Living with Eosinophilic Disorders:
There are several major challenges to living with EE -- managing the painful symptoms, coping with a restricted diet, and in some cases, dealing with elemental diets that may be unpalatable and are certainly boring and repetitive.
In some cases, removing a few allergens from the diet makes a major difference in the course of EE. However, for some people, it's necessary to remove numerous foods from the diet. This can create three major issues. First, and most immediately, a severely restricted diet may cause difficulties in getting sufficient nutrients and calories. Second, finding foods that are safe for a diet with multiple allergies can be frustrating and challenging. And finally, severely restricted diets compound the normal social pressures of living with food allergies, especially for children.
While none of these issues are simple, there are some tools that you may find helpful. First, connect with one of the major organizations providing support, resources, and information to the EE community. The American Partnership for Eosinophilic Disorders (APFED) and Campaign Urging Research for Eosinophilic Disease (CURED) both offer a wealth of information on their websites and may be able to help you get in touch with other families or resources in your area.
Second, consider working with a nutritionist or dietitian with specific expertise in restricted diets. Your allergist or gastroenterologist may have a recommendation for such a professional in your area. APFED offers a resource for families whose doctors may have recommended an elemental diet.
Finally, managing the social and emotional aspects of a restricted diet are similar for EE patients and for people with other food allergies, although many people with EE have to contend with many food allergies. You may find some of these resources useful:
- Tips for Safe Holidays with Food Allergies
- Preschool and Food Allergies
- Managing Allergy-Related Stress
Feldman, Mark, et al. Sleisenger & Fordtran's Gastrointestinal and Liver Disease. 8th Ed. Philadelphia: Saunders Elsevier, 2006.
Gonsalves, Nirmala. "Food Allergies and Eosinophilic Gastrointestinal Illness." Gastroenterology Clinics. Mar. 2007 36(1): 75-91.