Correction of fatty acid metabolism as a novel treatment strategy

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Cathy15

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While there is no evidence to suggest that a ketone diet (no carb/high fat) works in slowing ALS symptoms, anecdotally, a calorie-rich diet with plenty of healthy fats may help to preserve motor function, while dieting and calorie restriction has been shown to worsen symptoms. However, there is no hard data that I could see about the effect of a high fat diet comprised of eating only “healthy fats”. Recent studies have shown that increased fatty acid oxidation was associated with slower disease progression. Has anyone tried 100% (or as close as possible) removing saturated fat and consuming a high amount of healthy fat? Do any members see any benefit of eating healthy fat at nighttime before bed? Resting metabolism is high for people with ALS. It kind of makes sense to account for high metabolic sleeping rates with extra fat before bed.
 

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Hi Cathy,

Welcome to the forum. It might be helpful to know a bit more about your interest in ALS here. Is there a specific study you are referencing?
 

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You don't have to drastically reduce carbs to get into ketosis. It depends on the individual. Keto diet has been around for ages since it was first discovered to help epilepsy. Terry Wahls reversed progressive MS on a modified keto diet. I say modified because she eats organ meats and other protein.

Experts have a difference in opinion as to which fats are "healthy." I'm in the camp that eats olive oil, avocado oil, nuts, seeds, and some grass fed and finished beef along with lots of oily wild fish. I don't have a lot of saturated fat in my diet but I don't avoid it. I avoid gluten and dairy plus most other grains. I eat all organic but don't go into ketosis because I eat a variety of fruit. I don't eat desserts.

I've experimented with various eating plans. I felt wonderful on keto but I lost too much weight and had to switch to what I call a modified paleo because I include beans.

It's likely you can find evidence to support any diet but, I believe, our bodies respond differently to diets and there is no one size fits all.

I can tell you my mind is sharper since I gave up sugar and desserts. I also eat 90% organic.

Although resting metabolism is high for many PALS it isn't high for all, myself included. My metabolism was very high for years before ALS but slowed down since my diagnosis, most likely because I have Hashimoto's and I'm nowhere near as active as I was prior to onset.
 

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Cathy may be referring to studies such as this one. However, as the paper points out, there is a great deal of heterogeneity in how PALS' diet could affect progression, and much we do not know about how the disease affects energy expenditure overall, let alone the extent to which the sources of that energy remain proportional to dietary intake.

I agree with the idea of finding the diet that seems to optimize your energy levels and weight, because the good fat/bad fat paradigm continues to crumble in favor of heavily processed vs. less processed food, and balancing calorie intake across nutritional "buckets."

We know that ALS affects metabolism (though not really how in whom; it's provocative that type 2 diabetes at onset may delay progression), and it only makes sense that to expend the energy to consume/digest food demands that PALS get max "bang for the buck" whenever possible, reducing consumption of non-essential chemicals and amping up usable nutrients, in textures that are easily consumed.
 
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Cathy15

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Many thanks for the kind welcome and allowing non PALS to participate in the forum. I am a close friend a person who has recently received a diagnosis of ALS.

The main reseason I joined the forum was to see if any members had shared any experience or are willing to share their opinions of the possibility of slowing symptom progression with a high consumption of healthy fat, as opposed to a standard keto diet, which can (and ususally does) contain high amounts of saturated fat and emlinates/drastically reduces carbs.

I am aware the facts and data show that a keto diet is not a cure for ALS and is not proven to slow progression. Also there are many people who were on a keto diet and went on to acquire ALS.

Depsite all of the above, there seem to be anectodally much interest in keto + ALS. Perhaps there is a kernal of something fundamentally helpful for PALs with regards to keto?

Topic of interest: Healthy fats/low saturated fats + lots of good carbohydrates as a diet protocol for PALs

One can imagine that if it (eventually) turns out that it is an individual's (specific) metabolism of saturated fat is the key factor in TDP43-related changes, then of course "a standard" keto diet is hardly going to help.

Plus, there seems to be much evidence that increasing glucose is helpful, so why eliminate carbs?

Is a problem with fat metabolism potentially causative of ALS?

There seem to be plenty of studies detailing that lipid metabolic pathways converge in motor neuron degenerative diseases.

Since I am a firm believer in that the obstacle will show us the way, or
The impediment to action advances action. What stands in the way becomes the way.
- Marcus Aurelius

it seems pretty clear while the world waits for a cure, specific metabolic changes (including the metabolism of fat) at an individual patient level need can and should be addressed. How about looking at treating the patient at as a whole and looking at what else is going on besides the symptom of muscle deterioration?

Any PALS using a healthy liver diet?

My friend has for the past twenty years has had major trouble digesting fatty meals. He has seen loads of doctors, but basically nothing was actually done about this issue. I would guess that he has a fatty liver and gall bladder issues, but since I am not a doctor, I am refraining from offering unsolicted advice.

In terms of ALS, my friend was prescribed Riluzole and to eat a high calorie diet (include both fat and carbs), and was not recommended to take any supplements.

He is a runner and plays a lot of sports. He has been told to not push himself too hard, but overall there is no evidence that giving up sport will confer any benefit in terms of slowing ALS.

I can't help but think that for my friend with the fat digestion issues, there is benefit in at leat trying to eliminate saturated fat, and as I am conscious that I am not an expert, I wanted to hear what people with ALS have to say on the topic.

My learning thus far:

Higher cholesterol levels may be protective

Using statins is discouraged for PALS

Overuse of muscles is associated with ALS, but it is doubtful it is causative (I am guessing latic acid only serves to further damage muscles, but muscle overuse itself is not a causitive, only a contributory agent)

A high sugar diet may delay symptom progression. In fact, in my opinion the research is pointing towards that Glycolysis upregulation is neuroprotective as a compensatory mechanism in ALS. This jives with what we know about the human body and the extraordinary lengths it will go to in order To maintain safe pH Levels. Your body will do whatever it takes to maintain safe pH levels. Two common examples are: it will rob calcium from the bones if it has to (resulting in osteoporosis), and overwork the kidneys to flush out glucose as necessary (may result in kidney disease).

Fatty liver is common in PALs (but I suspect is not caustative, but rather a result of improper fat metabolism over a number of years. )

Mildl obesity is desirable for PALs.


My good will and best intentions are sent to you all.

Thank you so much for your comment! I am in camp that considers olive oil, avocado oil, nuts and seeds as healthy fats. I am looking into pancreatic enzymes and probiotics as ways to increase fat absorption.
 

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I take pancreatic enzymes, pre- and probiotics every day. Back in 1998, I had trouble metabolizing fat. Nobody at Mayo Clinic could figure out why and I had extensive testing on my pancreas. It resolved and I started gaining weight again.

I think gut microbiome is a big factor in many diseases. I test mine yearly and make dietary corrections, if necessary.
 

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Actually, the high cholesterol theory was discarded as a confound in the data in favor of BMI, in recent studies. Though statins are associated with myopathy in some people, there has been no suggestion that PALS should stop statins based on that diagnosis alone.

I really don't think we should promote a high sugar diet based on the evidence at this stage, since protein/"good fat" intake and muscle atrophy are clearly linked more definitively, many PALS find eating difficult whether orally or by tube, and nutritional density is therefore even more critical. Moreover, we often recommend against several commercial tube foods for the very reason that they are based on corn syrup, which is difficult to process; our bodies were not built for that.

Many people who acquire ALS are lean and athletic, and we are learning some of the occupational exposures that may relate to that fact, but again we have not seen a scientific basis on which to consider "overuse of muscles" as a primary etiology in a neurological disease in which it is the motor neurons that are abnormal.
 
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Overuse of muscles after ALS diagnosis can be a causative factor in hastening progression so I would be careful of advising he continues at a high athletic level. I'm not saying sit down and do nothing of course.

You can search on this forum for lots of great discussions on this - recovery time being one of the best indicators of acceptable levels of activity for individuals (rather than saying all PALS should do this or that much).
I really do agree that BMI and using proteins and fats to maintain the calorie levels needed seem to helps with slowing progression and increasing quality of life.

One issue not discussed yet is that ALS is unpredictable and one never knows just what rate of progression they are going to have even if they can do everything to the best level and can avoid falls. Some are rapid, some are slow, and some speed up and slow down and even experience plateaus. This makes studying what might help slow progression difficult.

If a PALS has breathing issues from very early this will greatly influence their calorie burning as well.

What we do know, as a general rule of thumb, is that:
if you do not consume lots of calories and start losing weight you will progress faster
if you do overdo things and tire yourself frequently, you will progress faster
if you fall and injure yourself you will progress faster.

It might help if you look at things from preventing those, in a way that fits with the dietary needs and preferences of the person, their lifestyle and environment?

Great discussion!
 
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