Coeliac disease and me

by The WellBeing Team May 31, 2013

I was in my mid-50s when I was diagnosed with coeliac disease, a serious medical condition involving strict dietary requirements. I reacted to the diagnosis with mixed emotions. I was shocked and confused and didn’t really understand how it would affect my life. On the other hand, I was relieved that my health problem had been solved.

A number of questions raced through my mind. How could changing a lifetime diet possibly make me feel better? Why did it take so long for the symptoms to appear? Will living gluten free really restore my health?

In my case coeliac disease certainly presented itself abruptly. After a lifetime of good health, I began to experience unexplained tiredness and nausea. Almost overnight I had constant diarrhoea and vomiting. This continued for months and my weight plummeted.

At first, the doctors could not solve the problem as the symptoms were similar to many other conditions. After many tests I was finally referred to a gastroenterologist. A small bowel biopsy revealed that the cause of my illness was gluten, a protein found in wheat, barley, oats and rye. This medical condition, coeliac disease, is a permanent intolerance to any food containing even traces of these grains. A strict lifelong gluten-free diet is the only treatment.

I soon discovered that living with coeliac disease in those early days involved many relapses, much frustration and a realisation that I needed to know more about the condition. This reality hit home when my husband and I decided to celebrate my newly restored health with a weekend away. At this stage I did not understand that gluten may be hidden in many foods containing starches, sauces and thickeners. I thought I had ordered a gluten-free lunch, but my symptoms returned with a vengeance. Instead of enjoying a romantic dinner that evening, my husband had pizza and I had Imodium.

After many more relapses I realised I had so much to learn before I could adjust to this new enforced lifestyle. Life was no longer simple and so many things that were previously taken for granted were no longer an option: simple things like fish and chips or takeaway chicken and salads on a hot summer night. Eating out and even dining with friends was filled with anxiety. It was time to look at the big picture and do something about it.

Of course, my main objective was to regain my health and strength. But I was also a woman on a mission with another goal and a definite time frame. Just before I became ill, I had planned my first overseas trip. I was to meet my daughter who was living in London. Our plan was to visit Scotland and then tour Europe. I was diagnosed in April 2001 and the flight was booked for September. Suddenly I was facing a new challenge and I had many difficulties to conquer before I could even consider going ahead.

I have always believed the saying “forewarned is forearmed”. It was therefore totally up to me to discover all I could in order to control what I now labelled as my inconvenient disease. Top priority was to visit a dietician who was highly recommended by my gastroenterologist.

Sue is also a coeliac and over recent years has been researching the condition. She insisted that my husband come, too. By the end of the consultation, we both had a thorough understanding of the disease, its implications, the dangers of non-compliance and how to identify that little villain, gluten.

I went on a group supermarket tour in which Sue identified the “safe products” and how to interpret the new food labelling laws. I also became a member of the Coeliac Society, a great form of support with many helpful resources. The Society’s quarterly magazine provides up-to-date information on the latest research and helpful hints on recipes and availability of foods.

By the time September came I was healthy, had regained weight and was in control and ready to join my daughter in London. I completed the trip without any mishaps. Both the airline and the European tour catered for my dietary needs. Of course I did not take any risks and was well prepared by including in my luggage cereals, biscuits and snack bars. Since then I have successfully travelled to Ireland, Greece and Norfolk Island, all very coeliac-friendly countries.

My next goal was to normalise my social life so I could eat out with confidence. At first many of my friends were quite nervous about catering for me and were anxious about getting it right. I told them the essentials, but was quite embarrassed at the amount of trouble they went to. One thoughtful sister-in-law produced a totally gluten-free Christmas dinner complete with gravy, turkey with seasoning and plum pudding.

I was also hesitant about dining out, as in those early days there were few gluten-free options. This is no longer a problem as restaurants are now very coeliac aware and the food industry has an amazing variety of products.

The degree in gluten sensitivity varies for each person and over the years I have encountered what I call “lapsed coeliacs”. Some people know they have the disease but because their reactions are minimal, they occasionally indulge in the forbidden fruits. It’s not worth the risk as we don’t really know what damage is being done.

Untreated coeliac disease has been linked with bowel cancer and lymphoma. My brother, who was diagnosed in his 50s, sometimes indulged in a beer and other cravings. Sadly, he died of lymphoma in 2004. I often have that niggling thought that if he’d been diagnosed earlier or was better informed he’d be still here today.

It’s now seven years since my diagnosis and I am a fully fledged, committed coeliac leading a normal healthy life. I’m thankful I have a disease that I can control without drugs. Admittedly, it does take the spontaneity out of life as you have to be constantly aware, prepared and vigilant. But that is a small price to pay for what is an inconvenient but highly manageable disease.