Total Food Intolerance - A Medical Black Hole
|John Scott recounts his extraordinary story|
Twenty eight years ago I began to experience excruciating abdominal pain after eating sweetcorn. Then, one by one, other foods began to have the same effect, but my GP could find nothing wrong with me nor offer any constructive advice. Left to my own devices, I could only avoid those foods which caused the problem.
The pain I experienced after eating problem foods could be excruciating, would usually last for a number of hours and was always followed by several days of abdominal soreness - described by medics as gastritis. Once a food had begun to be a problem it would continue to cause a reaction whenever I ate it, even after avoiding it for a considerable length of time, and the list of offending foods grew steadily longer.
Doctors listened impassively to my accounts of these painful episodes and invariably prescribed antacids, which were of little help. Eventually, however, I found a solution of sorts myself, when I discovered that a large dose of Epsom salts, taken immediately the reaction began, could greatly shorten the period in pain, although it also inevitably resulted in diarrhoea.
Psychiatry, allergy and disbelief
With my GP insisting that there was nothing organically wrong with me, I asked to be referred to a psychiatrist.
I was offered a course of cognitive behavioural therapy but, after a few sessions, was told categorically by the psychotherapist that there was absolutely nothing wrong with my mind. I was advised that the problem was most likely due to allergy and was bounced back to the GP, who said that there was no local NHS allergist to whom he could refer me.
Following skin prick tests carried out by a private allergist, I was diagnosed with multiple allergies, and introduced to rotation diets and diet record keeping but, as yet more foods began to cause severe reactions, I was increasingly forced to rely on more unusual foods and, eventually, I became restricted to just a few rare foods, sourced, often at considerable expense, from obscure suppliers.
For several years, my life was dominated by my bizarre diet: the acquisition and preparation of special foods - purple yams, pumpkin seeds, tapioca and the rest! - and the necessity of always having to ensure that I had sufficient special food to meet my needs, wherever I might be. I also had to be prepared for the development of new sensitivities to even these foods, and the episodes of intense pain that this always entailed.
A new GP diagnosed both anaemia and scurvy, due no doubt to my restricted diet, and referred me to a gastroenterologist. After carrying out an endoscopy, this specialist told me that there was nothing wrong with my gut, other than some inflammation and dismissed my pain as imaginary. He told me and that I should "Go away and eat a normal diet." When I tried to discuss the possibility of allergy, he declared "I don't believe in allergy!"
ME and yet more specialists
Following a particularly debilitating viral infection, I became perpetually exhausted and began to react, with a variety of symptoms, to more of the remaining 'safe' foods.
After seeing several more specialists, I was told that I had ME and, eventually, I had to retire from the teaching job that I loved so much, aged only 44. However, the interminable rest did little to reduce my exhaustion and the problems with food continued to escalate.
Soon after this, an emergency admission to a different hospital, during an acute reaction to a new vitamin tablet led, very belatedly, to a firm diagnosis of "long-standing food allergy associated with ME." I was given ranitidine to ease the gastritis, domperidone to improve my gut motility, and put on the sip-feed Ensure Plus.
It had taken the medical profession over ten years to acknowledge the serious nature of my illness and offer appropriate treatment for some of its consequences, though there was still no interest in further exploration with a view to identifying and possibly correcting the underlying problem.
I picked up quickly while taking the sip-feed but, all too soon, began to react to even this, and then to the alternatives suggested by the hospital dietitian. I consulted numerous other specialists, including more gastroenterologists and some of the best allergists in the country, and I tried every treatment that was offered, including desensitization to several foods, but nothing was successful.
My own best doctor
Finally, one eminent allergist admitted that there is no successful treatment for my problem, which he said is definitely organic and caused by some as yet unidentified mechanism, possibly enzyme-related. This specialist advised that avoidance of everything that upsets me was the only remaining treatment option, and he 'reassured' me with accounts of several other patients who were managing on extremely restricted diets, including one lady who could only eat potatoes.
When this consultant added that I would be my own best doctor, I took him at his word and determined to become more proactive in managing my own healthcare. I began by personally contacting all the manufacturers of special medical feeds, in the hope of finding a tolerable alternative to Ensure Plus.
I discovered that there are a number of hypoallergenic ‘elemental’ and ‘semi-elemental’ formula feeds available, which no doctor or dietitian had ever mentioned to me. I began to try these, and my current GP, who has always been sympathetic and supportive, prescribed the ones that I found I could tolerate.
As there were, by this time, only a handful of normal foods which did not cause an adverse reaction, I was dependent on a special feed of some kind to maintain adequate nutrition and weight and, thus, ensure my survival. However, all the adult versions of both the semi-elemental and elemental feeds eventually, if not immediately, caused adverse reactions, which now included intestinal bleeding in addition to the usual pain. Fortunately, however, I found that I was able to tolerate powdered semi-elemental infant feeds surprisingly well.
For the next few years, I alternated the semi-elemental infant feeds Nutramigen and Prejomin but, eventually, even these began to produce symptoms, with some batches being more of a problem than others. Taking digestive enzymes helped somewhat, for a time, but I had to stop using Nutramigen when this was reformulated to meet new EU regulations. Then, in 2004, Prejomin also began to cause a continuous, nagging discomfort, which I could not find any way to prevent.
As it looked like I might finally be out of options, I asked my GP to refer me to an immunologist, to explore the possibility that an over-active immune system might be responsible for my reactions to food and that the use of medication to reduce my immune response might offer a way forward.
When I met the immunologist in his allergy clinic, he promptly dismissed my reports of excruciating pain after eating normal foods, and declared, "Food is not the problem, YOU are the problem!" In other words, he thought it was all in my head!
He rubbished the advice of the previous allergist (a respected pioneer in the field of allergy research) to avoid anything which consistently causes pain, and told me, instead, to start eating a wide and balanced diet and, crucially, to change the way I think about how I will react to what I eat!
I was given no advice as to how I might accomplish this feat, nor offered a referral to someone who might be able to help in this direction. Indeed, when I asked for just such a referral, my request was brusquely dismissed.
This, I realised, is the ‘evidence-based' approach to medicine, in which clinical tests are the only truth, and any evidence from the patient which appears to point in a different direction from established dogma is deemed heresy.
Without actual physical evidence, doctors will not consider the existence of a biological problem, and the only evidence that would have been admissible in my case is a positive skin prick test result proving the existence of a 'true allergy' to each food - the only type of reaction to food which doctors will accept.
Practitioners of evidence-based medicine appear not to recognize the fact that all medical tests have limitations, that tests only exist for conditions that are already understood, or that each patient is unique and, as a result of living inside his or her body 24/7 for many years, inevitably knows far more than any doctor about its individual reactions.
A step forward, 26 years late
Having been dismissed by the immunologist, without any constructive help whatsoever, I could only continue to live on the Prejomin, the effects of which continued to worsen during the next two years, particularly the pain and bleeding from my gut and, eventually, my GP referred me to yet another gastroenterologist.
This new specialist acknowledged that I had previously been passed around from pillar to post and agreed to carry out a full work-up of tests.
He was only the second of the fourteen consultants I had seen thus far to look any further into my intestines than the short reach of an endoscope, and he began by ordering a barium follow-through X-ray to examine my entire small intestine. This revealed two strictures, along with a grossly enlarged section which the surgeon said could have 'exploded' at any time, with potentially very serious consequences.
When the diseased sections were removed and analysed, it was confirmed that I have Crohn's disease. (So much for the assertion by an earlier gastroenterologist and the immunologist that the problem was all in my head!)
Although the removal of the strictures has meant that I no longer have any severe pain, I do still experience the same range of other symptoms after eating any normal food. However, the gastroenterologist who found the strictures can see no reason for the occurrence of any further symptoms.
So far as he is concerned, my gut had been restored to normality, so I should once again be able to eat anything and everything. Accordingly, he advised me that I have a choice between either continuing on what he pointedly called my 'self-selected' semi-elemental diet or being 'bold' and trying normal food again.
Just for him, I once again tried a selection of common foods, recording the unpleasant and debilitating reactions which I experienced on eating each of them, and gave him a written report of these, but he remained unconvinced.
In spite of the fact that my previously reported pain and bleeding had been proved to be the result of genuine organic disease, the specialist could still not bring himself to consider that my reports of continuing adverse reactions to food might also be genuine. Here was another dedicated follower of the cult of evidence-based medicine!
I am, of course, immensely grateful to this consultant that the severe pain and bleeding, which I had experienced for several years, is no longer on my list of symptoms, and I realise that he sincerely believes that he has now done all that he can to help me.
However, I was left unable to find any local hospital consultant who will accept that I genuinely react to all normal foods, and I was able to eat only two types of semi-elemental infant feed, both of which caused a number of unpleasant and debilitating symptoms.
Through the back door
As has so often been the case in this saga, I was once again forced to rely on my own ingenuity and, still wondering whether immune modification might be an effective means of reducing my symptoms, I decided to cash in on my recent diagnosis of Crohn's disease by applying to join a clinical trial designed to test the possibility that the immune modulatory effects of an infection with hookworm might be beneficial in relieving Crohn's. My ulterior motive was to also ascertain whether hookworm might have a therapeutic effect on my food intolerance.
I was undeterred by the fact that immune involvement in my case had been dismissed by an immunologist - the one who said that the problem was me rather than the food that I ate! It still seemed logical to me that modulation of my immune system might prove beneficial in reducing my food intolerance.
My experience on the Hookworms for Crohn's Disease trial was a revelation, although the saga of my search for relief would not end there, and further exploration would be required before I finally secured a long-term solution. And, once again, I had to do this without any help from mainstream medicine.
First published in 2004; updated 2007