The road to diagnosis- Part 1



This is my story of coeliac diagnosis. Looking back I hadn’t realised how bad I felt or for how long. Now in recovery from active coeliac disease at times it’s a wonder I made it through! This blog is the beginning of my gluten-free journey with all the twists and turns it entails.

It had been some time since I’d first thought something was wrong. I’d spent years complaining about being overly tired and more recently just generally uncomfortable. It’d just become normal to me, everyone felt like this as they got older!

I’d been told on many occasions throughout life that there wasnt any medical cause for it – ‘your a teenager your meant to sleep’, ‘your stressed it’s normal’, ‘don’t work so hard’ where staple answers.

My last term of university was a struggle, I worked extremely hard and so I put how I was feeling down to that. I spent the last month of term at home and my father drove me to university to drop all the work off, I could barely walk the stairs when I got there. Once I was home and rested the fatigue gave a little. When in a reality I was just eating better at home.

So last summer when the fatigue hit again I too put it down to being overworked and stressed, working 7 days a week in our own cafe and planning a wedding is a lot of work after all!

On our wedding day I complain about my dress being too tight when it hadn’t before, in hindsight I’d just eaten a platter of breads and meats, stew with dumplings and a large desert… it was most defiantly the gluten. By eight I was exhausted! But that’s normal surly?

I spent our end of season mini moon tired but under the assumption I was recovering from the wedding and a tough season?

Over the winter we close our cafe and concentrate on our craft work (My husband a potter and myself a designer), so this was great opportunity to catch up on some much-needed sleep I thought. Which I did, and I barley did any work. I’d wake, eat,slump on the sofa, sleep and repeat. I couldn’t shake the constant tired feeling.

By christmas I couldn’t make it to the garden shed without being out of breath… I’d joke that I was so unfit and January would see some resolutions to get fit!

I over ate at Christmas, Christmas is big for me! I love all the treats and baking! I made cookies, and cakes, meats, crackers, cheese! I love it! I got more and more tired and more and more achy. I put the aches down to the cold weather and continued making excuses for the fatigue.

We flew to New York in January for our honeymoon! We couldn’t wait, we both love food and running a cafe its a great excuse to visit as many food establishments as possible! We booked on a pizza tour around Manhattan, research reasons only obviously! With snow promised we rushed around for the first 4 days doing all the out-door sights so during the snow we could spend time in the warmer attractions. Come day 4 of our amazing trip I felt so ill. I ached, I was tired, I slept from 8.30pm each night, I put that down to jet lag.

All I ate was pancakes, french toast, doughnuts, pizza, pasta… everyday! It snowed. I was bed ridden. I had the shakes and a fever. I drifted in and out of  consciousness. I was convinced it was the cold weather and some kind of virus. My amazing husband pounded the streets of New York in the middle of a snow storm in search of cold medicines and food. It wasnt his fault that he came back with cereals and pizza, he wasnt to know it was making me sicker. He did however bring some fresh fruit salad, within an hour of eating the fruit I felt so much better!  A miracle cure! And so for the next few days I ate very little other than fruit, I was by no means right but I was able to enjoy the rest of our trip.

Once we’d been home a couple of weeks, the same aches in my knees and back returned. There’s no way it was the cold or the mattress. It was one day at about 11am, I hadn’t been up long, I had to crawl up the second set of stairs to our bathroom that I gave in. This wasnt right. I rang the doctors and made an appointment!

The visit is another post all in its self!