Helping Tweens and Teens Adjust to CSID

How Can I Help My Tween or Teen Deal with Not Being Able to Eat Sugar?

Here is some advice to help your increasingly independent child do well with Sucrose Intolerance caused by CSID.

Helping Tweens and Teens Adjust to CSID

A child’s shift from elementary to middle school or high school represents a major change in routine, a less-structured atmosphere, and increased peer pressure.

And at this age, they’ll likely have a shift in behavior. Tweens and teens with Sucrose Intolerance caused by Congenital Sucrase-Isomaltase Deficiency (CSID), informally referred to as “Sugar Intolerance,” may go from being compliant about the rules of eating to rebellious, because this is a time when being different is difficult.

Suddenly, the special diet they need to follow becomes a social liability, drawing unwanted attention when they eat with friends. Embarrassing symptoms like chronic diarrhea and gassy farts, coupled with frequent bathroom breaks, may cause tweens and teens to become even more self-conscious and anxious.

If they are not sticking to their low-sugar diet to blend in, these symptoms will be worse and actually undermine their fitting in.

How to Support Without Smothering

“When kids start to strive for more independence and autonomy during their teenage years and spend more time with friends outside of school, it may become harder for them to deal with their CSID,” says Bradley Jerson, PhD, a pediatric psychologist in digestive diseases, hepatology, and nutrition at Connecticut Children’s Medical Center in Hartford, CT.

“Few adolescents feel excited about going out to a restaurant with their friends and declaring their medical restrictions.”

In some cases, the stress tweens and teens feel can make their CSID symptoms worse.

“During the teenage years, when kids are trying to go out and be just like their friends, they may become more symptomatic,” says Raza A. Patel, MD, MPH, pediatric gastroenterologist in Salt Lake City, Utah.

“This is when the focus needs to switch from education of the family to education of the child.”

If your child has been living with Sugar Intolerance for a while, no doubt you’ve all gotten a lot of learning under your belts by the time adolescence hits. But teens now need support and education that focuses on peer pressure and being out on their own more and more.

Good News: They Get It Now

Older kids are more capable than younger children of understanding what’s going on with their bodies when they have CSID. This awareness is very helpful when they’re at the age where they don’t want mom and dad to oversee them every minute because they’re increasingly better able to manage their CSID, themselves.

“As kids get older they start understanding what’s happening to them,” says Parul Kharod, MS, RD, LDN, a clinical dietitian who leads food allergy support groups for WakeMed Health and Hospitals in Raleigh, North Carolina.

“They understand that if they don’t have certain foods they will feel better. Educating them at their level is really important.”

Tips for Parenting Tweens and Teens with CSID

Living with a tween or teen without any health issues can be challenging enough. But parents of adolescents with CSID need even more help to help their kids. These expert tips do just that.

Let them take the lead. Encourage adolescents to do research about their digestive system and CSID medical terms.

Schedule a patient-only appointment with your teen’s healthcare provider so the teen can talk directly with the doctor about the effects of CSID. Some gastroenterologists (specialists commonly called GI doctors) recommend individual consultations at this age to help educate teens face-to-face.

Get their input. Ask tweens or teens to work up menu ideas with you and involve them with the meal prep and grocery shopping.

If they get involved, they can feel more in control of their Sugar Intolerance and it gives you a chance to teach them how to make simple meals for themselves.

You’re encouraging their independence and helping them develop the necessary skills for future self-care.

Keep up their calories. Kids this age have huge appetites and need extra calories to sustain their rapid growth and development. Help teens get the nutrients they need by having a lot of sucrose-free foods in the house and snacks they can throw in their backpacks.

Maintaining a healthy weight and getting enough of the proper nutrition ensures they have the energy to get through their day.

“A lot of times kids skip meals because they’re frustrated with not being able to eat easily, so instead they don’t eat anything at all,” says Linzy Ziegelbaum, MS, RD, CDN, a registered dietitian from Long Island, NY.

“That’s why it’s important to continue working with a dietitian who can make sure they’re growing well and managing their symptoms.” Encourage kids to talk one-on-one with their dietitian as well as speaking directly with their doctor.

Help them educate others. As teens become more educated about CSID, they can educate their friends too.

Teach them how to advocate for themselves and explain their condition to others simply, clearly, and directly.

Once their friends understand what they’re going through, teens feel less isolated and less stressed if they’ve been trying to hide what they are dealing with.

Things they might want to say:

  • This is not a choice; I was born this way.
  • I’m not using this as an excuse to avoid you; I just don’t feel well sometimes.
  • It’s not in my head; it’s in my stomach.
  • I’m not being a picky eater. My body doesn’t digest, or process, sugar, and that makes me feel sick.
  • If I don’t follow my special low-sugar diet I can end up having a lot of stomach pain and have to run to the bathroom all the time — which isn’t great if we’re all out doing something.
  • Please give me space and privacy when I need it. I would do that for you.

Let them make mistakes. Tweens and teens may go through times of denial regarding their CSID and not follow their diet, which is normal.

Expect slip-ups from time to time and let the resulting symptoms be their teachers. It may be necessary for an adolescent to experience chronic diarrhea and bad, gassy stomach cramps to the point of missing an important event to understand that eating that sugar-filled food was not worth it.

“It’s a live-and-learn kind of thing,” says Paula Gallagher, MFN, RD, LD, a registered dietitian. “If kids eat something they shouldn’t and get a stomachache, that’s a reminder not to eat that food again.”

Don’t become the bad guy. When slip-ups occur, don’t punish. Make CSID the bad guy, not you or your child.

Give your adolescent space to feel angry or sad or cranky — and be empathetic.

“Sometimes one of the most powerful things you can say to your child is: ‘It makes sense that you feel this way. You didn’t ask for CSID and I agree, it really stinks that you can’t just go out with your friends and eat without having to think about all of this,’” says Jerson.

It shows your tween or teen that you get it. And this might encourage them to ask you for more help with all this.

Take them for talk therapy. You might consider taking teens to a mental health professional, like a social worker or psychologist, to talk to someone who has the skills to help them cope with their feelings about their condition. Or find a support group for kids they can relate to.

It can feel overwhelming not just in managing their diet but also in dealing with friends and family who may not be as understanding as they need to be because CSID is an invisible illness. If they were in a wheelchair, everyone could see the limitation; but a disease like Sugar Intolerance isn’t apparent to others.

“Children’s depression and anxiety can be very subtle,” says Jerson. “Increased hesitancy going to school, withdrawal from normal social or group activities, isolation within the home, anger and irritability, reduced concentration, change in eating habits, difficulty sleeping at night, or less daytime energy are some of the behaviors to look for.”

Assure them it will get easier. Tell them as often as you need to that managing life with CSID gets easier with time.

They’ll continue to adapt to their diet restrictions. And their symptoms become milder, too.

“We find that as patients get older, they can tolerate more and more,” says Dr. Joseph F. Fitzgerald, MD, pediatric gastroenterologist at Riley Hospital for Children in Indianapolis, Indiana.

With proper treatment and management, your tween and teen can live a happy and healthy life with CSID.

Sucrose Intolerance may be more common than you think.