I am one diagnosed coeliac, which means that in my statistical wake there are over a hundred like me who still don’t know, still aren’t well and are still looking for answers.
In Norway where I’m from, the average time between symptom onset and diagnosis is about 6 months. In the USA it can be up to 11 years. I was very ill for about 9 consecutive months. Before those terrible months I had a variety of health issues from the age of 21. There are 19 main misdiagnosis commonly given to coeliacs before they find the truth. I had been diagnosed with 15 of them.
I don’t want to spend too much time highlighting the torment I went through, for the simple fact that I want to move on. But I do know that a great many fresh coeliacs and gluten intolerants out there want and need to hear that their symptoms and their struggle isn’t unique. I was desperate to find someone who had felt what I felt, someone who understood, and most of all someone who had gotten through it. How can I be sure that there’s a way out if nobody has done it before me?
I was very, very ill for a very long time. So ill at times that I wondered if I could actually keep going. My life was so altered that I had lost everything I liked about it. I had lost myself, my personality and my pleasures. I was no good to anyone, just a big fat problem they couldn’t get rid of. That’s how I felt. And the pain was so severe and so constant that I developed anxiety on a multitude of levels. The suffering was so real to me, yet so vague to everyone around me. I didn’t have a diagnosis, there were no definite patterns, no answers and so I must be going insane. The varieties of advice I was given from people who meant well ranged from “eat concrete and toughen up” to “surgery is the only way forward”. My physician wanted to give me antidepressants because they “sometimes fix stomach problems”, and the specialists I saw put me through no less than 7 antibiotic treatments in the course of 3 months. I was broken, there was nothing left of me.
It also took me a very long time to improve as soon as I got the diagnosis, and because I was the only coeliac I knew I kept questioning my diagnosis and the methods. I had no one to turn to, no experts, no black-and-white’s.
I am a lot better now, but my body is still healing. Sometimes I must remind myself that it hasn’t really been that long, and look how far I’ve come. I have ups and downs. Sometimes symptoms seem to come out of the blue, and quite often at the most inconvenient times. I wonder if the pain imprinted a pattern in my memory, and my body follows its old course and gets me into trouble. Or it could just be gluten.
I am of the extremely sensitive kind. No gluten comes through the door in our house. My husband walks this road with me and eats gluten-free.
I have a fantastic husband who stuck with me through the grand decline, and now through my up-hill battle back to being the woman he met. I started getting really ill just 5 months into our relationship. For a year he stayed in with me, mashed me potatoes, drew me hot baths, took me to emergency rooms on work nights, slept in hospital furniture next to my bed and let me squeeze his hand with all the strength I had left. I sometimes didn’t think I had the strength to continue the relationship, and I felt strongly that he deserved better. All the while he decided this mess of a girl would make the perfect wife. I love him.
My parents took great care of me. I couldn’t work in the end, and moved back in with my mum and dad for a couple of months to be cared for. I couldn’t function on my own, and I was scared of being alone. I didn’t know if the pain was gonna kill me. My mum made sure I ate, and she moved into another room so I didn’t have to sleep alone.
It was my sister in the end who came up with the idea that I should be tested for food intolerances, and it was a lady called Tina Hamelten, a nutritionist from Yorktest Nordic, who stepped up and offered a complete stranger a free test. From there on the pieces came together, and I was slowly but surely freed from my cage.
I am sure my story is the same as yours in some way or another. Tell me about it if you want, I would have told you back then if I had been given the chance.
When I got the diagnosis my then fiancée said excitedly “this is your path, you will do great things with this!” I was too tired to consider it then, but it makes sense now. I have to find a purpose in this chaos. I have to own it or it owns me.
This blog is the start of a path that will unfold as I walk it. My vision is to hold out a hand for you to grab, and to take a few steps along side you so that you are better equipped than what I was. At the same time I want to make the world a slightly safer and easier place for us GF’s to roam about. By providing the right information to those who impact our lives, and by making it a wee bit easier for GF’s to find what they’re looking for. A big statement I know, but a lot can come from a little I recon.
This is just a start, but I am going to put my back into it.
Lots of love,