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

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.

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

  1. Rita 14 December 2012 at 9:32 pm #

    You make two terrific points in this article: first, that doctors should listen to their patients (what a novel concept!) and two, that food allergies, especially to wheat and dairy, are common and can have a powerfully negative effect on health.

    Just last night I heard a terrific podcast-interview with Dr. William Davis, author of “Wheat Belly,” on the website of Paleo expert Robb Wolf. Dr. Davis repeatedly made the point that in his vast experience, elimination of wheat was the single most beneficial thing he could recommend to his patients, whether they tested positive for celiac or not. One dramatic anecdote concerned a woman on the verge of having a colostomy because nothing more could be done to heal a case of unrelenting ulcerative colitis that she’d had for years. Dr. Davis suggested she go wheat-free and she told him she had already tested negative for celiac. Nevertheless, since she had nothing to lose, she gave it a try. Three months later she was disease free, off her medications and healthier than she’d been in years.

  2. Basandere 14 December 2012 at 10:02 pm #

    Nice! Now all we need is doctors to read this and heed your advice. :)
    Seriously, I’ve been wanting a doctor who listens for years, and I’ve never found one. I believe this is also the main reason for the popularity of homoeopaths, TCM practitioners and other “alternative healers” — listening is an integral part of their services, and without pressure or constraints (time and otherwise) from insurance providers, health care institutions or physicians’ associations, they can actually provide patients with the attention that doctors who are “stuck in the system” appear to find hard to muster.

  3. Jennifer Eloff 14 December 2012 at 10:22 pm #

    I agree with your mother. Clever lady! :)

  4. Bill 14 December 2012 at 11:48 pm #

    I have been gluten/gliadin free for 6 years now. Alopecia Areata gone, osteoporosis I had in my elbow for 35 years drastically improved, overall joint flexibility drastically improved. Grey hair, less than 5 years ago and a fuller head of hair. Vision improved, I don’t need spectacles at 58.
    Yet when I mention this to my GPs they show no interest whatsoever!

  5. Jo 14 December 2012 at 11:57 pm #

    On his website, Dr Davis reported a women with a similar story to the one Rita recounts (it could be the same person). Despite the fact that all of her symptoms had disappeared, the doctor was so horrified that she had given up wheat, that he insisted she add it back in! Very shocking indeed.

  6. Ian Day 15 December 2012 at 12:17 am #

    4 1/2 years ago I was suffering a range of problems associated with diabetes:
    chronic tiredness; crippling muscle pain; beginning of retinopathy; reduced kidney function, but not digestive problems.
    My HbA1c was 6.8 & had not been above 7 since diagnosis at 8.6 12 years ago.
    I had been following the Diabetes UK starchy carb diet, but then switch to a low carb diet. The symptoms all cleared in 3 months, & I am well & active at 73.
    I discussed the change in diet with Diabetes UK careline, & she suggested that the improvement could be due to removal of wheat from my diet, rather than low carb.
    Could she be right? I am not going to experiment with wheat in my diet.
    But could wheat be a significant health problem for many undiagnosed conditions?

  7. Dr. Bill Wilson 15 December 2012 at 1:05 am #

    This is nothing new to people who have tried a Paleo style diet. I think that we must finally admit that certain elements of our diet are toxic. Grain based carbohydrates, legumes and dairy are poorly tolerated by many people. if you eliminate these elements from your diet, there’s a good chance that you will enjoy improved health. Sometimes things are much more simple simple than they seem.

  8. Steve 15 December 2012 at 11:22 am #

    Why ‘Sometimes’ John? Shouldn’t GPs actively listen to their patients all the time? What is clear is that all GPs should do regular CPD on what constitutes a healthy diet together with developing an in-depth understanding of food intolerances. If nothing else, drug-budget savings and secondary referral costs should be their incentive.

  9. Sam 15 December 2012 at 12:18 pm #

    Dr Briffa, You are being too kind to the ‘specialists’ – Are they just glorified carpenters or what.? Why should a specialist be so uptight, why could he/she not tell the patient that they should consult someone who looks at ‘whole picture’ if they are unable to climb down and look at it – A decade of suffering resolved by a suggestion from a friend does not hold the profession, as it exists today, in good light.

  10. david manovitch 15 December 2012 at 6:00 pm #

    A salutary tail for doctors and a heartening one for people in general. Giving up wheat plus low carb in general abolished my hypertension and made my bowels run like Mussolini’s trains. My GP did not appear interested either. In my experience of my profession most doctors are very blinkered. They know what they are taught and all else is superfluous. Only if new ‘medical’ knowledge comes to light is it taken seriously. If it comes from non medical science or lay people then it is ignored. Medical orthodoxy is clung to, like an alcoholic clings to his last bottle of cider, despite its lack of efficacy, viz. 2 weeks bed-rest if you had a heart attack or delivered a baby, cutting out stomachs to ‘cure’ peptic ulceration, aversion therapy to cure homosexuality. I am sure there are many other examples.

    Our diet is controlled by agri-business. medicine is controlled by big Pharma and TV provides a nice little opiate to numb us all to reality, and wash it down with cheap supermarket booze.

    Cheers! Where’s that remote?

  11. Stella 15 December 2012 at 6:42 pm #

    I have totally given up with GPs now, none of them have listened to me, my sister or my daughter. A nail fungal infection was treated with intravenous antibiotics because someone thought it was a bone infection, I was given antacids when I reported problems with swallowing, which turns out to be related to being hypothyroid and my sister just keeps being told she ‘can’t possibly be allergic to any of those things, just take an antihistamine evey day’! Like my daughter says, ‘I have lived with my body since I was born and I know it better than anyone else. Listen to me, I am listening to my body’.

  12. Cynthia 15 December 2012 at 7:05 pm #

    Doctors really should know how to listen for this and advise people. Over the last several years (in my 30s/early 40s) I developed asthma getting progressively worse. Two years ago I was put on Flovent, and subsequently suffered from lethargy, weight gain, eyebrow loss, etc. My doctor did tests and found nothing, and it never occurred to her that these might be side effects of the steroid, so I was left to flail about on my own. Fortunately Dr. Google somehow led me to the paleo diet. After a couple of months of extremely clean eating (Whole30) not only was my energy on the upswing, but I’d been able to go off the daily steroids because my asthma is no longer symptomatic except when I catch a cold. Any return to wheat and dairy causes asthma to gradually return after a few days. Incidentally a whole bunch of gut symptoms and skin symptoms that I never really even thought of as “symptoms” cleared up, and I also no longer get headaches every few days. Not once has ANY doctor EVER suggested changing my diet (except when they’re suggesting starving myself to lose weight). It was so easy and so effective to just make this change that it’s almost criminal that I’ve never been advised to try it. When I told my doctor about it, she was incurious, except to mention that the change in diet had made me lose weight (like that’s more important than being pulled out of a cycle of increasing dependency on medications).

  13. Morwenna 16 December 2012 at 2:14 am #

    Many of my patients here in Canada display gluten intolerance and it is one of the first therapeutic proprosals I discuss where relevant, where I practise as a Medical Herbalist in Ontario. Gluten containing products are more highly consumed in North American than the UK and correspondingly there is a higher incidence but getting any conventional doctor to acknowledge this is impossible partly because they are not trained in this area but also the US economy is based on sugar and thus gluten containing products. In the UK a professional registered medical herbalist would normally recognise the signs and symptoms and advise accordingly.

  14. Digby 16 December 2012 at 2:52 am #

    After 40 years of migraine headaches when I never was out of reach of my two prescriptions, on a whim decided to stop gluten, after my son had done so due to GERD and got dramatic relief, just to see how I’d feel, and six months later I have had no migrianes except twice when I accidentally got some hidden gluten. The Wheatbelly book is now my top recommendation.

  15. Terry F 17 December 2012 at 12:07 am #

    Glad to see I’m not alone in all this. For the last 3 months I’ve had 6 Drs. dancing around my fire like witch doctors waving their spears shouting, “operation, cancer, we’ll just cut it out”. finally after several weeks with Dr. Google and some books I began to treat myself. Two months later the latest ultrasound showed no evidence of cancer. I’m still angry, it’s all in their basic texts, and since I had always respected Drs to know more and guide me I’m disappointed but glad to know I’m capable of taking care of business. Thanks for listening.

  16. mamaprophet 19 December 2012 at 2:06 am #

    Can someone please advise what to use instead of dairy, I tend to eat organic butter and full fat cream and cow’s milk, also cheese, I don’t eat wheat and try to pollow the paleo diet best i can but do have trouble finding tasty substitues for dairy. I have a condition called erosive Lichen Planus of the mouth and need to eat mainly soft and spiceless foods, so not able to eat nuts and fruits because the acid burns my tongue.

  17. Elaine 21 December 2012 at 8:03 pm #

    I have been gradually changing my diet over the past 2 years due to food intolerances. One of the first to go was gluten, and I haven’t had a migraine now for 4 months. Interesting too in view of mamaprophet’s post above …. I had Lichen Planus too, but have not had a flare now in over a year. Re dairy substitutes I would recommend Kara Coconut milk (long life and sold in many supermarkets) – has added calcium. I do eat butter but cannot eat cheese, though I have recently tried unpasteurised sheep’s cheese and seem OK with that. I have told my GP about my food intolerances and what I am doing – she seems bemused rather than interested and says she has never come across anyone else with the range of so many apparently (gluten, dairy, sugar, preservatives, soya, yeast).

  18. Jilly 25 December 2012 at 6:50 pm #

    About 14 years ago, I went to my GP to explain that the severe abdominal pain I had been experiencing for some time was completely eradicated by a gluten free diet, recommended by a nutritionist. (Previously a gastroentologist had diagnosed this as diverticulitis.). My GP took a blood test to test for coeliac disease which proved negative. Her advice was to continue to follow a gluten free diet because she believed that there were many people who could not be proven to be coeliac but were gluten intolerant. She was ahead of most of the medical profession. She is a GP who truly listens to her patients. She is a person to whom you can tell anything without fear of being scoffed or sneared at. The only problem is that she is so popular that I can never get an appointment to see her these days!

  19. Veronica 26 December 2012 at 12:47 am #

    This has been my case with the medical profession as well. Since my early 20′s I’ve had a range of odd health issues, that in my 30′s, developed to pain in my hands, abdominal pain, etc. Also have dreadful bone density. Celiac blood tests have always shown up negative. Eliminated gluten and voila – got better. Yet countless GP’s and consultants refuse to acknowledge when I state health issues related to gluten and they have never endeavored to join up the dots, treating each symptom as something individual and separate rather than a jigsaw piece of the whole picture. I personally doubt the efficacy of the celiac blood test and believe it’s ‘gold standard’ status is wildly over-egged. Many GP’s also seem ignorant to the factors around the blood test, namely insuring a sufficient amount of gluten containing foods have been in the diet for at least 6 weeks prior to the test. My experience has left me not believing anything a GP or consultant says or taking their word as fact, but instead, trusting my own instincts.

  20. Pam 5 January 2013 at 2:53 pm #

    Years ago I went to a homeopath who was also a GP – and felt he was the only person who looked at my whole life style and listened! His general advice was more useful than the homeopathic bit. This was about a difficult menopause. Sadly he died some years ago.
    More recently I have had polymyalgia rheumatica and GPs’ knowledge about this seems abysmal. Maybe something to do with it mainly hitting older women? The only treatment is steroids with their unfortunate side effects. Reducing the dosage too rapidly results in a recurrence of symptoms but doctors, on the whole, seem hell bent on a rapid steroid reduction – and seem unable to hear their patients’ complaints that it isn’t working and is counter productive. Neither is the risk of possible blindness with GCA explained. I was lucky to find a doctor who allowed me to monitor the steroid dose as I felt – but this seems rare!

  21. ilona 10 January 2013 at 5:19 am #

    I suffered from allergic symptoms for more than 20 years. No doctors could tell me what I was allergic to. A few years ago I decided to try to cut out all sugars and carbohydrates from my diet. My symptoms disappeared in a few weeks. I just could not believe it. I don’t take antihistamines anymore and life is so much better now…

  22. Carmen 12 January 2013 at 2:16 pm #

    Very interesting …so many of us have these symptoms…
    Your Dear Mother was right…My last patient (a retired 95 year old Doctor) used to say to me..Carmen the one thing i hate about visiting the GP in Highgate is that they were staring at a screen when i was sitting and no eye contact…he looked for the answer on the internet…how right my Dear Dr F. was…the good old Doctors.. God Bless them all.

  23. Liz 12 August 2013 at 10:30 am #

    Almost exactly my story. I started suffering almost all these problems from 1981 onwards, and was lucky to try a detox diet 6 or 7 years later which showed me that it was something i was eating that was causing the problems. After some more experiments I found it was the gluten grains, and have stayed gluten free ever since. I didn’t say much to the surgery because I didn’t expect to be taken seriously.
    A more recent test for coeliac came back negative, though I probably didn’t eat enough of them anyway, or I wouldn’t have been able to keep working.
    But the diarrhoea, feelings of cystitis, extreme fatigue and depression recur if I ever try wheat and the other gluten grains. The symptoms act as aversion therapy for me.
    One of my daughters has the same thing, and when she went to the doctor as a teenager, 16 years ago, he didn’t offer any support for her findings, just offered to refer her to a psychologist!!

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