Good medical practice is about many things, one of the most important of which I reckon is simply listening. I can’t tell you the number of times individuals have told me they said something potentially important to their doctor, only for it to be either dismissed or simply ignored. Some patients end up being castigated for having the ‘temerity’ to perhaps suggest something (such as a diagnosis) that was not thought up by their doctor or was not consistent with the opinion he or she had already given. I’m not sure this makes for the best health care.
One of the first patients I ever saw when I started in practice was a diabetic who claimed that she could tell from her vision what her blood sugar levels were doing. She claimed that the amount of ‘mistiness’ of her vision correlated well with her blood sugar levels as measured using a meter. When she told her doctor about this he told her she was talking ‘rubbish’ and that this ‘just can’t happen’. But how could he have possibly known that, is my question. Of course he can’t: it’s an opinion, and in expressing it in the way that he did he also risked jeopardising his relationship with his patient too.
Now, in this specific instance, the effects of the failure of this lady’s doctor to listen to her and believe her were unlikely to be too dire. I mean the exchange may well have led to some irritation, upset and loss of respect, but it’s unlikely that the lady would come to much harm as a result of this. However, in healthcare failing to listen to patients can have significant negative consequences, and my blog today is specifically about an example of this. If you are a practising doctor or dietician, you may want to avert turn away now.
I saw a 4-year-old girl in practice this week, brought in by her parents. The mother did most of the talking. In the last year, the girl had developed chronic diarrhoea. The mother decided to keep a food diary and through this thought she had identified wheat as the cause of her daughter’s diarrhoea. She eliminated wheat from her daughter’s diet, and the diarrhoea resolved.
Meanwhile, the girl had been referred to a gastroenterologist. When they consulted him, he recommended that the girl be tested for coeliac disease (gluten sensitivity). The test came back negative, though there was some talk that because the child had not been eating wheat (wheat is the main gluten-containing food in the UK diet) at the time of the test, that the test might have missed the diagnosis (in other words, the test may have given a ‘false negative’ result).
The girl was referred by the gastroenterologist to a paediatric dietician. The mother gave the history again (wheat in the diet – diarrhoea, no wheat in the diet – no diarrhoea) and despite this, the dietician recommended a diet rich in grain including wheat. The child’s parents thought this was odd (given the history), but resolved that health professionals must know what they’re doing and went on to their daughter on the recommended diet. Loe and behold, the diarrhoea returned.
Not keen on the idea that she was knowingly feeding her daughter a diet that was clearly making her child sick, the mother matters into her own hands again and re-eliminated wheat from her daughter’s diet. Again the diarrhoea resolved.
After this, it was time to go back to see the gastroenterologist. The mother gave the story again, with the addendum that the dietician had recommended a diet which made her child sick, so she had reverted to the original diet and her child appeared to be well again. The gastroenterologist, instead of saying ‘thanks for doing my job for me’ berated this woman for being ‘irresponsible’ for taking her daughter’s diet and health into her own hands.
In a degree of desperation and confusion with ‘I’m a bad mother’ thoughts circulating in her head, the mother brought her to me to seek my advice. I pointed out that I’m not sure she needed my advice, as it was obvious (to me, at least) that she had handled her child’s health issue as logically and responsibly as any mother could.
She mentioned that part of the reason that she was unsure about whether she’d done the right thing is because she didn’t have a ‘scientific background’. I pointed out that both the doctor and dietician may be regarded as people with a scientific background, but look where that had got this mother and her daughter.
The fundamental problem here was that neither the doctor nor the dietician had listened to this child’s mother. She maintained to me she had given a very clear story to these people: wheat in the diet caused the child to have diarrhoea, while with no wheat in the diet the child was well. It’s not rocket science.
What is it, though, that causes health professionals to sometimes ignore what patients are telling them, even when it’s blindingly obvious the best thing to do is listen?
Some of the issue here, may relate to an inability to get out of one belief system and into another. If, for instance, someone erroneously believes that a diet rich in grain and wheat is healthy, then it can be a bit of a stretch for them put that to one side, even when sitting before them appears to be a classic exception to their ‘rule’.
Another issue that I think is all too common in medicine is the idea that we health professionals are the ones that know about health, and if someone encroaches on that we can feel like our position has been somewhat usurped. I, like some other practitioners, welcome suggestions from my patients. Not only is it an opportunity to learn, I’ve found they’re almost always right too.
Now just imagine for a moment what would have happened if this mother had, in the long term, taken the advice to feed her daughter the very food that is clearly provoking her diarrhoea? Not only do we have a sick child, but we now have a mother who may feel inadequate for ever doubting the opinion of the health professionals from whom she has sought advice. Not an ideal situation, at the root of which were a couple of health professionals who did a lot of talking but not a whole lot of listening. Fortunately, the mother in the end decided to do some selective deafness of her own.
There’s an addendum to this story I’d like to add. Near the end of the consultation the father of the child told me he had been appalled by the standard of medical care they had been offered (and rightly so, I think). He then recounted an interesting story: after the birth of their first daughter (the daughter with the wheat sensitivity was number two) the mother was quite unwell. She was extremely tired and lethargic, and was found to have some abnormal findings on her ECG (heart trace). The doctors were unable to find out what was wrong with her. The father, in desperation, ‘googled’ his wife’s symptoms and through this came up with a possible diagnosis of hypothyroidism (low thyroid function). He took the diagnosis to his wife’s doctors and asked them to test specifically for this condition. Sure enough, it turned out to be what was wrong with her. By the end of the consultation, I was beginning to wonder whether these parents in front of me had missed their vocations.
As I said, good healthcare is about many things, but I reckon an essential part of this is listening to and honouring our patients experiences and opinions. We health professionals ignore our patients at our, and our patients’, peril.
“It seems you’re suggesting I should have called people whose identity I do not know. ”
It would have been a good idea to ask the parents for the identity of the gastroenterologist and dietitian so you could call them and clarify the situation. As you hadn’t spoken to the dietitian, how can you state with any certainty that “At no point did the dietitian say that this was her thinking” ?
You have assumed you had the full story from the parents. What I’m actually suggesting to you is that making this assumption might make for a good anecdote but probably doesn’t make for good clinical practice.
Just to try and make this clearer. “Did you call the gastroenterologist or the dietitian to try and clarify this?” was a rhetorical question, as it was clear you hadn’t. As you hadn’t, you can’t be sure you had the full picture, which was my point.
Also Dr B, as an impartial observer I really can’t understand why you are so upset about why you think you have been ‘deliberately misrepresent[ed]…so flagrantly’. Catherine Collins said she may have been mistaken about you lecturing at ION and that this misconception is common on other blogs.
But why do you view this as such an egregious slight on your professional reputation? You’ve attended lectures and seminars at ION, surely being thought to have delivered lectures and seminars there would not be detrimental to your reputation? OK, the description may be inaccurate but so was the Highgate Hospital’s description of you as a ‘nutritionist’, which given its unregulated status is a term that could be perceived as being detrimental to a qualified medial professional.
Perhaps it’s easier to focus on this point than the science?
“It seems you’re suggesting I should have called people whose identity I do not know. ross, come on, that’s just stoopid.”
I’m intrigued then Dr Briffa that you don’t feel it necessary to get a full background history from medical colleagues in order to inform your own practice. Given that this child had been seen by a gastroenterologist and had undergone investigations surely it would be good practice (and at the very least professional) to have some sort of communication or dialogue. Would you not agree?
p.s. it’s stupid not stoopid!
Dr B –
At the risk of sounding political, in answer to your mewlings that ‘I misrepresented you’ may I draw the honourable gentleman to the earlier replies?
Post 88 (yawn) has already replied to your accusations (yawn)
Thank you for clarifying that you did not report said professionals – or dietitian dunderheads as you so politely put it.
So I take it that you consider the evidence of the parents inadequate or unqualified enough to justify your scathing comments in the original post.
thank you for clarifying
Gill
Gilly, focus if you will on these words for a moment and contemplate their meaning: “I haven’t reported the ‘professionals’ concerned. And the reason for this is the parents declined to give me the relevant details.”
You are now going to explain to me how I was going to get the speak to the practitioners involved if the parents declined to tell me who they were. When you’re ready, Gilly….
As regards the spelling of ‘stupid’ as ‘stoopid’, it seems irony is completely lost on you.
ross
“You have assumed you had the full story from the parents. What I’m actually suggesting to you is that making this assumption might make for a good anecdote but probably doesn’t make for good clinical practice.”
Yes, oh what an idiot I must be for listening to my clearly intelligent and thinking patients and taking them at face value. What a very bad doctor I am!
Hey, ross, I’ve got a question for you: “After weighing up the evidence here, what do you think that the probability is that the parents of this child know more about the medical and dietetic management of their daughter than you?” Ha ha ha ha.
ross
“Just to try and make this clearer. “Did you call the gastroenterologist or the dietitian to try and clarify this?” was a rhetorical question, as it was clear you hadn’t. As you hadn’t, you can’t be sure you had the full picture, which was my point.”
Oh, so in previous posts it wasn’t a rhetorical question but now suddenly is. You have made things clearer, ross: it’s getting clearer and clearer you haven’t grasped the fundamentals of this case and are desperate to make anyone wrong (me, the parents) rather than accept this girl’s management was inappropriate and inadequate.
ross
“I really can’t understand why you are so upset about why you think you have been ‘deliberately misrepresent[ed]…so flagrantly’”.
I accept that no everyone will share my views, but I do have a problem with people who attempt to divert from the issue at hand and discredit me by telling what appear to be downright lies. Now, ross, I accept that you may not have a problem with distortions of the truth, but I do. This is one of the differences between you and me, I suppose.
“Perhaps it’s easier to focus on this point than the science?”
Just to remind you, ross: wheat in the diet ” diarrhoea, wheat out of the diet, no diarrhoea. What ‘science’ is necessary here? ‘Science’ is almost certainly some of the reason why this girl was given wholly inappropriate advice.
“as an impartial observer.”
Impartial? That’s a joke, right? Ha ha ha ha.
Catherine Collins RD and Chief Dietitian at St Georges Hospital in London
“Post 88 (yawn) has already replied to your accusations (yawn)”
My comments there only serve to highlight what looks to be your dishonest attempts to misrepresent me. You haven’t answered the charges at all. Instead of doing the decent thing of holding your hands up, admitting the crime and apologising, you continue to pretend that crime was never committed. How honourable and how professional! And this from a ‘chief dietitian.’
“So I take it that you consider the evidence of the parents inadequate or unqualified enough to justify your scathing comments in the original post.”
What’s this I see, an attempt to blame this situation on the parents by suggesting their account was somehow unreliable?
Do please remember that this post is about the need for we practitioners to listen to our patients. And your ultimate response is that we can’t rely on what our patients tell us. How very ironic (and sad).
Dr Briffa
“My comments there only serve to highlight what looks to be your dishonest attempts to misrepresent me”
why not “admit your crime” Que?
What on earth are you referring to, Dr B???
iThis is getting a tad tedious.
Dishonest? How?
‘Crimes’ – What?
Every post has supported your concern about this medical/dietetic ‘abuse’ and hope you will do something about it – instead of which the post appears nothing more than an opportunity to bluster and brag about your superior medical/nutrition practice as illustration of a ‘patient saved from conventional healthcare’.
Lets state once again for the record – If I, as a Registered Dietitian (lets leave aside my work based position and location, unless of course you are hoping for your supporters to indulge in a little snailmail goading) was SO concerned about the treatment of an individual I would report them to the HPC. My code of conduct suggests I can breach patient safety ‘by act or omission’ – so, by ignoring the issue i have not acted in a professional manner. Your GMC ‘Good Medical Practice’ says similar.
My position at St Georges has absolutely no bearing on my debate with you on this site.
‘Dishonest’ in stating you have previously manipulated comments on your blog – for reasons unknown?
Others have experienced the same problems. Hardly dishonest to state this – then ask why this occured – even though the posts are apparently restored now. That evidence is found here:
http://jdc325.wordpress.com/2008/05/30/more-briffa/#comment-1130 .
I’m not sure why postings should disappear into the internet ether to resurface at a later stage, but you have to admit that loss of selective postings seems rather odd. And even more strange, that they were posted from dietitians. Perhaps your site has an intolerance or – dare I suggest – a previously unrecognised allergy to the opinions of those who challenge your views. Either way, the fact they are now restored does not neutralise the fact they were removed for a time – duration unknown but I’m sure those familiar with the internet could find the full details.
FWIW I think your site showcases your knowledge and attitude towards patients/clients/healthcare professionals perfectly.
I only wish you would adopt the same receptive approach in reading comments on your blog that you exhort from healthcare professionals when listening to patients – which, incidentally, as dietitians we do very well.
“Yes, oh what an idiot I must be for listening to my clearly intelligent and thinking patients and taking them at face value. What a very bad doctor I am!”
To accept what anyone says at face value, regardless of their intelligence, is just a bit, er, naive.
“After weighing up the evidence here, what do you think that the probability is that the parents of this child know more about the “medical and dietetic management of their daughter than you?”
There’s not enough evidence to base an opinion on. But medical professionals do tend to know more about the medical and dietetic management of their patients than parents.
“Ha ha ha ha”
Something funny?
“Oh, so in previous posts it wasn’t a rhetorical question but now suddenly is.”
It was always a rhetorical question, I just thought I’d make the point I was trying to make clearer. You should try it sometime! (Just kidding!)
“discredit me by telling what appear to be downright lies.”
How can being thought (erroneously) to lecture at an institution where you attend lectures discredit you?
“Now, ross, I accept that you may not have a problem with distortions of the truth, but I do. This is one of the differences between you and me, I suppose.”
Oh, I do have a problem with distortions of the truth. Why are you suggesting I don’t? That’s a very odd thing to say.
“Just to remind you, ross: wheat in the diet ” diarrhoea, wheat out of the diet, no diarrhoea. What ‘science’ is necessary here?”
Well, some things are just not that simple. From the account you have given (which I don’t take at face value) I think it likely that the wheat was reintroduced to preclude the possibility of a false-negative test result. And without talking to the health professionals concerned I would not be 100% sure that this explanation could be discounted. And nor could you. Did you ask the parents to check this with the dietitian before recommending a course of action?
“Impartial? That’s a joke, right?”
I’m not a dietitian or a nutritionist or a practitioner of integrated health.
Catherine Collins RD
“iThis [sic] is getting a tad tedious.”
And so is you not being able to admit that you seem to have deliberately misrepresented me on more than one occasion.
“…the post appears nothing more than an opportunity to bluster and brag about your superior medical/nutrition practice as illustration of a ‘patient saved from conventional healthcare.”
In your mind maybe. In mine, though, this post was and remains to be about the problems that can ensue when practitioners don’t listen properly to their patients and respond appropriately. See the title ” there’s a clue in there for you.
“’Dishonest’ in stating you have previously manipulated comments on your blog – for reasons unknown?”
Others have experienced the same problems. Hardly dishonest to state this – then ask why this occured – even though the posts are apparently restored now. That evidence is found here:
http://jdc325.wordpress.com/2008/05/30/more-briffa/#comment-1130 .”
The accusation here is that I deleted posts. I have never done that. Comments go into moderation, and then I decide to allow them or not. There’s nothing unusual here. It seems some (including some dietitians) like to give the practice of comment moderation some sinister undertone, when there’s nothing sinister or unusual about it at all. It seems to be yet another cheap and baseless attempt to discredit me and deflect from the real issue at hand.
“I only wish you would adopt the same receptive approach in reading comments on your blog that you exhort from healthcare professionals when listening to patients – which, incidentally, as dietitians we do very well.”
Just to remind you, Catherine: wheat in the diet ” diarrhoea, wheat out of the diet ” no diarrhoea. And the advice given by the dietitian in question: eat a diet rich in grain including wheat. Does this suggest the dietitian in question was really listening to you?
Dr. Briffa, what I don’t understand is why you would bother arguing with morons. I think it would be more effective if you simply wrote your articles, accepting serious questions possibly by email, but disallowing comments.
People certainly have the right to disagree with you, but I dislike the disrespect shown here by many. I am not saying that because you are a doctor you are perfect, but this is your blog, and whether one is a doctor or a chef or a char, one’s own blogs should be sacred ground. They are meant for sharing the thoughts of an individual, right or wrong, and shouldn’t be up for discussion by others.
Of course, here I am violating my own feelings on the matter by commenting myself, but I just wondered why you allow it. I don’t allow comments on my own blog, although I do accept questions, etc. which I do not publish but answer individually IF they warrant an answer. I write to share what I know, or feel, and if someone else disagrees, then they can write their own blog.
I came here because I am interested in your ideas, and I don’t care to read what others may think about it. I can make up my own mind without the input of other people, of whom most are no more qualified than myself to make medical judgments. In this case the article was not specifically about the science of medicine, rather its practice, but you were still sharing your feelings about the WAY it is practiced in many cases, and why would you allow argument about that? Anyone who would quibble with that is simply looking for an excuse to be seen on your blog.
Yes, I know I have been rather long-winded for an ‘anti-commentator’, so I will go now, and never express another opinion on someone else’s blog again. Still, I wonder….
“Gilly, focus if you will on these words for a moment and contemplate their meaning: “I haven’t reported the ‘professionals’ concerned. And the reason for this is the parents declined to give me the relevant details.”
You are now going to explain to me how I was going to get the speak to the practitioners involved if the parents declined to tell me who they were. When you’re ready, Gilly….”
I find your ‘explanations’ of why you didn’t go down a route of action very bizarre. You rant on about listening to patients as if no-one else does it better than you yet you don’t afford your patients the full holistic approach that they surely merit by ensuring that you get a full and complete picture of what has gone on before. You say it’s because they declined to give you information – I find this very strange indeed – perhaps they were also being very selective in other information they were giving you.
Gilly
So, the parents give a full and frank account of the care of their daughter, but decline to give me the names of the practitioners involved. Now, you’re claiming that my failure to report or refer to these practitioners is ‘bizarre’. What are you suggesting I did in the circumstances: force them to give up the names? Is that really what you are suggesting?
And then you suggest that the parents may have been very selective in the information they were giving you, suggesting, as others have done before, that the problem was created by them, and not the practitioners concerned. Oh dear, it seems you’ve been able to learn nothing from this blog post at all…
Catherine
I’m sorry to burst your ego-bubble but I’d never heard of you until I found this thread through another blog. RD5 ” Radio 5? Registered Dietician 5? Sorry, never heard of that either.
Duodenal biopsy is not done unless one of the antibody tests comes back positive, but you have confirmed your propensity to “treat the tests and not the patient”. Poor clinical skills in my book; the raison d’etre for Dr Briffa’s post is the lack of listening skills ” Catherine ” take the bananas out of your ears.
You don’t need to patronise me and explain with baby words what coeliac disease is ” I would have thought it apparent from my previous post that I am a health professional (I even trained at your current stomping ground). Your ignorance in assuming lectins cause “intolerance” further reinforces the idea that you have an innate inability to absorb any new information ” lectins are glycoproteins ” and they cause antigen-antibody reactions ”meaning ALLERGY ” not “intolerance”. And you don’t appear to know gluten is the protein component of gliadin ” umm, a lectin. The fact that you think the Coeliac Society’s website is “excellent” only demonstrates they follow the same flawed paradigm as you do and as such cannot prove you don’t peddle pap. Instead, why don’t we get a bit scientific and you cite me the original papers on which the USDA diet pyramid were based? Or some evidence of why a low-fat, low SFA, high carbohydrate diet is beneficial to health?
Yes, I know very well how dieticians work and that’s why my opinion is less than favourable (oh, I’ve only been in healthcare since 1983). Your tactics here on this thread only reinforce that opinion.
What vulnerable people am I exploiting here? What “horse whispering” nonsense are you alluding to? “Morally bereft”? ” the charge goes entirely to you; not only do you base your practice on an outdated and thoroughly debunked paradigm, but you stubbornly continue, with the bananas in your ears, to damage your patients with your pseudoscientific beliefs.
My research is based on the literature; if you claim the same I have to assume you had a paper bag over your head whilst doing so ” as evidenced by your ignorance on lectins.
Implying dark motives appears to be your tacky but tiresome M.O. ” don’t you have another hat?
Should Dr Briffa have reported these health professionals? ” I covered this point in my previous post ” try reading it again, with your finger following each line, and speaking the words out loud, and you might comprehend what I said. Despite Dr Briffa explaining quite clearly that the names of the health professionals were not furnished you chose to keep those bananas in situ and use his explanation to further “allude” to yet another dark motive. What was he supposed to do ” crack out the waterboard?
There are bad nurses, bad doctors, and bad plumbers, but according to your defensive diatribe, no bad dieticians. By your egotistical self-appointment to Defender of all Dieticians you only further sully the profession to which you belong.
“Oh dear, it seems you’ve been able to learn nothing from this blog post at all…”
I would beg to differ – I have indeed learned from this blog. I have learned that whilst some health professionals claim to put great importance on listening to people, in their actions towards others they do not demonstrate the whole spirit of this approach. It would appear to be very selective. I find it very sad that my colleagues working in health choose instead to snipe at one another and do not treat each other with respect.
Cathy -
The high prolamine and glutamine content of gliadin (and rye secalin, and barley hordein) renders these proteins fairly resistant to breakdown by digestive enzymes. It is the incomplete digestion of these prolamines and peptide fragments that generates the recognised toxic response that damages the bowel surface in coeliac disease.
Studies on the aetiology of coeliac disease demonstrate NO evidence for lectin-like components in wheat gluten, despite the (quite plausible) theories now 15 years old. The confusion seems to be two-fold:
1. Some studies have shown that gliadin reacts in a similar way to lectin towards a binding protein in the body called Mannan-binding lectin (or MBL) – hence the plausible proposal that gliadin was a lectin. Research (since 1993, onwards, if I recall) has since disproved this theory.
2. In sensitive individuals, samples of tissue from the small intestine show a particular profile of damage when exposed to lectins. In coeliac disease, the pattern of damage is different in one area of the bowel which has lead researchers to conclude that although similarities are present, gliadin may exhibit lectin like ACTIVITIES, but is NOT a lectin.
3. The coeliac society has evidence that compliance with a gluten free diet – lectin content variable and dependent on dietary choices – is the key approach to ensuring nutrient absorption and lowering the health risks associated with non-compliance. Lectins are clinically irrelevant in the management of coeliac disease
4. Lectins from wheat may of course be associated with wheat intolerance – a very different condition to the allergy of coeliac disease. This requires different dietary considerations.
5. UK dietitians don’t use the ‘Food Pyramid’ model of the US – a flawed design amended (you judge the success of this) by Walter Willett and colleagues. We use the ‘Eatwell Plate’ model of the FSA, which actually does include carbohydrate foods. This is aligned with what we know is the ‘Optimum’ diet for health – the Mediterranean Diet.
6. I have absolutely no idea why you insist – like Dr B – that dietitians promo ‘high carb low fat’ diets for each and every patient – but to set the matter straight, thats another incorrect statement.
Just like your one about ‘defending dietitians’. I suggest you adopt the reading practices you recommend to me in re-reading the submissions. All, bar this one, recommend Dr B make an official complaint about the dietitian and the doctor.
The difference being, of course, that we don’t use hearsay to berate colleagues- just actual facts. It would be nice a similar knowledge base applied here.
Hi Cathy,
We have a question of semantics here, Catherine Collins states:
“Coeliac disease is diagnosed by one or all three current methods: anti-TTG or anti-EMA (antibody testing) and duodenal biopsy to look at intestinal morphology”
This is the definition, in the UK at least. No anti tissue transglutaminase or anti endomysial antibodies, or if you get a biopsy that missed the villous atrophy area, then you do NOT have coeliac disease. This is intrinsic to the definition of coeliac disease in the UK. You have to tick the boxes.
Certainly in East London it’s even narrower because you won’t get biopsied if you are antibody negative, hence you MUST be anti-TTG or anti-EMA antibody positive to stand any chance of a diagnosis by biopsy. This is just how it is. No boxes ticked means no coeliac disease. It doesn’t matter how long you spend on the loo after eating wholemeal bread at your dietitian’s recommendation, you do not have coeliac disease.
So a Catherine Collins is correct on this.
Unlike her statement on the roll of lectins. Technically I believe “lectin like” applies more correctly to gluten (it’s wheat germ agglutinin which is the true cytotoxic lectin in whole grain wheat). WGA produces changes in the gut similar to those of early coeliac disease in rats, without antibody production. Rats do not have the HLA-DQ2 or HLA-DQ8 antigens unless transgenically engineered to possess them.
http://www.ncbi.nlm.nih.gov/pubmed/3768964?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
Other groups consider WGA to have a roll in coeliac disease independent of antibody production:
http://www.ncbi.nlm.nih.gov/pubmed/6895878?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstractPlus
Gluten also appears to act through the NKG2D receptor on natural killer cells to prime them to induce coeliac disease. It’s not clear whether this latter effect is a result of the lectin structure or simple recognition of peptide sequences in gluten. It does not involve antibodies, so is not technically “allergy”.
http://www.ncbi.nlm.nih.gov/pubmed/16698443?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
But overall the suggestion that lectins are not involved in coeliac disease is, to quote someone else on this thread, bizarre. Certainly for someone giving dietary advice.
But never forget, without anti-TTG or anti-EM antibodies, it’s NOT coeliac, in the UK anyway. Semantics. You still sit on the loo for a week or two after wheat. But it’s not coeliac. Keep saying it.
Catherine Collins’ fervent desire for the dietitian and gastroeneterologist to be up for disciplinary action is commendable. Her approach is execrable. So too appears to be her knowledge of the immunology of gluten.
Peter
Hi Peter ” thanks muchly for clarifying that
Catherine
What is this pathological fixation you have with things legal? “Hearsay”? This isn’t a court of law; it’s a blog. Dr Briffa has merely shared an experience that might give health professionals pause to think. He hasn’t defamed anyone in particular so why on earth do you take it so personally?
You step into your own stereotype each time you commit finger to keyboard; you are still “treating the tests” with the attitude ” if we can’t test for it, it doesn’t exist. I have witnessed that patronising attitude many times among your profession: “Oh, so and so was negative for coeliac but the ignorant bugger has self-diagnosed wheat intolerance and against my highly important advice, consigned himself to the HELL that is wheat avoidance.”
You want him to go home and gorge on whole-grain bread because “you know better”. You don’t care that he will suffer horribly as a result, that this advice could lead to gross nutrient deficiencies that will cause other seemingly unrelated medical problems and possible death because at the end of the day Catherine, ” you were seen to “do the thing right” rather than “do the right thing”; your “legal” obsession confirms this in spades.
The anti-TTG might be better than the older antibody tests but it still isn’t 100% – no test ever is. The UK Coeliac guidelines admit that false negative antibody tests occur in 5-10% of patients and recommend duodenal biopsy in patients with ongoing symptoms but as Peter has explained above, this doesn’t seem to happen. Certainly the system failed the child described above.
I’m allergic to pine ” it gives me gut anaphylaxis if I ingest it (and you’d be surprised what foods it lurks in). One particularly bad episode landed me in hospital with a diagnosis of sub-acute bowel obstruction. The GI surgeon wanted to do a laparotomy ” I told him it was a food allergy and he looked at me like I’d escaped from Bedlam. I signed my own discharge and found myself an allergist. With only 3 questions he pinpointed the problem and patch testing confirmed it. He also told me that he had numerous patients that had undergone unnecessary laparotomy because gastroenterologists don’t understand food allergies or intolerance (nor do dietitians it seems).
I don’t consider unnecessary laparotomies good clinical practice Catherine ” do you?
In 1934 a mother (with no formal medical training) insisted there was something wrong with her children. Luckily for her and countless children since, the good Dr Folling actually listened and observed the children (for hours). This was the discovery of PKU disease. How many children have been saved from severe mental retardation thanks to the intuition and persistence of one mother?
Just think about that for a moment Catherine. And remember to take the bananas out of your ears.
Dr Briffa, I think 99% of patients out there totally hear what you’re saying. I have had the same problem with Dr’s and for now have just given up until I feel like beating my head against a brick wall again.
One thing though regarding the girl, you mention that they tested for coeliac disease but what about fructose malabsoption? Fructose malabsorption is very common, I think I read a figure of around 40% of Europeans suffer from it?
Anyway as well as the obvious intolerance (fructose) there is also fructans, fructans are found in wheat, onions, asparagas, artichokes, green beans and probably more. All you need is a breath test so if she hasn’t been tested might be a good idea.