How difficult is it to find your optimal fat threshold? When my husband was first diagnosed we were told to go low fat to reduce the amount of chyle he was producing – Mayo Clinic had told us less than 40 grams a day. At that time we did not know what was causing the leak or where it was coming from. We immediately jumped in and kept his fat low – however – he was not getting any better. Weekly paracentesis were still needed to relieve the pressure in his abdomen. We then dropped his fat intake to 20 grams thinking that would make a difference and it was marginally better, but not enough to avoid us draining up to 6 liters of chyle a day. One of the biggest mistakes we made was not looking at the serving size on the label and if it read 1g of fat per serving we thought it was ok. News flash – it was not!
After extensive research we dropped his fat even lower and settled into 3 to 5 grams per day. The difference was night and day! He was able to get another Denver shunt placed to help circulate the fluid and retain his nutrients. He had the shunt for 13 months until he started noticing more abdominal distention. We had the shunt replaced and he focused on high protein and maintained his ultra low fat macros. We had a follow up with his team 4 months later and they ordered an ultrasound which found no evidence of ascites! Two days later his shunt was removed and his weight has stabilized with no issues of edema or distention. We monitor his labs frequently and his protein and albumin remain in normal range. While it is not easy to maintain, it has managed his symptoms and has radically improved his quality of life.
Disclaimer – THIS IS NOT MEDICAL ADVICE! IF YOU HAVE ANY QUESTIONS PLEASE CONTACT YOUR MEDICAL PROVIDER!