I have always had a 'squirmy' digestive
system, and periodically throughout my life I would have stomach cramps,
bloating etc. This intensified around the time I turned 20 (2007), and so I
went to my GP. This particular doctor knew my family history, and therefore
that my dad had Crohn's Disease - an autoimmune disorder - and promptly sent
off a blood sample to see if I had inherited it. To my relief it came back
negative, and so my symptoms were put down to Irritable Bowel Syndrome and I
was advised to eat plenty of fresh fruit, vegetables and avoid processed food
For the next few years I was a good patient and developed a passion for baking
and cooking. It became, and still is, a part of who I am; I have gained a
reputation among friends and colleagues of being 'the healthy one' and I love
it when people come to me for recipe inspiration and tips.
In June 2012 my dad died from complications associated with Crohn's Disease. It
was a very upsetting and confusing time; one moment we were planning a family
holiday to Portugal and the next we were planning his funeral. I miss him
In September 2013 I went to see another
doctor. Over the summer I had removed lactose products from my diet in the hope
that I would start to feel better, but I wasn't getting the results I hoped
for. The GP looked at my history and ordered three blood tests for colon
cancer, Crohn's (again) and Coeliac (celiac) disease. She said that this was
mainly to rule these out so I could be then referred to a dietitian. I was
called back in a week later, and informed that I had tested positive for
Coeliac antibodies, which I believed to be a confirmation of the disease. The
doctor said that the next stage was to confirm or rule out this diagnosis by
referring me to a gastrointestinal department for further testing, although she
wasn't sure what that would involve. I left the GP with a whirling head, and
immediately started researching. I found myself staring open mouthed at the
lists of signs and symptoms, nodding in disbelief as I recognised so many of
them. I discovered that a referral through the NHS could take up to 18 weeks,
and so all I could do in the meantime was keep researching while I waited.
The main discoveries were that Coeliac disease is an autoimmune
disorder, and that having a parent with a similar condition can predispose
you to inheriting one. Unlike Crohn's however the symptoms cannot be controlled
with steroids or medications, but only by adopting a strict lifelong
gluten-free diet. Gluten can be found in:
- Barley (malt, malt flavoring and malt vinegar are usually made from
- Triticale (a cross between wheat and rye)
- Durum flour
- Graham flour
For the next few years I was a good patient and developed a passion for baking and cooking. It became, and still is, a part of who I am; I have gained a reputation among friends and colleagues of being 'the healthy one' and I love it when people come to me for recipe inspiration and tips.
In June 2012 my dad died from complications associated with Crohn's Disease. It was a very upsetting and confusing time; one moment we were planning a family holiday to Portugal and the next we were planning his funeral. I miss him terribly.
The main discoveries were that Coeliac disease is an autoimmune disorder, and that having a parent with a similar condition can predispose you to inheriting one. Unlike Crohn's however the symptoms cannot be controlled with steroids or medications, but only by adopting a strict lifelong gluten-free diet. Gluten can be found in:
- Barley (malt, malt flavoring and malt vinegar are usually made from barley)
- Triticale (a cross between wheat and rye)
- Durum flour
- Graham flour
"Hang on a minute?" I thought, "isn't that pretty much in EVERYTHING I EAT?!". Yes and no. I was very disheartened at this point, and all I could think about were the foods and drinks I couldn't have after diagnosis. Pizza, pasta, bread, biscuits, cakes and beer "...oh beer is my drink of choice nooo!" Once I had got over the initial shock, I went on to discover that there was plenty that I could eat (and booze I could drink). I found some fantastic websites dedicated to gluten free cooking, and loads of gluten free alternatives to western diet staples. I started to feel a bit better.
A month later, I received a phonecall from the GI department asking me to come in for a gastroscopy the following week. The NHS describes this below:
"A gastroscopy is a medical procedure during which a thin, flexible tube called an endoscope is used to look inside the stomach. It is also known as an endoscopy. The endoscope has a light and a camera on one end. The camera is used to relay images of the inside of your body to a television monitor.
It is often carried out under sedation, which means you will not be asleep during the procedure but you will be very drowsy and have little awareness of what is going on. Alternatively, your throat can be numbed with a local anaesthetic spray. The doctor carrying out the procedure will place the endoscope in the back of your mouth and you will be asked to swallow the first part of the tube. The endoscope is then guided down your oesophagus and into your stomach. A gastroscopy can take around 20-40 minutes to perform."
Gulp (pun intended).
6 November I had my test at Freeman Hospital, Newcastle. I was very nervous while I waited, especially after the nurse went through the procedure, admitting that the test was not a very nice one!
I left Chris in the waiting room once I was called through and the next hour felt like fifteen minutes. I was introduced to the endoscopist who inserted a cannula into my arm and sprayed the back of my throat with a numbing spray - tasted like over ripe bananas mixed with antiseptic. I then lost the ability to swallow, but that didn't bother me for some reason. The nurse took over and I was hooked up to blood pressure machine and oxygen was administered through a nostril cannula. Then the bed lowered down, I was asked to roll onto my left hand side and a blanket was put over me.
Just as I thought they'd forgotten to give me sedation they popped the first dose in through my arm. Instantly a wave of drowsiness came over me and they inserted a mouth guard over my teeth (to protect my teeth and their equipment). Then the second dose of sedative was provided and I was told to close my eyes.
I don't remember any other specifics, only that a nurse was stroking me (my head? my arm?) murmuring that I was doing well and it was nearly over. No gagging because I was so relaxed, not much burping and most importantly, no pain! :-)
Next thing I was fully aware of was a nurse wheeling me into recovery. No sore throat, just a bit of bloating (which I'm quite used to actually) and I was able to leave after half an hour - though I was a little wobbly on my feet.
My recommendation for anyone who is going to have an endoscopy/gastroscopy is to opt for sedation. That way it's over before you know it, you have an excuse to chill out afterwards and let someone cook for you :-P
They took some biopsies which needed to be examined, and then a report was to be sent to my doctor who would go over the results with me the following week.
I had a two week wait for my results, during which time I decided that action was better than inaction and started a gluten free diet. I had a couple of days of relief, followed by a remission of symptoms. It was the second week that I noticed an improvement, and this backed up a Coeliac disease diagnosis.
This is why I was quite surprised with my biopsy results.
I received a letter from the consultant which stated that no physical evidence for Coeliac disease had been found - my insides looked happy. The consultant wrote that I should feel "very reassured" by this.
Actually, I wasn't. I didn't understand how a positive blood test could be overruled by a biopsy. So I gave him a call.
He was more than happy to answer my questions and explain my situation. I learned the following:
- I'd actually had two blood tests for Coeliac disease. One came back negative, and the other positive. GPs often cannot read blood test reports. In my case, my doctor had used the words 'positive' but had failed to explain that this was only for one blood test and that I only had a 10% chance of having the disease. Thanks for that.
- It is likely that if I continue to feel better gluten free then I have a type of Irritable Bowel Syndrome called Non-Coeliac Gluten Sensitivity.
Ever since I have been trying out all sorts of different ways of eating. Everyone has a body unique to them, including the digestive system, tastes and ethical preferences, so it makes sense that everyone has a custom made dietary plan. Unfortunately I have not had my ‘halleluiah – this is the right diet for me!’ moment yet although I have come close with the Paleo diet and get closer every day. It is simply a case of trial and error, being patient and mindful, knowing that with each passing week I am getting to know myself a bit better.
Check out my Meal Plan section to discover my top tips for saving money, avoiding binges and ‘I have nothing to eat!’ moments, and successfully meeting goals.