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What if I told you that eating sugar cookies and cherry pie could help slow down the progression of <a href="https://alsnewstoday.com/symptoms-of-als/">ALS symptoms</a>? You’d probably say, “Hey Dagmar, you’ve gone bananas!” I know, I know. The suggestion sounds contrary to what we’ve always been told about healthy eating, especially for anyone who has <a href="https://alsnewstoday.com/what-is-als/">ALS</a>.
However, a recent analysis covered this month by <a href="https://alsnewstoday.com/">ALS News Today</a> reports that <a href="https://alsnewstoday.com/news/als-mnd-2023-diet-blood-sugar-slow-als-progression/">eating foods with a higher glycemic index</a> was associated with slower functional declines and prolonged survival among people with ALS.
Whoa there! Deliberately eating foods that cause blood sugar levels to spike does seem backward and upside down. Nutritionists caution us to avoid overloading our diets with carbohydrate-rich foods because doing so carries the risk of diabetes and related complications.
However, the pathology of ALS continues to be a mystery to medical experts, so I’ve learned to keep my mind open to all possibilities.
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<h3>Stepping on the scale</h3>
I discovered the roller coaster of dietary advice around my disease during my first <a href="https://www.als.org/support/certified-centers-clinics">ALS clinic</a> visit 13 years ago. While stepping off the scale, I learned that ALS patients are encouraged to gain weight. “Eat whatever you want,” was the advice, with the explanation that being a few pounds overweight was associated with slower symptom progression and longer life when compared with being underweight.
Before my ALS, given my early gymnastics, dance activities, and professional career teaching fitness, you could say I spent most of my life in leotards and leggings. The scale was never my friend. So being told I was free to plump up a little was music to my ears!
However, a review of clinical trials this summer <a href="https://alsnewstoday.com/news/more-evidence-needed-support-use-high-calorie-diet-als/">reported no evidence</a> of a high-calorie diet affecting symptom progression. Oh, well, eating a lot was good while it lasted.
Yet a 2018 study found evidence that <a href="https://alsnewstoday.com/news/hypermetabolism-in-als-linked-to-physical-decline-shorter-survival/">ALS is linked to hypermetabolism</a>, meaning my muscles are burning energy at a faster rate and need high-carbohydrate calories. All right, now I’m back to having extra helpings!
<h3>Questionable dietary advice</h3>
Adding to the ALS dietary confusion are the various cure-all “experts” who make the rounds on social media. Some recommend consuming boatloads of vitamins and supplements while others highlight a patient who was “cured” and urge everyone to duplicate their diet regime.
When I read these claims, I’m reminded of my mother-in-law, who lived to be 104. Throughout her life, she shunned salads while extolling the benefits of Wiener schnitzel. On her 100th birthday, her nursing home celebrated with cake and invited local TV news reporters. When asked to what she attributed her long life, she looked straight into the camera, winked, and said, “Beer!”
Drinking beer and avoiding lettuce might not be the secret to a long life, but having a good attitude helps.
While we wait for an official “ALS diet,” we need to consider our individual health histories, <a href="https://alsnewstoday.com/approved-treatments-for-als/">our medications</a>, and our body’s needs. Most important, we should discuss all of these issues with our medical team.
That’s the thing about ALS: There&#8217;s much we still don&#8217;t know about it. We just have to keep our minds open and keep up with the current news and research. Considering our <a href="https://alsnewstoday.com/als-diet-and-supplements/">diets and supplements</a> is a good way to begin.
All in all, the news about eating high-glycemic foods sure makes holiday treats taste even better. I’m doing it to live well while <a href="https://alsnewstoday.com/living-with-als-2/">living with ALS</a>.
<hr />
Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Sorting out the sometimes confusing advice on ALS and diet

Eating foods with a higher glycemic index — those more likely to quickly raise a person&#8217;s blood sugar — is associated with slower functional declines and prolonged survival among people with <a href="https://alsnewstoday.com/what-is-als/">amyotrophic lateral sclerosis</a> (ALS), according to a recent analysis.
Foods with high amounts of sugar include white bread and rice, while foods such as oatmeal, lentils, or kidney beans have a low glycemic index, resulting in lower blood sugar peaks but sustained sugar levels for longer periods.
Ikjae Lee, MD, of Columbia University in New York, presented the data in an oral presentation, &#8220;<a href="https://www.tandfonline.com/doi/pdf/10.1080/21678421.2023.2260189">Higher Glycemic Index and Glycemic Load Diet is associated with Slower Disease Progression in Amyotrophic Lateral Sclerosis,</a>&#8221; at the 34th International Symposium on ALS/MND, being held Dec. 6-8 in Basel, Switzerland. The findings also were <a href="https://pubmed.ncbi.nlm.nih.gov/37975189/#:~:text=Results%3A%20Baseline%20higher%20glycemic%20index,%2C%20p%3D0.04)%20respectively.">published recently in a study</a> in the <a href="https://onlinelibrary.wiley.com/journal/15318249?utm_source=google&amp;utm_medium=paidsearch&amp;utm_campaign=R3MR425&amp;utm_content=Medicine&amp;gad_source=1&amp;gclid=CjwKCAiA98WrBhAYEiwA2WvhOuvBbr3b0WyrogdMkACCEF3HzvrQh8t1JWaQRABVahPo0bAMeo3gzxoCKh0QAvD_BwE">Annals of Neurology</a>.
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&#8220;Dietary [glycemic index] is associated with functional decline and survival in ALS,&#8221; Lee said in the presentation, noting a need for more studies to confirm this relationship.
In ALS, degeneration of the nerve cells involved in muscle control causes weakness in the muscles needed to walk and speak, but also those needed to eat and drink. <a href="https://alsnewstoday.com/als-symptoms/difficulty-swallowing/">Difficulty swallowing</a> food can lead to malnutrition and weight loss, which have been <a href="https://www.sciencedirect.com/science/article/pii/S026156142030248X">linked to a worse prognosis</a> among ALS patients.
As such, an <a href="https://alsnewstoday.com/non-drug-therapies/diet-and-supplements/">appropriate diet</a> is thought to be important for helping patients maintain their health for as long as possible.
Studies have suggested that a diet high in calories could help to slow the neurodegenerative disease and help patients live longer, although most studies have been small and the <a href="https://alsnewstoday.com/news/more-evidence-needed-support-use-high-calorie-diet-als/">findings sometimes conflicting</a>.
It hasn&#8217;t been established whether there is a nutritional intervention that might be of benefit for a broad ALS population, Lee noted. Moreover, it is not known which specific dietary components (macronutrients) — such as carbohydrates, fats, and proteins — might be most important for influencing <a href="https://alsnewstoday.com/stages-of-als/">ALS progression</a>, and if their effects on blood sugar play a role.
<h3>The ALS Multicenter Cohort Study of Oxidative Stress</h3>
In the study, researchers examined the possible relationship between dietary components and ALS progression and survival among a group of 304 ALS patients in the U.S. involved in the ALS Multicenter Cohort Study of Oxidative Stress (COSMOS).
Participants — 59% men and 41% women — had a mean age of 61.6 and had experienced their first <a href="https://alsnewstoday.com/als-symptoms/">ALS symptoms</a> less than 1.5 years prior to enrollment.
Dietary intake was assessed with a food frequency questionnaire at the study&#8217;s start (baseline). Disease progression was monitored using the ALS Functional Rating Scale — Revised (ALSFRS-R).
Initial analyses adjusting for age and sex indicated that higher caloric intake and greater fat consumption were linked to slower functional declines. But these findings failed to reach statistical significance in final analyses where the team also accounted for clinical factors such as disease duration, disability levels, respiratory function, and initial symptoms.
However, &#8220;this is an observational study,&#8221; Lee noted. &#8220;We would not conclude that there is no association &#8230; just with our data.&#8221;
<h3>Measuring glycemic index and glycemic load</h3>
Meanwhile, the glycemic index (GI) and glycemic load (GL) of participants&#8217; diets were associated significantly with ALS progression at a three-month follow-up in adjusted analyses.
GI is a measure of how quickly a carbohydrate-containing food will increase a person&#8217;s blood sugar (glucose). Carbohydrates are the nutrients that are broken down into glucose to produce energy. In turn, GL takes into account the glycemic index and the total number of carbohydrates in a serving of that food.
For each one-unit increase in GI, reflecting a faster blood sugar spike, patients saw a 0.13-point slower ALSFRS-R decline. The 25% of participants with the lowest GI also experienced significantly faster ALSFRS-R score progression relative to the other participants.
Likewise, for every unit increase in GL, ALSFRS-R declines were 0.01-points slower, and the 25% of patients with the lowest GL also experienced a significantly faster decline in ALSFRS-R scores than the remaining participants.
Higher GI also was tied significantly to slower ALS progression after six months, a finding the scientists validated in another group of ALS patients.
Finally, survival analyses indicated that the 25% of patients with the lowest GI had the shortest survival relative to the other patients, &#8220;about eight months shorter than the other group,&#8221; Lee said. In final adjusted analyses, a higher GI also was associated with longer survival without the need for a tracheostomy, or breathing tube placement.
<h3>Preventing protein misfolding may slow ALS progression</h3>
Mechanistically, the scientist believes a higher glucose-based diet could help slow disease progression by preventing protein misfolding. Misfolded proteins are known to toxically accumulate in the patients&#8217; brains, where they&#8217;re implicated in ALS progression.
Lee emphasized, however, that the observed relationship between GI and disease progression &#8220;does not confirm causation.&#8221;
&#8220;Now, that being said, I really believe in our data,&#8221; the researcher added, noting that when looking at individual high-carb food items, such as French fries, spaghetti, or macaroni and cheese, greater intake of each of these foods also appeared linked to slower functional declines.
To confirm these relationships, &#8220;ultimately we need an interventional trial focusing on providing a higher GI diet or supplement,&#8221; Lee concluded.

ALS/MND 2023: Blood sugar-boosting diet may slow ALS progression

While eating a high-calorie diet is safe and well tolerated, it does not appear to slow disease progression or reduce the risk of death in people with <a href="https://alsnewstoday.com/what-is-als/">amyotrophic lateral sclerosis</a> (ALS), a review of published clinical trials found.
Combining data from multiple trials helps to create a single, more precise estimate of the effect of high-calorie diets in people with ALS. Yet, the review study included only four trials, all of which had few patients and short observations times. Consequently, the available evidence may not be strong enough to establish clear conclusions regarding the use of a high-calorie diet.
“A larger randomized controlled trial with longer observation might be needed to truly establish its efficacy,” which should offer more accurate information to make informed decisions about dietary choices, the researchers wrote.
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The study, “<a href="https://www.sciencedirect.com/science/article/abs/pii/S0035378723009827">Efficacy, safety and tolerability of high caloric diet in amyotrophic lateral sclerosis patients: A systematic review and meta-analysis</a>,” was published in <a href="https://www.sciencedirect.com/journal/revue-neurologique">Revue Neurologique</a>.
ALS affects the motor nerve cells responsible for movement, causing muscles to weaken and waste away over time, making it difficult to walk, speak, eat, and drink.
Poor nutrient intake (malnutrition) and weight loss are common in people with the disease and have been linked with worse survival outcomes. This occurs mainly due to <a href="https://alsnewstoday.com/als-symptoms/difficulty-swallowing/">difficulty swallowing</a>, so establishing a <a href="https://alsnewstoday.com/non-drug-therapies/diet-and-supplements/">proper diet plan</a> can help maintain good nutrition and offer other food options when swallowing becomes harder.
While there is no one-size-fits-all diet, many randomized clinical trials have tested if adding extra calories through sugars (carbohydrates) or fats (lipids) is safe and well tolerated and helps people with ALS live longer.
“However, most of these trials have been small and the results are conflicting,” the researchers wrote.
To draw broader conclusions, a trio of researchers in the Philippines and Canada used a method called meta-analysis to pool data from multiple published studies that had tested high-calorie diets in people with ALS.
<h3>Four studies used in the analysis</h3>
After reviewing the literature, a total of four studies, published between 2013 and 2022, were included in the analysis.
The studies included 311 patients. Of them, 176 followed high-calorie diets with carbohydrate or lipid supplementation, whereas 135 individuals used as controls ate fat-free or moderate-calorie diets.
The four studies lasted between 1-15 months. In all, it was concluded that high-carbohydrate and high-lipid diets “were generally safe and tolerable,” the researchers wrote.
The chances of high-calorie diets causing side effects or leading to dropping out were about the same as they were for controls. However, the results varied widely across studies.
Following high-calorie diets also did not significantly reduce the chances of dying or slow the decline in the revised ALS Functional Rating Scale (ALSFRS-R) score, a measure of how quickly a patient’s functional ability becomes impaired over time.
They also didn’t lead to significant increases in weight versus controls, “even when there was no or there was minimal heterogeneity [variation in results across studies],” the researchers wrote.
<h3>Pooled data was not statistically significant</h3>
While some studies showed beneficial effects of high-calorie diets on certain outcomes, the analysis of pooled data did not reveal statistically significant differences versus controls.
“Current evidence suggests that high calorie supplementation is generally safe and tolerable for patients with ALS. However, it has not been shown to be efficacious in improving weight and functional disability,” the researchers concluded.
However, “the low sample size, high drop-out rate and short observation time in most studies may have affected the result,” they noted, calling for a “larger-scale study, with a longer observation period.”

Tag: diet for ALS

Sorting out the sometimes confusing advice on ALS and diet

ALS/MND 2023: Blood sugar-boosting diet may slow ALS progression

More evidence needed to support use of high-calorie diet for ALS