A Guide to Healthy Eating for Adults with 22q11.2DS

Samantha D’Arcy, our Registered Dietitian, has been hosting nutrition webinars for our patients and families. Here are the recordings.

Let’s meet with a dietitian

What is a Registered Dietitian?

Registered Dietitians (RDs) in Ontario are uniquely trained food and nutrition experts. As members of interprofessional health care teams, they are the recognized experts in translating scientific, medical and nutrition information into practical individualized therapeutic diets and meal plans for people.

Collaboration with clients, caregivers, and other health professionals is central to dietetic practice. Registered Dietitians work with a variety of health professionals such as medical doctors and social workers to manage nutrition for health promotion, disease prevention, and treatment of acute and chronic diseases.

College of Dietitians of Ontario
Question: Why would I be asked to see a dietitian?
  • Weight management
    • Overweight
    • Obesity
    • Underweight
  • Healthy eating and lifestyle changes
  • Hypocalcaemia = low calcium level in your blood
  • High blood pressure = makes your heart work harder to pump blood throughout your body
  • Abnormal lipid profile
    • High LDL = too much “bad” cholesterol
    • Low HDL = not enough “good” cholesterol
    • High triglycerides = high level of fat in your blood
  • Gastroenterological issues
    • Constipation = having trouble or having irregular bowel movements
    • Gastroesophageal reflux disease = heart burn
    • Dysmotility = takes longer time for food to pass through intestines
    • Dysphagia = trouble swallowing certain food and drink textures
  • High blood sugars or type 2 diabetes
  • Heart disease
  • Other (i.e. liver disease, kidney disease, gout)
Question: What will an appointment with a dietitian be like?
  • The dietitian will meet with you and your family to ask some of the following questions:
    • Lifestyle and eating habits
    • Weight history and goals
    • Medical conditions affecting your diet (i.e. diabetes, heart disease)
    • The medications, vitamins and minerals you take
    • Your food likes, dislikes and cravings
    • Food allergies and intolerances (i.e. lactose intolerance)
    • Daily activities and schedules
    • Things that may affect what you can or cannot eat (i.e. your appetite, if you have constipation or diarrhea, bloating, changes in smell or taste, ability to buy groceries and more)
  • Together you will come up with goals to improve your eating and activity habits
  • The dietitian will help you choose foods to improve your health
  • Together you may come up with meal plans that will fit into your everyday life
  • The dietitian may use pictures and food models to help you visualize food and portion sizes. You may be given calendars, picture resources, or written goals to help keep you organized and achieve your goals.
  • The dietitian can help you make grocery lists and help plan healthy meals and snacks
  • You may be asked to fill in a food record for your next visit. Your family and friends can help you with this.
  • You will set goals each time you meet and she will help you reach these goals with encouragement, support and regular follow up appointments.

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Let’s work together to manage my weight

Question: Why have I gained weight?
  • Unhealthy lifestyle
    • Poor diet
    • Lack of physical activity
  • Medication
    • Increases appetite
    • Hard to know when you are full
    • Body retains water
    • Causes changes in the way your body uses food for energy
  • Limited access to healthy food choices
  • Difficulty following nutrition related recommendations
Question: What are some future health risks of being overweight and obese?
  • Cardiovascular disease (heart disease and stroke)
  • Type 2 diabetes
  • High blood pressure
  • Metabolic Syndrome
  • Certain cancers (for example: colorectal, colon, pancreas and more)
Question: How can I manage my weight?
  • Choose a healthy diet
  • Increase your physical activity
  • Attend individual or group programs to learn more about healthy lifestyles and for support
  • Attend regular follow-up visits with your dietitian

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Let’s eat healthy

Question: What are some healthy eating tips?
  1. Keep an eye on your drinks
    Have skim, 1% milk, or water instead of juice and caffeinated drinks, especially pop. Juice and pop are high in sugar, pop also has caffeine. Caffeine can make you agitated, anxious and cause tremors. Pop and “fizzy” drinks lower the calcium in your blood.
  2. Eat slowly
    If you eat too quickly you might finish your meal or snack before your stomach tells you it’s full. You will end up eating more than you need.
  3. Plan your meals
    Set aside time during the day to plan your meals. This will help you make healthier choices at the grocery store, eat out less, and save money.
  4. Stick to a routine
    Once you find a plan that works for you, stick to it! Use helpful reminders such as a calendar or notes on the fridge.
  5. Make healthier choices when you eat out
    • Look for words such as “grilled”, “roasted” or “baked”; “light”; and “low in sodium”. These foods have less fat, salt and calories.
    • Stay away from words such as “fried”, “creamy”, “crispy” and “buttered”. These foods have more fat, salt and calories.
    • Split a large meal with someone. Portion sizes at restaurants are usually larger. Ask for two separate plates.
    • Push your plate away when you start to feel full.
    • Ask for a leftover container.
Question: What to do if I have limited access to healthy food?
  • It is often hard to know what healthy foods to buy but it is even harder when you don’t have the money to buy them
  • There are many ways for you to enjoy the benefits of healthy eating on a budget. Let’s look at some of them…
    1. Plan Ahead
      Plan your meals and write your grocery lists before going to the store. This will stop you from making quick unhealthy choices. Only bring the money you wish to spend.
    2. Buy fewer prepared items
      These are usually more expensive and are higher in fat, salt and calories.
    3. Look for deals
      Buy “No Name” brands. Check store flyers and catalogues for coupons or sales. Keep track of prices of your favourite foods so you can shop for deals.
    4. Eat together as a family or group
      This will help save money and waste. As well, it promotes healthy eating and you can help encourage others.
    5. Make your own food
      Make your meals at home and pack your own lunch. Make more than you need and pop leftovers in the freezer in a freezer safe bag.
    6. Try meatless meals
      Try less expensive protein choices such as lentils, beans, tofu, low-fat peanut butter and eggs. Add these foods to salads, sandwiches, and stir-frys.

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Let’s make healthy eating manageable for adults with intellectual and developmental disabilities

If you have 22q11.2 DS, you may have been diagnosed with intellectual and developmental disabilities. Research has been done to show strengths and weaknesses in people with 22q11.2 DS. Many of these affect your eating habits and behaviours.

Here is a list of habits or behaviours that you may have and suggestions that may help you.

Habit or Behaviour Suggestions that may help you
Difficulty understanding portion sizes of food
  1. Compare the portion size to a real life object. For example, ½ cup is the same size as a tennis ball
  2. Practice measuring your own food and take a good look at them on your plate.

Your dietitian will use pictures and food models to help you understand serving and portion sizes.

Eating the same food all the time
  1. Come up with creative ideas to make food look more appetizing
  2. Try one new food a week
Difficulty planning menus
  1. Work with your dietitian to come up with a list of your favourite foods and meals. This will help you to plan your own meals
  2. Take a trip to the grocery store with your family/caregiver to learn about different healthy food choices
  3. Try to plan one new meal on your own each week
Unable to recognize when you are full Push your plate away after you eat one serving and wait a few minutes to see if you are still hungry
Poor hygiene
  1. Practice washing all fruits and vegetables before you eat.
  2. Practice washing your hands and the counter before and after you eat. Keep reminders for yourself in the kitchen.
  3. Make a duty wheel at home for tasks such as: washing the dishes, cleaning the floor, cleaning the counters
  4. Keep track of your tasks. Reward yourself

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Let’s get enough calcium

Question: What is calcium?
  • Calcium is a mineral that is found in your body, found in foods, added to foods, available as a supplement and found in some medications
  • Your body stores most of your calcium in your bones and teeth
  • The rest of your calcium is stored in your blood and muscles
Question: What does calcium do for me?
  • Keeps your bones and teeth strong and healthy
  • Helps your brain send messages through your body to work properly
  • Help your muscles move
Question: What is a normal blood calcium level for me?
Your doctor will take a blood test to see how much calcium you have stored in your body. If your doctor tells you that “your calcium levels are low”, this means you do not have enough calcium in your blood to circulate through your body.
Question: What can decrease the use of calcium in my body (low calcium level)?
  • Diet high in salt
  • Caffeine from food and drinks
  • Oxalic acid (oxalate); found in rhubarb, spinach, wheat bran, nuts, chocolate, chard and beet greens
  • Carbonated (“fizzy”) soft drinks
  • Aluminum and magnesium-containing antacids (i.e. Maalox HRF®)
  • Mineral oil and laxatives
  • Anticonvulsants (i.e. Valproic acid, Carbamazepine) aspirin, diuretics (i.e. Lasix)
Question: What can increase the use of calcium in my body?
  • Foods rich in Vitamin D such as various fish, cheese, butter, cream, eggs, liver, fortified breakfast cereals, soy beverages, yogurt and juice.
  • Medications: calcium salts, parathyroid hormone, thyroid hormone, vitamin D
Question: What are some common foods high in calcium?
  • Milk and alternatives
    • Milk
    • Yogurt
    • Cheese
    • Kefir
    • Cottage cheese
    • Ricotta cheese
    • Rice pudding
  • Fruit and Vegetables
    • Turnip greens
    • Kale
    • Orange juice, fortified with calcium
    • Broccoli, boiled
  • Meat and Alternatives
    • Sardines in oil, with bones
    • Salmon, canned, with bones
    • Anchovies, canned
    • Tofu, with calcium sulfate
    • Beans (white, navy, baked), canned
    • Chickpeas, boiled
    • Almonds, dry roasted, unblanched
    • Tahini/sesame seed butter

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Let’s have regular bowel movements

Question: How do you know if you’re constipated?
  • Stools may be hard
  • Bowel movements are difficult to pass
  • You may experience stomach pain and bloating
  • After a bowel movement, you may feel as though you have more to empty
  • Less than three bowel movements per week
Question: What are some causes of constipation?
  • Not enough fibre in your diet
  • Not drinking enough fluids
  • Limited physical activity
  • Side effects from medications (tricyclic antidepressants, antipsychotics), supplements (calcium and iron), antacids (especially tums)
Question: What are some helpful tips?
  • Follow a high fibre diet
  • Increase fluid intake
  • Add more physical activity
  • Set a routine and set aside time to go to the washroom
  • Limit high fat and highly processed foods
  • Remain calm and relaxed
  • Talk to your doctor about a bowel routine if nothing is working

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Let’s have more fibre

Question: Why do I have to eat more fibre?
  • Eating adequate amounts of fibre can
    • lower cholesterol (protects against heart disease and diabetes)
    • combat constipation / help regulate bowel movements
    • protect against certain types of cancers
    • provide energy for the body
  • Some high fibre foods include:
    • breads, cereals, grains: all bran, shredded wheat, oatmeal, brown rice, whole grain bread
    • fruits: pear, apple, strawberries, orange, banana, raisins
    • vegetables: split peas, lentils, beans, sweet potato, winter squash, potato, beans
  • To increase fibre in your diet, try:
    • Having fruits at breakfast time in a whole grain cereal, or a handful of bran in your usual cereal.
    • Choosing fruits as between-meal snacks.
    • Including bread and grain servings (over half should be whole grain).

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Let’s be physically active

Question: How can physical activity help me?
  • Maintain a healthy weight
  • Strengthens your heart and lungs
  • Improves your energy and confidence
  • Reduces your stress levels
Question: What type of activities can I do?

Before starting any exercise programs please talk to your doctor to make sure you are safe to start…


  • Brisk walking
  • Bowling
  • Bike riding
  • Gardening/housework
  • Swimming
  • Dancing


  • Jogging
  • Aerobics
  • Sports (hockey, basketball, tennis)
  • Fast swimming
  • Fast dancing
Question: How often should I do these activities?
  • 150 minutes each week (2 ½ hours) of moderate- to vigorous- intensity aerobic physical activity, in 10 minute or more sessions
  • You can break this down into 20–25 minutes of physical activity every day
  • Start off slowly and increase gradually
  • Try 10 minutes a day to get you started
  • Try muscle and bone strengthening activities 2 times/week

The Peter Munk Cardiac Centre has launched a website, http://hcmfitness.ca/. It is an online exercise program that blends the best in cardiac medicine and the latest fitness practices. It was specifically designed for patients with an enlarged cardiac muscle (hypertrophic cardiomyopathy (HCM)) patients, but is suitable for anyone hoping to improve his or her fitness. Please check with your doctor to see if this program is suitable for you.

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Let’s look at more resources

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