# Nutrition and diets in myotonic dystrophy
Myotonic dystrophy presents various nutrition-related challenges. The disease can impair the ability to take in and process food — both from muscle function (chewing, swallowing) and from digestion. Additionally, body composition and energy requirements play a major role. This tab describes which nutritional approaches are being investigated or recommended for this disease, and what research shows about them.
---
Protein-rich nutrition
ResearchediPositive results in clinical studies, not yet standard treatment
In myotonic dystrophy, the body gradually loses muscle mass. For this reason, research is investigating whether nutrition with sufficient protein can help slow this loss. Protein is the basic building material for muscles; theoretically, regular intake of sufficient protein-rich food could contribute to maintaining muscle strength.
Research on energy expenditure and muscle development (2023) shows that people with myotonic dystrophy have changes in their body composition and muscle function — including how they use energy. This points to the importance of nutritional attention, but the research does not yet provide clear guidelines on how much protein is optimal. Several studies (including one on a group intervention on healthy eating in 2020) suggest that attention to nutrition and meal preparation can be helpful, without a specific protein curve being established.
There is a risk that eating a lot of protein-rich food becomes more difficult for some people with myotonic dystrophy as muscle strength in the chewing and swallowing muscles decreases. This requires ongoing consultation with your healthcare provider.
---
Nutrition in gastrointestinal problems
ResearchediPositive results in clinical studies, not yet standard treatment
Many people with myotonic dystrophy experience severe gastrointestinal complaints: loss of muscle function in the esophagus and stomach causes poor food transport, vomiting, constipation or conversely diarrhea, and a feeling of fullness after small portions. This is an important topic in research; in May 2025 there was an international workshop in the Netherlands specifically about gastrointestinal problems in myotonic dystrophy.
The cause lies in the defect the disease causes: a fault in protein translation leads to loss of function in the smooth muscles of the stomach and intestines (published December 2025). This can become more severe as the disease progresses.
Nutrition choices are adjusted in this case to what someone can tolerate: smaller, more frequent meals; more liquid food in certain phases; sometimes compensating for nutritional deficiencies that arise because food is not well absorbed. This requires highly individualized care and close collaboration with your doctor and dietitian — there is no standard "diet" for this complication.
---
Intermittent or periodic fasting
Advised againstiProven ineffective or harmful, or dangerous in combination with your treatment
There is no research recommending intermittent or periodic fasting in myotonic dystrophy. On the contrary: because many patients already struggle with food intake, food absorption, and muscle preservation, fasting would be risky. It can lead to malnutrition, further muscle loss, and instability.
In myotonic dystrophy, nutrition is central to maintaining body weight and muscle mass. Deliberately avoiding food — even in a structured form — does not fit with what this disease requires.
---
Mediterranean dietary pattern
ResearchediPositive results in clinical studies, not yet standard treatment
The Mediterranean pattern (lots of vegetables, fruit, olive oil, fish, moderate amounts of meat and dairy) is widely recognized as healthy and supports heart and vascular function. For myotonic dystrophy, extra caution applies: the disease affects not only muscles in arms and legs, but also the heart. Research on heart rhythm disorders and heart energy production (2026) shows that these are affected.
A Mediterranean pattern with plenty of vegetables and healthy fats could theoretically be favorable for the heart. But research specifically into this pattern in myotonic dystrophy is still lacking. The pattern is not discouraged, but it has also not been specifically demonstrated as beneficial for this disease in studies.
The practical question is: can someone with myotonic dystrophy actually eat and digest large amounts of raw food (high fiber), given gastrointestinal problems? This requires individual assessment with your dietitian.
---
Ketogenic diet
UnproveniNo scientific evidence that it works
The ketogenic diet — very low in carbohydrates, high in fats — is sometimes studied in neurodegenerative diseases based on the idea that alternative energy sources for the nervous system and muscles may be beneficial. For myotonic dystrophy, solid research is lacking.
It is known that people with myotonic dystrophy show abnormalities in how they use and store energy (2023). This theoretically supports research into alternative energy patterns. But so far, it has not been demonstrated that ketogenic diet helps in this disease.
An additional risk: ketogenic diet is strict, difficult to maintain, and can worsen gastrointestinal problems — something that already plays a major role in myotonic dystrophy. It should only be considered under close supervision, and evidence is still lacking.
---
Nutrition in digestive problems and low calorie intake
ResearchediPositive results in clinical studies, not yet standard treatment
One of the most persistent problems in myotonic dystrophy is what is called "malnutrition": insufficient food intake and undernutrition despite eating intent (described in 2022). This can arise from:
- Difficulty with chewing and swallowing (muscle atrophy in chewing and throat muscles)
- Loss of esophageal motility (food gets stuck)
- Early satiety, vomiting (gastric stasis)
- Diarrhea or constipation
- Decreased appetite
Nutrition is then often adapted: more fluid food, smaller portions, nutritional drinks as supplementation, and in severe cases feeding via a tube in the stomach (percutaneous endoscopic gastrostomy, PEG) or small intestine. This is done to prevent undernutrition.
Research from 2020 showed that a group intervention in which people learned together to cope with food intake and meal preparation was found useful. This suggests that tailored solutions — rather than one fixed diet — are most valuable.
---
Vitamins and minerals
ResearchediPositive results in clinical studies, not yet standard treatment
Because myotonic dystrophy can lead to undernutrition and because food components may not be well absorbed, vitamins and minerals are sometimes lacking. This is not seen as one fixed pattern, but measured and supplemented per individual.
Research into oleic acid (a fatty acid involved in muscle energy) in animal models of myotonic dystrophy (2026) points to abnormalities in lipid metabolism. This suggests that vitamin and mineral balance requires continuous attention, but no standard supplementation regimen has been demonstrated.
---
Final note
Food choices in myotonic dystrophy depend heavily on how the disease manifests in you: how well can you chew and swallow, how does your stomach and intestines respond, how many eating and absorption problems do you have, and what is your body composition and energy requirement? This requires continuous customization and cooperation with your clinician and ideally with a dietitian experienced in muscle diseases.
---
_This information never replaces the judgment of a physician. Always discuss your food choices and any support with your own clinician._