Atkins/South Beach Diet Warning

January 15, 2005

Please be cautious about undertaking any type of restrictive diet

with a mitochondrial myopathy, including the Atkins and South Beach

Diets. For those of us with carnitine or carnitine transport

deficiencies, these diets are potentially deadly because they rely on

ketogenesis, which we are incapable of.

Theresa

January 15, 2005

Hi, Theresa

This has been a lively and interesting thread. Thank you for that

caution. We did start out by saying that we were all different, and

what helps one might not help (and indeed, as you point out, might

hurt) another. We do strongly need to keep that in mind, and it is

good that you state it again. Someone mentioned early on, that if a

carb-restricting diet will alleviate symptoms, it will happen early on.

Additionally, some of us are reactive or post prandial hypoglycemic,

and we addressed the question of restricting carbs to try to mitigate

the symptoms of that condition. Also, the obeservation was made that

there might be a spike of lactate after a meal, especially after a high

carb meal. How diet affects our symptoms is a very interesting topic

for me because it is one of the few avenues that I can explore with the

hope of symptom reduction. There was a time that I didn't have a clue

that what I ate might influence my " crashes " . I respect food and

supplements as having strong potential to modify health, both

positively and negatively, and make changes very very cautiously.

Regards

Sunny

>

> Please be cautious about undertaking any type of restrictive diet

> with a mitochondrial myopathy, including the Atkins and South Beach

> Diets. For those of us with carnitine or carnitine transport

> deficiencies, these diets are potentially deadly because they rely on

> ketogenesis, which we are incapable of.

>

> Theresa

>

> Medical advice, information, opinions, data and statements contained

> herein are not necessarily those of the list moderators. The author of

> this e mail is entirely responsible for its content. List members are

> reminded of their responsibility to evaluate the content of the

> postings and consult with their physicians regarding changes in their

> own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends

> one is automatically moderated or removed depending on the severity of

> the attack.

>

January 16, 2005

Sunny wrote:

>How diet affects our symptoms is a very interesting topic

> for me because it is one of the few avenues that I can explore with the

> hope of symptom reduction. There was a time that I didn't have a clue

> that what I ate might influence my " crashes " . I respect food and

> supplements as having strong potential to modify health, both

> positively and negatively, and make changes very very cautiously.

Amen to all points. My philosophy exactly.

Barbara

January 16, 2005

Note that any restrictive diet should be treated as a drug, that is,

make sure your doctor knows you are going on it, and look for side

effects.

I reiterate that I was originally told NOT to go on the Atkins diet

because my neuro was afraid that I would have problems digesting

fats. But I had been on high fat " diets " before and hadn't had

problems.

So don't treat any restrictive diet lightly, even a more

standard " low fat " diet that restricts calories.

I would also suggest, if one does decide to do this type diet, to use

KetoStix, which test urine for ketones, to ensure that not too many

ketones are being spilled.

Take care,

RH

>

> Please be cautious about undertaking any type of restrictive diet

> with a mitochondrial myopathy, including the Atkins and South Beach

> Diets. For those of us with carnitine or carnitine transport

> deficiencies, these diets are potentially deadly because they rely

on

> ketogenesis, which we are incapable of.

>

> Theresa

January 16, 2005

I'm sorry that I've been a missing person here lately. I'm involved

with some very important national and state wide issues for people

with hearing loss that have filled my every minute and probably will

for about another month. Then I should see some let up.

I'm glad this subject was brought up. About 14 years ago, I went on a

carb free diet under the care of a doctor. I saw him weekly and in

ten months - I lost 107 lbs. This was wonderful - I thought. For

about 6 months, I felt great, but something happened. Suddenly I

noticed symptoms that could not be explained. I even had a

pre-cancerous condition that had to be treated. Life started to go

downhill pretty rapidily. Today, I know that it was Mito symptoms I

was experiencing. I have not gone in the other direction since. I am

sure that the drastic diet was the straw that broke the camel's back

as they say and escalated my symptoms. Interestingly enough, I have

one daughter that want on Craig. She lost weight well too but

it wasn't long after that that her symptoms began and worsened pretty

rapidly. There is no question that any type of rapid weight loss is

not good for us - at least for my family.

I'm now on Weight Watchers which is a sensible diet and actually

recommended by Dr Cohen. It's not really a diet because it is an easy

way to eat and it gives you all that your body needs daily. It

closely resembles a diabetic diet and can be adapted easily for a

diabetic. I started this in late October. Since then - I've had a

relatively small weight loss but it's a loss. I've lost 24 lbs. and

have not had any new problems develop. We do need to watch our weight

and it's easy to balloon up to an unacceptable weight when you have

this disease just as it's easy to be far too thin. This is a

metabolic disease.

I personally would highly discourage the Atkins/South Beach diets or

any other of the fad diets. They are rapid weight loss but I'm afraid

we lose a lot more than weight - much of which we don't want to lose.

I've had weight problems all my life and they have been both extremes.

Now I'm just trying to eat healthy foods and after all these adult

years of fad diets, starvation, successes, failures and frustration,

I'm finally comfortable with what I'm doing.

Alice

>

> Please be cautious about undertaking any type of restrictive diet

> with a mitochondrial myopathy, including the Atkins and South Beach

> Diets. For those of us with carnitine or carnitine transport

> deficiencies, these diets are potentially deadly because they rely on

> ketogenesis, which we are incapable of.

>

> Theresa

January 16, 2005

Nice summary email, Sunny

Take care,

RH

>

> >

> > Please be cautious about undertaking any type of restrictive diet

> > with a mitochondrial myopathy, including the Atkins and South

Beach

> > Diets. For those of us with carnitine or carnitine transport

> > deficiencies, these diets are potentially deadly because they

rely on

> > ketogenesis, which we are incapable of.

> >

> > Theresa

> >

> > Medical advice, information, opinions, data and statements

contained

> > herein are not necessarily those of the list moderators. The

author of

> > this e mail is entirely responsible for its content. List members

are

> > reminded of their responsibility to evaluate the content of the

> > postings and consult with their physicians regarding changes in

their

> > own treatment.

> >

> > Personal attacks are not permitted on the list and anyone who

sends

> > one is automatically moderated or removed depending on the

severity of

> > the attack.

> >

January 16, 2005

Just a YMMV note - I was on a diabetic diet (low calorie, low sugar,

low fat) when I had gestational diabetes, and stuck to it closely,

and went into severe ketosis (dark maroon on the urine test strips)

many times when on it. I also was very weak and hungry all the

time. So this just reinforces the fact that we are all very

different, and find out works best for us, with our doctor's help of

course.

Take care,

RH

> >

> > Please be cautious about undertaking any type of restrictive diet

> > with a mitochondrial myopathy, including the Atkins and South

Beach

> > Diets. For those of us with carnitine or carnitine transport

> > deficiencies, these diets are potentially deadly because they

rely on

> > ketogenesis, which we are incapable of.

> >

> > Theresa

January 16, 2005

Just a YMMV note - I was on a diabetic diet (low calorie, low sugar,

low fat) when I had gestational diabetes, and stuck to it closely,

and went into severe ketosis (dark maroon on the urine test strips)

many times when on it. I also was very weak and hungry all the

time. So this just reinforces the fact that we are all very

different, and find out works best for us, with our doctor's help of

course.

Take care,

RH

> >

> > Please be cautious about undertaking any type of restrictive diet

> > with a mitochondrial myopathy, including the Atkins and South

Beach

> > Diets. For those of us with carnitine or carnitine transport

> > deficiencies, these diets are potentially deadly because they

rely on

> > ketogenesis, which we are incapable of.

> >

> > Theresa

January 16, 2005

Anyone on a diabetic diet would need to follow this closely and stay

in the care of a good endocrinlogist. I am not doing diabetic even

though I am diabetic. I'm doing the Points plan with Weight Watchers

and my sugar is perfect. What I meant by close to the ADA diet was

that it is a very balanced diet. Today's diabetic diet also includes

carbs which was once a no, no but it's nice to be on a regular diet

and not have problems with sugar. I noticed a rise in the sugar for

the first week, but I'm sure that's because I had changed my carb

intake but since then, it's very normal even when I first get up in

the morning. My reading this morning when I got up was 102. Before,

when I was trying to manage my diet with few carbs it was in the area

of 140 each morning. I'm sure the loss of 24 pounds has added to the

improvement in readings but I don't think that this is the total

reason. I have a little more energy and I find that I'm able to do

more in and around the house. That doesn't mean I can run any races

but it's better. One thing that is still quite noticeable is that if

I try to do anything that requires the use of a lot of energy, my

sugar readings rise. That's Mito rearing it's ugly head again, I'm

afraid.

Alice

> > >

> > > Please be cautious about undertaking any type of restrictive diet

> > > with a mitochondrial myopathy, including the Atkins and South

> Beach

> > > Diets. For those of us with carnitine or carnitine transport

> > > deficiencies, these diets are potentially deadly because they

> rely on

> > > ketogenesis, which we are incapable of.

> > >

> > > Theresa

January 16, 2005