Janice Joneja’s Personal Story
My infant son had been diagnosed with severe asthma. He had suffered with eczema almost from birth, first on his face, hands and legs, and later on just about every area of his skin. By the time he was five years old he was dependent on oral steroids for control of both conditions. Whenever we tried to reduce his intake of Prednisone below about 10 mg per day, he would develop severe, and on more than one occasion, life-threatening asthma, which his pediatrician diagnosed as status asthmaticus. At the lower dosages of Prednisone the eczema on his hands became extreme; frequently the eczematous patches became infected with common skin bacteria, and his fingers swelled to double their normal size. He would often go to kindergarten wearing little white cotton gloves to cover the oozing sores and to keep in place the steroid-containing ointment that I liberally applied to his hands. |
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By the age of about four, this response had thankfully stopped, but whenever he drank orange, or any other citrus juice for many years, he would start scratching, particularly his hands, a clear indication that it was a likely exacerbating factor for his eczema, which often starts with itching. Another food that would consistently cause similar scratching was chocolate. Halloween and birthday parties were occasions for bartering – all the chocolates, chocolate cake and cookies were assessed, and exchanged for a toy or other desired treasure of equal value. It became a game that the whole family learned to enjoy. |
 Whenever I mentioned these “food allergies” to my son’s doctors, the response was polite dismissal. It is likely that, because his father was also a physician, they were reluctant to openly label his mother “neurotic” and “over-protective” as so many parents of allergic children were in those days (the mid-1970s). Only one doctor, his respirologist, was frank enough to declare, “There’s no such thing as food allergy!” Certainly at that time and sadly, occasionally today, the idea that asthma and eczema have an allergic etiology, especially the idea that food allergy might be involved, was, and is, categorically denied by too many medical practitioners. It was not until he was proven to be anaphylactic to peanuts that his medical advisors would entertain the idea that my son might also have food allergy, in addition to his other problems. |
What made the whole situation so bizarre for me was the fact that my early training in immunology took place in the university department where the chairman was none other than Professor Philip Gell, one of the co-discoverers of the antibody responsible for allergy (IgE), and who, with Professor Robin Coombs, developed the classification of the hypersensitivity reactions responsible for allergy, a system that is still recognized today. In essence I learned the immunology of allergy from the undoubted “master” of the subject, and followed this with research in medical microbiology and immunology, gaining a Ph.D. in the field, and later an appointment as Assistant Professor in Microbiology at the University of British Columbia. As a graduate student I was actually contracted to teach a course in the immunology department (at that time called the Department of Experimental Physiology) where the science of allergy immunology had its inception – and yet – when it came to helping my own son with his allergies – I was of no more assistance than any other parent.
As all parents will, I consulted every “expert” in an effort to help my son, but with increasing alarm and confusion, I realized that the field of allergy, especially food allergy, was fraught with controversy. There was a regrettable lack of scientific research, and even less credible clinical data. As a result, the field was open to every form of “alternative medical practice”, ranging from the pseudo-scientific (and therefore almost plausible) to the frankly frightening. I consulted everyone, from those who use electroacupuncture (Vega tests), biokinesiology (testing muscle strength while the patient holds a vial containing the suspect food), urine analysis, hair analysis, iridologists, practitioners of radionics, practitioners who consult crystals – anyone who might help! This phase of my search for answers provided one valuable piece of information: When a field lacks scientific validation that is based on research conducted according to the tenets of traditional scientific method, it is vulnerable to infiltration by anyone offering hope – real or not. The old “snake oil” ruse. And so with food allergy. The real tragedy in this situation was the fact that, because the science was sparse, “traditional” medical practitioners tended to avoid the field, which was then taken over by “pseudo-scientists”. The result was that the legitimate scientist and the ethical clinician did not wish to be associated with an area of practice lacking scientific and medical validation.
My concern and confusion were increased to an alarming extent with the events that occurred in my son’s thirteenth year. For several months he had been experiencing severe migraines. At their worst they happened three or four times a week with severe headache and vomiting. He would spend twenty-four hours in his darkened bedroom with each episode. Finally he was hospitalized, and every appropriate test was conducted. Special care was taken with these tests, since his own father was the only neurologist (and, incidentally, the only psychiatrist – he is, and was, a Fellow of the Royal College of Physicians and Surgeons of Canada in both specialties) in the town at the time. No pathology was detected that could account for the migraines. His pediatrician prescribed a “parentectomy”: she had reached the conclusion that stress within the family home was responsible for our son’s problems, and suggested that we should consider making arrangements for his living elsewhere. {As an aside, later he did attend boarding school, from Grade 9 to 12, and his allergies became even worse than they had been at home!}. Fortunately for us, his parents, who were in danger of living the rest of our lives in the shadow of the guilt engendered by the thought that we alone were responsible for the debilitating ill-health of our only son, a cause for the migraines was discovered. Once again it was related to food.
Based on his observation that he felt nauseated and ill after eating meat, our son decided to become a strict vegetarian. In accordance with his request, when he returned home from his two-week stay in the hospital, with symptoms unchanged in severity and frequency, I provided meals completely free from food derived from any animal source. The most amazing and gratifying result of this drastic change in diet was that he became free from migraines, immediately and completely! For several years he remained a strict vegan in his food choices. He did not eat any meat, poultry, fish, egg, milk, or milk products. He found that ice cream, milk, cheese or other milk-based food caused immediate vomiting. In spite of his continuing anaphylactic reaction to peanuts (even the smallest quantity of peanut as a “hidden ingredient” in a food, accidentally eaten, resulted in immediate throat swelling and the onset of anaphylaxis, requiring prompt medical intervention) he was able to eat any other legume with impunity. This was fortunate, since his main sources of protein were dried peas, beans, lentils, and soy. I became an expert in bean-based gourmet cooking Years later, as a result of careful food challenges, we discovered that the primary cause of his migraines was pork, followed to a lesser extent by beef. Although he is not now vegetarian, as long as he avoids pork, beef, and foods containing these meats he remains free from those distressing migraine headaches. Interestingly, as a result of our careful food challenges, we discovered that he is also highly sensitive to sulfites – a situation that I now know to be quite common in steroid-dependent asthmatics.
The most important outcome of the experiences with my son’s allergic conditions (and to some extent, my daughter’s) was, for me, the realization that in spite of my specialized knowledge about the scientific bases of the clinical signs I was witnessing at first hand, I, and the medical specialists involved in their care, were unable to be of any real assistance in addressing the causes of my children’s allergic diseases. The recognition of the limited resources available to my children, to me, and to the untold numbers of people in similar situations has prompted me to pursue what has been my primary objective in the past twenty-five years. Whereas previously I was an academic scientist, conducting research into the mechanisms responsible for microbial and immunological diseases, now I am focused on the clinical application of the knowledge gained from laboratory science for the benefit of people experiencing the results of such diseases. This type of “evidence-based” research is becoming increasingly important in medicine, and in no context is it more valid than in the pursuit of understanding and controlling the different ways in which our bodies interact with the food we eat – especially when the food that should nurture becomes a cause of distress.
Listen to more about my personal story in this podcast with Dr Russell Faust, the Booger Doctor
http://www.boogordoctor.com/wp-content/uploads/2012/01/Joneja-5-5-2010-Inaugual-Interview1.mp3
In 1991 I was instrumental in the establishment of a unique service – the Allergy Nutrition Research Program at Vancouver Hospital and Health Sciences Centre in Vancouver, British Columbia. The program comprised three components:
In January 2004, after a year as an Honorary Research Fellow at the University of Birmingham, where I returned to initiate basic scientific research into the reactions that I had observed in my clinical practice, I decided that the time was right for me to establish a service that can be accessed by anyone who suffers from adverse reactions to foods, in any part of the world. Vickerstaff Health Services Inc. is the company that I established in response to numerous requests from patients, physicians, dietitians, and other health care professionals, who have recognized a pressing need for a service that interprets and applies the science of food allergy and food intolerance to practical clinical practice. The Company’s mandate is to provide a way for the food-sensitive person to live with their problem, and achieve the fullest degree of health of which their body is capable. Together with the food-sensitive individual, or their care-giver, we seek to provide complete, practical methods of management of the diet so that the food sensitive person can eat healthily while avoiding the foods that make them sick. Before that can be achieved, of course, it is essential that the food components and food additives that are responsible for food intolerances are accurately identified, and this process is the essence of our service.
No diagnostic test alone will reveal the identity of the specific foods that are causing a person’s symptoms. Every allergist and medical practitioner in the field recognizes that identification of the culprit food requires a number of diagnostic criteria: a thorough medical history, carefully conducted appropriate medical tests, and elimination and challenge of the foods suspected to be involved in triggering symptoms. The latter is designed to demonstrate that eliminating the food avoids the symptoms, and, importantly, that eating the food will cause the symptoms to reappear.
Thirty years ago I found myself in a strange dilemma. My training as a scientist and my thinking and emotional response as a mother landed me in a situation where I felt helpless in both roles.
I had first noticed that he seemed to react to specific foods when he was about two years old. Orange juice would result in him running through the house, screaming. When I tried to hold him to stop the rampage, I felt his whole body quivering and shaking, and it was clear that he had no control over this reaction. Such behavior could be triggered predictably and consistently by his drinking a glass of orange juice, but occurred at no other time.