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!
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.
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.
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.
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:
Anyway, hope it's helpful