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Obese Child with Autism Gaining Weight on Gluten/Casein-free Diet

“My 12-year-old daughter has Asperger syndrome and is obese. We started our whole family on a gluten-free, mostly casein-free diet about a year ago. Even though we’ve cut out breads and cut down a lot on sugar, she continues to gain weight. I can't understand it. I’ve lost 50 pounds, and her sister has lost weight as well. Other than exercise, which I can't force, I don't know what else to do. Any advice is appreciated.”

Editor’s note: The following information is not meant to diagnose or treat and should not take the place of personal consultation, as appropriate, with a qualified healthcare professional and/or behavioral therapist.

This week’s Food for Thought answer is by pediatrician Ihuoma Eneli, medical director of the Center for Healthy Weight and Nutrition at Nationwide Children’s Hospital in Columbus, Ohio, and the center’s dietician Alexis Tindall. Nationwide Children’s Hospital is one of 14 sites in the Autism Speaks Autism Treatment Network (ATN).

Thank you for reaching out with this question. Helping a child reach and maintain healthy weight can be challenging. Almost always, it’s a long-term endeavor.

Complicating matters, it can be difficult to figure out why one person continues to gain weight while others are maintaining or losing weight on the same diet. It’s important to remember that each of us responds to dietary changes differently.

In your family’s situation, it’s also important to remember that the gluten-free/casein-free diet isn’t intended as a weight-loss diet. The foods permissible on this diet aren’t necessarily any less caloric than other foods.

Here are a few suggestions for you to try in addressing your daughter’s obesity and continued weight gain.

First and foremost, we recommend that your daughter’s physician evaluates her for underlying medical issues that might be causing her weight gain. We know, for example, that certain behavioral medications can have the side effect of significant weight gain. This is an important issue to discuss with her doctor. Other, less-common medical issues related to weight gain include low thyroid function and Cushing’s syndrome.

For more information on this topic, also see
How Can We Stem Weight Gain Related to Behavioral Meds for Autism?

Assess your daughter’s energy balance
Next, we suggest that you consult with your daughter’s doctor or a dietician to gain a better understanding of her unique “energy balance.” By this, we mean calorie intake versus calorie burning.

It’s always helpful to look at how many calories we are putting into our bodies daily. It’s also helpful to get a general idea of the calories we burn through activity and just “being alive.” The latter refers to metabolism, and it’s different for each of us. 

In assessing your daughter’s energy balance, you’ll want to account for all the places and times she consumes food and caloric drinks. You likewise want to review when and how she expends calories through physical activity. Having such a holistic picture of her lifestyle will help guide any plan to help her attain and maintain a healthy weight.

As part of this exploration, you want to get a good sense of the calories in the foods she likes to eat – taking portion sizes into account. There are a variety of apps and websites that can help. One we like is at www.calorieking.com.

Getting an overall sense of your daughter’s food intake can also give you a rough idea of how much activity she needs to burn those calories. Again, keep in mind that we all differ in metabolism, which influences the rate we burn calories. For a general idea of calories burned for different activities, here’s a popular website app: http://www.healthstatus.com/calculate/cbc.

We’re not advocating an obsession with calorie counting. Rather we encourage you to use these tools to increase awareness of overall calorie intake and expenditure in ways that can guide choices and inform your discussions with your daughter’s healthcare team.

Expanding food choices
Increasing food variety is challenging for many people on the autism spectrum. This is particularly true for those who have sensory issues with certain food textures and flavors.

At the same time, we know it’s important to encourage variety. To maintain health – and a healthy weight – we all need a balanced diet that includes lean protein, fruits and vegetables, and high-fiber foods.

This can include gluten-free whole grains. Examples include brown rice, quinoa, corn and oats. These grains can be combined with beans and legumes to provide a complete-protein meal.

For more advice on expanding food choices, also see
Parent Seeks Advice: Child with Autism Eats Only Candy & Chips.”

Control portions
Remember to pay attention to portion sizes. In our experience, it often helps to downsize the plates, cups and bowls your family uses.

However, we recommend against restricting your daughter’s diet without first asking her physician or dietitian to help you ensure that it’s meeting her nutritional needs. Sometimes this requires supplementation.

Pay attention to “how” food is eaten
We all have our own approaches to food. With this in mind, we encourage you to look beyond “what” your daughter eats to “how” she eats. Does she snack all day? Skip breakfast and then overeat late in the evening?

We know that nonstop snacking interferes with natural appetite and the important experience of feeling true hunger and fullness. 

We encourage you to offer your daughter regularly scheduled meals and snacks. Further, we recommend spacing these meals and snacks 3 to 4 hours apart.

We also encourage family mealtimes and restricting food consumption to designated areas such as the kitchen and dining room. This means no eating in front of a screen or in the bedroom! This one simple step can go a long way to cutting down on mindless and unnecessary snacking.

We also suggest involving your daughter – and the whole family – in planning, preparing and cleaning up after meals. In our experience, kids are more likely to try new foods, eat a more well-balanced diet and appreciate the value of family meals when they’re involved. What’s more, kids love getting creative and having some responsibility and control.

Increasing energy expenditure
If we’re reading between the lines correctly, it sounds like your daughter needs some additional physical activity. We realize that this can be difficult.

We suggest that you start by expressing appreciation for whatever physical activity she’s currently doing. Does she walk to school? To a friend’s? Even if it’s just half a block, let her know that it’s a great start. Help her understand that every bit of physical activity improves her health.

At the same time, we suggest that you look for fun ways to incorporate additional physical activity into her – and your – routines. For example, does she like going to the mall? Mall walking might be a fun physical activity for the two of you to share!

It’s fine to offer rewards for physical activity. But avoid using food as the reward. That sends the wrong message – especially since “reward” foods are seldom the healthiest options!

Therapeutic recreation specialists have expertise in working with children and adults who have developmental disabilities such as autism. They know how to build confidence and social skills around physical activity while making it fun. Consider asking your daughter’s physician or dietician for a referral.

We hope these suggestions are helpful. Please let us know how you and your daughter are doing by emailing us again at GotQuestions@autismspeaks.org.

For related tips and perspective, also see these “Food for Thought” expert-advice posts:

Autism and Obesity: When Exercise and Healthy Diet Aren’t Enough

Parent of Teen with Autism Seeks Help with Narrowing Food Choices

Autism and the Gluten/Casein-Free Diet: When Can We Stop?

Our Son Has Asperger's and Eats Constantly – Help!

Behavioral Medication Side Effects

Encouraging Picky Eaters with Autism to Try New Foods

* Learn more about the Autism Speaks Autism Treatment Network here.
* Find the ATN center nearest you 
here.
* Explore our archive of ATN expert-advice blogs and news stories 
here.

The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.