It’s such an important topic and so little attention is given to it! Besides being weighted every time I go to hospital (appointments, examinations, admission), neither doctors or healthcare personnel ever mention any nutrition guidelines specific to SCD. Only that good hydration and a balanced diet are very important.
I have gathered some information available on the Web but what is your experience? What is beneficial and what should you avoid to stay clear from a crisis?
“NUTRITION AND DIETARY SUPPLEMENTS
Foods. Good nutrition, while essential for anyone, is critical for patients with sickle cell disease. Some dietary recommendations include:
•Fluids are number one in importance. The patient should drink as much water as possible each day to prevent dehydration.
•Diet should provide adequate calories, protein, fats, and vitamins and minerals. Patients and families should discuss vitamin and mineral supplements with their doctors and nurses.
•Some studies claim that omega-three fatty acids, found in fish and soybean oil as well as dietary supplements, might make red blood cell membranes less fragile and possibly less likely to sickle, although no studies have proven this definitively.
Vitamins. Patients should take daily folic acid and vitamin B12 and B6 supplements. Vitamin B6 may have specific anti-sickling properties. Some doctors recommend 1 mg folic acid, 6 microgram vitamin B12, and 6 mg vitamin B6. Foods containing one or all of these vitamins include meats, oily fish, poultry, whole grains, dried fortified cereals, soybeans, avocados, baked potatoes with skins, watermelon, plantains, bananas, peanuts, and brewer's yeast. Of note, folic acid can mask pernicious anaemia, which is caused by deficiency of vitamin B12 and is more common in African-Americans than other populations.
Note on Iron. Although sickle cell disease is often referred to as anaemia, patients should avoid iron supplements or iron rich foods when receiving multiple transfusions, which increase the risk for iron-overload.“
“Not eating for long periods can trigger a sickle cell crisis due to not having enough nutrients in the body for maintaining normal bodily functions. If fasting is part of an individuals religious practice they should discuss this with their doctor or specialist nurse and seek advice on how to practice their religion without putting their health at risk.”
Specifically for children (although many of these tips are good for adults as well):
“Calcium and vitamin D are important for your child's growth and development, but good overall nutrition is essential. Speak with your health-care specialist for a full assessment. Meanwhile, keep these tips in mind to maximize your child's nutrition:
•Make good nutrition a family affair so your child doesn't feel punished when they're drinking milk and everyone else has soda.
•Eat from a rainbow of fruits and vegetables paired with grains, proteins (such as eggs, fish, chicken, lean meat, beans or tofu), nuts and low-fat dairy.
•Get plenty of calcium-rich foods such as low-fat or fat-free milk, yogurt, and cheese, leafy green vegetables and calcium-fortified foods such as soymilk, orange juice and tofu
•Provide healthy, high-calorie foods including dried fruit, nuts and nut butters, or smoothies if your child doesn't have much of an appetite.
•Discuss vitamin D testing and supplementation with your health-care provider. While sun exposure, eggs, fortified milk and yogurt provide vitamin D, it is often difficult to replenish stored vitamin D with food alone.
•Encourage plenty of water to prevent constipation.
•Forgo sugar-sweetened drinks for milk or calcium-fortified orange juice, which provide better nutrition.
Work with a registered dietitian nutritionist to better understand your child's unique nutrition needs and identify quick and healthy meals that will work for the entire family.”
Foods to avoid: High fructose corn syrup, Aspartame, Trans fat, Food dyes, Processed, fatty and fried foods
“There are many different foods that help to improve circulation and red blood cell production. But for those of us that aren’t so adventurous here are a few foods that you probably use everyday, and have so many positive benefits for sickle cell patients. Try to incorporate at least 2 of these in every meal you eat, and seriously avoid fatty foods…I cannot stress that enough!
1. Green, leafy vegetables like Kale, Spinach, Bok Choy, Turnip Greens and pretty much every vegetable with a leaf. They are high in folate aka folic acid. This aids in improving appetite, cell production, growth and red blood cell formation.
2. Beets: Beets are high in iron, help build the blood and oxygenate the body. Beets have an added advantage of detoxify-ing the kidneys, liver and bladder…which we need since we are on so many ‘other’ harsh meds.
3. Brown Rice: If you must eat rice regularly (like I do), then switch to brown rice. This is one of the most energetically balanced food. It strengthens the lungs and the spleen.
4. Garlic: When my mom used to make me eat garlic everyday, I hated it with a passion, but I never feel sick with colds and the flu. Garlic is a great immune system builder, relieves cramps and helps to expel cold and dampness from your body by increasing your inner body temperature. How awesome is that?
5. More Veggies: I cannot stress the importance of vegetables. Diets high in meats and fatty foods tend to make sickle cell patients go into crises more. Try to eliminate meat from your diet completely, and if not, then try to limit your meat intake to small amounts a couple of times a week. Instead, bulk up on veggies like cabbage, mustard greens, onions, radishes. Also throw in kidney beans, lentils, sorghum, millet and you have yourself a balanced diet.
6. Cayenne Pepper: Cayenne is another great detoxifier. It strengthens your immune system, disperses congestion, clears your sinuses, expels cold and helps to calm abdominal pains (by dilating the veins/arteries in the abdomen, increasing circulation, thereby increasing oxygenation). I love me some cayenne pepper…I can sprinkle it on almost everything.
7. Root vegetables: Root veggies like carrots, potatoes, sweet potatoes, yams, yucca root, African yam, cassava and anything from that family are known to inhibit sickling and helps to increase red blood cell production. You can bake, steam, juice or broil them. As long as you don’t fry them…you are doing good.”
“Fruits and vegetables such as berries, citrus fruits, melons and green leafy vegetables are significant sources of essential vitamins, minerals, antioxidants and dietary fiber. Low-fat diary products, legumes and lean meats such as poultry, beef and fish are some other healthy food options that provide protein necessary for health. “
Thanks so much for posting this valuable information on nutrition, looks like you have done a lot of research. We'll pin the post so that everyone can see it!
There is a lot more about this on the Web. It would be important for a team of nutritionists to validate the most accurate information so that it can be part of leaflets on nutrition and SCD
That would be a great project!