Avoiding Vitamin B-12 Deficiencies When You Live with IBD

Dizziness, fainting, tingling, and brain fog could be symptoms of a B-12 deficiency in people with Crohn’s or ulcerative colitis. Here’s how to get the right help.

One common misconception about living with inflammatory bowel disease (IBD) is that Crohn’s and ulcerative colitis (UC) only affect your gut. The truth is, IBD can cause complications in systems across the body, including dry eye, joint pain, skin conditions, and more.

I’ve had Crohn’s disease for 13 years, and in that time, I’ve experienced a variety of extraintestinal manifestations and side effects of living with this disease, but arguably none were more debilitating than my experience with a vitamin B-12 deficiency.

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What is a vitamin B-12 deficiency?

Vitamin B-12, also known as cobalamin, is a nutrient found in animal-based foods like meat, poultry, fish, dairy, and eggs, as well as some fortified breakfast cereals.

Because B-12 is charged with keeping your nerve and blood cells healthy, people with vitamin B-12 deficiencies might feel weak and tired, and they may experience more serious symptoms like heart palpitations, loss of balance, numbness, confusion, and poor memory. Left untreated, vitamin B-12 deficiencies can cause permanent nerve damage.

What does a B-12 deficiency have to do with my IBD?

Many B-12 deficiencies happen in people whose bodies aren’t able to absorb nutrients correctly. And surgeries, flares, and the severe symptoms of IBD can make it harder, over time, for the body to absorb the vitamins it needs — like B-12. That may explain why up to a third of people with Crohn’s and 16% of people with UC experience a B-12 deficiency.

Vitamin B-12 is absorbed via the last section of the ileum, at the end of the small intestine — exactly where my Crohn’s is most active. People with Crohn’s in their ileum, or who have had their ileum surgically removed, should be especially vigilant of their B-12 levels.

My B-12 deficiency

In the spring of 2018, I was starting a new job in a new city — and also dealing with some (literally) dizzying new symptoms. I’d been living with Crohn’s for nearly a decade at that point, but these symptoms were new: dizziness, fainting, numbness in my extremities, trouble remembering certain words, telling the same story to the same person three times.

I was 26 years old and knew that none of this could be normal, so I spoke to my gastroenterologist, who referred me to both a cardiologist and a neurologist.

The cardiologist visit was a bust. The nurse did an echocardiogram, which came back normal, and the normal test results led the doctor to tell me, “Some young women just faint,” before sending me home. I was beyond frustrated, and honestly terrified to leave my house for fear of fainting in public.

When I went to the neurologist, I brought backup, in the form of my sister — an extremely logical, competent adult who could testify to the fact that I was experiencing confusion and repeating myself a lot. The doctor did a full workup and ordered an EEG. Almost as an afterthought, he added, “Has anyone tested your B-12 levels?”

That question from my neurologist cracked the code on all of it: the fainting, the memory loss, the tingling in my hands and feet. We tested my blood and there it was — my B-12 levels were dangerously low. If we hadn’t caught it when we did, it might have caused permanent nerve damage.

Because of my Crohn’s disease, my neurologist and gastroenterologist agreed that I should get supplementary B-12 doses via a shot in the arm, every 2 weeks until we could get my levels back up. Many people with B-12 deficiencies can use oral supplements, but for people like myself who have issues with absorption, shots can be a more effective way of getting the vitamin into the body.

Mere weeks after I started on B-12 shots, I was almost entirely back to normal. My gastroenterologist and I keep a close eye on my levels now, too, to prevent any future issues. I haven’t fainted since.

The takeaway

At the end of the day, some very scary symptoms were all the result of simple vitamin deficiency — and I learned some valuable lessons about advocating for myself in the doctor’s office.

It took many months, many tests, and three different doctors to diagnose my B-12 deficiency, which is surprising given that it’s not a particularly rare side effect of IBD. I wanted to tell my story so other people don’t have to go through the physical issues and months of uncertainty that I did, and so they might recognize the symptoms of a B-12 deficiency sooner than my doctors and I did.

People shouldn’t go on supplements without talking with their doctor first. But if you feel off — tired, weak, off-balance — don’t be afraid to keep asking your doctor for help.

If I had given up after the cardiologist brushed me off, I could have permanent nerve damage today for something that was an incredibly easy fix! Sometimes it takes multiple tries to be heard, but when it comes to your health, you are always your own best advocate.