Gram Research analysis shows that people with spina bifida have vitamin B12 deficiency about 7.7 times more often than the general population. A 2026 cross-sectional study of 317 spina bifida patients found that 9.1% had low B12 levels, compared to only 1.84% in the general population. Surprisingly, 76% of those with low B12 had never had bowel reconstruction surgery, suggesting that routine B12 screening should be offered to all spina bifida patients, not just those who have had surgery.
A new study found that people with spina bifida have much lower levels of vitamin B12 than the general population, even if they haven’t had surgery to reconstruct their urinary system. Researchers looked at 317 patients over nearly 20 years and discovered that about 9% had dangerously low B12 levels, compared to only about 2% of the general population. This is important because vitamin B12 helps your body make healthy blood cells and keep your nerves working properly. The findings suggest that all people with spina bifida should get routine B12 screening, not just those who have had certain surgical procedures.
Key Statistics
A 2026 cross-sectional study of 317 patients with spina bifida found that 9.1% had low vitamin B12 levels, compared to 1.84% in the general population, making spina bifida patients 7.7 times more likely to have B12 deficiency.
Among 29 spina bifida patients with low B12 in the study, 22 (76%) had never undergone bowel reconstruction surgery, indicating that current screening practices focused only on post-surgery patients would miss three-quarters of affected individuals.
Adults with spina bifida had significantly higher rates of low B12 than children, with 13.3% of adults versus 5.0% of children showing deficiency in the 317-patient study.
Using a stricter B12 threshold of less than 150 pg/mL, spina bifida patients were 16.14 times more likely to have very low levels compared to the general population.
The Quick Take
- What they studied: How common is vitamin B12 deficiency in people with spina bifida, and does it only happen after certain surgeries?
- Who participated: 317 patients with spina bifida (159 children and 158 adults) seen at one medical center between 2004 and 2023. The group included people who had never had bowel surgery and those who had surgery within the past 5 years.
- Key finding: About 9 out of every 100 people with spina bifida had low B12 levels, which is nearly 8 times higher than the general population rate of about 2 out of 100. Surprisingly, three-quarters of the people with low B12 had never had bowel reconstruction surgery.
- What it means for you: If you or a family member has spina bifida, regular B12 blood tests should be part of routine care, regardless of whether surgery has been done. Low B12 can cause tiredness, weakness, and nerve problems, so catching it early matters. Talk to your doctor about adding B12 screening to your regular checkups.
The Research Details
Researchers looked back at medical records from 317 patients with spina bifida who had blood tests measuring vitamin B12 levels between November 2004 and August 2023. They included patients who either never had bowel reconstruction surgery or had it within the past 5 years. They defined low B12 as less than 200 pg/mL (a standard medical measurement). The researchers then compared their findings to national health data from the general U.S. population to see if people with spina bifida really do have more B12 problems than average.
This type of study is called a cross-sectional study, which means researchers took a snapshot of a group at one point in time rather than following people over many years. The researchers looked at whether factors like age, sex, race, or neighborhood wealth affected B12 levels. They also checked whether having bowel surgery made a difference in B12 deficiency rates.
The study is valuable because it answers a practical question: should doctors screen everyone with spina bifida for B12 problems, or only certain patients? Previous research focused mainly on people who had bowel surgery, so this study fills an important gap by looking at the whole spina bifida population.
This research approach matters because it looks at real patients in a real medical setting over a long time period. By comparing the spina bifida group to national health data, the researchers could show that B12 deficiency is genuinely more common in spina bifida, not just a coincidence. The study also tested whether the current practice of screening only post-surgery patients catches everyone who needs help, and the answer was no. This type of evidence helps doctors decide which patients need screening and when.
The study has several strengths: it included a large number of patients (317), tracked them over nearly 20 years, and compared results to national health data. However, the study only looked at patients from one medical center, so results might differ in other regions or populations. The researchers couldn’t explain why B12 is low in people without bowel surgery, which is an important limitation. The study also couldn’t determine whether low B12 actually caused health problems in these patients, only that it was present.
What the Results Show
Of the 317 patients studied, 29 (about 9%) had low vitamin B12 levels. Adults were more likely to have low B12 than children: 13.3% of adults had low levels compared to only 5% of children. When the researchers compared these rates to the general U.S. population, they found that people with spina bifida were about 7.7 times more likely to have low B12 than expected for their age.
The most surprising finding was that 22 of the 29 patients with low B12 (76%) had never had bowel reconstruction surgery. This means that if doctors only screened patients after surgery, they would miss three-quarters of the people who actually needed treatment. Even among the 7 patients who had surgery within 5 years, the rate of low B12 was even higher than in those without surgery.
When researchers looked at other factors like sex, race, ethnicity, or neighborhood wealth, none of these predicted who would have low B12. This suggests that low B12 in spina bifida is a widespread issue, not limited to specific groups. The researchers also checked blood counts and red blood cell size, which are usually abnormal in B12 deficiency, but these were normal in most patients with low B12. This means the deficiency might be caught early before it causes visible blood changes.
When researchers used an even stricter definition of low B12 (less than 150 pg/mL instead of 200), the difference between spina bifida patients and the general population became even more dramatic, with spina bifida patients being 16 times more likely to have very low levels. The fact that bowel reconstruction surgery was not associated with low B12 after adjusting for age and sex suggests that something about spina bifida itself, rather than the surgery, may cause B12 problems. This could involve how the digestive system works in spina bifida or how the body absorbs nutrients.
Previous research has documented that bowel reconstruction surgery can cause B12 deficiency because the surgery removes or rearranges parts of the small intestine where B12 is absorbed. This study confirms that B12 deficiency does happen after surgery, but it shows that the problem is much bigger than previously recognized. The findings suggest that doctors should expand their thinking about B12 screening in spina bifida beyond just post-surgery patients. This is a significant shift from current practice, which typically focuses screening efforts on patients who have had bowel surgery.
The study only included patients from one medical center, so results might not apply to all spina bifida populations. The researchers couldn’t explain why people without bowel surgery have low B12, which is a major gap in understanding. The study didn’t track whether patients with low B12 actually experienced symptoms or health problems, only that the deficiency was present. The comparison to national health data came from 1999-2002, which is older data, though it’s the most recent available. The study also couldn’t determine whether low B12 was caused by poor absorption, inadequate diet, or other factors specific to spina bifida.
The Bottom Line
All people with spina bifida should have their vitamin B12 levels checked regularly as part of routine medical care, regardless of whether they have had bowel surgery. This recommendation is supported by strong evidence from this study. If B12 levels are low, treatment with B12 supplements (taken by mouth or injection) can restore levels and prevent complications like nerve damage and anemia. Adults with spina bifida should be screened more frequently than children, since they have higher rates of deficiency. The specific screening interval should be determined by your doctor based on your individual situation.
This research is most relevant to people with spina bifida of all ages, their families, and their healthcare providers. Doctors who care for spina bifida patients should consider changing their screening practices to include all patients, not just those who have had bowel surgery. This is especially important for adults with spina bifida, who have higher deficiency rates. People with spina bifida who experience fatigue, weakness, tingling in the hands or feet, or difficulty concentrating should ask their doctor about B12 testing. This research is less directly relevant to people without spina bifida, though it may have implications for other conditions affecting the digestive system.
If you have low B12 and start treatment, you may begin feeling more energetic within a few weeks. Nerve-related symptoms like tingling or weakness may take several weeks to months to improve. Regular B12 testing should happen at least annually, or more frequently if your doctor recommends it. The goal is to catch low B12 before it causes symptoms or complications, so consistent screening is more important than waiting to see if you feel sick.
Frequently Asked Questions
Do all people with spina bifida need B12 screening?
Research shows that routine B12 screening should be considered for all spina bifida patients, not just those who have had bowel surgery. A 2026 study found that 9.1% of spina bifida patients had low B12, with 76% having never had surgery, suggesting widespread screening is needed.
What are the symptoms of low B12 in spina bifida?
Low B12 can cause fatigue, weakness, tingling in hands or feet, difficulty concentrating, and pale skin. However, the study found that many spina bifida patients with low B12 showed no obvious blood cell changes, meaning symptoms might be subtle or absent initially.
How often should someone with spina bifida get B12 testing?
While the study doesn’t specify exact intervals, annual B12 testing is reasonable for all spina bifida patients, with more frequent testing for adults since they have higher deficiency rates (13.3% versus 5% in children). Your doctor can recommend the best schedule for your situation.
Can B12 deficiency be treated in spina bifida?
Yes, B12 deficiency is treatable with oral supplements or injections. Treatment can restore energy levels within weeks and prevent nerve damage. Your doctor can determine the best treatment approach based on your B12 levels and absorption ability.
Why do people with spina bifida have low B12 if they haven’t had surgery?
The study didn’t identify the exact cause, but it may involve how the digestive system works in spina bifida or how the body absorbs nutrients. This is an important area for future research to understand the underlying mechanism.
Want to Apply This Research?
- Set a reminder to log your B12 test results and any symptoms like fatigue, weakness, or tingling sensations every 3 months. Track whether you’re taking B12 supplements as prescribed and note any changes in energy levels or symptoms.
- If you have spina bifida, use the app to schedule your annual B12 screening appointment and set reminders to discuss B12 status with your doctor at each visit. If you’re prescribed B12 supplements, log your doses and any side effects or improvements you notice.
- Create a long-term tracking dashboard that shows your B12 test results over time, medication adherence, and symptom patterns. Share this data with your healthcare provider to help guide treatment decisions and catch any downward trends early.
This article summarizes research findings and is not a substitute for professional medical advice. If you or a family member has spina bifida, consult with your healthcare provider about whether B12 screening is appropriate and what treatment options may be right for you. Do not start, stop, or change any B12 treatment without discussing it with your doctor first. This research was conducted at a single medical center and may not apply to all populations. Always work with your healthcare team to make decisions about your care.
This research translation is published by Gram Research, the science division of Gram, an AI-powered nutrition tracking app.