Since mid-July, I haven’t had a salad with lettuce, fresh berries, grapes, you name it. It may seem extreme, but as someone living with Crohn’s disease, I’ve been fearful of contracting Cyclospora.

It’s been making headlines for weeks, but for those who may not know, Cyclospora is a foodborne parasite that causes an intestinal infection. Symptoms can include watery diarrhea, stomach cramps, bloating, fatigue, gas, nausea, and loss of appetite.

For someone with inflammatory bowel disease (IBD), the tricky part is that Cyclospora can mimic an IBD flare because the symptoms can be so similar. This week on Lights, Camera, Crohn’s, we’re taking a deep dive into the current Cyclospora concerns and hearing from three well-respected gastroenterologists about how our community should be navigating them.

What the Community Has to Say

I shared a poll on my Instagram (@natalieannhayden) asking my followers: “If you have IBD, are you still refraining from eating lettuce, berries, cilantro, jalapeños, etc. due to Cyclospora?”

Of the 421 people who responded, 47% said “yes,” 33% said “no,” and 20% said they “never stopped.”

Hearing this didn’t entirely surprise me. When I went out to dinner with my family over the weekend, I was shocked to see almost every table with people eating salad. It made me wonder: Am I being too extreme? Should I start eating my normal diet again?

I should note that I’ve continued cooking vegetables for my family, and we’ve still been eating apples, bananas, and melons. But I’ve personally been avoiding many of the foods that have made me nervous during this outbreak.

And judging from the responses I received, I’m certainly not alone.

Madison: “Ugh, I so badly want a Jimmy John’s sandwich after pregnancy, but I’m so worried to get Cyclospora and flare.”

Amanda: “I never stopped eating fresh produce because I get my food from the farmers market.”

Katie: “Never been so happy for my garden than this summer!”

Jaclyn: “I think I may start eating the Little Leaf brand lettuce again. They have publicly stated they are not affected and have shared their production process. It’s been months of not eating produce, so I’m reallllly missing it. Also, I need my fiber!!”

Phoebe: “I’m only buying from my local farmers market, and I took my family berry picking to be safe.”

Sarah: “Only pre-bagged shredded lettuce, but I’ll probably give up on refraining from eating it, as I’m not seeing as many patients with it now.”

Lyndsie: “They told me at chemo prep to avoid the diarrhea lettuce…but I did just have Chipotle last night (which uses cilantro and jalapeño) …so wish me luck!”

Rachel: “It’s killing me! I really want my fruit and lettuce back! However, I don’t want to risk anything like a flare or the potential to flare due to an illness. It is such a scare when you have been in remission for a while!”

Madison: “I have just started to eat lettuce and blueberries again since early June. It’s scary for sure! From what I’ve read, they identified the source of the lettuce issue, and I just had berries yesterday for the first time in almost two months. We’re washing them very well and hoping for the best.”

Laura: “Only eating fresh veggies from my garden and currently sticking to melon and bananas for fresh fruit mostly.”

From the Experts

I wanted to hear from gastroenterologists I know and trust. I asked them how they’re guiding their IBD patients through these uncertain waters and what advice they have for our community about whether we still need to be mindful of what we put on our plates.

“The outbreak of Cyclospora appears related to certain produce, for example, lettuce. While the distribution of these foods seems to be better understood, it’s still reasonable to take precautions in the preparation of certain foods,” says Dr. Miguel Regueiro, MD, Chief of the Digestive Disease Institute (DDI) at Cleveland Clinic. “General guidance for anyone with fresh produce is to wash vegetables and fruit thoroughly with water and practice hand washing with soap and water before and after handling. This is true for IBD patients and those without IBD.”

Dr. Matthew Ciorba, MD, Director of the Inflammatory Bowel Disease Center at Washington University School of Medicine, agrees, saying it isn’t necessary for most people—including most people with IBD—to give up entire categories of foods such as all lettuce, berries, jalapeños, avocados, cilantro, or parsley.

“What makes more sense is to pay attention to the specific products named in an active outbreak or recall, avoid those while the outbreak is ongoing, and relax once the implicated product is off the market. Cyclospora is also seasonal in the U.S. (roughly late spring through summer), so the highest-alert window is limited,” he explains.

One important nuance for our community: if you’re taking immune-suppressing medications, including biologics, immunomodulators, or steroids, it may be reasonable to take additional precautions during an active outbreak. That could mean leaning toward cooked or peeled produce rather than raw leafy greens and soft fruits. This is a personal decision and one worth discussing with your own GI doctor, since recommendations can depend on your medications and individual circumstances.

“Washing helps, but it is not a guarantee. Cyclospora oocysts are tiny and sticky, and they resist the chlorine-based rinses used commercially,” Dr. Ciorba says. “So, scrubbing your salad at home reduces the load but can’t be counted on to make contaminated produce ‘totally safe.’ Cooking is far more reliable than rinsing. So ‘wash thoroughly’ is good advice, just not a force field.”

How to Tell Cyclosporiasis Apart from an IBD Flare

Cyclosporiasis typically causes watery, sometimes explosive, frequent diarrhea, cramping, bloating, nausea, poor appetite, fatigue, weight loss, and sometimes low-grade fever, all symptoms that can be mistaken for an IBD flare.

“Two clues point toward Cyclospora rather than IBD: symptoms often start about a week after an exposure, and they tend to wax and wane, dragging on for weeks if untreated. The biggest red flag is diarrhea that doesn’t improve when you and your doctor step up your usual IBD treatment. That’s a signal to test for something else,” says Dr. Ciorba.

Cyclospora is not picked up by every routine stool test or GI panel. Your doctor may need to order a Cyclospora-specific test. Because the parasite can be shed intermittently, more than one stool sample collected a couple of days apart may improve the chances of detecting it.

“We are now doing this for our patients, and patients can ask their doctors if they plan to order the special stool study,” says Dr. Ciorba.

The practical takeaway: new or persistent diarrhea during outbreak season, especially if it isn’t responding to your usual flare plan, is a reason to talk with your doctor about Cyclospora testing rather than automatically assuming it’s your IBD.

Other Precautions and Warning Signs Worth Knowing

The good news is that when Cyclospora is identified, it is treatable. The standard treatment is an antibiotic called trimethoprim-sulfamethoxazole, with alternatives available for people with a sulfa allergy.

Dr. Uma Mahadevan, MD, Director of the Colitis and Crohn’s Disease Center at the University of California, San Francisco, says fortunately, California has not been hit as hard as some other states.

Dr. Mahadevan recommends:

• Avoiding recalled products, such as implicated iceberg lettuce.
• If you are significantly immunosuppressed, such as during a flare or while taking steroids plus a biologic, consider cooked vegetables over raw salads.
• Being particularly careful with raw salads at restaurants.
• Washing fruits and vegetables thoroughly under running water and scrubbing produce such as melons.

“For pregnant women, I would use the same cautions as listed above. I would not recommend overly restricting diet. It seems like there is a greater risk in the Great Lakes/Midwest area, so those patients should be more careful. It is a tough one as the tracking of the infections is not great,” Dr. Mahadevan says.

The Bottom Line

If you’re living with IBD, it’s completely understandable to feel uneasy when an intestinal infection like Cyclospora is making headlines. When you’ve worked hard to manage your disease or achieve remission, the last thing you want is an infection that could potentially trigger symptoms or leave you wondering whether you’re experiencing an infection or an IBD flare.

But the experts I spoke with agree on an important point: this doesn’t mean you need to eliminate fresh fruits and vegetables from your diet. Instead, stay informed about active outbreaks and recalls, practice careful food preparation and handwashing, and talk with your gastroenterologist if you develop persistent diarrhea, cramping, or other symptoms that could indicate either an infection or a flare.

For me, that may mean slowly becoming a little less fearful of the produce aisle. I’m not sure I’m ready to dive headfirst into a giant salad just yet, but knowing what the experts are recommending makes me feel much more comfortable making informed decisions rather than letting fear dictate what I eat.

As with so many things in life with IBD, knowledge is power and finding that balance between being cautious and still living your life matters, too.