Dear All, does anyone know which food contains very long chain fatty acids? If you do not mind I would like to compare the diets that all of us received from our doctors. (I am going to translate mine from italian into english so that I can share it with you). I know that we have to eliminate fats but I do not know which food contains very long chain ones. I found a web site (but it is in Italian) http://www.dieta-dimagrante.com/nutrienti/ where you can see the quantity of fats for each aliment, but as in every nutritional value chart it is not said which kind of fats they are.

Ciao Valentina, I found this: "They are in particularly high amounts in fatty or greasy foods, fried foods, and oils. They are also present in large amounts in nuts and seeds. Meat, even lean cuts, have a lot of fatty acid in them. On the other hand, vegetables, fruits, and starchy foods (e.g. pasta or breads) are relatively low in fatty acids." in: http://www.x-ald.nl/biochemistry-genetics/vlcfa/ I hope it was helpful.

Unfortunately there are VLCFAs in fruits and vegetables as well, especially the skins and seeds because it is part of their waterproofing

I don't know exactly. I used to eat a non-fat diet when I was young. No fat whatsoever. I wouldn't eat bananas. No avocados. No burgers/fries. Basically no fast food. Chicken was pretty much the only meat I would ever eat. I don't exactly remember my diet exactly, but look on food labels. Any hydrogenated oils are a NO. Butter is very bad. I would eat non-fat cookies. Seafood is mostly OK, white fish like mahi-mahi is best. Carrots were always a favorite snack, as were apples. Sorry I don't know exactly what or how my diet went, I just tried to recap the foods that I ate growing up. Most fruits and veggies are fine, but the "smoother, butterier" ones like avocados and bananas were bad. I'll talk to my mom and get back to you. Ciao

Try to get in touch with someone at Kennedy-Krieger Institute in Baltimore. They have worked with special diets for years. You have to have some fat in your diet--and certainly Omega 3's; you just need to keep the amount very small.

Doesn't matter much what you eat. That's what Dr, Renauld said at Mayo. Your body takes any fat available and converts them to VLCFA's

That may be correct Seetherfan. But there are different schools of thought on the subject. Some believe that eliminating all sources of "bad" fat in the diet is effective. Some believe that your body does what it wants anyway. I think your body is very strong and can do anything it wants. However by limiting hydrogenated oils and most saturated fats this can probably help your body not build up VLCFAs. Arm yourself with knowledge. Science isn't that scary.

There is no prove (as far as I know) that symptoms improve (or get worsen) by VLFA levels is there?

My neurologist told me that he sees no relation to diet...

I completely disagree with Russcandler. I guess almost every one of us has a very low fat diet and this is not a coincidence. Since I started my diet I feel so much better, I can walk everyday better so I really believe the diet is effective in our disease.

It's really scary that people are being given conflicting information by their doctors. Diet is important. One of the big problems seems to be that a lot of people's cases are being managed by neurologists who are not actually specialists in ALD/AMN. This is a metabolic condition (which produces neurological symptoms). You really need to be referred to a metabolic specialist as well as a neurologist and dietican. As Lonelycat says.....do as much research as you can. No-one will fight your corner better than you and we can't always trust that the particular doctor we're dealing with is up to speed on the latest developments. Almost all the doctors we've dealt with have had to google the subject as we sat in their offices.....not comforting.