Apologies, I haven’t blogged in such a long time! (Normal opening sentence and I appreciate your time if you are reading this.) I can’t even remember what I last posted. I vaguely remember writing about Crohns; breaking it down into little sections and the next part would be Disease; well anyway for now i’ve decided to sack that off because so much has happened in a short space of time.
Since my last post 14th Feb, I have been achieving remission with my Crohn’s which is amazing news. However I received a phone call before my colonoscopy and some tests had shown that I could be Coeliac as well, this was revealed from my first Gastroscopy. I was advised by my Nurse (Guardian Angel) not to GOOGLE it or research it or panic. Admittedly, I did all 3. I mean, why would I not? What else in my life could go wrong? I love food and anything to do with it, this could fundamentally be life-changing and how was I to deal with it?
Following the phone call, a colonoscopy and gastroscopy was booked for the same appointment and I was to carry out the Gluten Challenge.This is a 6 week challenge where I had to eat 4 slices of bread every day for 6weeks!! I mean don’t get me wrong I love (loved) a sandwich as much as the next person but this sparked hell. One week in and I started being sick, bloated and experiencing over whelming fatigue. It was dropped to 2 slices a day and this was still a nightmare, it was the longest 6 weeks of my life, I had never been so excited for a gastroscopy/colonoscopy.
Finally, the date arrived, the usual dynamite had been taken and my usual taxi driver (bestest Mark) arrived to take me to the fun and giggles we normally have on each of my hospital appointments. Its like a tradition. Being me; turned up with my make up on as if nothing was going to happen, and I strolled into the room like a boss. I was assured that the camera would be changed for each procedure, this I thought was good to know. Gastroscopy was first, there is no sensation like the throat numbing spray, but this time it made me sick 😦 those who know me well will know I hate being sick (YUK) Again, I had another ulcer and inflammation. Then followed the colonoscopy, painful this time, but still was not as bad as the one on gas and air, but this time I had polyps removed. I couldn’t help but think there is always something.
It took a while for the results to come through but I as far as I was aware I wasn’t Coeliac but little did I know a whole can of worms was about to open. The weeks went by and I started to feel fatigued, more so than normal, back to being in the bathroom 10 times a day, feeling anxious and depressed. Originally I put down to changing my job, relationship issues and generally feeling stressed out. I had a weeks holiday from work and felt so poorly for the whole trip, I wasn’t able to go back to work and ended up signed off for the week with a suspected flare up. I tried to go back to work but ended up at the Lister hospital, I was in agony and fed up being sick and stuck in the bathroom. Feeling isolated and lonely I was once again admitted and put on a drip. Is this a feeling I should start getting used to I wondered, all I wanted to do is sleep. This time was different because they didn’t know what caused the flare up. This time I saw a mental health team because I had, had enough. Enough of the bullshit, enough of being on my own and enough of my body hating me.
The next day I was sent home again on the promise of if I deteriorate I am to go straight back to the hospital. The next day I was in bed, but the home phone was ringing, who is this I thought. It was the Dr I had seen in the hospital, he was baffled by how poorly I was feeling and looked into my results to find that my biopsies had revealed I was Ceoliac and the blood tests had shown a false positive. My life is now Gluten and Wheat free. Excuse me whilst I pop open the champagne to celebrate. I felt awful, I still hadn’t eaten properly but now I was faced with what should I eat??
As far as I know, Coeliac is common with Crohns.
What is coeliac disease?
How common is coeliac disease?
Coeliac 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 coeliac disease but don’t yet know. If a first degree family member (such as mother, father, sister or brother) has the condition then the chances of having it increase to one in 10.
What causes coeliac disease?
Coeliac disease is caused by a reaction of the immune system to gluten – a protein found in wheat, barley and rye. When someone with coeliac disease eats gluten, their immune system reacts by damaging the lining of the small intestine.
What are the symptoms of coeliac disease?
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.
What is the treatment for coeliac disease?
Once diagnosed, the only treatment for coeliac disease is a gluten-free diet. Gluten is found in wheat, barley and rye. Some people are also sensitive to oats. Once gluten is removed from the diet, you should start to feel much better.
The news was hard to take in and I am still struggling with it now, but as normal I take each day as it comes. My next post will include more in depth information on Coeliac when I have got my head around it myself. I am also aiming to do a post on anxiety.
For now though, the challenge continues……