While there is no special diet that will cure or treat Amyloidosis, both healthy eating and following doctor-recommended restrictions are essential. Guest blogger Lori Grover offers some tips on dealing with dietary changes.
According to Myeloma UK, eating a healthy diet increases energy levels, maintains muscle strength, boosts your immune system and helps recovery after treatment. As you can see, making healthy choices makes sense. But easier said than done, right? Eating a healthy, balanced diet can be tricky for anyone. When your stress levels are high, and you feel horrible, making those necessary changes can be daunting. Because the disease affects everyone differently, your unique situation will determine the dietary suggestions that are made for you.
AL Amyloidosis can impact diet in a few ways.
- Specific recommendations may be made as part of a plan to manage heart and kidney disease to prevent any further damage to organs
- If kidneys are affected additional suggestions may be made to keep electrolytes in balance (especially if Dialysis is involved)
- A low sodium diet and fluid restrictions may be suggested to combat edema
- Certain foods or dietary supplements may be restricted because they interfere with medications
- Dietary changes may be recommended to help deal with nausea, constipation, or diarrhea
- A ‘clean diet’ may be advised if your white cell count is low (Avoidance of high-risk foods such as raw eggs, or shellfish)
Facing these dietary changes isn’t easy. Here are a few tips to ease the transition.
- Look at it as a challenge. Use it as an opportunity to try new foods, test out different cooking methods, and experiment with healthy recipes. Keep an open mind and try new things.
- Focus on the foods you CAN eat rather than on the foods you can’t. Doctors and dieticians tend to give you lists of the foods you can no longer enjoy. While necessary, focusing on the things you can’t have can be depressing and overwhelming. Try to shift your focus and make a list of all safe foods and meals you can continue to enjoy. Having a go-to list on hand is useful when you’re feeling overwhelmed.
- Create a collection of your favorite healthy recipes and try some new ones. Helpful websites to check out are Davita, Heart Foundation, and The Heart and Stroke Foundation. Experiment with new recipes and keep an open mind. If one fails, try, try again.
- Meal plan, prep, and batch cook. Having ideas on hand makes mealtime easier. Some days you’ll have more energy than others. On those days, make extra and freeze and prep for other meals, so things will be all set for you when you’re feeling low.
- Eat frequent, small meals throughout the day. Not only can it help if you’re feeling nauseous, but it also keeps you full and helps to avoid cravings. If you wait until you’re starving to eat, you’ll be more inclined to make bad decisions.
A low sodium diet may be recommended for both kidney and heart health.
Excess sodium in your diet contributes to fluid retention. Symptoms are swelling, puffiness, a rise in blood pressure, and shortness of breath (due to fluid around the lungs and/or heart).
The National Kidney Foundation recommends a maximum of 2300 mg of sodium per day and your doctor may recommend even less.
A balance must be struck to achieve an optimal sodium level for you, so follow your doctor’s recommendations carefully. Limiting salt can be challenging, especially in the beginning, as your taste buds adjust. Keep at it and don’t give up…it will become your new normal.
Tips on dealing with a low sodium diet.
- Avoid processed foods as much as possible. Read labels and choose lower-sodium varieties.
- Eat whole foods and cook from scratch. Although it is more time consuming, cooking from scratch allows you to control the amount of salt.
- Experiment with different spices and herbs to add flavour to your foods.
- Add an acid when cooking, like a squeeze of lemon juice or vinegar to brighten flavours.
- Pay attention to sauces, gravies, and salad dressings as they can contain a surprising amount of sodium
- If potassium levels are a concern for you, be cautious with salt substitutes
A fluid-restricted diet may be advised to combat edema.
A common and severe side effect of AL Amyloidosis is fluid overload. This happens when you’re taking in more fluid than your kidneys can remove. A balance of restricting sodium and fluid, paired with diuretic medications, can help keep your fluid levels in check. In most cases, between 1.5-2 litres/ day of fluid is recommended.
Tips on dealing with fluid restriction
- Fill a water bottle in the morning, and drink from it throughout the day to help you keep track of your water intake.
- Keep a log (at least at the beginning) until you get an idea of how much fluid you are taking in, and don’t forget to include things like jello, watery fruit, and ice cream.
- Plan to spread the fluid you drink throughout the day.
- If dry mouth is a problem, ice chips, hard candies, and mouth rinses or sprays can help.
A low protein diet may be suggested to protect kidney health.
The goal is to strike a balance. While protein is necessary for growth and repair of your body, foods high in protein can add to the workload of the kidneys. When protein is digested, a waste product called urea is produced. If your kidneys are not functioning correctly, urea can build up in your bloodstream and cause further complications. For this reason, your doctor may suggest you limit your high protein foods.
Tips on dealing with a low protein diet:
- Adjust the ratio of protein to vegetables in your recipes. Add more vegetables and starches to dishes such as soups and stews, to stretch it out and make it seem more substantial.
- Think of vegetables and grains as the main dish, and protein as your side dish
- Experiment with different types of protein, including plant-based options
- Start a ‘meatless Monday’ as part of your routine, to test out vegetarian options
Specific foods and supplements may be limited.
- You may have to cut out certain foods or supplements if they interact with the medications you are taking. For example, green tea and high dose Vitamin C can interfere with Bortezomib (Velcade) and make it less effective. Your doctor will give you a list of foods and supplements to avoid. Follow the recommendations carefully, and be sure to check with your medical team before adding any over the counter medications or supplements to your diet.
- If your kidneys are affected, your levels of electrolytes and minerals will be closely monitored. Your kidney care team will make recommendations based on your levels. For example, you may have to avoid high potassium foods or those with high calcium levels.
There is no one size fits all diet for AL Amyloidosis. What is best for you will be decided based on your unique situation. Experts do agree that healthy eating has many benefits. And when you’re already facing so much, you want to do whatever you can to be your healthiest self.
The best take away tip I can give you is to keep an open mind and be ready to experiment. As you try new things and choose healthier options, you will adjust, and healthy eating will be your new normal.
Lori Grover is a guest blogger for Mackenzie’s Mission. She was diagnosed with AL Amyloidosis in 2016 and writes to share experiences and lessons learned during her journey. More wonderful blogs by Lori can be found on her page Amyloid Assassin. Lori is a freelance copywriter, and a mom of two wonderful boys. She loves writing, reading, and all things crafty.