Receiving a diagnosis of eosinophilic gastritis and/or eosinophilic duodenitis (EG/EoD) may bring a host of changes to your lifestyle as well as many different emotions.
This disease affects the digestive system, causing inflammation. For that reason, it causes symptoms such as abdominal pain and nausea that can affect your ability to take part in daily activities. In addition, EG/EoD is a chronic condition for some, which can lead to having concerns about the future.
It may have taken some time to get a diagnosis of EG/EoD, which can be frustrating. Some people have symptoms for many years before the cause is found. Being erroneously diagnosed with another condition is also not uncommon. EG/EoD was considered to be rare but there is increasing concern that it might be underdiagnosed.
In addition, patients may need to become strong advocates for themselves in order to get tested for EG/EoD. A procedure called an upper endoscopy, where the inside of the upper digestive system can be seen and tissue can be taken for testing (biopsies), is the most accurate in diagnosing the condition.
It will take time and the help of friends, family, and community to understand how the condition will affect your life and learn how to cope with it. This article will discuss how to manage the emotional, physical, social, and practical effects of EG/EoD.
It’s common to experience a range of challenges with maintaining mental health after being diagnosed with a chronic illness. Some people with EG/EoD may even experience increased stress, anxiety, depression, or strong emotions about their disease, its treatment, or the diagnosis itself.
A diagnosis can come as a relief, especially after seeking a reason for symptoms for a long time. However, it is also considered one of the most stressful times of living with a chronic illness.
Learning about the disease, starting treatment, and understanding the potential complications and difficulties of life going forward can bring on many new emotions.
People who live with EG/EoD may feel helpless, isolated, and out of place. It may seem as though people who don’t live with the condition will not be able to understand its difficulties or what life is like when living with it. All of these complicated feelings can lead to becoming more isolated, which may negatively affect symptoms.
For these reasons, it’s recommended that people who live with EG/EoD seek assistance in sorting through the emotional challenges of the disease. This can mean anything from working with a social worker, a patient advocacy group, other patients, or more formal counseling.
Care from a psychologist or other mental healthcare professional can be helpful in the treatment of the emotional difficulties of life with EG/EoD. A subspecialty of health psychology called psychogastroenterology is centered on managing the mental health of people who live with digestive conditions.
Working with a gastropsychologist or a psychologist who is experienced in treating people with chronic illness is recommended. This is especially true when experiencing any really difficult periods with the illness.
EG/EoD has a relationship to food allergies in many cases. One of the first treatments used to try to get symptoms under control is a food elimination diet. What this means is that a certain number of foods may be removed from the diet for a time. Usually, this is anywhere from between two and six of the most common allergenic foods.
That means making adjustments to not only what’s eaten at home, but also in the ability to go out to restaurants and attend events with family and friends. This drastic diet change sometimes results in a temptation to not follow diet guidelines in an effort to be like everyone else.
However, not following a recommended diet could lead to an uptick in symptoms. Because EG/EoD causes inflammation, getting away from the management plan could trigger a flare-up. It could also prompt the need for more doctor visits or emergency visits to cope with the symptoms.
When going to parties or events, some people with digestive disease find it helpful to bring along their own food. This can be difficult, however, especially in some cultural and religious settings.
For that reason, each person needs to find the balance between their emotional, cultural, and spiritual needs and the demands of their body. A dietitian who is specialized or has experience treating people with digestive disease or eosinophilic disorders can help find that balance.
There’s also an element of trial and error with diet. While there are some guidelines on how diet is approached in EG/EoD, foods might be removed and added back into the diet to see if they affect symptoms at all.
EG/EoD is not considered common, though there may be more people living with the condition than originally thought. However, it’s unlikely that someone living with the condition will meet another person or family dealing with it without connecting with advocacy groups.
There are various groups for rare diseases and for people affected by eosinophilic disorders that can help provide assistance finding a physician, meeting other patients, and accessing educational materials. Some of these groups include:
Other patients can be a wealth of information in learning about the disease as well as the tips and tricks to improve quality of life. Support groups can be an excellent way to become less isolated in the disease and for family members or caregivers to connect with other people experiencing the same issues.
Because a diagnosis of EG/EoD is not as common, in-person groups might not be available in many locations. Online support groups can also be a good source of information, especially those connected to patient advocacy organizations or hospital systems.
For younger patients, such as children and teens, bullying or teasing can be a challenge. Other children may say negative things about needing a restrictive diet or needing to bring their own food to school events or parties.
Parents and caregivers may help with these issues by role-playing scenarios so kids have a plan if and when they occur. It may also be useful to talk to teachers, school administrators, and other parents about EG/EoD. You can educate them about the disease and have them as allies in avoiding negative social situations.
An unfortunate fact of life with a chronic illness such as EG/EoD is the need for continuity with health insurance, with no lapses.
For adults and caregivers, that can mean making mindful choices regarding choosing a career and taking a job that offers health insurance. Other options include obtaining insurance through the insurance marketplace or applying for insurance through state or federal sources.
Another challenge for people living with digestive diseases is travel. Traveling will require some planning because it will be necessary to ensure that food restrictions can be accommodated.
It might mean calling restaurants or hotels to ask about foods available, looking at menus online, traveling with foods, or having food shipped to the travel location. Hotels or vacation rentals that have kitchens or kitchenettes are helpful because it can mean being able to cook and have more control over food.
Making changes to diet to accommodate removing certain common foods can also be expensive. Liquid replacements, which are also sometimes used to treat EG/EoD or to meet nutritional or calorie goals, can also be an unexpected expense.
Other patients, patient advocacy groups, and a dietitian can help find ways to deal with the cost of following special diets.
People living with EG/EoD may also want to consider wearing medical identification jewelry. This can help in an emergency to let everyone know if certain foods or medication additives should be avoided because they may lead to symptoms or inflammation.
After a diagnosis of EG/EoD, you will need to learn to cope with how the condition affects your daily life. Your emotional balance may be upset, and it can be helpful to consult a mental health professional and support groups to help you live your best life.