Newbie and Q's about diets

[shela9]

Hi All you lovely beings,

I was just recently diagnosed and have atrophy in my right hand. Has anyone tried the glutamate free and/or gluten free diet and have any feedback?How about supplements? Hope this is the beginning of many more interactions here.

Best wishes to all,

Shela

 

[sadiemae]

Eat a high fat diet. Keep your weight on.

 

[Katie C]

I'm with Lori.. eat what you want, what you enjoy and keep your weight up. My son and I used to say we took everything we learned at weight watchers and reversed it to try to keep weight on Glen.... his lattes were made with half and half instead of our skim milk. When his food had to be pureed we thinned it with cream. It was suggested to us by UCSF's ALS clinic that we supplement with Vitamin E and C. Not sure if it actually did anything.

 

[Z3 Driver]

since i started with muscle wasteage (during december ) it just so happened i ended up working away, staying in hotels . ie cooked breakfast everyday, fast food lunch , 3 course meal at night and a few beers, all on the company expenses of course .
But on getting weighed i actually lost 1/2 stone . Alarm bells were ringing .
so i agree eat what you want and loads of it , i am.

 

[tomby]

No calorie is a bad calorie

 

[sadiemae]

https://www.alsforums.com/forum/people-als-pals/13438-does-anyone-pay-attention-diet.html check out this thread

 

[SueG]

Agree with the others. My doc at the Mass General clinic said not to worry about glutamate in the diet as the brain pathway of glutamate implicated in ALS is different. And I'm not sure why gluten-free would help unless you happen to have a gluten sensitivity. I'm not aware of any gluten-ALS link. I generally avoid processed foods anyway, and a local osteopath friend suggested using organic meat & dairy (veggies too, if you don't grow your own) wherever possible. Plenty of good fats - like all that full-fat dairy- thought to be neuroprotective. Supplements -- I take antioxidant formula OPC and B-complex from Isotonix, multivite, additional C, E, D, r-lipoic acid, and omega-3 on the days I don't have salmon or herring. NAC (N-acetyl cysteine) was also suggested by my osteopath friend. That's a lot, and maybe they're not helping, but what the heck, it's worth a try. The challenge is finding stuff I can swallow since my gag reflex is in overdrive.
The good news is that after inadvertently losing weight all summer, before diagnosis, I have put back on 7 lbs-- but now I have to go to elastic waist pants since between the extra inches and my spazzy hands I can't always button my jeans! Vanity is out the window, I guess.
best of luck, eat that ice cream, and welcome to the forum--
Sue

 

[Birdman]

my advice is to get some virgin, organic coconut oil if you are in the early stages. I have been taking it along with a water/magnesium chloride solution for over a year with positive results! Check it out on the web. However, the first thing someone will tell you is how bad coconut oil is for your cholesterol, but that's not true. I just had mine checked, and it's fine as is all the other blood and urine stuff. NOTE: I take 8 tablespoons of coconut oil per day, and have since January, 2010.

Good luck, and keep the faith!

 

[MICK.BUDDY]

I was just recently diagnosed and have atrophy in my right hand.

 

[KC2U2]

It can be confusing, since I am already about 30 lbs overweight, I thought well, if my muscles are weak, it would be easier and I would get less fatigued if I weighed less. Then as I read different things, everything pretty much said don't lose any weight, so what to do?

When I spoke to the nutritionist at clinic, she advised staying away from the fad diets or reducing how much I am eating. Both she and my neurologist recommended high protein and reducing some of the carbs, that way I am still eating enough and may be able to lose a few pounds in the meantime.

 

[sadiemae]

http://www.als-mda.org/anyone/2011ecards/January2011/ A webinar about the importance of Nutrition for PALS.

 

[shela9]

Thanks for all the sharing, folks! Appreciated!