Living with Whipple's disease
A bacterial infection that mostly affects the gut and how the body absorbs fats and nutrients, but can reach other organs.
Understanding Whipple's disease
It usually occurs in the digestive system, where it interferes with absorbing nutrients (malabsorption). It can also affect the heart, lungs, brain, joints, and eyes. It causes weight loss, incomplete breakdown of fats and carbohydrates, and immune system problems.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Diarrhea
- Belly pain
- Weight loss and poor absorption of food
- Joint pain and arthritis
- Fever
- Tiredness
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include allergy and immune system specialists, brain and nervous system specialists, digestive system specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Immune Deficiency Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Allergy and immune system specialists (allergists / immunologists); Brain and nervous system specialists (neurologists); Digestive system specialists (gastroenterologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Immune Deficiency Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Immune Deficiency Foundation
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD says it is caused by infection with bacteria called Tropheryma whipplei.
Also known as: intestinal lipodystrophy; intestinal lipophagic granulomatosis; intestinal whipple's disease; secondary non-tropical sprue; tropheryma whipplei caused disease or disorder; tropheryma whipplei disease or disorder
Patient organizations
- Immune Deficiency FoundationPrimary immunodeficiency · United States
Broader rare-disease groups
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Whipple's disease.
Explore research for Whipple's disease
Explore actively recruiting Whipple's disease studies with HealthSpark.
Find actively recruiting studies for Whipple's disease with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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