Adults Living with EGIDs
Adults with EGID face unique issues associated with employment, inter-personal relationships, insurance, medical care, family, and socializing. This page is designed to provide information and strategies to help adults manage life with their disease, and to answer frequently asked questions.
Surviving social outings
Arriving with a full stomach can help you resist the temptation to eat potentially unsafe foods. You should always bring some ‘safe’ food with you just in case you do get hungry. If you are hungry, you may be tempted to cheat. However, if you bring some ‘safe’ food that you can eat (fruit, special cookie, sandwich etc) you may avoid this potential hazard. For some, food gatherings are a test of will power for keeping true to your diet. “Don’t leave home without your safe food!”
Cross-contact occurs when one food comes into contact with another food and their proteins mix. This is a concern whenever you eat food that you have not prepared yourself. Talk to the restaurants manager and chef, preferably in advance and when it is not busy, about your needs. Most restaurants really do want to help you, and it is much easier to explain your needs when you can get the full attention of the staff.
Cooking for family
Cook a meal that celebrates the kind of food you can eat. Alternatively, let unaffected family members participate in food preparation, while you take on other chores. For most of us, our diets are still varied enough that most people will not notice that we prepare a ‘restricted’ meal. Family members with unlimited diets can learn to either cook for themselves or eat meals from the restricted diet ‘menu’.
Most people with EGID have a varied menu. Serve foods you enjoy and that you can safely eat – most people will never know the difference. Another way to approach entertaining is to plan food-free activities such as games, outdoor events, a visit to a museum, or even taking a small hike. For an outdoor activity, most people will bring their own food or purchase a snack.
For day excursions or short trips, bringing your own food or calling your destination in advance for availability of special foods is the safest bet. For longer trips, plan to have specialty foods and/or formula shipped ahead of time to your destination. Depending on your food restrictions, try staying at a hotel that has a kitchenette in the room. Residence Inn, Extended Stay America, and Summerfield Inn are some examples. That way, you are not dependent upon eating in a restaurant all the time. When making vacation plans, consider renting a house or condo for your lodging.
Medical identification jewelry
Medical identification jewelry is designed to alert emergency responders to your unique medical situation, otherwise they may give you medicine containing gluten, lactose, or other food-derivatives. Medication allergies should also appear on the bracelet.
Finding a physician
Transition from a pediatric to an adult physician can be particularly stressful. Not all adult gastroenterologists have a lot of experience with EGID or food related issues. Researching doctors well ahead of the transition time will pay off in the long run. This advice applies prior to relocating to another city or a change in insurance plans.
Some typical questions to ask when looking for a new doctor: What area of gastroenterology do they specialize in? How many patients with EGID has this doctor cared for? Are they willing to learn? Do they have a nutritionist they work closely with?
The reality is that the search for an adult gastroenterologist that you feel comfortable with may take some time. Dealing with a chronic illness requires a strong doctor-patient relationship, so it is worth looking and waiting for the right doctor you can work with. It is important that you can develop mutual trust and a partnership in dealing with this illness.
Dealing with stress, depression and/or anxiety
Don’t let the disease rule your life or make you depressed. There are so many things in life other than food! If you cannot eat out due to allergy concerns, invest in a nice picnic basket and regularly go for picnics with your family or friends. For social gatherings, go to interactive museums, bowling, art museums, miniature golfing, and other activities that do not involve eating. Preparing your special food in advance or in large quantities and freezing will allow you to spend less time on food preparation, enabling you to focus on more important aspects of life.
Depression and anxiety are very common in adults coping with chronic illness. The psychological impact of facing a life-long, incurable illness should not be underestimated. If you feel you are having difficulty coping, get help early. Your family physician may be able to refer you to an appropriate specialist who understands the psychological impact of chronic illness. While many psychologists can help you, finding one that specializes in chronic illness may take some legwork. You will find psychologists who specialize in terminal diseases (cancer), but living with a chronic illness requires a treatment strategy.
Caring for others when you do not feel well
Patience is a key here. At times, it may take the entire family’s support and patience to see through a rough patch. Rest as often as possible to reserve strength. Compliance will help minimize these events. If you do not take care of yourself, you CANNOT take care of others. Encourage your family to educate themselves about your illness. Leave written instructions on medication dosages and scheduling, food ingredients and label reading. For those dependent on formula or tube feedings, educate your family on care of your tube and feeding pump.
Dating can be a rough issue. Suggest activities that are non-food related. Beach, lake, hike, bowling, museums, theater, ice skating – life is full of enjoyable non-food related adventures. Alternatively, learn to accept that others eat- call ahead to the restaurant, prepare ahead of time- or just enjoy a good conversation while the other person eats.
Frequently Asked Questions
What are the current trends in adult EoE specifically with relation to esophageal dilatations? There seem to be more issues with esophageal narrowing in adults. Controversy remains, even among those adult GIs who are more experienced with EoE about using dilatations.
This is an excellent question and the issue is indeed controversial. There have been two reports that have indicated that some adult patients with EoE do have esophageal narrowing and dilatation did relieve symptoms. These observations were not controlled and any benefit of esophageal dilatation remains unclear. Subsequently, another study reported an esophageal perforation with endoscopy without any dilatation. These authors recommended dilatation only be considered in patients with eosinophilic esophagitis (EoE) who failed to respond to medical therapy and have clear-cut esophageal rings that appear to be blocking the passage of food. Currently, EoE can only be diagnosed at endoscopy and biopsy so while there may be a slightly higher risk of perforation in this setting, it is probably relatively rare. On the other hand, esophageal dilatation needs to be approached very cautiously based on the uncertainty. I do not recommend routine esophageal dilatation unless there is clear-cut obstruction of the esophageal lumen despite medical treatment.
Answered by Nicholas J. Talley, M.D., Ph.D., Mayo Clinic
What damage, or effects (if any) have you seen in adults with EoE who have had symptoms for a long period of time but were undiagnosed and untreated?
Many patients with EoE probably go unrecognized even now. I have not seen any long term problems from a delay in diagnosis. One study from Switzerland followed patients for an average of seven years with eosinophilic esophagitis. There were 30 adult patients in the study. While difficulty swallowing continued in 29 of these patients, and esophageal eosinophilic infiltration persisted in all of the symptomatic cases, the inflammation with eosinophils did not extend elsewhere and there was no other significant health impact of the disease. In particular, there was no evidence of any obvious malignancy associated with eosinophilic esophagitis. There was also no evidence of patients evolving to the hypereosinophilic syndrome.
The diagnosis of eosinophilic esophagitis seems to be increasingly made as the syndrome is now recognized, which suggests patients in the past were probably often misclassified. So the good news is not making a diagnosis or receiving any treatment for a long period of time doesn’t seem at all likely to cause any serious problems for the patient, aside from food impacting or difficulty swallowing continuing. Making doctors more aware of this disease is likely to lead to earlier diagnosis for most patients.
Answered by Nicholas J. Talley, M.D., Ph.D., Mayo Clinic
- Elimination Diet 101
- Insurance Coverage for Elemental Formula
- Six-Food Elimination – Practical Tips
- APFED’s Educational Webinar Series
© American Partnership for Eosinophilic Disorders 2008-2015. Revised 4-10-2011.
Authors: Wendy Book MD, Bradley Evans