CHOP research highlights why early monitoring matters
Children and young adults living with inflammatory bowel disease (IBD) face a health risk many families don’t expect: weaker bones during critical growth years.
Researchers at Children’s Hospital of Philadelphia (CHOP) recently published findings showing that a large percentage of children and young adults with IBD have low bone density. Low bone density increases the risk of fractures now and may lead to long-term bone health problems later in life. The study was published in the Journal of Pediatric Gastroenterology and Nutrition.
Ronen Stein, MD, a pediatric gastroenterologist with CHOP’s Center for Pediatric Inflammatory Bowel Disease and a study author, says the findings highlight the need for early awareness and monitoring. The study findings also support CHOP’s current practice of providing bone density screening for all youth with IBD soon after their diagnosis and repeating screenings as needed.
“Children who have IBD are at a particularly high risk of having more brittle bones,” Dr. Stein says.
Big picture: What the study found
The single-center, retrospective study reviewed data from more than 600 patients with IBD, ages 3 to 22. All patients underwent a dual-energy X-ray absorptiometry (DXA) scan — the gold standard for measuring bone density — within one year of their IBD diagnosis between 2006 and 2019.
Researchers analyzed demographic, genetic, clinical and lab data to identify patterns linked to low bone density across all forms of IBD, including Crohn’s disease, ulcerative colitis and IBD unclassified.
Based on the findings, Dr. Stein says several factors were strongly associated with lower bone density and increased risk to long-term bone health.
Key risk factors included:
- Disease duration and severity. The longer IBD remains active — and the more severe the symptoms — the greater the risk to bone health. Childhood and adolescence are critical times for building bone and muscle. When IBD interferes with nutrient absorption, it can affect growth and development.
- Steroid use. Steroids are effective for reducing inflammation, but long-term use can slow growth, delay puberty and negatively affect bone development.
- Low body mass index (BMI). Children who are underweight or have very low BMI — which is common in IBD — are at higher risk for low bone mineral density.
- Vitamin deficiencies. Difficulty eating or absorbing nutrients such as calcium and vitamin D can lead to bone loss and delayed growth.
- Family history of bone disease. A family history of frequent fractures or brittle bones increases a child’s risk.
- Genetic factors. Certain genes and genetic conditions can affect bone health, particularly during puberty or periods of increased inflammation.
Why kids with IBD are at risk
Any one of these factors can affect bone health, but children with IBD often experience several at the same time — increasing their overall risk.
Many children with IBD are less physically active than their peers. Painful, uncomfortable or embarrassing symptoms may keep them from sports or other activities that help build strong bones. Spending more time indoors can also contribute to vitamin deficiencies, including:
- Vitamin D deficiency from limited sun exposure
- Calcium deficiency due to dairy intolerance
- Poor nutrient absorption related to intestinal inflammation
“Chronic inflammation can suppress the body’s natural ability to build bone strength,” Dr. Stein says. “We also know that certain medications — particularly steroids — can lead to sub‑optimal bone health.”
How IBD treatment has changed
Over the past decade, treatment for IBD has evolved. In the past, corticosteroids were often used for both short‑term and long‑term disease control. Today, the goal is to limit steroid use whenever possible.
“We still use steroids when someone needs to get better quickly,” Dr. Stein says. “But maintenance treatment now focuses on using other medications that don’t interfere with bone growth and on improving nutrition.”
Newer biologic medications, including tumor necrosis factor (TNF-alpha) inhibitors such as infliximab (Remicade®) and adalimumab (Humira®), have been shown to reduce inflammation and may also have a positive effect on bone strength.
As CHOP has shifted toward biologic therapies and away from prolonged steroid use, clinicians have seen improvements in both bowel health and bone health — especially important during childhood and adolescence.
“We want kids to be active, eat well, get the nutrients they need and live their lives,” Dr. Stein says.
Supporting bone health in children with IBD
Families can help protect their child’s bone health by encouraging them to:
- Stay physically active, including weight‑bearing activities like running, jumping and climbing (aim for at least 30 minutes a day)
- Eat a balanced, nutrient-rich diet with adequate calcium and vitamin D
- Spend time outdoors for natural vitamin D exposure
- Follow treatment recommendations from their care team
- Attend regular checkups and screenings to assess disease control
- Undergo DXA scans when recommended
- Share symptoms, concerns and challenges with their clinical team
DXA scans are available onsite at CHOP’s Nutrition and Growth Lab in the Seashore House at CHOP’s Main Building in Philadelphia.
Care at CHOP
The Center for Pediatric Inflammatory Bowel Disease at CHOP provides comprehensive care from diagnosis through long-term disease management. Our team offers advanced diagnostic testing, evidence-based treatments and ongoing support — while also advancing care through research that directly benefits patients and families.
Learn more about the study in the Journal of Pediatric Gastroenterology and Nutrition.
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CHOP research highlights why early monitoring matters
Children and young adults living with inflammatory bowel disease (IBD) face a health risk many families don’t expect: weaker bones during critical growth years.
Researchers at Children’s Hospital of Philadelphia (CHOP) recently published findings showing that a large percentage of children and young adults with IBD have low bone density. Low bone density increases the risk of fractures now and may lead to long-term bone health problems later in life. The study was published in the Journal of Pediatric Gastroenterology and Nutrition.
Ronen Stein, MD, a pediatric gastroenterologist with CHOP’s Center for Pediatric Inflammatory Bowel Disease and a study author, says the findings highlight the need for early awareness and monitoring. The study findings also support CHOP’s current practice of providing bone density screening for all youth with IBD soon after their diagnosis and repeating screenings as needed.
“Children who have IBD are at a particularly high risk of having more brittle bones,” Dr. Stein says.
Big picture: What the study found
The single-center, retrospective study reviewed data from more than 600 patients with IBD, ages 3 to 22. All patients underwent a dual-energy X-ray absorptiometry (DXA) scan — the gold standard for measuring bone density — within one year of their IBD diagnosis between 2006 and 2019.
Researchers analyzed demographic, genetic, clinical and lab data to identify patterns linked to low bone density across all forms of IBD, including Crohn’s disease, ulcerative colitis and IBD unclassified.
Based on the findings, Dr. Stein says several factors were strongly associated with lower bone density and increased risk to long-term bone health.
Key risk factors included:
- Disease duration and severity. The longer IBD remains active — and the more severe the symptoms — the greater the risk to bone health. Childhood and adolescence are critical times for building bone and muscle. When IBD interferes with nutrient absorption, it can affect growth and development.
- Steroid use. Steroids are effective for reducing inflammation, but long-term use can slow growth, delay puberty and negatively affect bone development.
- Low body mass index (BMI). Children who are underweight or have very low BMI — which is common in IBD — are at higher risk for low bone mineral density.
- Vitamin deficiencies. Difficulty eating or absorbing nutrients such as calcium and vitamin D can lead to bone loss and delayed growth.
- Family history of bone disease. A family history of frequent fractures or brittle bones increases a child’s risk.
- Genetic factors. Certain genes and genetic conditions can affect bone health, particularly during puberty or periods of increased inflammation.
Why kids with IBD are at risk
Any one of these factors can affect bone health, but children with IBD often experience several at the same time — increasing their overall risk.
Many children with IBD are less physically active than their peers. Painful, uncomfortable or embarrassing symptoms may keep them from sports or other activities that help build strong bones. Spending more time indoors can also contribute to vitamin deficiencies, including:
- Vitamin D deficiency from limited sun exposure
- Calcium deficiency due to dairy intolerance
- Poor nutrient absorption related to intestinal inflammation
“Chronic inflammation can suppress the body’s natural ability to build bone strength,” Dr. Stein says. “We also know that certain medications — particularly steroids — can lead to sub‑optimal bone health.”
How IBD treatment has changed
Over the past decade, treatment for IBD has evolved. In the past, corticosteroids were often used for both short‑term and long‑term disease control. Today, the goal is to limit steroid use whenever possible.
“We still use steroids when someone needs to get better quickly,” Dr. Stein says. “But maintenance treatment now focuses on using other medications that don’t interfere with bone growth and on improving nutrition.”
Newer biologic medications, including tumor necrosis factor (TNF-alpha) inhibitors such as infliximab (Remicade®) and adalimumab (Humira®), have been shown to reduce inflammation and may also have a positive effect on bone strength.
As CHOP has shifted toward biologic therapies and away from prolonged steroid use, clinicians have seen improvements in both bowel health and bone health — especially important during childhood and adolescence.
“We want kids to be active, eat well, get the nutrients they need and live their lives,” Dr. Stein says.
Supporting bone health in children with IBD
Families can help protect their child’s bone health by encouraging them to:
- Stay physically active, including weight‑bearing activities like running, jumping and climbing (aim for at least 30 minutes a day)
- Eat a balanced, nutrient-rich diet with adequate calcium and vitamin D
- Spend time outdoors for natural vitamin D exposure
- Follow treatment recommendations from their care team
- Attend regular checkups and screenings to assess disease control
- Undergo DXA scans when recommended
- Share symptoms, concerns and challenges with their clinical team
DXA scans are available onsite at CHOP’s Nutrition and Growth Lab in the Seashore House at CHOP’s Main Building in Philadelphia.
Care at CHOP
The Center for Pediatric Inflammatory Bowel Disease at CHOP provides comprehensive care from diagnosis through long-term disease management. Our team offers advanced diagnostic testing, evidence-based treatments and ongoing support — while also advancing care through research that directly benefits patients and families.
Learn more about the study in the Journal of Pediatric Gastroenterology and Nutrition.
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CHOP Researchers Find Children with IBD Have Hidden Risk to Bone Health
A CHOP study found that children and young adults living with inflammatory bowel disease (IBD may face a hidden threat – weakened bones. Researchers showed that a significant number of young patients with IBD have low bone mineral density (BMD), putting them at a higher risk for fractures and long-term bone complications.
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