In case you didn’t know, it’s Coeliac Awareness Week this week. Social media becomes awash with mainstream Coeliac Awareness posts about the usual – gluten free food, Coeliac misdiagnosis and eating out. I wanted to portray the day to day life of people living with the disease including the uncensored bad bits. I hope to open the eyes of non-Coeliacs to the challenges faced by those diagnosed with this life long auto-immune disease. These people were kind enough to share their stories so that you can share them with your non-Coeliac friends.

A few years ago I fell ill, I was getting agonising stomach pains, nausea and generally feeling unwell. I went to the doctor and they thought I had appendicitis, so I was taken to hospital but scans showed it wasn’t that so I was discharged. Forward 3 months and I’m still in agony, off work because I couldn’t sit for more than a few minutes, all tests were coming back negative. Another 3 months and I was still in agony but went to see a consultant at the hospital who decided to test for coeliac, which should have been done months before. The nurse with him said to give gluten free a go once my bloods were done that day and I did. I haven’t eaten gluten since that day, just days later the pain was less, nausea had gone and I was feeling better. Three years on I haven’t eaten any gluten intensively and when I’ve been a victim of cross contamination I know almost instantly as the pain reappears. Going gluten free was the best thing I ever did.

In three years I’ve never really had any issues, though one stand out memory was during a trip to Costa, they had a mint choc chip cooler on and I’d checked the ingredients online and it was all safe. I ordered it and started drinking. Then I felt a crunch which tasted suspiciously like cookie instead of chocolate chips. I spat it out but it was too late I’d already drunk some. I hoped for the best but 10 minutes later I was running for the loo. I contacted them and they confirmed they’d run out of choc chips and replaced with cookie used in a different cooler without telling me. Headquarters gave them additional training and a slap on the wrist as they are not suppose to replace any ingredient without informing the customer. It was a nightmare moment but at least some good cane from it with the training.

My partner and his family think I’m a drama queen and a bit of a spoilt madame! To keep the peace I agreed to go for a meal with his parents at their local Wetherspoon’s. I checked out the menu online and decided there were some things I could eat and they claimed to be allergy aware. I ordered the chicken salad and explained to the waiter I was Coeliac so no croutons etc. – he wrote it down and said he would tell the kitchen. When my food arrived it was covered in croutons and bits of who knows what that looked covered in flour. I quietly said to him, “I cant eat this its covered in croutons and things that will make me ill.” Oh yes, he said, “I did tell them. Best you pick it off yourself if I take it back that’s what they will do”!!! I made him take it away and asked for a plain salad with nothing on it, which he did. And yes you guessed it out came a plain salad covered in croutons! I explained again as civilly as I could that I really can’t eat this I’m a Coeliac it will make me seriously ill. So he took it away and minutes later I was presented with a bowl of lettuce and a tomato. I decided this was as good as it was going to get and ate it. Partner’s Mum asked if I was enjoying my special meal! I couldn’t be rude so grinned and said yes I love lettuce! We don’t go to Wetherspoon’s any more.

~ Belinda

This is an excerpt from this blog post from Gluten Freak Abroad, used with kind permission from the writer. COELIAC LIFE: the cringe-worthy experiences of a gluten FREAK – being “the awkward one” at a restaurant: receiving glares from the waiting staff who either a) think you’re being vexatious and want to spit in your food b) have no idea what gluten is so try to offer their own guesstimate on whether the meal will contain gluten (well you can eat potatoes can’t you so it should be fine) c) confirm everything is gluten free to then blow up like a pufferfish an hour later – declining every invite to a house where food is on offer, as you don’t want to put the chef out, couldn’t possibly take your own food and feel like an absolute fool asking to check the back of packets before you trust to consume anything – having to smile through gritted teeth at the faddy daddies who pride themselves on being “another awkward one” immediately after you have ordered, taking away any gravitas that your request had – people assuming I’m gluten free for a health kick because I’m slim, so offering up a salad as their only gluten free choice. WHO THE HELL GOES OUT TO EAT A SALAD? – having to pack at least 7kg of gluten free treats whenever I go abroad, or anywhere for that matter – being told how awful my life must be and how said person couldn’t possibly give up gluten, one guy even told me ‘I think I’d kill myself if I were you’ – people turning their nose up at gluten free food as if I’m offering them dog biscuits. This is my life FFS sort your face out. – spending all your time avoiding the above, only to have a gluten attack from an unknown, unidentifiable attacker, and spend all night doubled over in pain, wondering where it all went wrong. ~ Bex from Gluten Freak Abroad

This is an excerpt from this blog post by Gluten Free and Glittery, used with kind permission from the writer. Beginning my freshman year of college, I was sick after every meal. It started out as just stomach pains and cramping, but progressively got worse. Sure, I was eating a ton of junk food so I blamed it on this. But every couple of months I would end up with “food poisoning”—so bad that I would end up in the ER. How weird, right? How could I keep getting food poisoning especially when I was eating pizza or pasta? Bad luck, right? Well, between the ER visits, I started having chronic diarrhea and cramps after each meal starting at the beginning of my sophomore year. The pains were excruciating and I was constantly bloated. Fall 2011 was filled with constant migraines and extreme fatigue. My neurologist blamed my spike in migraines on being stressed in college and prescribed a higher dose beta blocker. Fast forward to Christmas 2011, I spent the evening laying by the toilet, dumbfounded by how I could be so sick. I vowed to see a doctor and I did so shortly afterwards. Doctors have to take family history and I understand that—but as soon as I said my family has a history of stomach ulcers and that I went to a high pressure ivy league, the doctor automatically diagnosed me with stomach ulcers. He instructed me to only eat bagels to “soak up the acid” and add some peanut butter to get more protein. I was sent on my way with proton inhibitors and zofran to prevent vomiting/diarrhea. I tried to stick with this “tummy friendly” diet and spent Spring 2012 as sick as can be. The fatigue and headaches increased as well as major mood swings and a significant drop in weight. My hair was falling out and my teeth were developing black spots, which my dentist blamed on sodas and coffees—neither of which I drank at the time. The amount of time spent in the bathroom far exceeded the amount of time spent eating. My canker sores were blamed on stress. Everything was blamed on stress. Pre-med overachiever? Yup, has to be the stress, right? Finally, I realized that all I was eating was bread…what does bread contain? Gluten. My friend in college had celiac disease so the notion of celiac disease popped in my mind. […] When I woke up from the colonoscopy, the doctor informed me that the villi in my intestines were completely flattened and she could tell just by looking that I had celiac disease. Yes, my intestines were so damaged that they could be seen by the naked eye. ~ Gluten Free and Glittery