Non-coeliac gluten sensitivity

The summer of 1991 was when my problems really began. I had had a severe bout of sickness and diarrhoea on holiday in Corfu. I recovered from the gut infection after I came back from holiday, but my general health continued to deteriorate over the next six to 12 months.

Then followed two decades of unexplained ill health with multiple symptoms including weakness, exhaustion, bloating, nausea, indigestion, diarrhoea, skin rashes, ingrown hairs, cracked skin, joint and muscle pain, anal leakage of undigested fat, oscillating body weight, numbness in my feet and hands, muscle spasms in my legs (especially at night), mood swings, mild depression, and disturbed sleep patterns. These symptoms fluctuated day to day, but the worst by far was a constant intense bladder pain that was eventually diagnosed as incurable and untreatable interstitial cystitis.

My interstitial cystitis has been examined by biopsy, and I have undergone many many other urinary tests over 10–15 years, including passing a camera into my bladder and inflating the bladder with fluid to watch for the classic “bleed” from the bladder wall when it is distended. My eventual diagnosis in Oxford was by a consultant in genitourinary medicine who specialises in interstitial cystitis and was a diagnosis of exclusion after all other possibilities had been eliminated. Diagnosis by exclusion is the norm for interstitial cystitis.

I received drug treatment for the interstitial cystitis, but my symptoms did not improve until I excluded gluten and lactose. They are now much better but not entirely eliminated. I eventually gave up my career, and, without the unfailing support of my wife, it would have ruined my life.

I now know that all of these symptoms stem from an intolerance or sensitivity to gluten that does not manifest itself as classic coeliac disease but which still causes many of the same bowel symptoms and can trigger other autoimmune conditions such as arthritis, interstitial cystitis, and neurological conditions (including pins and needles and numbness). Over the next 20 years, I repeatedly told medical professionals that my bladder pain was always much worse when my bowel symptoms were particularly bad and that the two must be linked. Most importantly, I felt strongly that it was caused by something I was eating. In particular, I had noticed that when I had either starved myself for 24 hours or undergone a bowel cleanse before a medical procedure my symptoms seemed to disappear or were much reduced.

Medical professionals seemed mystified or dismissive and had no explanation. I well remember being told by one consultant that there was nothing that could link bowel symptoms to bladder symptoms or any other symptom I had. Another young consultant told me that people with symptoms like mine often commit suicide. I’m fairly sure he wasn’t suggesting it as a treatment option, but I certainly did feel very down about my condition.

Eventually, after about a decade, I gave up seeking a cure or diagnosis of my illness. I tried to live life as best and as fully as I could. By now I had two young children, and I tried to focus on the positives and counted my blessings. However, in Christmas 2006 I had a severe bout of biliary colic and eventually had my gall bladder removed (yet another condition I now know may be linked to gluten sensitivity), but my health continued to deteriorate after the operation.

By summer 2008, I was unable to walk up a hill and was gradually becoming house bound. The internet became an important link to the outside world, and I began a desperate search for some clue as to what was wrong with me. A chance conversation in a chat room forum with someone who had had exactly my symptoms and the suggestion that I try excluding gluten (and lactose) from my diet was how I eventually reached my own initial self diagnosis. The results were dramatic. Within a week of excluding gluten and lactose from my diet, all my symptoms had dramatically improved in just the same way as when I previously starved myself. I wasn’t starving myself now though, I was just not eating gluten and lactose. I felt better and had more energy than I had in decades.

I went to see the consultant who had carried out the gall bladder operation and excitedly told him about my discovery that gluten and lactose were the source of all my health problems and how dramatic had been the results of excluding them from my diet even after a few weeks. He seemed quite uninterested but told me to carry on with the gluten and lactose exclusion diet “if you find it is working for you.”

After experimenting with my diet, I have found that I react severely to even small traces of both gluten and lactose. Accidental exposure to either of them brings all my symptoms back in a matter of hours, and the symptoms take several days to subside again. I can almost always identify the source of the accidental exposure, and it happens very rarely now as my experience and knowledge of my condition and food ingredients have increased.

Despite the success with my exclusion diet, it wasn’t until early 2012 that I finally got a proper diagnosis of my condition. After a chance internet search, I found medical research papers on gluten sensitivity and intolerance written by Dr Kamran Rostami. I have a degree in biochemistry, and those papers were a revelation. From my own personal experience and from the point of view of my training as a scientist, his papers made complete sense of everything that I had experienced. I had no idea that there was such a large and growing body of people expressing a wide spectrum of symptoms that seem to be linked to gluten intolerance and sensitivity but who did not exhibit classic coeliac disease. Like me, many of them had remained undiagnosed for years.

I immediately asked my GP to get me an appointment with Dr Rostami, who, unbeknown to me, was working just a few miles away in my local hospital. Before Dr Rostami, no medical professional had ever said the word “gluten” to me over the entire 20 years of my ill health. However, I don’t feel bitter about the medical practitioners who failed to diagnose my health problems. Each was highly skilled in his or her own specialty, but nobody was looking at the whole picture. A specialist in chronic bladder pain is not a specialist in gastrointestinal medicine.

As a result of my conversations with Dr Rostami, I strongly suspect that my problems with gluten really began long before 1991 and that the gut infection I had on holiday was simply a trigger that made my gut more permeable to gluten (and lactose) and eventually caused the emergence of more severe symptoms. Looking back, it is clear to me that I exhibited early signs of gluten intolerance and sensitivity in my childhood. I weighed under 6 stone (38 kg) when I was 12 years old. In 1991 I weighed about 11 st 7 lb (73 kg), but after my symptoms started, my weight fell to under 11 st (70 kg) and I felt very weak. Then my weight ballooned up to 13 st 7 lb (86 kg) after my gall bladder was removed in 2008. Finally, after I had excluded gluten, it fell to 11 st 4 lb over a few months, where it remains today. To be honest, the most important issue with my weight is that it can easily rise 4-7 lb (2-3 kg) overnight if I accidentally eat gluten, as I fill up with fluid when my immune system goes into overdrive.

I had mild depression throughout my teenage years, was small and underweight, and went through puberty later than the other boys in my class at school. I also used to gorge on bread, cakes, and biscuits, but I was always thin despite the thousands of calories I was eating. I have read that it is common for people to be addicted to the foodstuff that does them most harm. That was certainly true in my case. Paradoxically, as the son of a farmer and growing up on a farm, I used to help my father grow wheat, and he was paid a higher price by merchants if he could grow wheat with high levels of gluten for bread and biscuit making. Like my father, I used to chew the wheat grains at harvest time to check for hardness as we decided when to harvest the crop. Every year I got itchy bleeding rashes on my ankles and elbows that went away as soon as harvest finished. Now I know why.