And please let Shinga find some decent coverage of allergy issues before she explodes.
A valued correspondent has been kind enough to send me a partial transcript of Radio 4's recently broadcast Allergic Reactions
. The clinical experts were interesting but the reporter repeated the cliched investigations that do nothing to educate or to inform the debate: consequently, judging by the reactions and comments, he has achieved very little. Allergic Reactions
was (sadly) spotty and irritating in parts - I could say that it probably seemed like a good wheeze at the time but that is probably going too far.
Allergic Reactions (BBC Radio 4 Tues 22 May, 8pm, reporter Matthew Hill)
Beginning of broadcast: Prof. Gideon Lack and Dr. Pam Ewan provide an overview of the current inadequate NHS service for allergies and allergic diseases.
[06.25] A mother describes the uncertainties and difficulties in obtaining an accurate diagnosis. Her one year-old son had an allergic reaction to fish which is even more worrying than normal because her son has eczema and asthma; as such, the boy has hit the trifecta for multi-system allergies and needs high-quality, careful, medical management.
The mother's apprehensions and fears were not allayed when she took her son to A&E following the allergic reaction to fish and the Senior House Officer (as the grade then was) examined the child and suggested a diagnosis of hydrocephalus and defended that diagnosis in the face of the mother's frank disbelief.
[07.00] Dr. Ewan provided an overview of the lack of adequate provison at all levels in the NHS.
The lack of provision is at a series of levels, first of all in primary care. GPs are not well informed about allergy at all, but particularly about food allergy and that is because they are not trained in it. So GPs have gained knowledge by self learning or self interest, then if a GP wishes to refer to a specialist he will have a problem finding a specialist because there is a very small number of these.
[07.35] Another chilling case history of a little boy, William, in NE England. William was known to have peanut allergy. For some unclear reason, the General Paediatrician decided that it would be appropriate to check if he still had an allergic reaction by setting up an open challenge with peanut. In an account that must have dropped ice-water down the back of parents in a similar position, the challenge was conducted in a hospital (as per the guidelines) but without constant observation/monitoring.
As the amount of peanut was incrementally increased, William's mother was more and more convinced that he was showing signs of an allergic reaction. The nurse discounted the mother's observations and refused her request to terminate the test, arguing that William was just anxious and that abandoning the test would mean having to repeat the stress at a later date.
The subsequent events were wretched and resulted in anaphylaxis. William was in a life-threatening condition and taken to HDU; nobody could tell the mother whether or not William was expected to survive (thankfully, he did).
[09.35] Dr. Ewan reveals that both the Royal College of Physicians and even the Department of Health itself have warned there are not enough specially trained doctors: there are only six specialist centres in the UK. Despite the recommendations and reports, there are only 7 trainee allergy consultants at present, although the recommendations called for 40.
[10.17] Prof. Lack provides further detail on just how poor NHS allergy provision is in the UK. E.g., there are 5 paediatric allergy specialists in the UK; the comparable figure for Germany is 500 allergy specialists.
[10.34] There was some discussion of private tests which, by default, because of the poor NHS clinical provision, tend to be offered by CAM therapists. Prof. Lack was sufficiently concerned about this that he conducted a survey of the allergy advice parents have received before they attended his paediatric allergy clinic.
We found almost 50% had received alternative health care advice about allergies before coming to see us. I would say that of the children who come to our clinic at least 10% and possibly up to 20% have received unsound advice; these children will face nutritional problems.
Martin Hill presents a case study of Carol who was so desperate that she went to her local health food store for a Vega food allergy/intolerance test. She was advised to give up milk and she did - for 6 months. However, the symptoms didn't go away and, on past experience, there seemed to be little point in returning to consult her GP. Later in the programme, about 12:36, Carol reveals that her problems were related to undiagnosed coeliac disease; she obtained her diagnosis while she was pregnant. While she had been avoiding milk, Carol had unwittingly consumed more cereals, and these had exacerbated her gut problems.
At about 12:30, MH talks to Dr. Joe Unsworth, who is a clinical immunology consultant with a special interest in allergy, about the dangers of eliminating dairy without appropriate dietary supervision and guidance on other sources.
[14:58] Martin Hill introduces a disproportionately long section that deals with the YorkTest
foodscan test for food intolerance. He does the horribly cliched split test by taking two samples at the same time and submitting them under different names.]
There is one test available via the internet that does sound very scientific [sound effects of conducting a YorkTest foodscan 42]. YorkTest labs claim their food intolerance test has been found to relieve symptoms in a wide variety of conditions by identifying problem foods and avoiding them. I decided to put it to the test. I ordered 2 kits and then sent back two samples…42 foodscan test…suggested on the website for children and people with restricted diets. Costs £125 [more sound effects].
The samples came back with different results so Martin Hill arranged to meet John Graham, the chairman of YorkTest
labs to discuss the results.
John Graham (JG): We’d like to explain what we do.
Martin Hill (MH): I’m Martin Hill, I was the patient. It was my blood that was taken and there’s my result [I should avoid cow’s milk and rotate wheat]. Same blood, same day, same test, Martin Redfern [my alias], [I should avoid] cow’s milk, no mention of wheat.
JG: OK, so what we’d like to do now is send it off to the lab, investigate it properly. I’ll be able to respond shortly
[17:20] Dr. Gill Hart can be heard giving a presentation in the background]
[17:50] Alistair ?, the lab manager arrives and presents the raw data from the original lab tests. He reports that the results for the two samples, in arbitrary units, were: Milk – Martin Hill 12.9, Martin Redfern 10.4; Wheat Martin Hill – 5.4, Martin Redfern 5.2.
Personal note: For the remainder of this YorkTest
segment, the discussion was disappointingly irrelevant and the quality was poor. Neither MH nor JG displayed much understanding of the issues; this entire segment failed on so many fronts that it was neither informative nor educational. I will put some comments in where I can't help it but for the most part, this nonsense speaks for itself.
It would have helped enormously if they had explained that they had measured the levels of IgG for particular foods; YorkTest
had presumably established the levels in (say) U/ml, and they had mapped these to their scale of 0-4, where 4 is 'very reactive' or similar. I would like to know the measurements that map to the sensitivities and this section of the programme would have been clearer if they had announced where MH's results were on the 0-4 scale.
MH: So, John, your saying they’re quite similar, the results.
JG: Yes, as you can see [for] the results in 42 foods mentioned, 41 produced identical results. One produced a result that isn’t identical and that is very close to a zero result or a treat with caution result. My advice to you in both cases would be to do nothing other than to seek to avoid the one food you have a positive reaction to.
OK, my silence didn't last long. With respect, we know that 2
results were not
identical; we don't know any such thing about the others. We just know that we didn't get the figures because they were not around the boundary level where they acquired any degree of significance. They may or may not have been identical
This would have been an ideal point at which to discuss whether or not YorkTest
's foodscan is recognised by the appropriate pathology services in the UK and what the normal lab. tolerances are for variation in the results of split tests. It is difficult to confirm this, but I'm told that the usual permissible variation is 10%.
I would like to point out that there was an almost 20% variation in the measurement of IgG levels for cows milk and a negligible difference for wheat. It isn't at all clear whether the difference in the cows milk was written off because it didn't affect the category on the sensitivity scale, but somehow the negligible variation in the wheat measurement crossed some threshold of significance.
I'm also losing the will to persevere because MH hasn't stated, clearly and simply, that he does or does not have any clinical symptoms that might indicate that he does
have intolerance to cows milk.
MH: But there was a difference in [the] advice I got from your nutritionist. One test; no milk. The other [test results, I'm advised] no milk and rotate wheat…so you don’t think that’s an issue?
JG: You contacted a nutritionist and you haven’t got anything wrong with you…Correct?
MH: She rang me back…as part of the package you get a free consultation. In that consultation she was giving the different advice on what foods to have. On the one hand [the outcome of one test profile recommends that I] don’t have cow’s milk, on the other hand [the outcome of a separate test on the same blood sample recomends that I] don’t have cow’s milk and also rotate wheat.
JG: I can only repeat myself. You’ve got 41 foods which are identical and you’ve got one result where it’s marginal if you should rotate the food or just not do anything with it. When you look at our booklet you will see that you should seek to avoid the one food and…treat with caution the other food. [Presumably the former is milk and the latter is the wheat.]
MH: The treat with caution advice I don’t think was clear in what I was sent...
JG: Could we examine that document and try and establish whether that is clear?
JG reads the YorkTest
booklet that was sent out with the test results, noting the advice to eliminate foods with high number reactions first. There is some background chatter in which MH is objecting that he wasn't told to treat the wheat result with caution and Dr. Hart chips in that that is (possibly) implied by the instruction to "rotate". You will not be surprised to learn that neither Dr. Hart nor JG succeeds in clarifying the issue.
MH: It doesn’t specifically say "treat with caution".
JG: No, but that is a problem of nomenclature, it is something actually that [is flagged] in our quality control procedures at the moment...to look exactly at the wording we offer. And we can show you evidence of that…today, because the proposal has been made that we should change from ‘rotate’ to ‘treat with caution’.
This discussion is really not improving. Both participants are missing the broader issue that it may be wholly inappropriate to hand out dietary advice that is based on borderline measurements and categories, when those lab results are not interpreted by a skilled clinician who has examined the client and taken a decent medical history.
JG: What you’re dealing with is a very sensitive area right at the centre of all this…the difference between a slight positive result that may have some significance to one person or…no significance to another person.
Seriously people, would it cause you deep distress to clarify whether you are still whittering on about the borderline wheat result? In yet another journalistic cliche, MH pulls out a variation on the "Won't somebody think about the children?!?" card.
MH: But if you’re advising…some of your patients are children, presumably...
MH: If you’re advising parents to cut down a lot on the wheat when that is a marginal grey area as you admit in your test…isn’t that a long way to go?
JG: If you look carefully at what we say…eliminate highest food first…concentrate on that. For a marginal [result] seek to rotate or treat with caution. I think we make that very clear...
End of 1st YorkTest
segment. Martin Hill reports that he was concerned that avoiding milk products and rotating wheat would be difficult. He decided to take his results to Registered Dietitian Catherine Collins and paediatric dietitian Susan Durham-Shearer. Martin Hill expresses concern that the YorkTest
nutritionist had a 2 year diploma in nutrition and that her advice was that he should exclude all dairy products for 3 months, and consume wheat products, 2-3 times per week.
Catherine Collins gave an overview of the core food groups and the difficulties that people can encounter when they are accustomed to a typical UK diet and need to obtain calcium from non-dairy sources. She debunks a piece of advice that is a source of irritation to me: the one where people tell you that you can obtain calcium from eating tinned fish - which is true if you eat the bones, but how many people do?
Martin Hill mentions that he had a IgG test for food intolerance. Catherine Collins explains that your IgG levels reflect the foods that you eat and that your highest levels may reflect the foods that you eat more frequently.
Finally, Martin Hill raises a nagging issue.
MH: The key question is: Can YT distinguish between IgG levels in people without food intolerance and people with food intolerance?
Martin Hill gives an overview of the Gut paper that is frequently cited as clinical evidence and validation by YorkTest
(I have previously discussed the Gut paper
). He discusses the paper and its findings with Dr. Ewan (PE) who thinks that the significance of the paper's findings are overplayed.
PE: The so-called active or treatment group avoided milk and wheat and it’s well known that milk and wheat are the commonest foods to cause flare-ups…in IBS. So if you remove those, there is a good chance there will be some improvement in those patients but that does not mean it was anything to do with test results; it was not related to IgG antibodies.
Martin Hill put these criticisms to JG who put on a surprising show of bluster that was embarrassing: he seemed to deprecate Dr. Ewan's opinion and knowledge without even attempting to lay a foundation for his criticism. He also glossed over a major issue that Dr. Ewan raised; namely whether the level of IgG antibodies is relevant in the diagnosis of food intolerance.
JG: One criticism we can’t do anything about…elevated antibodies in healthy humans (i.e. they exist). Another one is the systemising of the dietary change because, as you say, you are quite right, it is considered that some foods are more allergenic than others. So we have to give very careful thought to when we change a person’s diet and do the randomising of it that the other – sham – diet would be as difficult for the patient to adhere to...
MH: So, does that mean your Gut Study was flawed?
JG: No, no, every effort was made to do that...
MH: But you’re using…the Gut paper…
JG: Surely one would if…
MH: But that paper, according to experts we’ve spoken to, is flawed.
JG: I know but I’m sorry but the duty of these so-called experts is to produce another paper to demonstrate that [the Gut] paper is flawed and not just to write in with their comments. [My emphasis.]
MH: But to advise that children…
JG: We always advise [people] to see your doctor. We are not in the business of trying to alter young people’s diets...
I have to point out that the foodscan 42 test used to be recommended for use when testing children. As it is, in many places that advertise the foodscan tests, the advice is that they should only be used on children over the age of 2 (see Health Products for Life
) so it does
seem to me that this is part of their business. JG responds to MH's child card with his own emotive claims.
JG: When these parents come to us they’re desperate, beside themselves. Terrible colic, IBS, diarrhoea, skin complaints, seeing doctors…[They]don’t get better…desperate…[They're] not getting better through conventional medicine...
MH: Should we be considering excluding whole foods until the evidence is better?
JG: Our advice is to consider excluding foods with the highest levels of antibodies…
MH: Your paper says about 75% of people who buy your product show improvement but this is based upon them reporting…how much credibility can you give that?
It is not at all clear whether they are discussing the Gut paper or the more recent published audit of customer satisfaction
JG: By itself it’s quite a useful piece of indicative information…What we don’t know is [how much of those results should be attributed to the] placebo effect…or regression to mean effect...
Martin Hill than gives an overview of John Graham's contention that some of the tests that are ordered by 'conventional allergists' may result in false positives. This is true but the specificity etc. of these tests is known; and good clinical allergists only ever interpret test results alongside an examination and thorough clinical history. I fail to understand John Graham's point here or why he thinks that a direct-to-consumer lab test is comparable to a test that is conducted and interpreted by experts but I'm not getting any younger and my hair is starting to fall out.
Dr. Unsworth agrees that test results alone are problematic; he emphasises that the best way to diagnose allergy or intolerance is to take a good clinical history before testing.
Martin Hill then discusses YorkTest
's collaboration with academic researchers to establish the normal ranges of IgG measurements. He mentions small pilot studies from a London hospital that have just been presented as a poster at a conference in Washington, DC. MH assures us that Dr. Anton Emmanuel (AE) (one of the researchers) has some interesting findings.
AE: What we found is that patients with [inflammatory bowel disease] who report greater sensitivity to food also tend to have highest levels of IgG in their blood. [However], patients with Crohn’s disease seem to have an inverse relationship…the more foodstuffs they report sensitivity to, the lower the IgG count, whereas in ulcerative colitis there is a much more direct relationship. We wonder whether there is some sort of gut permeability problem in Crohn’s...
Martin Hill discusses the findings and questions Dr. Emmanuel on whether these results in people with serious bowel conditions are sufficiently powerful to convince him that YorkTest
can predict food intolerance in anyone?
AE: IgG measurement is a strength and a weakness…it reflects exposure in the past…The weakness is that it doesn’t tell us anything about recent exposure. What we need is a normal range [of values].
So, can you say, 'My level was Y in March, [I] went on the diet, now it’s Z?'. Unfortunately we can’t do that. These tests are done with artificial reference points. I think the IgG test is very broadbrush. If you use it as the sole basis on which to alter your diet…that is folly. I’m sure no-one would ever suggest that. Whatever you do has to be allied to input from a physician or dietitian…but [IgG] does open our eyes to something we have ignored [the relationship between diet and symptoms]…It illustrates a trend but needs to be fine tuned. [My emphasis.]
Martin Hill does not comment on the fact that what Dr. Emmanuel calls "folly" is actually happening: IgG results are
being used as the sole basis on which people are advised to change their diets and people are
doing this without input from a physician or dietitian (a nutritionist does not necessarily count for this purpose
). Hill reveals that YorkTest
has since informed him they are withdrawing the foodscan 42 test, and changing the language in their booklets from ‘rotate’ to ‘treat with caution’.
The remainder of the programme reverts to the extraordinary difficulty people have in accessing allergy services on the NHS. Despite his clear clinical signs, the little boy with the fish allergy was not referred to an allergy clinic for 4 years and waited all that time for a diagnosis of multi-system allergic disease.
Dr. Ewan explained that she and her colleagues are asking for central funding for trainee specialists but control has been devolved to the local PCTs and resources are being used inefficiently because funding allergy trainees would save the NHS money.
The big problem there is that they are strapped for cash so that there is no way PCTs are going to be able to fund a new consultant or a new trainee post...
The NHS are spending money on allergy patients, but it is in a sense wasted because patients, if they are not properly diagnosed, are somewhere in the system being ill. They are either having acute reactions coming into A&E, there are hospital admissions, there is very good data showing a rise in hospital admissions.
They are frequently attending their GPs with continuing illness. They are using a lot of drugs - now all that is a cost to the NHS and our argument is that a small investment in training more specialists which would enable both the specialist sector and primary care to develop would be actually a cost saving.
Prof. Lack, Drs. Ewan, Unsworth and Emmanuel were interesting although some of those speakers must be weary of repeating the same warnings about the inadequate NHS provision of allergy services. The case studies were interesting but the segment about the YorkTest
was profoundly irritating.
Allergy and allergic diseases are distressing and have a remarkable impact on people's quality of life
. The BBC did not serve its listeners well by offering them this programme. Listeners both deserve and need better coverage.
Labels: Allergic Reactions, allergies, allergy testing, anaphylaxis, Anton Emmanuel, Catherine Collins, food intolerance, Gideon Lack, Joe Unsworth, Pamela Ewan, YorkTest