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Patient’s story in British Medical Journal demonstrates why we doctors sometimes need to listen to our patients more

Posted Dec 14 2012 10:11pm

Two weeks ago I wrote about an article in the British Medical Journal which recognised the fact that it’s possible for someone to suffer from a sensitivity to gluten (a protein found in wheat and other grains) even if coeliac disease (a form of gluten sensitivity) has been eliminated as a diagnosis. This recognition is a huge step forward, I think. I’m hoping that, among other things, that it will lead to practitioners being less dismissive of individuals who sense they have a sensitivity to gluten or have experience considerable improvement in their symptoms on exclusion of gluten (even when tests for coeliac disease have proved negative).

I was thinking about this today as I read the print edition of the BMJ, which includes a first hand account from a patient who for many years suffered a wide range of symptoms, namely:

…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.

He also had bladder pain which ended up being diagnosed as ‘interstitial cystitis’ (chronic inflammation in the bladder wall). He had found that his bladder symptoms and bowel symptoms tended to coincide, which made him think they might have a common root. Also, he found his symptoms improved considerably if he did not eat for 24 hours. He felt strongly that his symptoms were being triggered by something he was eating (a perfectly rational idea, I would say), but when he put this to his doctors they were mystified or he was dismissed. Then he tells us that one consultant told him that people with symptoms like mine often commit suicide, adding:

I’m fairly sure he wasn’t suggesting it as a treatment option, but I certainly did feel very down about my condition.

After a decade of flailing around (through no fault of his own) and continued deterioration, someone on an internet forum suggested he try a gluten- and lactose-free diet. He continues:

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.”

Yet, the man in question bears his doctors no ill-will, adding:

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.

I certainly agree with the idea that no-one was looking at the big picture. In a medical culture which generally holds specialists in higher esteem than generalists, there is a tendency for some practitioners to get ever-focused. But while the author of this piece feels no ill will, I wouldn’t have been surprised if he had, though. And that’s because he gave his doctors major clues to what might be going on, and was essentially dismissed.

I remember many years ago my mother (a retired doctor) remarked that if doctors listen enough to their patients, they’ll often be ‘given’ the diagnosis. She’s right, I think. And I also think that we doctors might do well to take heed of my mum’s remark as well as what our patients tell us.

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