2

votes

ALS (amyotrofic lateral sclerosis) and paleo diet?

Commented on April 21, 2015
Created February 16, 2012 at 4:22 AM

Hi,

I'm working with clients with als (and also several with ms - multiple sclerosis) and I was wondering if anyone had any experience in treating als by eating a gluten and/or casein free diet?

I've discussed dietary matters with several of my MS clients since there seems to be at least anecdotal evidence but I haven't heard about als that much. And what is Stephen Hawking eating (has got als)?

Thanks for any input!

254ea62982c287995e11bc3cfd629407

(822)

on November 22, 2012
at 05:03 PM

This is why I love PH. You guys are an awesome resource. Wasn't aware of this, but now I'm feverishly following-up on learning more about Wahls.

095ef76482234d3db444b77d7ed01c29

(2755)

on February 19, 2012
at 05:54 PM

I took a multifaceted approach, beginning with diet to control insulin response with some improvement. Then when my nuro told me, "if it doesn't flex, you have to carry it." I took the hint and started exercising. Walking off some fat then I began lifting to add muscle. This helped more. Switching to a more ancestral diet instead of just straight low carb diet helped even more...adding vitamin D seems to have also helped. I too was worsening on the meds. Well, not decadron, it was always good to stop an attack, but the side effects were just too intolerable.

Ffeed8e7a72936133bfc07ecc5ad54c6

(15)

on February 17, 2012
at 04:10 AM

Andy, that's awesome. Was is specifically the diet that you reversed it or was there something else? The meds aren't doing any good to the majority of my clients either. One's gotten a lot worse after starting those.

Ffeed8e7a72936133bfc07ecc5ad54c6

(15)

on February 17, 2012
at 04:09 AM

Hugely interesting, thanks for this! I shall look into it.

Ffeed8e7a72936133bfc07ecc5ad54c6

(15)

on February 17, 2012
at 04:08 AM

I'm so sorry for your loss, Blueballoon. It's a nasty disease :-( Jay, so you've got some experience from the medical field about treating als? What about Stephen Hawking?

Ffeed8e7a72936133bfc07ecc5ad54c6

(15)

on February 17, 2012
at 04:06 AM

Thanks, I'm familiar with Terry Wahls' amazing story!

E36cb992cf0a5eba8b97a359c15f38b3

(4347)

on February 17, 2012
at 12:02 AM

I think once you're diagnosed, slowing ALS down is probably something you'd at least want to consider. My father lasted less than 18 months after diagnosis. Clearly one of my questions is whether or not rapid degeneration might be delayed, and whether ALS can actually be prevented in the first place. It's far too late to ask questions of blood work and other things in his case, but I've always wondered if GF or paleo would have helped.

4781cf8ae1bfcb558dfb056af17bea94

(4359)

on February 16, 2012
at 06:50 PM

Paleo diet may well prevent ALS. But almost definitely something more radical is needed to treat it. A ketogenic diet may slow it down, giving some extra time. But nothing so far seems to change the inevitable outcome...

E36cb992cf0a5eba8b97a359c15f38b3

(4347)

on February 16, 2012
at 06:11 PM

I share her talk with everyone who'll listen.

E36cb992cf0a5eba8b97a359c15f38b3

(4347)

on February 16, 2012
at 06:11 PM

My father died of ALS almost seven years ago. Although there's obviously nothing to be done about it now, I've been curious as to the possible effects a paleo or ketogenic diet might have had on the disease progression. Interestingly, my grandmother has neurological issues (unexplained ataxia, from about age 65) as well. I hope there's a lot more research done on this.

B23318c968ac589b87131d5b489d6e16

(1294)

on February 16, 2012
at 06:55 AM

You beat me to it Caleb!

Bdf98e5a57befa6f0877f978ba09871c

on February 16, 2012
at 04:53 AM

required viewing for anyone interested in paleo, IMO.

  • Ffeed8e7a72936133bfc07ecc5ad54c6

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9 Answers

3
095ef76482234d3db444b77d7ed01c29

(2755)

on February 16, 2012
at 09:54 PM

Being an autoimmune disease where the spinal cord is attacked by the immune system, and with the evidence shown by Dr. Cordain with MS patients... I'd suspect that yes it can help prevent the disease and possibly slow the progression. My only issue with it is that Dr. Cordain's brand of paleo is too low in fat to be truly effective. Basically, I've had RRMS since I was 17 years old and secondary progressive MS since I was 30... have had serious problems with my legs to the point of having to use double canes and at one point a wheelchair. Long before I ever heard of paleo or primal, by my own research and experimentation, I managed to reverse it and now effectively do not have MS any longer. Other than the occasional exacerbation that resolves within days, I'm doing just fine on a high fat, primal type diet. Oh yeah, and this is without any of the MS drugs that did not work at all for me.

45ab4565d7c969653adabaf78dc504d9

(0)

on April 21, 2015
at 06:29 PM

Congratulations and thank you for sharing!!

Ffeed8e7a72936133bfc07ecc5ad54c6

(15)

on February 17, 2012
at 04:10 AM

Andy, that's awesome. Was is specifically the diet that you reversed it or was there something else? The meds aren't doing any good to the majority of my clients either. One's gotten a lot worse after starting those.

095ef76482234d3db444b77d7ed01c29

(2755)

on February 19, 2012
at 05:54 PM

I took a multifaceted approach, beginning with diet to control insulin response with some improvement. Then when my nuro told me, "if it doesn't flex, you have to carry it." I took the hint and started exercising. Walking off some fat then I began lifting to add muscle. This helped more. Switching to a more ancestral diet instead of just straight low carb diet helped even more...adding vitamin D seems to have also helped. I too was worsening on the meds. Well, not decadron, it was always good to stop an attack, but the side effects were just too intolerable.

2
D53548653dc13e18b72c82e29ee99b02

(36)

on February 16, 2012
at 04:33 AM

Bdf98e5a57befa6f0877f978ba09871c

on February 16, 2012
at 04:53 AM

required viewing for anyone interested in paleo, IMO.

E36cb992cf0a5eba8b97a359c15f38b3

(4347)

on February 16, 2012
at 06:11 PM

I share her talk with everyone who'll listen.

Ffeed8e7a72936133bfc07ecc5ad54c6

(15)

on February 17, 2012
at 04:06 AM

Thanks, I'm familiar with Terry Wahls' amazing story!

B23318c968ac589b87131d5b489d6e16

(1294)

on February 16, 2012
at 06:55 AM

You beat me to it Caleb!

254ea62982c287995e11bc3cfd629407

(822)

on November 22, 2012
at 05:03 PM

This is why I love PH. You guys are an awesome resource. Wasn't aware of this, but now I'm feverishly following-up on learning more about Wahls.

1
4781cf8ae1bfcb558dfb056af17bea94

(4359)

on February 16, 2012
at 03:02 PM

Gluten free and/or paleo can't hurt with ALS. That said, ALS progresses very fast in most people and kills within a few years. I would try something more radical, like a ketogenic diet. It has been shown to help in mice and, from what I understand, people with ALS are doing it. Low dose naltrexone may help a bit too.

4781cf8ae1bfcb558dfb056af17bea94

(4359)

on February 16, 2012
at 06:50 PM

Paleo diet may well prevent ALS. But almost definitely something more radical is needed to treat it. A ketogenic diet may slow it down, giving some extra time. But nothing so far seems to change the inevitable outcome...

E36cb992cf0a5eba8b97a359c15f38b3

(4347)

on February 16, 2012
at 06:11 PM

My father died of ALS almost seven years ago. Although there's obviously nothing to be done about it now, I've been curious as to the possible effects a paleo or ketogenic diet might have had on the disease progression. Interestingly, my grandmother has neurological issues (unexplained ataxia, from about age 65) as well. I hope there's a lot more research done on this.

E36cb992cf0a5eba8b97a359c15f38b3

(4347)

on February 17, 2012
at 12:02 AM

I think once you're diagnosed, slowing ALS down is probably something you'd at least want to consider. My father lasted less than 18 months after diagnosis. Clearly one of my questions is whether or not rapid degeneration might be delayed, and whether ALS can actually be prevented in the first place. It's far too late to ask questions of blood work and other things in his case, but I've always wondered if GF or paleo would have helped.

Ffeed8e7a72936133bfc07ecc5ad54c6

(15)

on February 17, 2012
at 04:08 AM

I'm so sorry for your loss, Blueballoon. It's a nasty disease :-( Jay, so you've got some experience from the medical field about treating als? What about Stephen Hawking?

0
A7c1857ce53fb11a9351d05718c7070d

(283)

on November 26, 2013
at 09:51 PM

Great question. You definitely need to visit the Whals foundation website noted above for the MS related stuff, and look into her upcoming book. You should also read a new book called Grain Brain. Fantastic information in there about neurodegeneration and diet written by a very experienced neurologist. Although there is some argument about his suggested very low carb approach, it is still the best available in this area. It does not specifically mention ALS but other forms of neurodegeneration like Alzheimer's (and they are all very similar anyway). I am very interested in Frontotemporal Lobar Degeneration (FTLD) and this condition is considered to be on the same spectrum of disorders as ALS. I have done some research and it's becoming much more clear that as with other neurodegenerative conditions FTLD is also tied to autoimmunity, chronic inflammation, and metabolic dysregulation, and these are exactly the things that a paleo approach to diet and lifestyle improve in most people. If you are at all interested I wrote about it here with references:

http://www.thebarefootgolfer.com/2013/11/25/frontotemporal-lobar-degeneration-neurodegeneration-path-prevention-part-2/

http://www.thebarefootgolfer.com/2013/11/20/neurodegeneration-path-prevention-part-1-introduction/

Anyway, hope it's helpful

0
Ffc7e0ecad8e8831b528c5d4921377cc

(942)

on November 25, 2013
at 04:33 AM

0
9cf0ecffcafe353fe76bbcc22f474280

on November 23, 2013
at 06:42 AM

Current published literature shows that having a higher BMI or having more visceral fat is linked with better survival in ALS. Most research is conducted with high fat diets in ALS, which seem to show improvement in animal models. Couple this with the supposed hypermetabolic state of ALS patients, the best course of action would be to maintain energy stores, or increase energy intake, presumably in the form of fat.

Base on the way the body works to maintain energy balance, and given that paleo seems to be bias towards loss of body fat, I don't think Paleo would be good in ALS.

Anyhow, it's probably not a good idea to give dietary advice to someone who has ALS. This should be left to their neurologist and health care team.

45ab4565d7c969653adabaf78dc504d9

(0)

on April 21, 2015
at 06:31 PM

except, from what i can find, so far they haven't been a big help..

0
9cf0ecffcafe353fe76bbcc22f474280

on November 23, 2013
at 06:39 AM

Scientific papers that are being published seem to point to the fact that having higher BMI (body fatness) or visceral fat is associated with better survival in ALS. Couple this with the apparent hypermetabolic state on ALS patients, I don't think that it's clever to restrict energy intake. Current research seems to point to high fat and high carbohydrate. Nothing much done with protein. Based on how the body works to maintain energy balance, and how paleo seems to be bias towards loss of body fat, I don't think Paleo would be the way to go. But this is based on what is published.

In general, I think it's hard to give dietary advice for anyone who has ALS. This should be left to their neurologist and health care team.

Ffeed8e7a72936133bfc07ecc5ad54c6

(15)

on February 17, 2012
at 04:09 AM

Hugely interesting, thanks for this! I shall look into it.

-1
B2fb8030818b748c0830d1525af487f3

on November 14, 2012
at 12:06 AM

Look up Craig Oster, who I believe used a vegan, raw diet as part of his program for solving als.

I also know another couple of people who have had success solving als and had similar diets.

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