After a lengthy, expensive, and invasive process, I received a diagnosis of eosinophilic esophagitis (EoE), a hard to pronounce and fairly rare — but increasingly common — chronic allergic disorder. Hesitant to accept a lifelong diagnosis and the sick person’s role I imagined would come with it, I asked my physician what would happen if I did nothing to treat it. His reply, “an esophagus is a terrible thing to waste,” implied, as I would later learn, that ignoring the problem could leave me dependent on a feeding tube, unable to eat or drink by mouth. I had three options for treatment: swallowed steroids, replacing all food with formula, or a restrictive diet plan designed to identify the food(s) to which my body was reacting. I happily chose the diet.
The formal recognition of EoE was fairly recent; the condition was first identified as a discrete entity in mid-1990s, and was added to the International Classification of Diseases (ICD) in 2008.1 Despite the newness of the condition, my physician and I agreed on a 90-year-old treatment plan: an elimination diet.
Albert Rowe and the Elimination Diet
California-based physician Albert Rowe popularized his so-called “Elimination Diets” beginning in 1926, when he recommended a specific plan for identification and treatment of suspected food allergies. Claiming that commonly used cutaneous scratch tests for allergies produced frequent false-negative results and that clinical symptoms seldom aligned with test results, Rowe argued that his diet plans were ideal for the definitive diagnosis of food allergies and identification of specific trigger foods.
The basic theory underlying elimination diets is simple; when tests cannot reliably identify food triggers, dietary experimentation is a practical alternative. These diets, as prescribed by Rowe, his colleagues, and modern practitioners, require that patients remove potential allergens from the diet until all symptoms are resolved.2 After a period of time without symptoms, patients are reintroduced to one previously eliminated food at a time and wait to see if the original symptoms return. If the symptoms return; the food is permanently eliminated from the diet. If not, the food is cleared from suspicion.
Fearing that people who undertook elimination diets without sufficient guidance from medical professionals would suffer from nutritional insufficiencies, Rowe and his colleagues assembled detailed diet plans for patient use. These plans specified which individual foods were forbidden and allowed under each variation of the diet. Daily eating plans included recipes for each meal and both macronutrient and micronutrient counts. Above all else, Rowe and other mid-century proponents of elimination diets stressed that diagnostic diets should never be undertaken to the detriment of nutrition.
An Atypical Diagnostic Tool
As historian Matthew Smith describes in his history of food allergies, the rejection of more “scientific” and measurable skin tests using professionally prepared allergen extracts in favor of more qualitative and patient-driven diagnostic tools was a bold move that distanced food allergists from their more orthodox peers.3 Smith argues that, in the mid-twentieth century, “to reject skin testing for food allergy was, in a sense, to sever the link between allergy and legitimate science.”4
So many diagnostic tools are designed to involve minimal patient participation. Ultrasound, x-ray, MRIs, and CT-scans often require only that the patient remain motionless, while blood tests and biopsies facilitate diagnoses made somewhere off in a laboratory, with the patient herself nowhere in sight. With physicians in the twentieth century so often trained to discount patient narratives in favor of more “objective” sources of information, it makes sense that elimination diets were seen as inferior diagnostic tools, and its proponents less “scientific.”
Smith notes that undertaking an elimination diet required a great deal of mutual trust and understanding between a physician and his patient. He asserts, “If food allergists were to experience any kind of clinical success, they had to empower their patients to take a leading role in both diagnosis and, especially, treatment.”5
These diets required considerable effort and surveillance by both the physician and the patient. Rowe suggested that physicians interview patients regularly to be sure that they and those who cook for them are adhering to the plan, noting that “only when the physician is certain that the patient cooperates fully in this respect can he make correct deductions regarding the effect of the diet.”6
Rowe even went so far as to suggest that the physician visit the patient’s baker to observe the baker make bread, watching for the inadvertent addition of prohibited ingredients.7 He also instructed patients to bring their own oils, breads, and pastries with them to restaurants, hotels, or friends’ houses, to avoid accidentally ingesting something forbidden.8
In his writing, Rowe emphasized that any deviation from prescribed diets was unacceptable, insisting that, “Above all else, the patient must not deceive himself and his physician … by making conscious or unconscious mistakes … large or small.”9 Patients who struggled to adhere to these rigid diets may have preferred the “orthodox” allergists.
Life during an Elimination Diet
Elimination diets occupy a peculiar role in the care of food-allergic people: they serve simultaneously as both diagnostic tools and treatments, and are ever-present in the lives of those who adhere to them. With a heavy reliance on patient action and no required medical technology, allergy sufferers may have taken it upon themselves to conduct their own dietary experiments. My uncle, for example, embarked upon such a diet as a young man in the 1970s, and, after diagnosing himself with a wheat allergy, has not since eaten wheat.
With food being so necessarily tied to both health and everyday living, strict elimination diets can easily wreak havoc on social lives. While I was following the diet, I spent hours each day preparing all of my food and hundreds of dollars each week on approved groceries scavenged from a number of stores. I ate only food that I cooked myself, and avoided social interactions involving eating.
I was anxious whenever friends or coworkers invited me to eat out with them or at their homes, and sometimes made up excuses for why I couldn’t join, fearing that a full explanation of my restricted diet would make others uncomfortable and leave me branded as sickly or dramatic.10
After a short two months, repeat biopsies showed that my diet was a failed experiment; in my case, avoiding the most common allergens only exacerbated the stress to my esophagus. My physician and I decided to abandon our hunt for the offending food(s), in favor of the corticosteroids. Like so many historical medical techniques, Rowe’s diets live on in my life and others’, adapting to new conditions, new philosophies of medical care, and new understandings of the body.
- Evan S. Dellon, Elizabeth T. Jensen, Christopher F. Martin, Nicholas J. Shahen, and Michael D. Kappelman, “The Prevalence of Eosinophilic Esophagitis in the United States,” Clinical Gastroenterology and Hepatology 12, no. 4 (April, 2014): 589-596; Chris A. Liacouras and Jonathan E. Markowitz, “A History of Eosinophilic Esophagitis,” Chapter 1, in Eosinophilic Esophagitis, edited by Chris A. Liacouras and Jonathan E. Markowitz, (New York: Humana Press, 2012), 1-10. Return to text.
- Clement B. P. Cobb, “Elimination Diets for Children,” American Journal of Diseases of Children 50, no. 1 (July, 1935): 187-211; Jane Dale, and Harvey D. Thornburg, “Diets for the Identification of Food Allergies,” JAMA 93, no. 7 (August 17, 1929): 505-512; Albert H. Rowe, Elimination Diets and the Patient’s Allergies: A Handbook of Allergy, 2nd edition (Philadelphia: Lea & Febiger, 1944); Amir F. Kagalwalla, Timothy A. Sentongo, Sally Ritz, Therese Hess, Suzanne P. Nelson, Karan M. Emetic, and Hector Melin-Aldana, “Effect of Six-Food Elimination Diet on Clinical and Histologic Outcomes in Eosinophilic Esophagitis,” Clinical Gastroenterology and Hepatology 4, no. 9 (September, 2006): 1097-1102. Return to text.
- Matthew Smith, Another Person’s Poison: A History of Food Allergy, Arts and Traditions of the Table: Perspectives on Culinary History, edited by Albert Sonnenfeld (New York: Columbia University Press, 2015). Return to text.
- Ibid., 77. Return to text.
- Ibid., 87. Return to text.
- Rowe, Elimination Diets and the Patient’s Allergies, 137. Return to text.
- Ibid., 138. Return to text.
- Ibid., 140. Return to text.
- Ibid., 137. Return to text.
- I did, however, find great support in an online community of people with the same condition. Being that this is Nursing Clio, I would be remiss not to mention that although male diagnoses of EoE outnumber female diagnoses 3:1, the active members of this international group are overwhelmingly female. Return to text.