Whipple’s disease
Whipple’s disease is a rare bacterial infection in your small intestine. It affects your body’s ability to digest food and absorb nutrients (malabsorption). You may develop Whipple’s disease after exposure to Tropheryma whipplei, a common bacterium that lives in dirt. Fortunately, a combination of antibiotics kills the bacteria in your body, eases your symptoms and cures the condition.
How common is Whipple’s disease?
While the bacterium that causes the disease is common, Whipple’s disease is very rare. Experts analyzing Whipple’s disease cases estimate it affects 9 in 1 million people in the U.S. Not everyone who encounters T.whipplei develops the disease.
Whipple’s disease symptoms develop in phases (stages), starting with joint pain that’s severe and may come and go. The pain typically affects your large joints — your ankles, elbows, hips, knees and shoulders. Healthcare providers may call this the prodromal phase. This phase may last seven or eight years before you develop more symptoms, including:
- Abdominal pain.
- Diarrhea.
- Edema (swelling).
- Fatigue.
- Fever.
- Patches of skin that are darker than your usual skin color.
- Swollen lymph nodes.
- Unexplained weight loss.
Between 20% and 40% of people with Whipple’s disease develop central nervous system issues that cause symptoms like:
- Balance problems.
- Confusion.
- Difficulty swallowing.
- Memory loss.
- Personality changes.
- Seizures.
- Speech impediments.
Experts know that a type of bacteria often found in dirt causes Whipple’s disease. Anyone who encounters the bacteria could be at risk of infection. But Whipple’s disease is rare, and it’s not clear why more people don’t develop the disease after exposure.
Research suggests the following factors may increase your risk of developing the disease:
- Age: Whipple’s disease appears to affect people ages 65-84.
- Exposure to soil or livestock: Research suggests people whose work exposes them to soil or livestock have an increased risk of developing Whipple’s disease.
- Genetic mutation (change): There’s a connection between Whipple’s disease and the gene that makes the IFR4. This protein plays a role in developing B cells, T cells and other immune cells. Likewise, there’s an association between the disease and a mutation in the human leukocyte antigen B27 (HLA-B27) gene.
- Weak immune system: This can happen if you have a disease that affects your immune system or you take immunosuppressants.
Whipple’s disease affects your body’s ability to absorb fats, carbohydrates, vitamins and other nutrients from food that passes through your small intestine. It’s a progressive disease, meaning that it gets worse over time and causes new and more serious medical issues, including:
- Anemia (low red blood cells).
- Dementia.
- Heart murmur.
- Oculomasticatory myorhythmia, where your eyes and jaw constantly move side to side.
- Pleural effusion.
- Uveitis.
Whipple’s disease that affects your central nervous system can be fatal.
Healthcare providers do a physical examination. They’ll take a medical history and ask about current and past changes in your body. They may do the following tests:
- Complete blood count (CBC).
- Upper endoscopy.
- Polymerase chain reaction (PCR) test to check for T. whipplei bacteria.
- Small intestine biopsy.
It can take a long time to get rid of the bacteria that cause Whipple’s disease. Treatment includes:
- Antibiotics: Treatment typically involves receiving antibiotics by vein for two to four weeks. After that, you receive antibiotics that you take by mouth for at least the next 12 months.
- Fluid replacement: You may receive IV solutions to prevent dehydration. Or you may drink electrolyte beverages to replenish lost fluids and salt.
- Vitamins and nutrient supplements: Your provider may recommend that you take supplements to make up for vitamins and nutrients your intestines can’t absorb.
Treatment side effects
Antibiotics may cause the following side effects:
- Diarrhea.
- Dizziness.
- Nausea and vomiting.
- Rash.
- Yeast infections.
Tests and procedures used to diagnose lip cancer include:
- Physical exam. During a physical exam, your doctor will examine your lip, mouth, face and neck to look for signs of cancer. Your doctor will ask you about your signs and symptoms.
- Removing a sample of tissue for testing. During a biopsy, your doctor will remove a small sample of tissue for laboratory testing. In the laboratory, a doctor who analyzes body tissue (pathologist) can determine whether cancer is present, the type of cancer and the level of aggressiveness that’s present in the cancer cells.
- Imaging tests. Imaging tests may be used to determine whether cancer has spread beyond the lip. Imaging tests may include computerized tomography (CT), magnetic resonance imaging (MRI) or positron emission tomography (PET).
Lip cancer treatments include:
-
Surgery. Surgery is used to remove the lip cancer and a margin of healthy tissue that surrounds it. The surgeon then repairs the lip to allow for normal eating, drinking and speaking. Techniques to reduce scarring also are used.
For small lip cancers, repairing the lip after surgery may be a simple procedure. But for larger lip cancers, skilled plastic and reconstructive surgeons may be needed to repair the lip. Reconstructive surgery may involve moving tissue and skin to the face from another part of the body.
Surgery for lip cancer may also involve removing cancerous lymph nodes in the neck.
-
Radiation therapy. Radiation therapy uses powerful energy beams, such as X-rays and protons, to kill cancer cells. Radiation therapy for lip cancer may be used on its own or it may be used after surgery. The radiation may be aimed only at your lip, or it may also be aimed at the lymph nodes in your neck.
Radiation therapy for lip cancer most often comes from a large machine that precisely focuses the energy beams. But in some cases, the radiation can be placed directly on your lip and left in place for a short time. This procedure, called brachytherapy, allows doctors to use higher doses of radiation.
- Chemotherapy. Chemotherapy uses powerful drugs to kill cancer cells. For lip cancer, chemotherapy is sometimes used in combination with radiation therapy to increase the effectiveness of treatment. In cases of advanced lip cancer that has spread to other areas of the body, chemotherapy may be used to reduce signs and symptoms and make you more comfortable.
- Targeted drug therapy. Targeted drug treatments focus on specific weaknesses present within cancer cells. By blocking these weaknesses, targeted drug treatments can cause cancer cells to die. Targeted drug therapy is usually combined with chemotherapy.
- Immunotherapy. Immunotherapy is a drug treatment that helps your immune system to fight cancer. Your body’s disease-fighting immune system might not attack cancer because the cancer cells produce proteins that help them hide from the immune system cells. Immunotherapy works by interfering with that process. For cancer of the lip, immunotherapy might be considered when the cancer is advanced and other treatments aren’t an option.
That’s hard to say. The bacteria that cause Whipple’s disease are everywhere in our environment, particularly in dirt. But not everyone who encounters them develops Whipple’s disease.
People with weak immune systems or who take immunosuppressants have an increased risk of developing the disease. If that’s your situation, it’s a good idea to wear gloves or to wash your hands thoroughly any time you work in dirt and mud.
How do I take care of myself?
The most important thing is to take your antibiotics as prescribed. Most people will take antibiotics for at least a year after their diagnosis, and some people may need antibiotics for the rest of their lives.
If you have Whipple’s disease, you’ve been missing out on vital nutrients. Treatment will make you feel better, but you may want to ask a dietitian for recommendations on what you should eat and drink.
When should I see my healthcare provider?
Contact your provider if you still have Whipple’s disease symptoms after you start treatment or if your symptoms come back after treatment.
References
- Antunes C, Singhal M. Whipple Disease (https://www.ncbi.nlm.nih.gov/books/NBK441937/). 2023 Jul 4. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2024 Jan. Accessed 8/9/2024.
- Boumaza A, Ben Azzouz E, Arrindell J, et.al. Whipple’s disease and Tropheryma whipplei infections: from bench to bedside (https://pubmed.ncbi.nlm.nih.gov/35427488/). Lancet Infect Dis. 2022 Oct;22(10): e280-e291. Accessed 8/9/2024.
- Cappellini A, Minerba P, Maimaris S, et al. Whipple’s disease: A rare disease that can be spotted by many doctors (https://pubmed.ncbi.nlm.nih.gov/38105122/). Eur J Intern Med. 2024 Mar;121:25-29. Accessed 8/9/2024.
- Elchert JA, Mansoor E, Abou-Saleh M, et. al. Epidemiology of Whipple’s Disease in the USA Between 2012 and 2017: A Population-Based National Study (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6499665/). Dig Dis Sci. 2019 May;64(5):1305-1311. Accessed 8/9/2024.
- Genetic and Rare Diseases Information Center (U.S.) Whipple Disease (https://rarediseases.info.nih.gov/diseases/7889/whipple-disease). Updated 02/2024. Accessed 8/9/2024.
- Melas N, Amin R, Gyllemark P, et.al. Whipple’s disease: the great masquerader-a high level of suspicion is the key to diagnosis (https://pubmed.ncbi.nlm.nih.gov/33743602/). BMC Gastroenterol. 2021 Mar 20;21(1):128. Accessed 8/9/2024.
- Merck Manual. Consumer Version. Whipple Disease (https://www.merckmanuals.com/home/digestive-disorders/malabsorption/whipple-disease). Updated 03/2023. Accessed 8/9/2024.
- Porteiro B, Freitas AR, Nunes F, et.al. Whipple’s Disease: A Challenging Diagnosis (https://pubmed.ncbi.nlm.nih.gov/38344639/). Cureus. 2024 Jan 10;16(1): e51991. Accessed 8/9/2024.
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