Essential fatty acids+coconut+mct oil

[Guest guest]

I'm very much a newbie and have been following the discussion

of fatty acid metabolism, coconut oil, MCT, etc., with much

interest. I'm still at the point where I'm trying to gather appropriate

info before I present it all to my doc.

What I find particularly interesting is the mention in passing of

" defects in fatty acid metabolism " . In '89 when I first had tests

results indicating the possibiliity of a thiamine (vitamin B1)

dependency disorder, the head of the lab doing the work ( in

consulting with my doc at the time), suggested that my fatty acid

metabolism should be investigated.

I've had 3 fatty acid tests done since then, all showing abnormal

results, but my doc is now deceased and I haven't been able to

find a doc to interpret the results with any level of understanding

(family doc, neurologists, nutritionally oriented alternative

medicine MD' s, and naturopaths haven't really had a clue). What

kind of a doc investigates defects in fatty acid metabolism? I'm

suspecting a " run of the mill " endocrinologist or neurologist

would not be the answer. Do many mito specialists have the

knowledge/resources to investigate this?

I am headed now to read the info on the links on MCT oil that

Barbara so kindly provided in hopes of finding some info that

might help, but thought I would also ask here.

For what it's worth (probably nothing considering it's apples and

pears), I've been on a ketogenic diet for close to a year with very

beneficial results (it's the recommended diet for PDCD) . It's a

diet VERY low in carbs and VERY high in all kinds of fats

including Yudo Blend high omega 3-6-9- fatty acids, butter, olive

oil, cod liver oil and coconut oil. In that time, my cholesterol

numbers have now DROPPED to normal (sometimes BELOW

normal) on the regime. Cause and effect....very hard to say.

As always, thanks for your collective expertise and guidance.

Best Wishes, Anita

[Guest guest]

Fat is metabolized in a metabolic cycle called beta oxidation, which

takes place in the mitochondrion. Many experts include defects of

fat metabolism under the mito umbrella. UMDF includes them in their

list. For example, carnitine deficiency is a defect in fat

metabolism.

Usually patients with defects of fat metabolism require a low-fat

diet, as fats are known triggers in those disorders. Dr. Roe's page

on the FOD site explains the whys. Medium-chain triglyceride oil

(MCT) has been tried in disorders of long-chain fat metabolism, the

idea being to bypass the blocked long-chain pathways by beefing up

medium-chain pathways. But for various complicated reasons, this has

not worked well.

Most adult FOD patients figure out (before diagnosis) that fat

triggers their symptoms and that carbohydrates improve their

symptoms.

Generally, FOD patients have blocks in either short, medium, long or

very long chain pathways, not all. But it is very difficult if not

impossible to limit dietary fat intake to one chain length.

Therefore the rationale for limiting all fat intake. In my case, all

chain lengths are blocked.

Mito specialists do see patients with defects in fat metabolism. In

general most FOD patients see neurologists.

Take care,

Barbara

> I'm very much a newbie and have been following the discussion

> of fatty acid metabolism, coconut oil, MCT, etc., with much

> interest. I'm still at the point where I'm trying to gather

appropriate

> info before I present it all to my doc.

>

> What I find particularly interesting is the mention in passing of

> " defects in fatty acid metabolism " . In '89 when I first had tests

> results indicating the possibiliity of a thiamine (vitamin B1)

> dependency disorder, the head of the lab doing the work ( in

> consulting with my doc at the time), suggested that my fatty acid

> metabolism should be investigated.

>

> I've had 3 fatty acid tests done since then, all showing abnormal

> results, but my doc is now deceased and I haven't been able to

> find a doc to interpret the results with any level of

understanding

> (family doc, neurologists, nutritionally oriented alternative

> medicine MD' s, and naturopaths haven't really had a clue). What

> kind of a doc investigates defects in fatty acid metabolism? I'm

> suspecting a " run of the mill " endocrinologist or neurologist

> would not be the answer. Do many mito specialists have the

> knowledge/resources to investigate this?

>

> I am headed now to read the info on the links on MCT oil that

> Barbara so kindly provided in hopes of finding some info that

> might help, but thought I would also ask here.

>

> For what it's worth (probably nothing considering it's apples and

> pears), I've been on a ketogenic diet for close to a year with

very

> beneficial results (it's the recommended diet for PDCD) . It's a

> diet VERY low in carbs and VERY high in all kinds of fats

> including Yudo Blend high omega 3-6-9- fatty acids, butter, olive

> oil, cod liver oil and coconut oil. In that time, my cholesterol

> numbers have now DROPPED to normal (sometimes BELOW

> normal) on the regime. Cause and effect....very hard to say.

>

> As always, thanks for your collective expertise and guidance.

>

> Best Wishes, Anita

[Guest guest]

Barbara, I'm so sorry to read that you have blockages in all your

fatty acid chain metabolism. That must make things difficult.

Thanks so much for your in depth explanation and guidance.

Because my symptoms are SO much BETTER with LARGE

amounts of EFA and other fats in my diet, I suspect that I

probably have an " abnormally abnormal " probablm with EFA

metabolism. (so what else is new :-) My EFA tests are just crazily

imbalanced with generally very high levels of Omega 6 and low

levels of Omega 3 with some other weird imbalances. The

recommendation to my doc from the doc at the lab which did my

last tests suggested that I limit my animal protein. At the time I

had been a vegan for 22 years (no animal products AT ALL, not

even butter). Hmmmmmm

Thanks, you have given me more info to explore as we try to sort

things out.

Best Wishes,

Anita

>

> Fat is metabolized in a metabolic cycle called beta oxidation,

which

> takes place in the mitochondrion. Many experts include defects

of

> fat metabolism under the mito umbrella. UMDF includes them

in their

> list. For example, carnitine deficiency is a defect in fat

> metabolism.

>

> Usually patients with defects of fat metabolism require a

low-fat

> diet, as fats are known triggers in those disorders. Dr. Roe's

page

> on the FOD site explains the whys. Medium-chain triglyceride

oil

> (MCT) has been tried in disorders of long-chain fat

metabolism, the

> idea being to bypass the blocked long-chain pathways by

beefing up

> medium-chain pathways. But for various complicated reasons,

this has

> not worked well.

>

> Most adult FOD patients figure out (before diagnosis) that fat

> triggers their symptoms and that carbohydrates improve their

> symptoms.

>

> Generally, FOD patients have blocks in either short, medium,

long or

> very long chain pathways, not all. But it is very difficult if not

> impossible to limit dietary fat intake to one chain length.

> Therefore the rationale for limiting all fat intake. In my case, all

> chain lengths are blocked.

>

> Mito specialists do see patients with defects in fat metabolism.

In

> general most FOD patients see neurologists.

>

> Take care,

> Barbara

>

>

[Guest guest]

Whoa!!! I'm confused!!!! I have CPT-II deficiency, and all the

literature says that carbs are necessary to prevent muslce

breakdown. A ketogenic diet would seem to me to be very harmful to

people with disorders of the fatty acid metabolic pathway.

Can anyone explain? I'd love to go on the South Beach diet, but

have been scared to do so.

Thanks,

Mike

> I'm very much a newbie and have been following the discussion

> of fatty acid metabolism, coconut oil, MCT, etc., with much

> interest. I'm still at the point where I'm trying to gather

appropriate

> info before I present it all to my doc.

>

> What I find particularly interesting is the mention in passing of

> " defects in fatty acid metabolism " . In '89 when I first had tests

> results indicating the possibiliity of a thiamine (vitamin B1)

> dependency disorder, the head of the lab doing the work ( in

> consulting with my doc at the time), suggested that my fatty acid

> metabolism should be investigated.

>

> I've had 3 fatty acid tests done since then, all showing abnormal

> results, but my doc is now deceased and I haven't been able to

> find a doc to interpret the results with any level of

understanding

> (family doc, neurologists, nutritionally oriented alternative

> medicine MD' s, and naturopaths haven't really had a clue). What

> kind of a doc investigates defects in fatty acid metabolism? I'm

> suspecting a " run of the mill " endocrinologist or neurologist

> would not be the answer. Do many mito specialists have the

> knowledge/resources to investigate this?

>

> I am headed now to read the info on the links on MCT oil that

> Barbara so kindly provided in hopes of finding some info that

> might help, but thought I would also ask here.

>

> For what it's worth (probably nothing considering it's apples and

> pears), I've been on a ketogenic diet for close to a year with

very

> beneficial results (it's the recommended diet for PDCD) . It's a

> diet VERY low in carbs and VERY high in all kinds of fats

> including Yudo Blend high omega 3-6-9- fatty acids, butter, olive

> oil, cod liver oil and coconut oil. In that time, my cholesterol

> numbers have now DROPPED to normal (sometimes BELOW

> normal) on the regime. Cause and effect....very hard to say.

>

> As always, thanks for your collective expertise and guidance.

>

> Best Wishes, Anita

[Guest guest]

You are absolutely right, Mike. The experts never recommend a high

fat diet for people with inborn errors in fat metabolism. One of the

hallmarks of those disorders is that fats trigger serious symptoms,

and there are very good biochemical reasons why this occurs. I also

have CPT II deficiency, as well as a second global mito defect.

Please do not try the South Beach diet without checking with your

doctor! You can trigger life-threatening events!

Take care,

Barbara

> > I'm very much a newbie and have been following the discussion

> > of fatty acid metabolism, coconut oil, MCT, etc., with much

> > interest. I'm still at the point where I'm trying to gather

> appropriate

> > info before I present it all to my doc.

> >

> > What I find particularly interesting is the mention in passing

of

> > " defects in fatty acid metabolism " . In '89 when I first had

tests

> > results indicating the possibiliity of a thiamine (vitamin B1)

> > dependency disorder, the head of the lab doing the work ( in

> > consulting with my doc at the time), suggested that my fatty

acid

> > metabolism should be investigated.

> >

> > I've had 3 fatty acid tests done since then, all showing

abnormal

> > results, but my doc is now deceased and I haven't been able to

> > find a doc to interpret the results with any level of

> understanding

> > (family doc, neurologists, nutritionally oriented alternative

> > medicine MD' s, and naturopaths haven't really had a clue). What

> > kind of a doc investigates defects in fatty acid metabolism? I'm

> > suspecting a " run of the mill " endocrinologist or neurologist

> > would not be the answer. Do many mito specialists have the

> > knowledge/resources to investigate this?

> >

> > I am headed now to read the info on the links on MCT oil that

> > Barbara so kindly provided in hopes of finding some info that

> > might help, but thought I would also ask here.

> >

> > For what it's worth (probably nothing considering it's apples

and

> > pears), I've been on a ketogenic diet for close to a year with

> very

> > beneficial results (it's the recommended diet for PDCD) . It's a

> > diet VERY low in carbs and VERY high in all kinds of fats

> > including Yudo Blend high omega 3-6-9- fatty acids, butter,

olive

> > oil, cod liver oil and coconut oil. In that time, my cholesterol

> > numbers have now DROPPED to normal (sometimes BELOW

> > normal) on the regime. Cause and effect....very hard to say.

> >

> > As always, thanks for your collective expertise and guidance.

> >

> > Best Wishes, Anita