In general, if you have Fanconi syndrome and cystinosis, it’s important to always have easy access to fresh water, because you will need larger quantities to make up for what is lost through urination.1 Do you crave salty foods? That’s normal because you’re losing so much salt through urination. In the absence of other health issues, such as dialysis, there is no need to restrict the amount of salt you consume. Potassium and phosphate supplements may also be recommended.1
Even if mealtime is uncomfortable, it’s important to find ways to get the nutrition you need. To make mealtime easier, consider replacing the standard three big meals a day with smaller, more frequent meals. Your doctor can talk to you about supplements, appetite stimulants, feeding tubes, or occupational therapy. Growth hormone may also be appropriate.1
A key to managing a dialysis diet is learning correct portion sizes. For example, you may be instructed to limit potassium. Fruits and vegetables contain potassium, but some may be safe to eat within certain limits. The right portion size will let you eat foods you like and receive important nutrients without compromising your treatment goals.1
While dialysis is doing the important work of cleaning the blood, it can also remove important vitamins. That’s why it’s important to take vitamins and supplements, under the advice of your doctor or other healthcare professionals, such as a dietitian.1
For more information on dialysis diets, visit www.Kidney.org.
Patients with cystinosis who have had kidney transplants are often advised to follow “heart-healthy” diets that prevent obesity. Heart-healthy diets include lots of fruits, vegetables, and whole grains, and they limit portion sizes and unhealthy fats like butter and margarine.1
- Data on file, Horizon Pharma plc; 2016.
- Gahl WA, Thoene JG, Schneider JA. Cystinosis. N Engl J Med. 2002;347(2):111-121.
- The New York Times. Kidney diet: Dialysis patient overview. Available at http://www.nytimes.com/health/guides/nutrition/kidney-diet-dialysis-patients/overview.html?print=1#Food-Sources. Accessed July 21, 2015.