Travelling With Coeliac
My husband and I have made the decision to travel for an extended period with no timeline on when we will return to normal domestic existence.
We’ve purchased a boat in England and plan to spend the next several years cruising the rivers, canals and coastlines of Europe. When it gets too cold in Europe we will “hibernate” our boat, tuck her into a marina somewhere and follow the sun.
No doubt we will face plenty of challenges and one of these is the issue of travelling with coeliac. We will be visiting different countries where English is not the prevailing language, encountering different cultures and in some circumstances, might be “off the beaten track” to some degree.
How will I cope?
My Coeliac Journey – Where did it all start?
I remember the moment so well. I was eating the sandwich provided by the hospital after an endoscopy procedure when my Gastroenterologist came over, knelt beside my chair and said “well that will be the last bread you will ever eat! You have Coeliac.”
I just looked at him puzzled. In the first instance, he had taken me by surprise, I was still feeling the effects of the drugs and not quite with it. I was also unsure what he had just said as I had never heard of coeliac disease.
It was 2005, I was 44 years old.
I had been struggling for a few years maintaining my iron within a healthy range and it had been determined it was not connected to anything female related. Blood tests were done and my doctor prescribed iron tablets. After the obligatory three months of taking the iron tablets it was back to the GP for a check-up and my iron levels were back on track. Three months later though without the tablets, my iron levels had slipped once again below a healthy level. The cycle continued, off and on the tablets for almost three years which became very frustrating.
I eventually decided to stop taking the tablets and then one day while waiting at traffic lights on the way to work, I burst into tears. Diagnosis – I was anemic.
The only thing left at this point was an endoscopy to check for signs of internal bleeding to see whether this could be the cause of my low iron count. Hence the visit to the hospital for the procedure and my last sandwich. The Gastroenterologist said he didn’t need the biopsy report (but it was done for the record) to see that I had coeliac. He declared that it wasn’t the worst case he had seen, but close to it.
The doctors told me at that stage, they didn’t regard the iron deficiency as being connected to the coeliac. So how could the damage be so advanced yet I had experienced no symptoms? I’m what they call “Asymptomatic” meaning I present no symptoms from the allergic reaction, I don’t suffer most of the effects of the disease as others with coeliac do. If I do eat products containing gluten however, I know it’s causing damage to my internal systems and may eventually lead to big health problems like cancer.
I immediately went on a strict gluten free diet which wasn’t easy at the time due to the lack of knowledge and awareness by virtually everyone. Restaurants didn’t understand and thought I was just a demanding, problem customer, supermarkets didn’t cater for my needs and even friends and family thought I was overreacting.
Times change and these days there is not only a lot more awareness but also products and information out there for sufferers of this disease.
After almost a decade on a relatively strict gluten free diet, I seem to have become more sensitive, so when I stray and have something “naughty” which happens on purpose very occasionally but by accident a little more often, I tend to suffer the consequences with bloating and some uncomfortable stomach pains.
Follow my coeliac travel journey
As we travel I will be sharing my experiences through this blog. You’ll be able to see tips and hints of what I did well and the not so good.
I’d appreciate any feedback and suggestions you may have.
I’d also love to hear from others travelling with coeliac and what has worked for them.