I am constantly in awe of the resilience of people and companies: their nonsense can be exposed in the most public of fora and yet they bounce right back with their marketing message unchanged or tactfully edited but still ignoring the point that it is underpinned by nonsense.
Former Visiting Professor Patrick Holford comes to mind as does Nas Amir Ahmadi of Detox in a Box. YorkTest (so beloved of Patrick Holford, Allergy UK, and a slew of self-declared experts as well as TV doctors) is another such company. YorkTest offers a food intolerance product that has been declared irrelevant by clinical allergists and immunologists and publicly deprecated but manages to garner pages of laudatory press coverage through its attractive press releases and to win customers because it ‘sounds science-y’. Recently, YorkTest piggybacks onto Allergy UK‘s Blossom Awareness Week to highlight the issue of allergies in children.
YorkTest’s IgG food intolerance blood test was given a comprehensive drubbing both by the House of Lords Enquiry into Allergy and Allergic Disease and the ASA who investigated claims of efficacy before deciding that they could not be substantiated (full details of both in Myth: You can diagnose food intolerance or allergy with an IgG blood test). One particularly memorable part of the House of Lords report recommended:
We are concerned both that the results of allergy self testing kits available to the public are being interpreted without the advice of appropriately trained healthcare personnel, and that the IgG food antibody test is being used to diagnose food intolerance in the absence of stringent scientific evidence…We urge general practitioners, pharmacists and charities not to endorse the use of these products until conclusive proof of their efficacy has been established.
One of those charities who should be refraining from recommending YorkTest is Allergy UK but, yet again, representatives from Allergy UK are quoted in yet another story that claims usefulness for the IgG food intolerance test and goes further in calling for it to be made available on the NHS.
Gluten test changed way of life for Liam. Now, HolfordWatch had initially anticipated that this would be a story about early diagnosis of coeliac disease – but nothing so sensible.
[E]ating anything containing wheat or gluten gives Liam crippling migraines.
Liam has suffered with migraines for three years. His mum Julie tried everything to find out what was causing them. After discovering wheat is to blame, Liam is relieved not to have to go through the pain any more…
In desperation Julie contacted the Migraine Trust charity which suggested a test [YorkTest] to check for food intolerance rather than allergy. Liam’s problem was discovered…
Despite the widespread nature of the problem the test is not available on the NHS.
For Liam identifying the problem three years ago has made a huge difference and he has only had two migraines in that time.
Known as the York Test after the laboratory in York where it was developed it is offered by a private company. It involves potential sufferers sending off a blood sample for testing at a cost of £20.
If the results indicate there is a problem, sufferers have to pay a further £265 for a detailed analysis of what foods are causing the problem. Sufferers also get two one-to-one telephone consultations with a nutritionist.
Julie, a teacher at the Appleton School, said: “We tried everything the NHS had to offer and were told there was nothing more they could do. They basically said there was nothing wrong with him.
“If I hadn’t found out about the test we would never have known. I think it should be available on the NHS.”
Allergy UK would also like to see the test offered by the health service. Ms Simmons said: “We really wish it was possible, there is a tremendous number of people who could benefit.”
The test is not available on the NHS because there is no immunological or clinical evidence to support IgG testing in the diagnosis of food intolerance.
During the House of Lords enquiry, Dr Gil Hart, Technical Director of YorkTest Laboratories admitted:
that the presence of either IgE or IgG antibodies does not necessarily prove whether a food allergy exists, but claimed that IgG could be used “as a marker that a reaction has occurred” (Q 742). However, there is limited evidence to support this claim…
Given the lack of evidence for these services we were concerned to learn that Allergy UK recommended the Yorktest service for food intolerance. The charity acknowledged that a patient’s best option would be to consult a dietician, but noted that “being able to obtain a referral to a dietician who understands food intolerance is extremely difficult on the NHS” (p 303). HL 166-I (pdf from which pg numbers are given)]
During that enquiry, Ms McManus of Allergy UK made a rather desperate defence of YorkTest on the grounds that nothing else is available:
It’s a lack of other places to send these people to. Err, we would give the YorkTest purely because it’s the only one that has undergone trials-particularly for IBS and that’s what we would say, that we would [be] happy to endorse it for, would be for those kind of symptoms. Eh, but, you know, we wouldn’t recommend any other test.
Well, yes there is an option. Recommending food exclusion for children is not a trivial matter and it can have long term consequences in the hands of the well-intentioned but unwary who are not receiving expert guidance. Oddly enough, two sessions with a YorkTest IONista nutritionist is not sufficient guidance for a child whose long-term development might be impaired by inappropriate guidance on diet (a restricted diet has not only a physical but psychological, emotional and social toll[b]).
Allergy UK repeatedly report that they they are inundated with enquiries from people who contact looking for high quality advice and guidance: these enquirers place their trust in them. Allergy UK has been asked not to recommend the YorkTest and even set up an off-shoot, Food Intolerance Awareness[a] in an attempt to seem to be complying with the House of Lords’ strong advice.
Although it was the Migraine Trust who (allegedly) recommended YorkTest in this instance, it is Allergy UK that is lending its reputation to the test. Clearly, in similar cases like this, where other avenues have been explored, and there is, as yet, no forthcoming diagnosis but the issue of food allergy and intolerance hasn’t been explored, then it would be better for a charity to do the following:
- coach the enquirer to advocate for the child when approaching a GP
- provide the enquirer with evidence to take to the GP that would support a request for a referral to an NHS Allergy Clinic
- if a GP is unable/unwilling to make a referral to an NHS Allergy Clinic, then advise the enquirer to consider a private referral to a Clinical Allergy specialist.The YorkTest 113 foodSCAN test for intolerances costs £265 and, strictly speaking, the enquirer should also purchase the MAST Allergy Test (if they are going that route, HolfordWatch does not recommend it). For that money it is possible to purchase:
- a consultation and tests at a well-regarded allergy clinic
- a consultation with a leading consultant and researcher plus several tests
- a consultation with a leading consultant and researcher, but tests would an additional cost
- outside London, HolfordWatch would expect that people would be able to have a consultation with an expert and comprehensive and relevant testing
- several consultations with a dietitian[c] (NB, appropriately qualified and registered dietitian, not Allergy UK‘s recommendation of BANT-registered nutritionists[a]) who can guide and support the enquirer through an elimination and challenge diet.
We don’t recommend YorkTest’s allergy or intolerance tests but if an enquirer is persuaded that food may be at the root of their problems then there is no obvious reason why they are not advised to screen for a mix of allergies and intolerances which would require both the YorkTest Allergy UK MAST (multi allergy screening test) and the 113 foodSCAN test – in which case the price comparison with the cost of seeing a relevantly qualified and experienced Clinical Allergy Consultant or registered dietitian is even more favourable. Any of these suggestions are more likely to result in a more relevant outcome for the enquirer than an IgG test.
One recommendation would be that children who have similar extensive work-ups would benefit from a referral to a paediatric dietitian. A paediatric dietitian would be able to guide the family in keeping a food diary and navigating an elimination and challenge diet that might form a useful record for any further discussion with a GP if requesting a referral to an Allergy Clinic or discussing whether or not it is time for a referral to a tertiary facility that specialises in neurology, gastroenterology (as appropriate).
As for the recommendation for the test to be made available on the NHS – no. There is no evidence to support it.
What Allergy UK, Migraine Trust etc. might consider is doing some sums. Appropriately specialist dietitians who are accredited for working with paediatric or adult allergy or gastroenterology issues are typically a Band 7 NHS payscale. If we decide to make our calculations on the basis of the mid-payscale, then one working hour with them would cost the NHS around £30 although it would be free at the point of delivery to the child and family.[c] It would be possible for the NHS to allow a child to have as many as 7 one-hour sessions with an appropriately credentialled RD for the cost of the YorkTest (alleged) food intolerance test. And it should be remembered that long-term exclusions mandate follow-up from an appropriately-qualified professional, 2 phone-sessions with a ‘nutritionist’ can not be enough, even leaving aside the issue of appropriate paediatric specialisms.
It is one thing when people choose to spend their own money on these unvalidated and much criticised tests, it is quite another when charities are recommending that the NHS should provide these dubious tests or endorsing that call.
[a] Part of YorkTest’s credibility with the public is the heavily publicised fact that it is recognised by Allergy UK, although this is only a Consumer Award and based on anecdote rather than clinical evidence, and YorkTest pays an annual fee for it to be renewed.
FIA gives some decent advice about the elimination and challenge method for identifying food intolerances. They even discuss allergy tests that have no scientific support such as Vega and Applied Kinesiology. However, they don’t mention the House of Lords’ criticism of YorkTest’s tests nor the plea that responsible professionals should not recommend those tests and that charities should not endorse them. And, it’s unsettling that the FIA recommends that people should consult a (preferably BANT registered) nutritionist but neglect to mention Registered Dietitians. Particularly given that so many members of BANT are graduates of the Institute of Optimum Nutrition and IgG testing for food intolerance is a common thread in their practices; and, it is unlikely that Registered Dietitians are quite as supportive of non-conventional or evidence-light tests.
AUK benefits financially from endorsing YorkTest and YorkTest has a marketing advantage in being able to promote some of their products as ‘endorsed by Allergy UK’; a fact that is mentioned prominently on their website and in their frequent press releases. It is a sensible, mutually beneficial arrangement. However, there is a niggling sense that this is not quite within the spirit of the House of Lords’ recommendation. There is also a slight qualm that there is a potential for the public to believe (rightly or wrongly) that the fact something is endorsed by a charity means that any health benefits are medically-approved and evidence-based even when a particular product has been the subject of explicit criticism.
[b] In the US, several hospitals are devising support programmes for affected families. Allergies at the Dinner Table:
In a study of 17 families with children with anaphylaxis, the authors describe the profound psychosocial impact on parents of knowing an illness can cause death. “I was completely shocked and surprisingly emotional,” says Stefanie Jones, who burst into tears when daughter Darby was diagnosed four months ago with egg, milk, wheat, and peanut allergies. “I realized I’m going to have that weird kid at the party with the dairy-free, prune juice cookies.”
Children, of course, bear the brunt. “The emotional toll is huge,” says Muñoz-Furlong. “It tends to wear them down, particularly after they have a reaction.” Some children lose the ability to trust people. They may want to stay home all the time within a controlled environment. If they have a reaction at home, they may become afraid that even their parents can’t control the allergy. Others are fearful of food or develop eating disorders. They might become hypochondriac, phobic, or suffer from panic attacks or post-traumatic stress disorder symptoms.
Parents can be exhausted by the effort involved in proving a milk-free playdate for their children. Paradoxically, because so many parents claim ‘fashionable’ allergies for their children, it may undermine a full understanding of how deadly serious allergies are for other children.
[c] I’m grateful to a correspondent for the following figures. Band 7 NHS mid-payscale = £34,400 = for 37.5h week; 52 weeks less 5 weeks annual leave = 47 weeks = approx £19.50 per available working hour. Additional costs of superannuation, pension, booking arrangements etc. would bring the consultation to around £30 per working hour.
Appropriately qualified dietitians do cost between £60 to £120 ph hour, depending on location and room-hire, if consulted on a private basis.