Lupus can ruin your appetite in various ways. Some MyLupusTeam members find they can’t muster the will to eat — even if they know they’re hungry. “I’ve had this strange feeling the past few weeks. I get hunger pangs, and my body feels hungry, but I have no appetite,” a MyLupusTeam member said. “It’s not that I’m restraining myself from eating. I just don’t feel like I want to eat.”
“I have bouts where I just can’t stand the thought of putting food into my mouth. I have no idea why that happens. It usually lasts a week or two,” another member shared.
If you’ve had similar experiences, you’re not alone. Loss of appetite is a known symptom of lupus — though it also can be caused by other medical conditions, both related and unrelated to lupus — as well as certain medications.
Here are some reasons you may have difficulty wanting to eat, even if your stomach is growling.
Certain medications used to treat lupus flare-ups can be hard on the stomach. Peptic ulcers (sores in the stomach lining) are a common side effect of lupus treatments, including nonsteroidal anti-inflammatory drugs (NSAIDs), like aspirin and ibuprofen, and corticosteroids, such as prednisone.
Symptoms of a peptic ulcer include stomach pain, nausea, and vomiting. Left untreated, peptic ulcers can cause complications including anemia, the formation of a hole in your stomach wall, or internal bleeding. If you notice you have dark or black stools, you should notify your health care provider right away.
To determine if you have an ulcer, your doctor can perform an upper gastrointestinal (GI) endoscopy, which entails using a flexible, narrow tube with a small video camera to look inside your stomach.
Treating a peptic ulcer may involve adjusting your meds, taking medications that reduce or block acid production, or — if the ulcer is caused by a bacterial infection — starting a round of antibiotics.
Lupus can inflame your gums or cause mouth sores (also called canker sores), symptoms that can make eating certain foods more difficult. But regular dental visits can keep your mouth healthy. Dentists can also suggest numbing solutions to help reduce pain. “Mouth sores are very painful and inhibit eating and drinking,” shared a MyLupusTeam member. “I use an anesthetic agent or numbing agent before I eat.”
Another member said they do a saltwater rinse to help with mouth sores, an at-home technique many health experts recommend. Try dissolving a half teaspoon of salt into a cup of warm water, then gargling or swishing the mixture in your mouth for up to 10 seconds before spitting it out.
Some members have shared positive results from taking lysine supplements, a type of amino acid that researchers have found may help with canker sores. Others have found that folic acid supplements improve their mouth sores, which may be because researchers have found that people low in folic acid (as well as vitamin B12 and iron) are more likely to develop canker sores.
Before starting any type of supplement, speak with your rheumatologist. Supplements can cause unwanted side effects or interact poorly with certain medications.
If mouth pain is interfering with your ability to eat, you may find it easier to eat cold or soft foods or to sip meal-replacement protein shakes and smoothies through a straw.
Gastroparesis is a stomach condition in which the stomach either is essentially “paralyzed” or empties food too slowly. Health experts aren’t sure what causes gastroparesis, but some believe it has autoimmune underpinnings and may be more common in people with diabetes, mental health issues, and autoimmune disorders like lupus.
Symptoms of gastroparesis that may interfere with your ability or desire to eat include:
For some people, severe constipation also accompanies gastroparesis.
Some people with gastroparesis avoid heavier foods, like protein-rich meals, and instead favor foods high in sugar and carbohydrates, which are faster to digest. As a result, gastroparesis can lead to unhealthy weight gain and high glucose (blood sugar) levels. Others with the condition eat so little that they experience dramatic, unhealthy weight loss.
To check for gastroparesis, a doctor can perform gastric emptying tests, which measure how quickly the stomach empties its contents. They may also do an upper GI endoscopy or an ultrasound. Treatments for this commonly underdiagnosed issue can include dietary changes (including consuming more easier-to-digest foods), medications, and surgery.
You also may have anxiety about food if you’ve had a history of uncomfortable GI symptoms, which could impair your appetite. “I had issues with diarrhea and stomach pains in November and December, where I wasn’t able to eat much because of pain, discomfort, and bathroom trips almost every time I ate. Could I be having some sort of anxiety toward eating now because of this?” a MyLupusTeam member asked.
Getting enough sleep and regular physical activity are two proactive ways to improve symptoms related to your emotional and mental health. In addition, a mental health counselor can be a great resource and support on your journey with lupus. Ask your doctor for a referral to meet with an expert in person or online who can help.
If you have symptoms like heartburn, vomiting, or chronic coughing, you may be experiencing gastroesophageal reflux disease (GERD), also known as acid reflux. With this condition, your stomach acid continually flows back into your esophagus, which can irritate its lining. Lupus can raise your risk of acid reflux by causing inflammation of the esophagus, making it difficult to swallow food and keep it down.
Other symptoms of GERD include:
Understandably, you may be less willing to eat when you know the consequences will be painful and unpleasant. It’s important to seek treatment for acid reflux to avoid long-term damage to your throat and to improve your quality of life. Treatment options include over-the-counter medications, prescription drugs, surgery, and other procedures.
Lupus and some of its treatments can cause inflammation affecting different parts of the body, including:
Additionally, lupus can cause infections, as can certain treatments such as steroids and immunosuppressive drugs like azathioprine (Imuran).
These conditions can cause nausea and abdominal pain, which in turn may make you less interested in eating. Your doctor can help diagnose any underlying inflammatory diseases or infections and work with you to develop an appropriate treatment plan.
Gluten is a protein found in wheat. It’s also used as an ingredient to thicken foods like soups and sauces or create desired textures. Some people have adverse reactions to consuming gluten. This includes people living with celiac disease, who experience an autoimmune reaction to the protein that can damage their intestines and cause digestive problems, including reduced appetite and weight loss.
Some research suggests that people with other autoimmune diseases — including lupus — may be sensitive to foods that contain gluten, which is called nonceliac gluten sensitivity.
Currently, no single test is available to determine gluten sensitivity. If you suspect that gluten is upsetting your stomach, you can work with a registered dietitian nutritionist or gastroenterologist to temporarily eliminate it and track your symptoms.
Having a poor appetite sometimes is OK, but when it starts affecting your ability to enjoy meals, get enough nutrients, or maintain a healthy weight, it’s time to seek treatment. Some MyLupusTeam members have found ways to ride the waves of their appetite, such as having lighter meals when they’re less interested in food. “Whenever I have a loss of appetite, I eat yogurt with fruit,” a MyLupusTeam member said.
It’s important to share symptoms like appetite changes with a health care professional to determine if you need additional testing, medication, or other treatments. Addressing the root of the problem may help you get your appetite back. You can also try eating smaller, more frequent meals and focusing on nutrient-dense foods that give you the most bang for your buck, rather than filling up on less-nutritious choices.
MyLupusTeam is the social network for people with lupus and their loved ones. On MyLupusTeam, over 223,000 people with lupus come together to ask questions, give advice, and share their stories.
Do you experience a loss of appetite or other common symptoms that affect your eating habits? What are your strategies for maintaining a healthy diet with lupus? Post your thoughts in the comments below or on your Activities feed.