If you develop certain symptoms after undergoing an allogeneic stem cell transplant (sometimes abbreviated alloSCT), your doctor may suspect that you’ve developed graft-versus-host disease (GVHD). In this article, we’ll explain the steps doctors take to diagnose GVHD, including checking for key symptoms, testing, and ruling out similar conditions.

Once your doctor has confirmed your diagnosis and what type of GVHD you have, you can begin treatment and start feeling better.

Signs and Symptoms of GVHD

Depending on what symptoms you have and how severe they are, your doctor may determine that you have acute GVHD, chronic GVHD, or an overlap of both. Healthcare providers can usually manage GVHD successfully, but in some instances, the disease can be life-threatening, so it is important to seek medical attention early.

The first sign of graft-versus-host disease is usually a change in your health that doesn’t improve over time. Doctors often look for specific symptoms that are commonly associated with GVHD. They might look for changes to your skin, mouth, and eyes. For example, you might develop a persistent rash that doesn’t go away with over-the-counter treatments. Or, you may notice increased dryness in your eyes that makes them feel gritty or irritated. Some people develop painful sores inside their mouths posttransplant, making it hard to eat or drink comfortably.

Other signs and symptoms of GVHD can include:

• Hair loss on your head or body
• Mouth ulcers
• Gum disease
• Diarrhea, nausea, or vomiting
• Abdominal pain
• Skin tightness or swelling
• Vision changes
• Muscle or joint weakness or pain
• Cramping
• Jaundice (yellowing of the skin or eyes)

In addition to these symptoms, chronic GVHD can affect your liver, lungs, or other internal organs. If GVHD affects your lungs, it could cause shortness of breath when walking or climbing stairs. Or, your doctors may find abnormalities in your liver function during routine blood tests. Some people also report dryness or irritation in the genital area, which may lead to pain during intercourse.

Clinical Examination

If your doctor suspects you might have GVHD, they may start by giving you a clinical examination. They’ll ask you detailed questions about your symptoms and medical history. In some cases, especially for acute GVHD, certain key symptoms — such as rash, abdominal cramps with diarrhea, and elevated liver enzyme levels — may be enough to confirm a diagnosis.

However, in most cases, further testing will be needed. This might include a biopsy (tissue sample) taken from one or more areas of the body, depending on what symptoms you have.

Confirming the Diagnosis With Biopsies

A biopsy is a key tool in confirming a diagnosis of GVHD. During the procedure, a small sample of tissue is removed from an affected area and examined under a microscope. This allows doctors to see if the physical changes in your tissues are consistent with GVHD.

Acute graft-versus-host disease mainly affects the skin, liver, and gastrointestinal (GI) tract. However, these areas are often an area of focus for determining a diagnosis of chronic GVHD, too. In both cases, a biopsy might be taken from the skin or GI tract. If you have a persistent rash, your doctor might take a skin biopsy to look for signs of inflammation or scarring. If your blood tests show abnormal liver function, they might also choose to perform a liver biopsy to assess the extent of the damage. In cases where severe diarrhea is an issue, your doctor may need to take a rectal biopsy to sample the tissue from your GI tract.

While biopsies are highly effective at identifying GVHD-related changes, they’re usually combined with other diagnostic tools to get a complete picture of the disease. The results of the biopsy can also help guide treatment decisions by showing how severe the GVHD is in specific areas.

Specialized Testing for Diagnosing GVHD

In addition to biopsies, doctors rely on specialized tests to evaluate how GVHD is affecting your body. These tests are tailored to specific symptoms and can provide valuable insights into the disease’s impact.

For eye-related symptoms, your doctor might perform a Schirmer’s test to measure tear production. This simple test involves placing small strips of paper under your eyelids to see the amount of tears your eyes produce in a set amount of time. If your eyes are extremely dry, this could indicate chronic GVHD.

If you have lung symptoms, such as shortness of breath, your doctor may order pulmonary function tests. These tests measure how well your lungs are working. They can also detect inflammation or scarring of the lungs caused by GVHD using other tools like imaging scans or a biopsy.

Imaging Studies for Diagnosing GVHD

Imaging tests are often used to get a clearer picture of how GVHD is impacting internal organs. These tests are especially helpful when symptoms involve the lungs, liver, or GI tract.

Magnetic resonance imaging (MRI), a computed tomography (CT) scan, or an X-ray might be used first. These scans can show areas of inflammation, scarring, or other abnormalities that aren’t visible during a physical exam. For example, a CT scan of the lungs can show early signs of damage caused by GVHD, such as thickened tissue or fluid buildup. Similarly, an MRI of the liver can help identify inflammation or structural changes linked to the disease.

Ruling Out Other Conditions

Not all symptoms following an allogeneic stem cell transplant (also known as a bone marrow transplant) are caused by GVHD. For example, infections are common in people with weakened immune systems. Sometimes, the symptoms of an infection or drug reaction can overlap with the symptoms of GVHD. Medication side effects can also cause rashes, digestive issues, or other problems that look similar to GVHD symptoms.

To make sure the diagnosis is accurate, doctors use a process called differential diagnosis. This involves ruling out other possible causes of your symptoms through careful testing and evaluation. For instance, blood tests can help identify infections. Imaging or biopsies can help doctors tell the difference between GVHD and other conditions affecting the same parts of the body.

Diagnostic Criteria for Chronic GVHD

To diagnose GVHD, doctors consider several factors. First, you must have received an allogeneic stem cell transplant with donor cells. Next, they look for mouth sores, rashes, or dry eyes, among other symptoms. Finally, they’ll use test results such as biopsies, imaging, and blood work. This is key to confirming the diagnosis and ruling out other potential causes.

This comprehensive approach ensures that the diagnosis is accurate. A correct diagnosis means you can start treatment as soon as possible. It also helps doctors assess the severity of the disease through staging and grading. All of these things are necessary to create a treatment plan for your specific needs.

Living With Chronic GVHD

For transplant recipients, receiving a diagnosis of chronic graft-versus-host disease can be challenging. However, it’s the first step toward managing the disease and improving your quality of life. By working closely with your healthcare team, you can develop a treatment plan that addresses your specific symptoms and needs. These might include topical corticosteroids (or simply steroids) such as prednisone or immunosuppressive drugs such as methotrexate.

Be sure to stay connected with your oncology team about any new or worsening symptoms. With the right support and care, many people find ways to manage their symptoms and have a high quality of life.

Talk With Others Who Understand

At myGVHDteam, the site for people with graft-versus-host disease and their loved ones, people come together to gain a new understanding of GVHD and share their stories with others who understand their experience.

How did you get diagnosed with GVHD? What advice would you share with others who are going through something similar? Share your experiences in the comments below.