As you begin meeting with your doctors to learn how to treat and live with your eosinophilic esophagitis (EoE), you’ll want to gather as much information as you can. The better you understand your condition, treatment, and plan, the better control you can have of your overall wellness.
Come prepared with questions for your doctor so that you empower yourself to be your best caretaker. Write or type out an actual list, so you can check each question off as your doctor covers it. You can even ask your doctor if you can record your visit so you can go back and listen later. Or you can bring a family member or friend along so you can focus while they take notes.
Here are some of the areas you can cover as you learn more.
Understanding Your Condition
You may want to ask:
- Why do I have EoE?
Along with explaining the disease and how it happens in the body, your doctor can go over your various risk factors for the disease. For example, if you have another allergic disorder, it raises your chances of having the disease. Your risk is higher if you have someone in your family with the disorder, too.
Other risk factors may be at play, too, such as the climate you live in, your sex (EoE is more common in people assigned male at birth), and what time of year it is.
- How did you confirm my EoE diagnosis?
Your doctor can go over any endoscopy or biopsy test results you have. You can ask where in your body they found eosinophils (esophagus, stomach, or intestines) and how many locations they saw. They may be able to tell you how severe your disease is.
- What’s triggering my eosinophilic response?
This will be an ongoing process, but your doctor can discuss the possible triggers – foods or other things that are making your esophagus react the way it is.
- What doctors will I need to see as I go through treatment for EoE?
You’ll likely see several specialists, including a gastroenterologist, allergist/immunologist, and dietitian, as you navigate treatment. Your doctor can explain what each specialist does and where and when you’ll see them.
Understanding Tests and Treatment
Questions that can help may include:
- What kinds of tests might I need for my EoE?
You may need allergy testing, which involves small pricks to the skin with allergens, to find the trigger for your symptoms. Or you may need blood tests to help with diagnosis and monitoring of your treatment. Typically, a GI doctor will give you an endoscopy and possibly do a biopsy to monitor how your esophagus is doing before and during treatment.
- What treatment options are there for EoE?
Your doctor can review the different typical treatment plans for EoE, including therapies such as an elimination diet, or medications such as proton pump inhibitors, steroids, or monoclonal antibodies. Another option for people who have narrowing of the esophagus that doesn’t get better with medication is a procedure called esophageal dilation.
- What are the goals of treatment?
As you’re deciding on a treatment plan, be sure you know what your doctor hopes to achieve with each therapy, so you’re clear.
- Are there any lifestyle changes I can make to help support my EoE treatment?
Ask your doctor if you should be avoiding certain foods or taking specific steps in your daily life to help reduce EoE symptoms alongside your treatment.
Questions About Medications
To understand your medications, helpful questions for your doctor may include:
- How do medications for EoE work?
Find out how you take any medications you’ll be prescribed. Do you take them at a certain time of day? Do you take them with food? What should you do if you miss a dose?
- What side effects should I look out for?
Ask your doctor what’s normal and what’s concerning as you take EoE medications.
- How will I know if my treatment is working?
Your doctor can explain what tests they’ll do or signs to watch for to tell if your treatment is working.
Questions About Diet Therapy
You can ask your care team:
- How does an elimination diet work?
Your doctor can go over the step-by-step process for taking certain foods out of your diet and the timeline for putting them back in.
- Do you recommend working with a dietitian or nutritionist?
You can also ask for a referral to a dietitian who can help guide you through your new diet. They can help you know what substitutions to make and how to get the right nutrition.
Goals and Moving Forward
At the end of your appointment, you may want to ask:
- How often should I expect to come in for checkups about my condition?
Try to get a snapshot of your continuing care. How often will you need to have tests? How often do you need to be checked by your GI doctor or allergist?
- How can I get in contact with you quickly if I have concerns?
Does your doctor have a patient portal with a message center, or is it best to call the office directly? How long should you expect to wait for a response? Is there an after-hours or emergency number?
- What can I expect my life to look like with EoE?
Although EoE doesn’t have a cure, your doctor can talk to you about the realities of life with the condition and how to get the highest quality of life possible.
- Do you know of any local or online support groups for my condition?
Find out where you can go to learn more about EoE and find support from others with the condition.
Show Sources
Photo Credit: E+/Getty Images
SOURCES:
American Partnership for Eosinophilic Disorders: “Questions to Ask Your Doctor.”
Canadian Digestive Health Foundation: “Frequently asked Eosinophilic Esophagitis (EoE) Questions.”
Mayo Clinic: “Eosinophilic Esophagitis.”
