Gaining weight with als?

[grandtetons2]

How can I gain weight when I can't eat sugar, dairy, or too much starch as it causes increase in inflammation in the brain and nerve damage.

 

[ShiftKicker]

Hello- welcome to the forum. I've moved your post to the "Could This Be?" subforum, as it's not clear if you are looking for information about diet and risk for ALS or if you have been diagnosed. Please feel free to add some further details such as your current diagnostic status to your post so we can make sure to provide you the best information based on your specific situation.

 

[grounded]

-When I was first diagnosed the neuro at major ALS center said there's nothing I could eat that could help or hurt. The dietitian I see at clinic said to eat everything and anything - just so I kept weight on. That's what I've been doing since diagnosis in 2011. For the first 7 years, the folks at work didn't know I had a problem - I did have a desk job. Today after 10 years, I use a power wheelchair & have very weak shoulders, arms and hands. I need help showering & dressing but still manage transfers. Breathing, speaking and swallowing are still good.

So, while eating everything and anything, I have slow progression. I think the idea that the foods you mention have any affect on ALS progression is incorrect.

 

[sassy]

My husband also has slow progression and has to eat about 4500 calories to maintain weight. I asked his neurologist about food and inflammation and she said (if I understood correctly) the inflammation they talk about in ALS is not the same inflammation you get from eating unhealthy foods.

 

[grandtetons2]

Hello: I appreciate your questions. Yes, I am looking for diet to gain weight. I have been diagnosed by my neurologist and he ordered a 2nd opinion, doctor also agreed with the diagnosis. I am working with an als team at the hospital department for Neurology. I am working with a Speech pathologist as my speech is slurred since last October. Also, I am working with a Functional Medicine doctor who said I should not eat sugar, dairy, or too much starch as that causes inflammation in the brain and causes nerve damage over the
body , entire muscles and nerves . I am eating fruits, vegs, eggs, and healthy protein. I am taking 12 vitamins and supplements. I am losing weight and feeling weaker. What can I eat to gain 5 to 10 lbs. I appreciate your post. I am open to all suggestions.

 

[Bestfriends14]

Hi there

Im sorry to hear of your diagnosis. Please eat anything and everything that you want to eat as this will be the only thing that can keep the weight on. A functional medicine doctor is not a neurologist and will not give you the correct information to keep quality of life.

If you are eating, yet continuing to lose weight, you need to bulk up the types of food you are eating. You are eating foods for people on a diet; ALS patients do not have that luxury. The faster you lose weight, the quicker the disease can progress.

High carbs, high protein, and healthy fats (nuts, fish, etc.), ice cream, cookies, whatever your favourite foods are if you can tolerate it, is what is recommended. Please reach out to the nutritionist at the ALS clinic and they can guide you as to what you should be eating. Sassy and Grounded make an excellent point about the difference in ALS and inflammation from foods. The two are NOT related whatsoever.

Eat the all the yummy foods you love.

 

[affected]

Definitely you need to look roughly at your calorie intake and increase it.
There are lots of great things like quinoa and oats that can add calories and coconut products - milk, cream and oil.
You can cook high calorie veges like sweet potatoes and beetroots, that are not as starchy as potatoes, in lots of coconut or olive oil, flavour up with herbs, and then turn into a mash with extra coconut cream thrown in. Delicious!

Also look at making smoothies and consuming as much as you can - again use non dairy milks, almond milk is great, and blend in fruits like bananas, blueberries and look up other high calorie fruits. Add in peanut butter some dark chocolate and you are packing in the goods.

If you google great recipes for smoothies you will find great ideas that meet your palate.

If you are having any swallowing issues, have you discussed a peg? Honestly, eating can consume a lot of calories if there are breathing and/or swallowing issues. So you can burn up a lot of the calories you are taking in.

Now I will also say that if you really enjoy anything on the list the Functional Medicine doctor said to avoid, I would weigh up what is going to constitute the best quality of life for you. If you have allergies or moral reasons to avoid foods, of course do so. But beware being told that foods are 'bad for the nerves' if the person is not an ALS expert.

And keep asking questions. We have some members here that will probably also give some really good pointers to diet choices they feel help them a lot.

Losing weight, particularly early, really does speed up progression.

 

[nona]

Don't forget that you can drink a lot of meaningful calories. Kate Farms has some delicious nondairy drinks. I tend to avoid anything with high fructose corn syrup, which most of the common meal supplement drinks have.h

 

[affected]

Yes I'm with Nona - those high fructose corn syrups are something I would suggest avoiding.

 

[KateMMA]

Grandtetons2, I asked the neurologist at my ALS clinic if I should start an anti-inflammatory diet for the same reasons you mentioned and he said something to the effect of, "There is no data that shows any particular diet helps but we do find that when our patients start a special diet like keto, atkins, or if they become vegan, they inevitably lose weight and their disease starts progressing more rapidly."

Maybe if you're less restrictive, you'll be able to gain some weight.

That being said, does anyone know if it is the process of losing weight (ie. Calorie deficit and metabolic process) or just falling below a certain weight that speeds up progression? I'm asking because after I was first diagnosed and they said not to lose weight, I think I went a bit nuts and ended up gaining about 10 pounds in a few months and now I'm about 20-30 pounds heavier than I'm comfortable and don't feel healthy. Can I safely lose the 10 pounds I gained recently or would that risk speeding up my progression?

 

[grandtetons2]

I thank all of you for giving me your thoughts and information. I really appreciate it. I am open to any thoughts and ideas.
To all of you and your family members, I wish you well, live long, and keep positive !
Grandtetons2

 

[Nikki J]

Kate If you lose weight by dieting alone you will lose some muscle. You can’t afford to do that.

 

[KateMMA]

Nikki, thanks for the response! When you say "dieting alone" do you mean that losing weight with diet alone is bad but losing it with some exercise is okay?

I know we're not supposed to do intense exercise because it can speed progression but I do love easy to moderate hiking and swimming. Do you think that would be a safe way to lose the weight I recently put on?

I don't want to add diabetes and heart disease to my list of ailments.

 

[Nikki J]

Maybe depending on the balance. But go super super slow. And there was a study that found a bmi closest to 31 correlated to slowest progression. Btw my clinic’s rule for exercise is if it takes more than one hour to recover completely to your baseline it is too much

 

[lisa g]

KateMMA- as Nikki said, if it takes you more than an hour to recover to your baseline your doing too much. My clinic said the same so I adjusted to that mindset. I used to walk 4 miles a day but now do 2 miles. If I don't feel like it I just don't do it. I also love to swim in the pool, which I have modified to stretching and fewer laps.

As far as weight, if you can't gain weight it's important to maintain where you are. I start every day with a high protein (about 40 grams), high calorie (about 1,000 calories) shake that I make. I have been vegetarian for 8 years converting to vegan about 5 years ago. I decided this year that I will no longer beat myself up if I occasionally add chicken, fish or eggs for additional protein and ice cream for added fat. I look at it as a small trade off for my health.