Pediatric collagenous gastritis

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Overview

Pediatric collagenous gastritis is a very rare stomach condition that affects children and teenagers. In this disease, an abnormal layer of tough, fibrous tissue called collagen builds up just beneath the lining of the stomach. This buildup damages the normal stomach lining and prevents it from working properly. The condition is sometimes called collagenous gastritis in children or juvenile collagenous gastritis to distinguish it from the adult form of the same disease, which tends to behave differently. Children with this condition most often experience stomach pain, nausea, vomiting, and a significant drop in red blood cell levels (anemia), which can cause tiredness and pale skin. The anemia can sometimes be severe enough to require blood transfusions. Because the symptoms are similar to many other stomach problems, diagnosis is often delayed. The only way to confirm the diagnosis is through a stomach biopsy, where a tiny piece of tissue is taken during an endoscopy and examined under a microscope. Treatment is mainly focused on managing symptoms and correcting anemia. There is no single proven cure, and doctors may try different approaches including iron supplements, steroids, or other anti-inflammatory medicines. The disease course in children can vary — some improve over time, while others have ongoing symptoms. Regular follow-up with a specialist is very important to monitor the condition and adjust treatment as needed.

Also known as:

Key symptoms:

Stomach pain or crampingNausea and vomitingAnemia (low red blood cells causing tiredness and pale skin)Loss of appetiteUnintended weight lossFeeling full quickly after eatingFatigue and low energyBlood in vomit or dark/tarry stools (in some cases)Poor growth or failure to gain weight as expected

Inheritance

Sporadic

Usually appears on its own, not inherited from a parent

Age of Onset

Childhood

Begins in childhood, roughly ages 1 to 12

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Pediatric collagenous gastritis.

View clinical trials →

No actively recruiting trials found for Pediatric collagenous gastritis at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the Pediatric collagenous gastritis community →

No specialists are currently listed for Pediatric collagenous gastritis.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Pediatric collagenous gastritis.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Pediatric collagenous gastritis

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Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

Rare disease caregiving can be isolating. Connect with counseling and peer support.

Family & Caregiver Grants

Financial assistance programs specifically for caregivers of rare disease patients.

Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Questions for your doctor

Bring these to your next appointment

  • Q1.What treatment do you recommend for my child, and how will we know if it is working?,How often does my child need blood tests and endoscopies to monitor this condition?,What signs should prompt me to bring my child to the emergency room?,Is there a risk that my child's anemia will become severe enough to need a blood transfusion?,Are there any dietary changes that might help reduce my child's symptoms?,Should my child be referred to a specialist center with experience in this rare condition?,Is there any research or clinical trial my child might be eligible to join?

Common questions about Pediatric collagenous gastritis

What is Pediatric collagenous gastritis?

Pediatric collagenous gastritis is a very rare stomach condition that affects children and teenagers. In this disease, an abnormal layer of tough, fibrous tissue called collagen builds up just beneath the lining of the stomach. This buildup damages the normal stomach lining and prevents it from working properly. The condition is sometimes called collagenous gastritis in children or juvenile collagenous gastritis to distinguish it from the adult form of the same disease, which tends to behave differently. Children with this condition most often experience stomach pain, nausea, vomiting, and a

How is Pediatric collagenous gastritis inherited?

Pediatric collagenous gastritis follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Pediatric collagenous gastritis typically begin?

Typical onset of Pediatric collagenous gastritis is childhood. Age of onset can vary across affected individuals.