood test for my type 1, I was diagnosed with coeliac (or celiac) disease. A biopsy confirmed this and further tests went on to show that I had reduced bone density due to malabsorption of nutrients caused by coeliac. I was not feeling great about this diagnosis and once again wondered what I could eat, and what I should eat. I started to look into what was in the food that I was buying and was shocked to see how much unnecessary things were put in, and not just unnecessary gluten. I mean, gluten in packaged peanuts … but why?

I chose to focus on unprocessed food and that excluded most of the gluten-free aisle! I started to obsess about what I ate and the macro nutrients (carbohydrates, fat and protein) content became the most important aspect of every meal. Whilst it began as a healthy focus, it became an unhealthy obsession.

I’d also changed from someone who loved eating out, both the delicious food and the social aspect of it, to someone who would try to avoid eating anything I hadn’t prepared myself. My fear of getting “glutened” (for a coeliac even the tiniest bit of gluten ingested can cause damage to the lining of the small intestine which can cause a host of unpleasant symptoms) meant I panicked over eating out and avoided social situations that involved food.

As a type 1, I worry about accurately carb counting food and with coeliac I worry about becoming sick. On one occasion I went out for a meal with work colleagues. Before we went I called the restaurant. “Yes, we can cater for a coeliac,” they said. I pre-ordered to ensure it would be okay and then when they served I confirmed it was the coeliac-safe, GF meal. As people started looking into desserts, my stomach began to cramp. It didn’t stop and the pain was intense. I had to leave, my meal clearly had been contaminated in some way. I was so embarrassed as I got up to leave midway through someone talking. I hated this feeling. Eating out was no longer a fun experience, it was one that caused me anxiety and paranoia.

When I applied for Bike Beyond so many thoughts were running through my head, so many reasons that I thought would stop me from doing it. Food and my anxiety around it, especially with 19 other people I didn’t really know, was at the top of my list. I like to be in control of everything I eat, I weigh everything to get accurate carb counts and I check and triple check that nothing contains even a trace of gluten. These 10 weeks are going to be hard, eating such a variety of food from a massive range of sources (thank you to all those people helping to fuel us as we ride!) is going to push me.

At the school where I work, we emphasize to the children that “Practice makes Progress,” and I’m taking this advice on Bike Beyond. Whilst I’m not expecting to be a social butterfly at the dinner table on day two, I’m hoping that by day 60, my anxiety will have reduced even just a little. I want to finish with a feeling that I can eat out, relax and enjoy the food and the company. Not only can I prove to myself that as a as a person with type 1 diabetes and coeliac I can bike 4,200 miles, but I will show others that they can do it, too. Type 1 and coeliac are hurdles, not barriers, and over we go.

Read more of Helen Mepham’s Ride Log.

WRITTEN BY Helen Mepham, POSTED 06/05/17, UPDATED 07/25/23

Helen is a teacher aide for children with disabilities (and INCREDIBLE abilities) in Christchurch New Zealand. She has had type 1 since 2000 and coeliac disease since 2013. She moved from the UK to NZ to follow her dream to live close to the mountains and the sea. She loves the outdoors and joins 19 others this summer cycling across the USA as part of Team Bike Beyond. Follow Helen on Instagram: @helenmephamt1d