Receiving a diagnosis of AL Amyloidosis can be a scary and overwhelming experience, filled with unknowns and what-ifs. While awaiting test results and exploring treatment options, focusing on what you can control, such as your diet, can be empowering. This article provides a comprehensive overview of dietary recommendations for individuals with amyloidosis, incorporating insights from experts, research, and personal experiences.
Understanding Amyloidosis and its Impact on Nutrition
Amyloidosis is a disease characterized by the accumulation of amyloid fibrils in the extracellular space, disrupting organ function. In AL amyloidosis, these fibrils are derived from monoclonal immunoglobulin light chains. Amyloid deposits can infiltrate virtually any organ, leading to organ failure. Common clinical presentations include kidney dysfunction, heart failure, gastrointestinal disturbances, and neuropathy.
Nutritional problems are often undetected and therefore untreated in patients living with AL or ATTR amyloidosis. Patients with AL amyloidosis often exhibit lower dietary intake compared to their daily needs, with a high prevalence of weight loss and malnutrition. An inverse association between body mass index and risk of death has also been observed. In ATTR amyloidosis, malnutrition, weight loss, sarcopenia, and cachexia are frequently highlighted. Gastrointestinal (GI) issues caused by amyloidosis, and in some cases by treatment, can significantly impact a patient's quality of life.
General Dietary Guidelines for Amyloidosis
While there is no one-size-fits-all diet for amyloidosis, most individuals should follow general guidelines for a healthy diet, including a variety of nutritious foods. Always consult with your healthcare provider before making significant dietary changes.
Colour Your Plate
Emphasize a diet rich in colorful fruits and vegetables. These foods are packed with vitamins, minerals, and fiber, supporting a strong immune system and overall health. Aim to fill half your plate with fruits and nonstarchy vegetables such as broccoli, cauliflower, carrots, celery, peppers, tomatoes, and zucchini.
Read also: The Hoxsey Diet
Whole Grains
Carbohydrates provide energy, and whole grains are an excellent source of fiber and other nutrients. Choose whole wheat bread or pasta, oatmeal, brown rice, popcorn, quinoa, and buckwheat. Fiber supports healthy digestion, helps you feel full, lowers cholesterol, and supports overall health.
Healthy Fats
Fats are essential for energy and proper bodily function. Choose healthy fats like monounsaturated and polyunsaturated fats, found in nuts, avocados, flax seeds, fatty fish (like salmon or sardines), and olive oil. Limit saturated fat (found in fried foods, high-fat meats, whole-fat dairy, ice cream, coconut or palm oils, and butter) to no more than 10 percent of your daily calories.
Lean Proteins
Protein is vital for building and repairing muscles, skin, and bones, as well as supporting hormone and enzyme production. There is no need for people with amyloidosis to lower their protein intake, unless they also have kidney disease. Choose low-fat sources of protein such as lean meats, poultry, eggs, nuts and seeds, beans, lentils, peas, soybeans and soy products, and seafood.
Specific Dietary Recommendations and Considerations
Sodium Intake
A healthy diet for amyloidosis includes limiting sodium intake to no more than 2300 mg per day. Certain conditions, such as heart failure and kidney disease, may require even stricter limitations (1500 mg or less). Be mindful of sodium content in processed foods and choose fresh, frozen, or no-salt-added canned options.
Sugar Intake
Limit added sugar to 10 percent of your daily calories (approximately 50 grams based on a 2000-calorie diet). Avoid sugary beverages like soda, coffee with added syrups, and sugary juices. Opt for water with lemon or fresh/frozen fruit for flavor.
Read also: Walnut Keto Guide
Alcohol Consumption
Consult with your doctor regarding alcohol consumption. While current recommendations suggest moderation (two alcoholic beverages per day for men and one for women), it may be best to avoid daily alcohol consumption, especially if you are taking regular medications, as it can place additional stress on the liver.
Managing Gastrointestinal Issues
Amyloidosis and its treatment can cause various GI issues. Here are some dietary and lifestyle modifications to address them:
- Nausea: Eat small meals and prepare for days when you may not feel well.
- Vomiting: If vomiting occurs in the morning, try lengthening the time between dinner and bedtime or having a larger lunch and smaller dinner. A liquid dinner, like soup, may also help.
- Diarrhea: If diarrhea occurs after eating fatty foods, malabsorption may be the cause. Consider pancreatic insufficiency as a potential factor.
- Constipation: Increase fiber intake through foods and consider using Benefiber. Prunes and warm prune juice can also help.
- Weight Loss: Work with a nutritionist to develop a plan to address weight loss. Supplements and shakes are often recommended.
- Bloating and Gas: A low FODMAP diet may help minimize gas production. This involves avoiding dairy products, wheat-based products, beans and lentils, and certain fruits and vegetables.
- Gastroparesis: If you have gastroparesis (slowed stomach emptying), be mindful of how quickly food is digested.
Supplements and Probiotics
- Vitamins and Minerals: If you're concerned about getting enough vitamins and minerals from food, talk to your doctor about supplements. However, be aware that some supplements can interfere with amyloidosis medications.
- Probiotics: Probiotics may help with bloating and rebalance gut bacteria. However, they are not regulated by the FDA, so it may take time to notice any difference.
The Importance of Nutritional Assessment and Intervention
Nutritional issues are prevalent among patients with AL amyloidosis and are often underdiagnosed. Studies have shown a strong association between malnutrition and poor quality of life and reduced survival. The Patient-Generated Subjective Global Assessment (PG-SGA) is a useful tool for assessing nutritional status.
Early and aggressive nutritional intervention may improve quality of life and survival. It is essential to determine whether nutritional status affects tolerability and toxicity of treatment, and hence treatment response.
Personalizing Your Diet and Seeking Support
Customize your diet according to any specific restrictions given by your physician. If you have kidney involvement, you may need to closely monitor electrolytes and minerals such as sodium, potassium, and calcium.
Read also: Weight Loss with Low-FODMAP
If you feel overwhelmed, consider making one change at a time and adapting the transition to your lifestyle. Most changes will set in and feel like your new normal after about three weeks.
On MyAmyloidosisTeam, members come together to ask questions, give advice, and share their stories with others who understand life with amyloidosis.
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