Total Food Intolerance

John Scott, as many readers will know, suffers from ME and total food intolerance. Click here for his full story. He manages to survive by alternating two semi-elemental infant formulae and combining them with homeopathic remedies - but it is a precarious existence as he never knows when his remaining tolerance to these foods will disappear. He reviews the current situation for others with similar problems.

Judging by my own experience, and that of a number of others, there has been no positive change in the medical attitude to total food intolerance since the death of Annabel Senior. In fact, doctors appear to have hardened their attitudes somewhat, as strict adherence to the principle of 'evidence-based' medicine has become more widespread.

Patients still being dismissed

One lady recently reported that she has developed a 'very strange intolerance to just about every kind of food', with a vast array of symptoms, all triggered solely by food or drink. These include tremors, dizziness, numbness, rapid heartbeat, tightening in throat, tingling in arms and legs (usually on one side only), shortness of breath, irritability, daily bouts of diarrhoea, feeling extremely cold and exhaustion.

The attacks of symptoms happen even at times when just sitting on the sofa relaxing - but always after putting food or drink in her mouth. She has not lost her appetite, and in fact craves food, but is finding it increasingly difficult to find any foods that do not bring on the symptoms, and is having to get by on literally just a few tiny bites of food each day and a few mouthfuls of liquid.

Already extremely thin, with energy at an all-time low, she is now unable to lead a normal life, and has had to call on a relative to help care for her two small children. When she presented this scenario to her GP, he sent her for blood tests for anaemia and thyroid function but, when these came back normal, she was given the clear impression that the GP believes the problem must be psychological.

At a further appointment, she tried to give her GP a print-out from the internet about total food intolerance but he just waved it away, saying ‘I don't believe anything off the internet!’

There was no offer of a referral to a specialist for further investigation, and the GP closed the discussion by telling his patient that she might want to find another doctor, because he didn't know what was wrong with her!

The ultimate question

The question remains as to how hospital doctors would respond if my own condition was to worsen still further. Would they offer to feed me intravenously, as my ever-supportive GP has already suggested, and as is routinely done for patients with several conditions which affect their ability to ingest and absorb food in the normal way? Or would they turn me away on the grounds that the solution lies in my own hands?

According to the last few consultants I have seen, all I have to do is eat a 'normal, balanced diet' and think positive thoughts about how I will react to this, though none has given me any advice as to how I might accomplish this feat, nor offered to refer me to someone who might. (And the fact that an NHS psychotherapist has already determined that there is absolutely nothing wrong with my mind is completely disregarded!)

One would hope that no doctor would refuse treatment on these grounds, but I am not convinced that they would not and, in this respect, we are no further forward now than when Annabel Senior was allowed to die after running out of foods that she could eat without suffering severe reactions.

Annabel was never offered intravenous feeding, nor even told about hypoallergenic formula feeds, at what sadly became, but should never have been allowed to be, the end. And no-one at my local hospital has said anything to make me think that I would be treated any differently, if I was to lose what tolerance I still have left to the two remaining semi-elemental infant feeds.

The two-edged sword of evidence-based medicine

In the late eighties and early nineties, I had seen three allergists, all of whom recognised the reality of my reactions to food and tried valiantly to help, using every treatment option available to them. Now, however, the medics of the noughties, including a professor of allergy, all dismiss my symptoms as psychological because they do not fit current medical theory.

Today's evidence-based approach to medical treatment has done much good in terms of discouraging the use of medical practices that have no evidential foundation of proof, but it has also encouraged doctors to dismiss some forms of evidence, such as that provided by patients, as inferior, and to consider this inadmissible in the absence of clinical corroboration. Consequently, patients with some conditions are routinely blamed for causing their own symptoms (‘It's all in your mind!’) and are turned away without appropriate help.

Guilty until proven innocent

If a patient has one of the conditions which doctors now cynically refer to as 'controversial' - total food intolerance, multiple chemical sensitivity or electrical sensitivity, for example - no amount of reasoning is likely to be able to break through the stone wall which doctors will erect around their own beliefs.

Thus, those of us who have total food intolerance are held guilty of imagining or fabricating our symptoms, because no means exist currently by which we might produce acceptable evidence in order to prove ourselves innocent. So, whilst the technology exists to manage this disorder, those who are affected are rarely even told about the options and are effectively denied access to them by doctors.

This current approach to total food intolerance and some other disorders is turning the role of science in medicine on its head. Instead of science being employed in the service of patients, the sick individual must now meet the perceived requirements of science before their illness will be accepted and their symptoms deemed worthy of attention.

Although research is beginning to appear on the horizon that offers hope of evidence for the link between food intolerance and disease (click here and click here) it will be some time before sufficient corroborative data can be gathered to convince doctors, and it can take years, even decades, for new research insights to filter through to and be accepted by the majority of doctors.

A solitary but welcome ray of hope

Although acceptance of total food intolerance by doctors appears to be as far off now as when Annabel Senior was alive, her death and the reporting of her story by her husband Richard, were the catalyst which eventually led to the mounting of this total food intolerance information section on the Foods Matter website.

As a result, a unique repository of information, comprising articles and personal stories by sufferers and their carers, is now available worldwide to anyone who is affected by this devastating condition.

First published in 2008

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