Powered By
Did you know that nausea and constipation could be caused by nerve damage from amyloidosis? In some people, digestive symptoms may be a sign that amyloid is building up in the intestines. The nerves that manage digestion are part of the autonomic nervous system, which controls automatic body functions. When amyloid builds up, it can interfere with how these nerves work and slow down or upset normal digestion.
Read on to learn how amyloidosis could affect your digestive system.
Amyloidosis is a rare disease where a misfolded protein (called amyloid) builds up in different parts of the body. Misfolded means the protein has the wrong shape, so it doesn’t work normally and can clump together. In some types of amyloidosis, these misfolded proteins collect in the peripheral nervous system (PNS). The PNS is the network of nerves that carries messages between the brain and the rest of the body.
Your peripheral nervous system helps you move your muscles and feel sensations like touch and temperature. It also helps control some automatic body functions, including digestion. When amyloid deposits build up in these nerves, it can disrupt how they work and lead to problems with movement, sensation, or digestion.
Transthyretin amyloidosis (ATTR) is a type of amyloidosis that can affect your nervous system. In this type of amyloidosis, the TTR protein becomes unstable and causes the buildup of abnormal proteins. ATTR amyloidosis can be:
ATTR amyloidosis most often affects the heart or the peripheral nerves. When it affects the peripheral nervous system, it’s called transthyretin amyloidosis with polyneuropathy (ATTR-PN). Polyneuropathy means many nerves are affected at the same time. ATTR-PN is more commonly associated with hereditary ATTR.
There are different mutations (also called variants or changes) in the TTR gene that can lead to hATTR amyloidosis. One common mutation is called Val30Met. People with this variant may have a pattern of symptoms that includes nerve problems (like numbness or tingling), digestive problems (because the nerves that control digestion can be affected), and sometimes heart problems. Digestive issues are more prevalent and severe in people with this genetic mutation.
Your PNS includes the autonomic nervous system (ANS). The ANS controls involuntary functions like the digestive system.
Because of damage to the autonomic nervous system, ATTR-PN can cause a range of gastrointestinal symptoms that you might not realize are related to amyloidosis. “My most surprising symptom of amyloidosis is alternate bouts of diarrhea and constipation,” one MyAmyloidosisTeam member wrote. “Does anyone else with amyloidosis have nausea and vomiting?” another member asked.
In a study of over 1,000 people with ATTR, participants reported the following stomach symptoms:
Certain symptoms, like diarrhea and weight loss, sometimes develop before others, like constipation.
Other potential GI symptoms of amyloidosis include:
Amyloidosis in the digestive system can be localized or systemic. Localized GI amyloidosis is less common and is often linked to AL amyloidosis. In localized cases, the abnormal protein is made and builds up in the digestive tract itself. It can sometimes form a lump that looks like a tumor but isn’t cancer. This type is usually not caused by ATTR amyloidosis.
Systemic (widespread) GI amyloidosis can happen in several types of amyloidosis, including ATTR and AL. In ATTR amyloidosis, the TTR protein is made mainly in the liver, but it can build up in the digestive tract and other organs.
The most common site for GI involvement is the small bowel. Amyloid deposits in the small bowel are often associated with malabsorption (poor nutrient absorption), diarrhea, and constipation.
If you’re dealing with uncomfortable gastrointestinal symptoms from ATTR-PN, it’s important to talk to your doctor. Medications used to treat ATTR-PN (like the RNAi or stabilizer drugs) are designed to slow or stop your disease from progressing. Over time, this may help reduce your stomach symptoms by preventing further nerve damage.
For symptom relief, your doctor may treat specific problems that can happen when your intestines don’t move food through normally. One example is small intestinal bacterial overgrowth (SIBO), which occurs when too many bacteria grow in the small intestine and can cause bloating and diarrhea. For severe diarrhea, your doctor may recommend a medicine to treat diarrhea, like loperamide (Imodium), which helps by slowing the movement of the intestines.
“I have been on treatment for two months and the diarrhea caused by amyloidosis has completely disappeared,” one member wrote.
You may also benefit from adjusting your diet and making other lifestyle changes.
Managing diet is one way some people can relieve certain GI symptoms, like vomiting in the morning. This symptom can be caused either by food that hasn’t been digested or by reflux. Regardless of the cause, eating the last meal of the night earlier may help by allowing more time for digestion before lying down.
The type of food you eat also makes a difference. The body digests solid food differently from liquid food, like soup. Consuming smaller, more frequent, and lower-fat meals can reduce the burden on a stomach that empties slowly. Liquids usually leave the stomach faster than solid foods, and solid foods can take several hours to empty.
Although not specific to ATTR-PN, a low FODMAP diet (avoiding foods like dairy, wheat, beans, and certain fruits and vegetables) could minimize bloating caused by bacterial overgrowth in the small intestine.
There are also treatment options for people experiencing fecal incontinence in certain contexts. When someone eats a meal and then exercises, it may cause their colon to contract. A class of drugs called anticholinergics can sometimes be used to relax these muscles, potentially providing relief for this particular symptom. Pelvic floor exercises may help with fecal incontinence as well.
On MyAmyloidosisTeam, people share their experiences with amyloidosis, get advice, and find others who understand.
What digestive symptoms have you experienced living with amyloidosis? Let others know in the comments below.
Managing GI Issues in Amyloidosis — FAQ — Amyloidosis Research Consortium
Get updates directly to your inbox.
Continue with Facebook
Sign up with your email
Become a member to get even more
Join
We'd love to hear from you! Please share your name and email to post and read comments.
You'll also get the latest articles directly to your inbox.