Rare Disease Report

FCS Diet Recommendations and Tips from Registered Dietician Wahida Karmally

MAY 22, 2017
Wahida Karmally

At the 2017 National Lipid Association Sessions in Philadelphia, Rare Disease Report sat down with registered dietician Wahida Karmally from Columbia University to discuss the necessary nutrition for FCS patients, what she recommends, and how patients can "beat the system" by finding ways to add flavors to their foods.
RDR: Where can an FCS patient find the specific foods he or she will need?
Karmally: Most of the food has to come from the plant kingdom. It’s vegetables – lots of different colored vegetables – and a small portion of protein, but very lean protein; it could be in the form of fish or a shrimp or just a little chicken breast. You can also use some complex carbohydrates like beans, or anything whole grain. And so, that could fill the plate, and the dairy could be nonfat. It could be skim milk. It could be nonfat yogurt, and there could always be a piece of fruit along with it.
RDR: Are all cooking oils off-limits for FCS patients?
Karmally: There is an oil that they can use, and that's called MCT oil, which is medium-chain triglyceride oil. It's a medical food, and it's made by one company – Nestle. At least medium-chain triglycerides have fatty acids of chain length of 8 and 10, and so these are medium-chain.

Patients have to be very careful that they don't use coconut oil, because there's a lot of confusion on the internet stating that coconut oil is rich in medium-chain triglycerides.

Coconut oil is a lot cheaper than buying this medical food called MCT oil, because the medium chain in coconut oil is lauric acid and it is 45% of coconut oil, which is atherogenic, which raises LDL cholesterol, and it's really bad for them. It’s so bad for all of us, so we shouldn't be consuming acoconut oil but we can buy the fractionated coconut oil that's rich and the two fatty acids, the c8 and the c10. This can be obtained through insurance companies, as well, so the doctor has to write a prescription and speak to the insurance companies needed and explain to the doctor and the insurance company why this patient needs this MCT oil.
RDR: How long is the typical patient journey before he or she decides to see a nutritionist?
Karmally: Well, I am very fortunate that I work in an area where we have a lipidologist, Henry Ginsberg, who refers patients to me. We get these very difficult patients. Sometimes, I have had patients who have FCS, who have diabetes, and who are pregnant. So, you have to make sure you're giving them all the nutrients they need because it's for them. and for the baby. I have heard from colleagues that patients go to several doctors. You know, they start with the internist and finally through our endocrinologist or gastroenterologist, and they get lucky to see a lipidologist with familiar with this condition.

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