Lymphangiomatosis & Gorham's Disease Alliance Forum / General Discussion / Gorham's Disease / Lowfat diet / Latest Posts

RE: Lowfat diet

Scotters — Sun, 22 Jun 2008 07:12:27 GMT

I have had issues with both Gorhams and Lymph... since I was born. My problems with the chyle build-up have been a very on-off thing. I didn't really have problems with it until I was about 7 in which it would periodically drian from pores in my legs. Then it went away for 3 or 4 years and did it again for a couple of years.My major problem with it came when I was in 2000 when I had a Chylothorax. After I had a pleuraleffusion done, the doctors told me to eat a low fat/no fat diet. I went on absolutely no fat for about 3 months which seemed to help back everything off.A couple of years later, I began having problems with major drainage in other places and I still haven't been able to completely control that with diet. It does seem to help a little bit though.In the beginning of may I had decided to try a "no preservatives" diet which means not drinking any soda, or eating canned or boxed foods. I was pretty strict with that for about 3 weeks which seemed to help quite a bit. I have tailed off on it a little bit, summer is making it difficult trying to find healthy food when out and about.It may be an option to try but as of this point, I haven't found anything or heard of anything in order to get our lymph systems to retreat a bit short of having radiation therapy. It's all a matter of keeping yourself, or daughter, in balance and listening to closely to what your body is telling you. It's something that the entire family also needs to do. It's good for everyone but as I mentioned, it's not easy to do, especially without outside support.I hope this does help and good luck.Scot

RE: Lowfat diet

Huntsmom — Fri, 06 Jun 2008 16:32:10 GMT

I know we have asked Hunter's doctors about a low fat diet and they all said it would not make much difference. Since he stayed the same weight for two years we have let him eat anything he would want.

RE: Lowfat diet

lisakkrn — Fri, 30 May 2008 21:16:52 GMT

Our experience has been from minimal fat to low fat to MCT oils to eat whatever you want and none of it has made any difference in how much chyle Britt produces. Food and eating are big quality of life issues, so we decided we would eat healthy as a family, limit our fat to about 25% of daily calories and eat lots of fresh fruits and vegetables. That seemed to do the most good all around. Britt didn't feel singularly deprived and we didn't feel guilty about not trying to restrict her fat intake.

RE: Lowfat diet

Jayna — Fri, 30 May 2008 18:56:03 GMT

I was put on a low fat diet during one of my bouts with the chylous effusions from lymphangiomatosis. It did not stop the production of the fluid. During recovery from my bilateral lung transplant - I was tube fed for 4 months with a low fat formula. They hoped that the low fat it would help stop or slow the fluid that was accumulating in my abdomen. It was again not affective.

RE: Lowfat diet

Jack Kelly — Fri, 30 May 2008 18:35:58 GMT

Regarding your mention of accumulation of chyle, we have posted a reference elsewhere about the article cited following. FYI.

Jack Kelly

See:

http://www.healthsystem.virginia.edu/internet/digestive-health/nutritionarticles/practicalgastro-may04.pdf

When Chyle Leaks: Nutrition Management Options –

McCray, Parrish, Practical Gastroenterology May 2004: 60-76.

Lowfat diet

jdahlson — Fri, 30 May 2008 13:25:20 GMT

Our daughter has had a chylothorax (fluid in the pleural space) which has currently resolved but our physician has recommended a lowfat diet as the chylus fluid was made up of triglycerides - a possible theory to the lymphangiomas in her chest wall producing the fluid. Has anyone else dealt with this issue and is so, what was the recommendation from your physician?