Nutrition Guide for People Living
with Myotonic Dystrophy
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Disclaimer: This guide was created to help educate you about nutrition. This guide does not replace any
advice from your doctor or dietitian and is meant to be educational only. Always consult your doctor or
dietitian before making any significant changes to your diet.
A publication of the Myotonic Dystrophy Foundation (MDF)
Chief Executive Ocer: Tanya Stevenson, EdD, MPH
Program Director: Leah Hellerstein, LCSW, MPH
Authors: Rebecca Hurst Davis, MS, RD, CSP, CD, CNSC; Robin Meyers, RD, MPH, LDN;
Susan Whitacre, MS, RD, LD
Publication Design: Julie Mills, Designpony
Community Reviewer Panel: Sara Kevern, RD, CNSC, Rebecca Coplin
©2020 by the Myotonic Dystrophy Foundation. All rights reserved. This publication is provided free of charge by
the MDF. Wide dissemination is encouraged. Copies may be made and distributed in keeping with the following
guidelines: The publication must be reproduced in its entirety, including pages containing information about MDF.
Copies of the publication may not be sold. 1/2021
The Myotonic Dystrophy Foundation is the world’s largest myotonic dystrophy-
only patient advocacy organization. Our programs include funding critical research,
providing comprehensive resources and support to aected individuals, advocating
with government agencies to enhance the drug development pipeline, increase
research funding, and improve patient services.
Nutrition Guide for People Living
with Myotonic Dystrophy
Basics for a Healthy Diet ................................ 1
Getting Started on a Healthy Diet ......................... 1
Diet and Myotonic Dystrophy ............................2
Sample Mini-Meals and Snack List ........................2
Managing Constipation with Myotonic Dystrophy ...........3
Being Overweight with Myotonic Dystrophy ...............4
Being Underweight with Myotonic Dystrophy ..............5
Managing Swallowing Problems with DM ..................5
Modified Foods ........................................6
Feeding Tubes .........................................7
Supplements ..........................................7
Where to Get Answers ..................................8
Reference List .........................................9
NUTRITION GUIDE FOR PEOPLE LIVING WITH MYOTONIC DYSTROPHY
MYOTONIC DYSTROPHY FOUNDATION
www.myotonic.org
1
Getting Started on a Healthy Diet
Here are some strategies and tips to consider when you first begin
a healthy diet.
Increase fruits and vegetables, strive for a “rainbow of colors”
on your plate - Low calorie, high nutrient and fiber content,
helps with constipation and weight management.
Eat lean meat, fish and poultry - Grilled, baked or broiled.
Drink enough fluids - Water helps maintain weight and can
help prevent and relieve constipation.
Increase your intake of whole grains.
Incorporate beans and legumes into your meals at least 3
times per week - Provides protein, fiber, and B vitamins.
Decrease sugary drinks, juice and desserts - This will help
with weight management.
Decrease caeine intake - This can decrease side eects like
fast heart rate, muscle tremors, upset stomach and increased
urination.
Basics for a Healthy Diet
It is important to have a basic understanding of nutrition before you
read this entire guide. Nutrition is the process of providing or obtaining
the fuel necessary for health and growth.
Calories are units of energy used in nutrition. Calories provide
nourishment for our bodies and come from three primary macro-
nutrients: protein, fat, and carbohydrates. Recommended sources:
Protein: Beans, lentils, meat/poultry, eggs, seafood, nuts,
seeds, dairy, soy, tofu
Carbohydrates: Fruits, starchy vegetables (corn, potatoes, peas,
and lentils), grains (oats, quinoa, corn, rice, rye, barley), dairy
Fats: Oils (canola, olive), nuts, seeds, avocado, cold water fish
How many calories are needed? Enough for a child to grow and
for an adult to maintain, gain or lose depending on their needs.
Eating a variety of fruits and vegetables and limiting sweets and
sweetened beverages is important.
Poor nutrition can cause low energy. Consider the common
saying, “you are what you eat” when assessing your energy level.
Vegetables
Protein
Grains
Fruits
Dairy
The MyPlate model shows the five
food groups (fruits, vegetables,
proteins, grains, and dairy) in a
place setting. It is designed to help
you understand what types of
food to include in each meal.
Check out choosemyplate.gov
for an easy-to-follow plan for
healthy eating and more.
NUTRITION GUIDE FOR PEOPLE LIVING WITH MYOTONIC DYSTROPHY
MYOTONIC DYSTROPHY FOUNDATION
www.myotonic.org
2
Diet and Myotonic Dystrophy
Research has not shown that any specific diet is helpful to decrease
symptoms of myotonic dystrophy (DM). Nutrition recommendations
for DM are similar to the rest of the population. The following are some
general guidelines that can be helpful.
Eat a well-balanced diet. Avoid cutting out specific food groups
from your diet unless needed for therapeutic reasons (for example,
celiac disease, etc.).
Don’t skip meals. Your muscles need a steady dose of energy to
function.
If you are tired and can’t fix foods easily, consider easy foods or
drinks that take less eort to fix and eat.
If you have trouble swallowing, work with a speech therapist and
dietitian to find the best foods that you can tolerate safely.
Try to maintain your weight. It is hard on your body when you
gain or lose weight frequently.
Take a daily multivitamin.
If you are taking steroids, also ensure you take calcium and
vitamin D as steroids can cause a deficiency of these vitamins
and minerals.
Spread out meals/snacks. Your body and muscles need constant
energy spread throughout the day.
Drink at least 6-8 glasses of water per day. Dehydration makes us
more tired and weak.
Remember, more protein does not equal more muscle. While
protein is used to maintain tissues and muscle, too much protein
may cause you to lose calcium. A balanced diet will give you
adequate protein to prevent muscle breakdown. Divide protein
containing foods throughout the day.
Sample Mini-Meals and Snack List
A good mini-meal has one item from each section:
Protein/Fat
Tuna pouch
Hard-boiled egg
Prepackaged nuts/seeds
Nut Butter
Hummus
Greek yogurt/milk
Carbohydrate
Whole grain pita bread/crackers
Fruit
Carrots
Peapods
Cereal
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NUTRITION GUIDE FOR PEOPLE LIVING WITH MYOTONIC DYSTROPHY
MYOTONIC DYSTROPHY FOUNDATION
www.myotonic.org
3
Managing Constipation with Myotonic
Dystrophy
DM causes decreased muscle mass and function; since your
gastrointestinal tract is a muscle, this may result in constipation. The
following are some tips to help with this issue.
FACT: Food can help with constipation!
Eat 3-5 servings of fresh fruits and vegetables daily. Try to choose
fruit over juices. A serving size is 1 piece of fruit or vegetable or
1/2 cup of canned, fresh, or frozen.
Increase fiber slowly. If you start eating too much fiber at once, it
can make you feel worse. Fiber is found in the following foods:
Fruits, vegetables, beans, whole grain cereals, whole grain
bread, oatmeal, nuts.
How much fiber should you consume? The easy answer is more
than currently consumed and increase slowly.
Adults: 25-35 grams per day
Children:
1-3 years old - 19 grams per day
4-8 years old - 25 grams per day
9-13 years old - 25-30 grams per day
14-18 years old - 25-38 grams per day
Check food labels, foods with 3-5 grams or greater of fiber per
serving are good.
Drink plenty of liquids - increasing fiber without increasing fluids
can make your constipation worse.
Fluid recommendations for children: (*all are 8-ounce glasses)
5-8 years old - 5 glasses per day
9-12 years old - 7 glasses per day
Fluid recommendations for those 13 years and up:
At least 8 to 10 glasses per day
Prunes and prune juice help relieve constipation.
Probiotics (live and active cultures) such as yogurt, kefir, and
supplements can help.
After increasing fiber and fluids, you may still need help. Many
people need medication as well as diet changes to help with their
constipation. Stool softeners such as Colace and Senokot and are
often used. Ask your doctor or dietitian for guidance on this.
Popular favorite: Prune juice
NUTRITION GUIDE FOR PEOPLE LIVING WITH MYOTONIC DYSTROPHY
MYOTONIC DYSTROPHY FOUNDATION
www.myotonic.org
4
Don’t skip meals. When you skip meals, you may overeat at the
next meal.
Eat meals at the table and avoid using screens during meals. It is
easier to eat more if you are not paying attention to what you are
eating.
Keep your hands and mouth busy. Chew gum or sugar free candy.
Brush your teeth so you don’t feel like eating more food.
Try to limit eating out to fewer than 1-2 times per week. You can
usually control what you eat better at home.
Use smaller plates and bowls to feel like you are eating more.
Pause before having another serving of food. It takes your brain
20 minutes after eating to tell you that you are full.
Eat slowly and chew your food thoroughly.
Try to include fat and protein with meals and snacks to help you
feel full longer.
Eat more low calorie fruits and vegetables. Have them cut up and
in the refrigerator so they are ready to eat.
FACT: Large meals increase heartburn. Limit eating to one hour
before sleeping, limit spicy food, consider smaller, more frequent
meals.
Popular easy-to-prepare favorite: Birds Eye Frozen
Steamfresh Protein Blend
Being Overweight with Myotonic
Dystrophy
Maintaining a healthy weight can be dicult since myotonic dystrophy
can aect exercise and the ability to move around. Here are some tips
and ideas to help.
Watch portion sizes. If you can’t exercise much, you will need
fewer calories.
Considerations:
Less mobile and less active individuals usually require fewer
calories.
Fewer calories per pound of body weight are usually required
with age.
Decreased lean muscle mass usually requires fewer calories.
Don’t drink liquids that have calories. This is an easy way to
consume too many calories.
What do I drink instead of soda, juice and artificially
sweetened beverages? Water, seltzer water, sugar-free
lemonade, unsweetened tea.
Do I need sports drinks? No.
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NUTRITION GUIDE FOR PEOPLE LIVING WITH MYOTONIC DYSTROPHY
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www.myotonic.org
5
Being Underweight with Myotonic
Dystrophy
It can be hard for some people to gain weight with DM due to digestion
and swallowing issues. Here are some tips and ideas to help.
Eat snacks between meals. If you get full quickly, have 6 smaller
meals so you don’t get full as quickly.
Try to replace water with other liquids that have calories, such as
milk and smoothies.
Try milkshakes and other nutrition supplements. Liquids are easy
to drink and take less eort to drink and prepare.
Add condiments to food, such as salad dressing, sauces and
gravies, guacamole, and hummus to make it easier to swallow
and add calories if needed.
Make the foods you eat count. Eat higher calorie foods instead of
filling up on low calorie foods.
Eat canned fruits in heavy syrup for more calories or dip your fruit
in yogurt, peanut butter or other high calorie sauces/dips.
Add higher fat foods to the food you eat (butter, healthy oils,
avocado, nut butters).
Add ice cream to nutritional supplements such as Boost and
Ensure to make them taste good and increase calories.
Popular favorite: Try Carnation Breakfast Essentials
Managing Swallowing Problems (Dysphagia)
with Myotonic Dystrophy
Since our throat is made up of muscles, swallowing can be aected for individuals
with myotonic dystrophy. Many individuals with DM complain of a feeling of food
“sticking” in their throat. Weakness in facial muscles can lead to problems biting,
chewing and swallowing.
Eat foods that are softer and easier to chew such as chicken salad, ham
salad, egg salad, tuna salad, grits, polenta, orzo, applesauce, watermelon,
soft mashed fruits and vegetables such as bananas, berries, sweet potatoes,
spaghetti, squash, or smoothies.
Smoothies...
Are a great way to get protein, fruits, vegetables, fiber and dairy all in one
drink, but they can be high in calories.
You should not drink smoothies in addition to a meal unless you are
having trouble gaining weight or getting enough protein.
For commercial smoothie products, look for options that are high in
protein but lower in calories.
For homemade smoothies, be careful what sweeteners you use. Fresh
fruit is healthy but combined with yogurt, juice and honey it packs a lot
of calories.
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NUTRITION GUIDE FOR PEOPLE LIVING WITH MYOTONIC DYSTROPHY
MYOTONIC DYSTROPHY FOUNDATION
www.myotonic.org
6
Try not to eliminate food groups. Think creatively and modify food
and beverage textures and consistencies.
Add sauces and gravies to food to help with food not sticking in
your throat.
Cut up food into smaller bites.
Eat slower and chew more.
Alternate liquids and solids to help with swallowing.
Use adaptive utensils or plasticware, straw cups or camelbacks.
See a speech therapist if you have any questions or concerns
about your swallowing.
When possible, try not to eat alone.
During mealtime, focus only on eating and avoid using
technology and devices.
Popular favorite: Try Smuckers Uncrustables
Modified Foods
Some people with myotonic dystrophy will benefit from eating modified
foods, meaning foods that are moistened, peeled, cooked, chopped,
and pureed, so they are easier to eat. Below is a chart of the major food
groups with examples of modified foods.
Food Group Level 1 (Soft) Level 2 (Minced and Moist) Level 3 (Smooth Puree)
Grains
Moistened bread,
cooked/cold cereal, rice
Moistened pancakes,
noodles, mashed potatoes
Pureed starches, breads
Fruits
Soft peeled fresh fruits,
soft berries
Canned, cooked fruits -
no skin, juice some pulp
Pureed fruits, juice,
no chunks, smoothies
Vegetables
Cooked tender vegetables,
shredded lettuce
Soft, well cooked
vegetables, chopped or
diced, salsa
Pureed vegetables,
tomato sauce, no chunks
Dairy
Milk, yogurt,
cottage cheese, cheese
Milk, soft yogurt,
cottage cheese
Milk, buttermilk
smooth yogurt
Protein
Thin sliced, ground
tender meat, eggs
Moistened ground or
cooked meat, tuna,
casserole, beans,
scrambled eggs
Hummus, soft tofu with
liquid, pureed meat
Desserts
Easy to chew, tender
cakes and cookies
Pudding, soft fruit pies,
moistened cakes,
seedless jams
Smooth pudding,
shakes, ice cream,
Fats Smooth, creamy fats
Butter, oils, cream sauces
and gravy, sour cream,
whipped topping
Butter, oils, smooth sauces
and gravy, sour cream,
whipped topping
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NUTRITION GUIDE FOR PEOPLE LIVING WITH MYOTONIC DYSTROPHY
MYOTONIC DYSTROPHY FOUNDATION
www.myotonic.org
7
Feeding Tubes
For children and adults who are unable to take enough nutrients by
mouth safely, a feeding tube may be recommended. Here is some basic
information about feeding tubes; speak with your doctor if you think a
feeding tube is appropriate for you.
A feeding tube can provide support in the short term or the long term.
As long as there is no aspiration present, eating by mouth can
continue.
Nasogastric tubes (a flexible tube of rubber or plastic that is passed
through the nose, down through the esophagus, and into the
stomach) are considered a short term method to provide nutrition.
Gastronomy tubes (a tube inserted through the abdomen that
delivers nutrition directly to the stomach) are a longer term
method to provide support.
When to consider a feeding tube:
Failed swallow study
Growth failure/losing weight
Increasing calories is not working
Issues with chewing/swallowing
Fatigue with feeding
Hydration concerns
Formula type depends on individual tolerance/nutrition needs;
formula types include standard, soy, blenderized, hydrolyzed,
and elemental.
Insurance coverage for formula varies, check with your provider
before ordering formula.
Consider a feeding tube before it becomes an emergency!
Supplements
For some individuals with DM, supplements can be important to nutrient
intake but discuss supplement use with your doctor BEFORE starting.
We will only recommend supplements that have been clinically proven
to help DM symptoms, but at this time, there are none.
Consider a daily multivitamin.
If you are not eating fish two times per week, consider fish oil as a
source of omega-3 fatty acids (check for mercury free).
Take Vitamin D and Calcium supplements if you are deficient.
Use caution with supplements! Supplements do not need to follow
the same guidelines or standards as food/drugs. Check the Oce
of Dietary Supplements for guidance: https://ods.od.nih.gov/
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NUTRITION GUIDE FOR PEOPLE LIVING WITH MYOTONIC DYSTROPHY
MYOTONIC DYSTROPHY FOUNDATION
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Where to Get Answers
Do you have further questions about managing diet and nutrition with
DM? Consider the below.
Get help from a Registered Dietitian (RD) or Registered Dietitian
Nutritionist (RDN):
RD = Registered Dietitian/Nutritionist. RDs have a degree in
nutrition and have completed an approved internship.
LDN = Licensed Dietitian/Nutritionist. LDN means RD is licensed
in the state where they practice.
All hospitals hire RDNs.
Consider dietary evaluation every 1-2 years for adults,
3-6 months for children, or if you are having trouble gaining
weight or using a feeding tube.
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Consider a Speech Language Pathologist (SLP) or Occupational
Therapist (OT) for:
Assessing for swallowing issues
Improving oral motor skills, feeding therapy
Working on fine motor/hand skills
Altering texture of foods (adding thickeners, puree) to decrease
energy spent on eating
Positioning
Adaptive equipment
If you want to know exactly how your eating measures up:
Consider a 3 day food record with analysis from a dietitian.
Track yourself online at https://cronometer.com/
Use an app such as My Fitness Pal, LoseIt!, MyNetDiary.
Reliable nutrition information:
Contact the Academy for Nutrition and Dietetics for an RDN
near you. https://www.eatright.org/
Visit the US Department of Agriculture website for food and
nutrition information and programs. https://www.usda.gov/
topics/food-and-nutrition
Contact us for further assistance. https://www.myotonic.org/
NUTRITION GUIDE FOR PEOPLE LIVING WITH MYOTONIC DYSTROPHY
MYOTONIC DYSTROPHY FOUNDATION
www.myotonic.org
9
Reference List:
Nutrition Issues Related to Myotonic Dystrophy
https://www.myotonic.org/digital-academy/nutrition-issues-related-dm
In this webinar, Kari Lane, RD, CNSC, Clinical Dietitian at the University of Utah,
discusses nutritious diets to maintain heart and gastrointestinal health for people
living with myotonic dystrophy.
Nutrition and Myotonic Dystrophy
https://www.myotonic.org/sites/default/files/pages/files/Meyers-
Nutrition-2019.pdf
https://www.myotonic.org/digital-academy/exercise-nutrition-speech-2019-
myotonic-annual-conference
In these presentations from the 2019 MDF Annual Conference, Robin Meyers,
RD, MPH, LDN from the University of Pennsylvania reviews current strategies for
managing DM symptoms, research and nutrition.
Nutrition and Myotonic Dystrophy
https://www.youtube.com/watch?v=i1OUQLwmUNk&feature=youtu.be
In this support group webinar, Susan Whitacre, MS, RD, LD, Clinical Dietitian at
the MDA Clinic at the University of Kansas Medical Center, discusses diets that
are best for DM, managing constipation, dietary considerations for those who
are underweight and overweight, swallowing issues and more.
Debunking Myths and Eating Strategies
https://www.myotonic.org/sites/default/files/MDFNutrition08292017.pdf
Presented by Rebecca Hurst Davis, MS, RD, CSP, CD, CNSC, Clinical Dietitian
at Intermountain Homecare and Hospice/Primary Children’s Hospital Salt Lake
City, UT. This presentation from the 2017 MDF Annual Conference reviews
general healthy nutrition guidelines and strategies, feeding tubes, referrals and
common questions.
Food Preparation for the Myotonic Dystrophy Community
https://www.myotonic.org/digital-academy/food-preparation-dm-community
This webinar covers a basic understanding of adult nutrition, dysphagia
(swallowing diculties), and food preparation. Dr. Krongold (adult-onset DM1)
and her partner Jessica, demonstrate the tools needed to prepare three simple,
nutritious meals for people with chewing and/or swallowing diculties.
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