Effectively managing the symptoms of systemic mastocytosis (SM) is an essential part of improving and maintaining your quality of life when living with the disease.
Gastrointestinal implications of SM include abdominal cramps, nausea, vomiting, diarrhea and bloating. They can be managed with medication and consistent lifestyle and diet modifications.
What is SM?
Systemic mastocytosis (SM) is a rare hematological disease characterized by mast cells that are overactive and accumulate in different parts of the body such as the bone marrow, liver, spleen, gastrointestinal tract and lymph nodes.
What are SM’s most common gastrointestinal effects?
Gastrointestinal symptoms are found in 60% to 80% of people who live with SM, making them the second most common complaint after skin itchiness.
Learn more about SM signs and symptoms
The effect on patients can range from mild to severe. Mast cells build up in the gastrointestinal tract, and when triggered release excessive amounts of mast cell mediators such as histamine, serotonin, prostaglandins and neurotensin.
Long-term complications of gastrointestinal symptoms may include peptic ulcers and bleeding in the digestive tract.
Managing GI symptoms with diet and lifestyle changes
You can help manage your SM symptoms, including any that affect your stomach and digestive system, by learning to avoid the triggers that activate them. This requires understanding your individual triggers, as they can vary from person to person, and making the necessary changes to your diet and lifestyle to prevent them from occurring.
- Diet: A low histamine diet is recommended for people living with SM. It includes fresh unprocessed foods that are low in histamine and avoids or limits foods that are aged or matured. Some foods can be high in histamine, and others can trigger the release of histamines in the body. Alcohol, spicy food, tomatoes, spinach, citrus, aged cheeses and processed meats are just a few examples. Ask your gastroenterologist for a full list.
- Lifestyle: Emotional stress and physical exertion can trigger symptom flare-ups. Practicing meditation and low-impact physical activity can help prevent triggering symptoms.
Other symptom triggers you may experience include sudden changes in hot and cold, insect stings, pollens and certain medication.
Certain medications may help alleviate GI symptoms
As part of your multidisciplinary health care team, your gastroenterologist will be your point of contact for the treatment and management of your GI symptoms. There are certain medications that can reduce the effect of symptoms on your digestive system.
- Antihistamines (both H1 and H2) block the effects of the histamine released by mast cells.
- Proton pump inhibitors help reduce gastric acid secretion.
- Mast cell stabilizers such as cromolyn sodium and ketotifen may also help.
- Systemic corticosteroids help control symptoms and reduce malabsorption.
- Epinephrine is used to urgently treat anaphylaxis and must be carried at all times.
Your gastroenterologist will detail a personalized treatment plan for you based on your symptoms and disease progression.
Keep track of your symptoms on a daily basis by documenting symptom episodes and related triggers, as well as their severity, duration and effect on your personal and professional life. Share your symptom log with your gastroenterologist at each appointment.
