Coeliac Life

Creatively expressing yourself with photos has long been popular on social media, but how do we express our lives with Celiac Disease or Gluten Intolerance with Instagram and other apps? As part of a student project, the Celiac Life app gives you colourful and funky meme stickers to enable you to creatively express your life as a Celiac, which you can then share via Instagram, Twitter or Facebook (!).

Want to take part? Here’s more info:
The Celiac Life app is a small project put together by PhD student Sam Martin. Sam has Celiac Disease, IBS and Arthritis, and is writing a thesis about how people with chronic illnesses such as Celiac Disease and Non Celiac Gluten Intolerance (NCGI) use social media to share experiences of their illness and find information. The Celiac Life app was created to see if the use of illness and dietary related stickers would help individuals creatively express themselves in a slightly different way to general Meme images found on the internet. It is hoped that using stickers will help towards people creatively managing their illnesses on a daily basis.

Stickers(!)
Stickers in the app have been designed to help you quickly express how you're feeling on a good or a bad day, and are illness (e.g. Celiac) and diet specific (e.g. Gluten Free, Lactose Free, Vegetarian, Fructose Free). Please feel free to DM me on Twitter/Instagram with any suggestions for new stickers (@CeliacLifeApp), & I'll be happy to add some new ones (and name them after you)! I can put all submissions on Instagram, and the most popular will feature in the next app update!

But what is 'Celiac Disease’?
Celiac disease (pronounced see-liac and spelled celiac in other countries) is a lifelong autoimmune disease. It is caused by the immune system reacting to gluten – a protein found in wheat, barley and rye. Symptoms range from mild to severe, and can include bloating, diarrhoea, nausea, wind, constipation, tiredness, mouth ulcers, sudden or unexpected weight loss (but not in all cases), hair loss and anaemia.Celiac disease is common and affects one in 100 people. However only 24% who have the condition have been diagnosed which means there are currently nearly half a million people who have Celiac disease but don’t yet know. The only treatment for Celiac disease is a gluten-free diet.

Privacy
This is a PhD project right? So what happens to your data?

1) I can only see your data if you share it with me (seriously, read more legal stuff below, and in the app). If you'd like to take part in this research, please very kindly use the hashtag #CeliacLifeApp when you post through the app to Instagram or Facebook. Any awesome photos with hashtag #CeliacLifeApp will be featured (with your permission) on the app's Instagram page: Instagram.com/CeliacLifeApp or Twitter page: Twitter.com/CeliacLifeApp. That way I get to see how creative you've been in using the app!

2) But what about the rest of your data - is it private (I hear you ask)?
The Celiac LifeApp app doesn't collect any personal information, and cannot track your location, you, or even the type of stickers you use, or whether you post to Instagram, Facebook, Twitter or anywhere else. The only data seen is if you opt to make a user account on the app, and post your photo to the Wall of Fame. Even here, no personal information is collected, outside of the images you post. You can use any username you want, your email address is not harvested, can be deleted by you, and can only be used by you to remind yourself of forgotten password details. The only other information collected is standard app information such as how many downloads have been made via the app store.

About Sam(!)
You can find more about me and my research at: DigitalCoeliac.com or, if you want to follow my photos on how I figure out how to manage symptoms of Celiac Disease etc. & write 80k words(!) of a thesis, follow me on Instagram @gray373