Disordered Eating and Missed Diagnosis – My Gluten Free Journey

Since starting my gluten free Instagram account, I’ve had a few messages about my diagnosis with coeliac disease and about how/when I knew I needed to go to the doctors and I’ve wanted to share my full story but it’s long and still very raw but after reading a few similar stories from other bloggers, I’ve decided I want to share mine.

This may not be helpful or relevant to anyone but it might be therapeutic for me to write it all down and that makes it worthwhile if nothing else.

Disordered Eating

I call it disordered eating opposed to an eating disorder as I don’t fit into a particular eating disorder.

I was never a ‘true’ anorexic or bulimic or any other kind of eating disorder but I have been treated for what was just called disordered eating, an unhealthy and distorted relationship with food.

My problem with food and eating was a combination of two main things: emetophobia (a severe fear of being sick) and body dysmorphia and horrendously low self confidence.

The combination of me not wanting to be sick and not wanting to gain weight resulted in me just not really eating and when I did eat, I had a group of safe foods that were small, plain and wouldn’t make me ill.

I became obsessed with portion size, use by/best before dates and most of all, the number on the scales.

Where Gluten Came in to Things

While struggling with my warped relationship with food, I was feeling sick all the time.

Because I was so scared of being sick, many people told me it was the fear of being sick that was making me feel sick but I knew this feeling wasn’t in my head.

I started to think that maybe it was gluten because I’d heard lots of people say gluten made them bloated and feel sick, so (stupidly) I decided to try and stop eating without medical guidance to see if it made a difference.

I wasn’t very good at cutting it out and at first thought eating thin crust pizza opposed to deep pan was a step in the right direction… that one still amazes me!

I went to my doctors so many times to tell them about the connection between feeling sick and gluten but because of my mental health past, I was told it was in my head and that I needed to try counselling again.

Fast forward many months and multiple counselling sessions, I finally found a doctor who sent me for some blood tests, including coeliacs.

The results came back obviously positive (and that was with minimal gluten in my system) and after an additional blood test a few months later (while totally GF) it was still visibly positive and conclusive enough for my consultant and dietician to be happy that I had Coeliac disease and could start living accordingly.

After Diagnosis

Although being diagnosed coeliac was a revelation for me after genuinely believing I was crazy for so long after so many bad experiences with various GPs, it wasn’t a miracle cure.

I still struggle with disordered eating every single day. I still battle the negative body image thoughts and the fear of being sick but knowing what I can and can’t eat has massively helped me rationalise my fear of being sick.

Being gluten free has forced me to either become more aware of my food, be more experimental with trying new foods and cooking and basically care more about food or simply not eat, so I chose to make food a focus but for once, in a positive way.

I set up my Instagram account to ensure I stayed passionate about food and motivated to try new things and eat well because that’s what followers want to see, not me eating plain gluten free pasta or a yogurt which is what I used to live off.

My teenage years have been full of so many hurdles but I feel like at nearly 19, I’m on my way back to normality (or my version anyway) and that’s a refreshing feeling.

I’m adapting more and more to my new diet and the way it affects my life everyday and battling the hardships of disordered eating one little step at a time.

I hope this has helped anyone struggling in a similar way or feeling isolated because of a health condition that is no fault of their own.

I always welcome comments, emails and Instagram messages and reply to every single one where I can, so if you simply want a chat, please don’t hesitate to get in touch!

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18, full time Content and Social Strategist, beauty enthusiast.