It took me about 15 years to find out that I had a problem with gluten. I’d suffered from irritable bowel syndrome (IBS) ever since a truly awful attack of food poisoning when I was 12. My life was dominated by symptoms of constipation, diarrhoea, bloating, and severe abdominal pain that were sometimes mild, but more often all-consuming.
On top of the purely physical symptoms, I also had to cope with the embarrassment factor of living with a bowel problem. The way I dealt with this was typical of many IBS sufferers – I kept it quiet for many years, telling no-one, until I just couldn't cope by myself.
When I did start to open up, friends and family were (mostly) kind and supportive, but it was still incredibly difficult to talk about my symptoms in any detail. Even talking to doctors was an ordeal. I knew that in reality doctors hear all kinds of private, personal things, but that didn't make it any easier to say, "I get really, really constipated" out loud. In the end it was the sheer pain that forced me to seek help; if my IBS had been a little milder I might never have come out of the IBS closet.
Medical advice - or the lack of it...
The medical advice I had received was lacklustre at best. Once it had been established that I had IBS and not a more ‘serious’ condition, the doctors pretty much told me to get on with things, take Colofac now and then, and only come back if my symptoms got worse. I couldn’t really imagine how my symptoms could get worse without my whole life falling apart, so it was clear that I was going to have to find my own solution.
The internet was just beginning to take off at this time, so I started searching for some treatment ideas online. What I found most useful was reading the personal experiences of fellow IBS sufferers – people who knew exactly what IBS was like, who had been where I was now and knew the way out.
I set up a website called IBS Tales specifically to collect these stories and learn more about the treatments, diets and supplements that my fellow sufferers were using to free themselves from their pain. There were so many ideas, from prescription medications to exclusion diets to alternative therapies such as colonics, that it was a little overwhelming.
What I decided to do first was look at my diet. It seemed obvious that the food I was eating could be affecting my bowel habits; after all, even healthy people need to eat a decent diet to keep their digestive system working properly. What was less obvious was which foods might be causing my problems.
Choosing an appropriate diet
To help me choose a suitable diet I arranged a consultation with a nutritionist over the phone. Discussing your bowel habits with a stranger is never a fun thing to do, but at least the nutritionist came up with a plan – a gluten-free diet.
I’d heard of a gluten-free diet as a treatment for coeliac disease, but I hadn’t realized that it was a common treatment for IBS as well. A little more research on the internet showed that gluten and wheat are actually commonly cited as problem foods for IBS sufferers, so I decided to give the gluten-free diet a go. (A gluten-free diet is also a wheat-free diet, although a wheat-free diet is not gluten-free.)
The first thing to do was educate myself about gluten. I found out that gluten is a protein found in wheat, barley and rye, and some people may be sensitive to the proteins in oats as well. So the first step was obvious – I needed to cut out bread, cake, and anything made from standard flour.
Tracking down the gluten
The next step was more difficult. Gluten is used as a thickener in all kinds of foods, and turns up in the most unlikely places. Wafer thin ham, for example. Or crisps. Or soup. It’s so ubiquitous that a gluten-free diet involves careful scrutiny of any food item that isn’t completely unprocessed. If it’s not a shiny new apple, it needs checking.
Luckily for me, the higher profile of allergies in the media, and especially the potentially fatal nut allergies, had led supermarkets and food manufacturers to label their foods with ‘allergy information’ warnings. These warnings clearly state whether a food contains gluten, peanuts, milk, or various other allergens that might cause health problems. (My favourite label so far said, ‘May contain molluscs’, although it was slightly worrying that they didn’t seem entirely sure one way or the other…)
I started reading labels religiously. I also started trying to simplify my diet. It seemed a safe bet that lots of processed ingredients and unknown additives wouldn’t be doing my bowel much good, and if I could eat basic meat, fish and vegetable dishes then I wouldn’t have to worry about extra nasties.
I also investigated the range of gluten-free products available. I found gluten-free bread, cake and pasta in the local health food shop, although these products turned out to be very expensive and not particularly tasty. It was clear that there were going to be some sacrifices involved in this diet, but I was ready to try anything to get rid of the IBS.
I went completely gluten-free, and something wonderful happened – I started to feel well again. After only a few weeks on the diet my stomach had improved, I was in much less pain, and my bowel began to behave like a normal bowel should. This was incredible!
After a few months on the gluten-free diet I was feeling so much better. I still had some symptoms of IBS though, including pain from constipation, and so I decided to add in magnesium supplements and fibre supplements to my diet. Magnesium is a natural laxative and fibre supplements are often recommended for both constipation and diarrhoea sufferers.
This new combination seemed to be the magic bullet I was looking for, and finally, after all those years, I had found a treatment regime that really worked for me.
Five years on, and the treatment is still going strong.I’m not cured: I have lapses, and wobbles, and times when my bowel throws a tantrum. But I have never had to return to those dark days when irritable bowel syndrome ruled and ruined my life.
Thankfully, gluten-free food ranges have improved almost beyond recognition in the years since I first tried them. I’ll be munching on gluten-free mince pies at Christmas this year, for example, and the bread I now eat tastes almost exactly like normal bread.
It has to be said though that following a gluten-free
diet isn’t easy. There are times when I have fallen off the wagon, but I usually pay for it later with gastrointestinal symptoms, so it doesn’t happen all that often.
If I have to be glutenless for the rest of my life then that seems a small price to pay for some working intestines.
Sophie Lee is the author of Sophie’s Story: My 20-Year Battle with Irritable Bowel Syndrome
and runs the website IBS Tales: you can order the book here.
Ed: For more on extreme gluten sensitivity, see www.trulyglutenfree.co.uk
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