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Finding Relief from Fructose Intolerance: Annalise’s Story

Finding Relief from Fructose Intolerance: Annalise’s Story

Finding Relief from Fructose Intolerance: Annalise’s Story

Annalise (Anna) was experiencing severe back pain, stomach pain, frequent illness and vomiting. But doctors couldn’t determine the source of her symptoms. Finally, one provider recommended the Integrative Health Program at CHOP. Armed with answers and a new plan, Anna’s mother noticed an improvement in Anna’s symptoms in just two weeks.  

Searching for answers

Annalise Arabia

Anna was a happy child, enjoying things like barbecues with her family and friends. But her mother, Robin, recalls how often she would become sick after leaving these gatherings, either in the car or at home. Anna’s symptoms made attending school difficult too. Sitting for extended periods of time increased her pain so she had to stand. And she had trouble focusing.  

In the fall of 2020, Anna's pediatrician thought what she was experiencing might be muscular-skeletal. He recommended an X-ray, and more testing followed. Anna had three MRIs and tons of blood work, and she was seen in the neurology, nephrology and allergy departments at a local hospital. Thinking there could be a food allergy causing extreme constipation, allergists gave Anna a mixture of laxatives and apple juice to clean out her system. She went through this process five or six times and Robin felt they were no closer to a diagnosis. That was when an allergist’s referral to CHOP changed everything.  

Finding sweet relief at CHOP

Annalise Arabia 2

Anna’s journey at CHOP began in the Integrative Food Reactions Clinic where the family was tasked with keeping a food diary to track all Anna’s foods, recording what she ate and the timing of any symptoms. She was also given breath tests for sucrose, lactose and fructose. Results from the fructose test were concerning and they triggered a red face and severe coughing for Anna -- an unusual reaction. 

Maria R. Mascarenhas, MBBS, a gastroenterologist and integrative physician in the Division of Gastroenterology, Hepatology and Nutrition (GI) reviewed Anna’s results, along with Amy Dean, MPH, RD, LDN, a clinical dietitian. Anna was diagnosed with fructose intolerance. Robin says she cried with relief, “They thought she ate a healthy diet for a kid who got sick that often. They were finally asking questions about things I had been trying to describe all along. They took me seriously.”  

Off-the-charts improvement

Annalise Arabia 3

After being diagnosed with fructose intolerance in spring 2023, Anna’s condition rapidly improved. Dr. Mascarenhas worked with her for several months, until she had very low abdominal pain. Dean helped Robin change Anna’s diet to a lower-fructose diet. It has been a full year since Anna’s dietary changes, and not only has she kept food down and experienced less pain, she has also had a growth spurt! Now in 4th grade, she can sit comfortably in class and focus easily on her work. Her reading level has even increased by two grades.   

Going forward, Anna will only come to CHOP for appointments as needed. Anna’s care team has talked about potentially reintroducing foods she is intolerant to in the future. She may eventually see changes to her food tolerance levels as she gets older. The best part for Robin is that she knows she can still access the MyCHOP portal and talk to Anna’s team at CHOP when she has questions. 

The CHOP difference 

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A key difference Robin remembers about their visits to CHOP versus other providers Anna had seen was that both Dr. Mascarenhas and Dean were in the room with Robin and Anna at the same time. She noticed they could communicate right away about the best method of treatment for Anna and recommend immediate actions the family could take. This sense of urgency was meaningful for Robin after over two years of trying to find a diagnosis for what Anna was experiencing.

Since then, Robin has referred several other moms and their children who are experiencing the same issues that her family had to the Integrative Health Program at CHOP. At gatherings with family and friends, Robin asking food questions for Anna’s health will lead to other parents sharing their concerns about their children and food -- that they’ve felt stuck and lost about what to do. Robin tells them, “There are other solutions. You and your child don’t have to live your life feeling constantly uncomfortable. There might be something going on that is a little outside of the box and the people at CHOP will listen to you and help you.”

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