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What changes to your diet have you made?
At my first ALS clinic visit, I could have sworn the dietitian told me to avoid sugary foods because they can accelerate ALS. I don’t recall her exact words but she encouraged me (on more than one occasion) to reduce sugar (soda, sweets, etc) and if I did eat something sugary to eat after a full meal. I’ve seen different information about food/diet/ALS in many different places, including here at ALS News Today.
What changes to your diet have you made? Do you believe it makes a difference? What information have you received from doctors or dieticians?
https://alsnewstoday.com/news/als-mnd-2023-diet-blood-sugar-slow-als-progression/
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12 Replies
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At my first ALS clinic visit (14 yrs ago), I at the time was a vegetarian. I followed that diet for about 11 years prior to my ALS diagnosis… but at that first visit, my doctor told me I need to consume waaay more protein. I felt I had reached my limit of protein-containing soy and legumes – – blech! So, I switched to adding animal protein to my diet. I gained a few pounds and felt good. The dietician told me to “eat whatever I wanted” – – and don’t worry about calories. But I chose to remain a “healthy” eater- – a mix of veges, protein, carbs, and “fun foods.” It’s been good so far.
Lately, I read about the reports on high-glycemic intake helping to slow down symptom progression. (https://alsnewstoday.com/columns/sorting-out-sometimes-confusing-advice-als-diet/) So, I’m enjoying my cookies and dough-nuts a bit more now 😉
alsnewstoday.com
Sorting out the sometimes confusing advice on ALS and diet
Columnist Dagmar Munn considers the often confusing advice she's heard about ALS and diet over the past few years.
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I made the choice to begin eating meat again. It’s mostly chicken, turkey, fish and beef. I try to be mindful.
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Melody – – I was a healthy vegetarian for 11 yrs prior to my diagnosis. At that time my doctor told me I need way more protein. I couldn’t imagine eating even more soy, chickpeas, etc. so, I began eating chicken, beef, and fish. Best decision I ever made. I feel stronger and am maintaining my weight.
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I have been on a low carb diet for many years. No junk food or stuff out boxes. Since my diagnosis added some carbs but my blood sugar is up some. I’m not going to go crazy eating sugar which is bad for most other diseases. I will add some fruit etc. I will continue to eat meat and eggs. I am so far maintaining my weight.
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Since I am exercising more now, I have increased my proteins and carbs. Cottage cheese, chicken, and eggs. For carbs I eat raisin bread, noodles, and fruits like bananas.
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On November 8, 2023, Mayo Clinic in Phoenix outfitted me with a feeding tube. That also set me up with prescription with Coram (CVS) for monthly supply of Nutren supplements. My Bulbar ALS took away my ability to swallow. For first few months I coul cheat and eat very soft foods like tapioca, soft yogurt, or ice cream. My tongue is so stiff I can’t move food around in mouth. Since Feb of 24, I’m on 100% tube feed. My voice is also gone.
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Hey Theh
I would love to connect with you. I am heading down the same path as you and I am in Colorado.
Send me an email sometime
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I eat grass fed animal protein, organic fruits and vegetables, healthy fats like olives, avocado, olive oil and avacado oil. Sometimes some walnuts or pecans, or nutzo. Organic mold free coffee and herbal teas.
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While not being super-strict, we have moved toward a Mediterranean style of eating. Eating more wild caught fish, lots of fresh vegetables, berries and melons. Pasta has changed to chickpea based, bread and potatoes are minimal. Walnuts, olives, avocado.
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Protein drinks, more protein meat with meats , sauce or gravy with thick meat.
Lots of chicken and fish!
Limb onset 3 years ago
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My Functional Health Dr. had me do a food allergy & sensitivity blood test. With Allergies the body has an allergic reaction and the reaction could be fatal (think peanuts or shellfish). With Sensitivities, the body has an inflammation type reaction. I understand that one of the underlying issues with ALS is inflammation around the nerve/muscle connection. Therefore, controlling inflammation is important.
Turns out that I am sensitive to potatoes, gluten, and rice. Since I have cut them out of my diet, I feel like I have more energy and that the progression has slowed (might just be a placebo effect – but I’ll take what I can get).
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Hello Geezer, I’m glad you identified your allergies/inflammation triggers… this will help you to cope and live with your ALS.
However, ALS is not caused by nerve inflammation – – you may be confusing ALS with MS (here is a helpful link: https://www.als.org/understanding-als/difference-between-ms-and-als#:~:text=MS%20damages%20the%20myelin%20sheaths,death%20of%20the%20motor%20neurons.)
So far, there has been no identified cause of ALS – https://alsnewstoday.com/causes-of-als/ and no association or treatment via diet.
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