How to Choose Seafood and Avoid the Rare Ciguatera Poisoning I Contracted

In this toxic fish tale episode, I share my personal experience with ciguatera poisoning - a rare form of food poisoning that landed me on the bathroom floor of a Bahamas resort and changed how I think about seafood forever. While this isn't our typical "age with grace and strength" content, it's an important story about advocacy, awareness, and making informed choices about the fish we eat.

What Happened

During a 2019 family vacation in the Bahamas, I ordered the "fish of the day" at a resort steakhouse while my family had steak. That night, I became violently ill with what would later be diagnosed as ciguatera poisoning - a rare condition listed on rarediseases.org.

Key Points Discussed:

• What is Ciguatera Poisoning?
• High-Risk Fish Species
• High-Risk Regions
• My Symptoms 
• Recovery Protocol 

Links Mentioned:

Ciguatera Poisoning: How I Manage my Symptoms with Food, Supplements, and Exercise (YouTube)

Ciguatera Experience: Updates and Encouragement After Six Years (YouTube)

Article from Cleveland Clinic about ciguatera

Monterey Bay Aquarium Seafood Watch Guide

Nourished Notes Bi-Weekly Newsletter

30+ Non-Gym Ways to Improve Your Health (free download)

Connect with Amy:
GracedHealth.com
Instagram: @GracedHealth
YouTube: @AmyConnell

Transcript

How to Choose Seafood and Avoid the Rare Ciguatera Seafood Poisoning I Got

Graced Health Podcast 

Host: Amy Connell

Hey everyone, thanks for joining me today. Glad you're here. I have a bit of a different episode for you today. We typically bring on episodes to help you age with grace and strength, and this one is a little different. It's the story of a time that I got an infection that is listed on rarediseases.org.

I wanted to share my story to raise awareness, number one, of this condition so that if you ever come across it, you will know what to do, and also give you some tools so that you can hopefully mitigate your chances of getting this.

In 2019, my family and I were vacationing at a very large resort in The Bahamas. I'm not going to name them by name because I don't want them to come after me, but if you know about The Bahamas, you can probably figure out which one that is. We were at this large resort, and because I have two young men and a husband who love red meat, we went to a steakhouse, which made no sense to me because we were in The Bahamas and there was wonderful seafood all around. So they got steak and I got the fish of the day.

Later that night I started feeling kind of bloated. Through the night it escalated to being the sickest I have ever been. I am going to fast forward, tell you what it was, and then rewind and tell you a little bit more about this.

So what I ended up getting diagnosed with was something called ciguatera poisoning. Basically, ciguatera poisoning is just a type of food poisoning that occurs when someone eats fish contaminated with what's called ciguatoxins. And these toxins are produced by a type of algae which is found in warm tropical reef waters that are eaten by small fish. And then bigger fish eat the small fish and it keeps going up. So ciguatera is really found in predatory fish. I'll tell you a bit more about what fish to look out for in the meantime, but reversing back to that night, you guys, I was—I can't even tell you—I was so sick.

Two of the most common symptoms of ciguatera are nausea and vomiting, and diarrhea. And that was definitely my case. It was so bad that I couldn't even make my way back to the bed in the hotel. My husband walked in and found me on the tile floor because the tile was cool and I felt so bad, and I just couldn't even get up.

Then as the night wore on, and every time I was using the restroom and then I would wash my hands, my hands started burning. Well, I thought it was the soap from the hotel because I was in a new place. This wasn't any of my stuff. And I'm like, "Why are my hands burning so much when I'm washing my hands?" Well, it turns out this is actually one of the symptoms as well, which is basically something happens neurologically and hot objects feel cold, cold objects feel hot, including water. So I was washing my hands with cold water and it felt really, really hot.

Another symptom I ended up getting was really intense itching, and I specifically got this in my shins and then also in my genital areas. So really intense itching in areas that you do not want to walk around scratching. So the next day when I was finally able to pull myself out of bed, and we still weren't really quite sure what was going on, but I had to excuse myself many times because I was itching so bad.

Some other symptoms include weakness and fatigue, and that absolutely hit me that night and continued on for many weeks, which I'll mention a little bit later. Headache, blurred vision, hallucinations—I don't think I got either one of those, but I want to mention it because everyone's experience is different. You can also experience dizziness or vertigo, heavy sweating, teeth that feel achy or loose. You might have a burning or metallic taste in your mouth, and then just pain in your muscles, joints, and abdomen.

This all happened the second to last night that we were there. Of course the first night was total chaos, if we just want to call it that. And the second day, the vomiting had stopped and I was just trying to keep something down, trying to get some fluids in me and a little bit of recovery. The next night I was able to join my family out for dinner, not knowing what I had and not knowing some of the triggers to bring the symptoms back on, which absolutely happened. And then the next day we left for the airport.

We are sitting in the airport and my husband starts evaluating, "Okay, we were all at a steakhouse. This was the night it happened. We all had steak, you had seafood." And so he actually is the one who figured out that I had ciguatera poisoning.

I wanted to take today's episode and tell you a bit more about this so that you can make informed choices when you are enjoying your fish tacos, which I want you to have, enjoying your ceviche, which I want you to have. I am not here to be an alarmist or to tell you not to have anything, but I think this is helpful information to know, particularly with a resource that I want to provide you at the end, that can help you make informed choices about your seafood and possibly mitigate your risk to get ciguatera, because I would not want that on anyone.

I mentioned how ciguatera happens. It starts with an algae. The smaller fish will eat the algae. It goes up the food chain until it gets to these large reef predatory fish. So these are things like grouper, snapper, moray eel, barracuda, amberjack, sea bass. Those are kind of the big ones that I will see consistently.

Here is the crazy kicker: there is no discerning factor from the time that the fish is harvested or pulled out of the ocean to the time that it lands on your plate. You can't tell if it is toxic, if it's going to give you food poisoning. So, I mean, admittedly, it's a little bit of a crapshoot, which is why I want to share this resource at the end of this episode.

You can detect the toxin in lab tests, but we're not going to run every single fish that is potentially a threat through a lab test. That's just not even feasible to do. So what do you do about this? Well, you make informed choices and you cross your fingers that you don't get it.

There are areas where the risk is a bit higher, and so these are going to be areas with warm waters, with those coral reefs. If you are in the US, then particular regions that are susceptible include Southern Florida, The Bahamas, which is where I was, the US and British Virgin Islands, Puerto Rico and Hawaii. Of course there are definitely other regions, but just kind of think of those really warm waters where there are corals, and that's where that algae is.

But of course, keep in mind that your fish are caught in regions and then those are shipped worldwide. So you kind of want to know where your fish is from. This is definitely easier if you are purchasing the fish rather than if you are getting it from a restaurant. And of course the hope is that your restaurants are sourcing them from quality areas. And again, I feel like I'm going to say this a couple times: just because you get these fish does not mean you are going to get ciguatera. This is on rarediseases.org. Just because you have grouper or snapper or eel or barracuda or amberjack or sea bass, that doesn't mean you're going to get this. Okay? I don't want to come on here and say never eat that again, because fish is great. I love fish. It's a wonderful source of protein. Again, it's so lovely in the summer in particular, like, let's have fish tacos, let's have ceviche, let's have the fish of the day at the steakhouse.

That's actually one of my very favorite ways to have fish. Just as a side note, whatever kind of fish it is, because you get the delicacy of a fish and get all of the heavier and really yummy stuff that they'll put on it at a steakhouse. I think it's called Oscar style, where they'll put like crab and creaminess and all of that. That's delicious and I still get it and I would want you to get it as well. Again, this is more awareness, so if this happens to you or a loved one, you will know what to do and so you can make informed choices.

So let's finish up talking about ciguatera. As far as a diagnosis goes, there's really no diagnosis. What we did was once we got home, we printed off the symptoms, kind of circled or highlighted the ones that I had, and I got on the phone the day I got home to see if I could get into my primary care doctor. And unfortunately, as is the case with so much healthcare right now, she wasn't available for like two or three weeks. So I went to urgent care.

I remember being in urgent care and saying what all was going on with me and handing the printout to the nurse practitioner at urgent care, and she said, "Okay, I need to do some research." Because again, it's very rare, and she went out, she closed the door and I heard her say to someone on the staff, "This is what happens when you advocate for yourself, because now I know what's going on with her." And it was so validating because I know sometimes doctors get really tired of us going to Dr. Google or now going to AI to diagnose things. But I think there is value in a certain amount of advocacy and being well informed, and providing information to your health team or your health professional so that they can help navigate with what steps to take next.

Now what she said is she came back in and said, "I am so sorry. There's nothing we can do here for you. We want you to go over to the emergency room and no charge for today." So I gather my stuff up, I go over to the emergency room and—PS I'm actually hosting a going away party for my neighbor that night, and I was hosting it with a couple other friends, and so there was a little bit of chaos on that end as well. Like Amy, you are in the emergency room and you are hosting a party. Yes, that's what we did. That's what we did anyway.

So there is no blood work. You get diagnosed from your symptoms. Again, this is why I think it's important to know your symptoms and for you to be aware of, "Oh, what did I have over the last 12, 24 hours?" That might be a clue as to what is going on.

Now once you get into medical care, like the nurse practitioner said at urgent care, there's really no antidote. There's nothing that they say, "Okay, you have ciguatera, and so therefore we're going to give you this." The exception to that is if it is caught very early. Then there are a few things that they can do, but that's only if it's early. By that time it had been about three days, and one of my regrets is that I did not seek medical care at the resort that we were staying at. I have to imagine they had something. This probably had happened before, albeit not on a daily basis, but again, because they're in those warm coral reef waters, they probably have seen this before. They might have been able to help me and to help recovery some, but it's not like Tylenol where, "Oh, I have a headache and so I'm going to take Tylenol, and then my headache will go away and it will feel better." Unfortunately, there's nothing like that.

What you really have to do is make some pretty strong dietary changes. I did an entire YouTube video in 2019, about six weeks after I contracted ciguatera, on how I managed my symptoms. And that video is still going strong. In fact, I just pulled it up as I was preparing for this episode, and I could see that there had been five views on that over the last 48 hours. I still get comments, I still get questions, and in fact, I am making a follow-up video for the most commonly asked question that I get either there or when people reach out to me through the socials, which is how long does it last?

I will tell you, for me, it lasted about six weeks and I was probably 90 to 95% better by then, and then it was just a slow truck. So it is one of those things where you have to have a lot of patience and you have to give yourself a lot of grace because it is not a linear progression.

If you are interested in seeing that video, I will link to it in the show notes and you can go watch the one that I made six years ago and you can watch the follow-up one. But as far as the dietary changes, there are four main things that I saw over and over and over again.

Number one, no alcohol. So take all alcohol out. For me right now, this is not that big a deal. I did drink more in 2019, so this had to be more of an intentional change. Again, now that wouldn't be that big a deal, but back then, that felt like a change.

The second change is no fish—no fish of any kind—and I don't know why. And you know what? I just decided I was going to believe them. So it wasn't just those large predatory fish, it was anything. So I took all fish out of my diet actually for a year. I was very lucky because one of my dear friend's husband is an administrator at a hospital and one of his physicians had kind of long-term ciguatera. Most ciguatera is resolved within about six weeks it seems like, but he had had it for several years and so he was so kind to get on the phone with me and just give me some encouragement and some wisdom. And he said, "You know, I would recommend that you take fish out of your diet for a year." So none of my beloved steelhead trout for a year, and I was so happy when I could slowly start integrating it back into my diet because yes, we eat a lot of steelhead trout around my house.

Another food on the no list is nuts. I eat a ton of nuts and this includes things like most of your non-dairy milk. I don't consume a lot of dairy. As I have shared, it kind of messes up my stomach and so I will have non-dairy milk. Well guess what's in my almond and coconut milk? Nuts. Granted, it's not a lot of it, but for those first six weeks, my system was so sensitive. So turning around, reading the labels on all of this, on alcohol, on fish, on caffeine—I share a story in the YouTube video that I was doing something with Worcestershire and my symptoms started back up. And then I realized, "Oh, okay, well Worcestershire"—which by the way, I don't think I pronounced that right, but I just can't say it very well, so give me a little grace on that—but that has anchovies in it. Anchovies are little bitty fish. It took a lot of work and a lot of reading. And there were a lot of slip-ups, and I ended up having to just pretty much eat at home. I couldn't trust anything out because I didn't know what it had been cooked in.

The other thing I found was caffeine. Now there is a great article that I will link to in the show notes from the Cleveland Clinic that kind of explains ciguatera in general if you just want to learn more. Caffeine is not listed on the Cleveland Clinic article. However, it was something that I saw several times, and again, the symptoms were so bad that I wasn't willing to risk it. I was like, "I will just take caffeine out for a while." And then when I started adding back in, it was more like green tea with just a little bit of caffeine. It took a while to work up to my two cups of coffee that I have in the morning.

Really what this turns into is being a student of your own body. And this is wisdom I think that we all need to have in all aspects of our life because our bodies are going to respond differently, and it's up to us to connect the dots. And maybe then what we do is we take the dots and then we take it to our medical team or our medical provider and say, "Can you help me with this?" And sometimes what happens is you recover and then you will have some of these foods that can be triggering and you'll experience symptoms again. This is where time and grace comes in and knowing that more than likely it will get better. There are a lot of support groups online and I remember coming across one on Facebook and people had had it for years, which is terrifying when you are in the early stages of this.

I do talk more about my diet and supplements and products I use in that video. If you want to listen to it, you can go watch it over on YouTube. But it's funny—I guess YouTube deleted this comment, but there was this comment one time from a total troll and it was something to the effect of, "These seem like total woo-woo suggestions. And should we also wrap our head in tin foil for it to go away or something like that?" And I was feeling a little snarky that day, and I replied back—and number one rule on the internet is don't engage with trolls—but I replied, "You know what? If someone had told me to put tin foil on my head while I sleep and I would feel better, I totally would have done it." This is such a desperate time. So I guess YouTube didn't like that interaction and they took it down, which is just fine. But those dietary changes honestly, I think are the biggest key. And again, you can learn more over on the YouTube video.

Since then, I have gotten kind of particular about the seafood that I eat. For example, I really try to have just gulf shrimp, like Texas Gulf shrimp, because it is harvested in US waters and I trust the US practices that we have more than some international ones that may not have as strict of rules.

One of the things that I came across, this was several years ago, was the Monterey Bay Aquarium Seafood Watch. And actually the Monterey Bay Aquarium is what prompted me to think of like, "Oh, this actually would be a good tie-in for the podcast."

The Monterey Bay Aquarium is actually an aquarium. It is super cool. I was there just a few months ago with my husband's family on vacation and definitely worth visiting if you want, but they also have a strong arm to help consumers and businesses make sustainable seafood choices, helping to protect the oceans and marine life.

What they do is they assess the environmental impact on different seafood species, and it provides recommendations based on those assessments. Then one of the things they do for you and I is they create these consumer guides. Their consumer guides are broken out by species, by US region, and by sushi type. If you are wanting to be thoughtful about consuming fish from safer regions, then this is a great resource to get online.

These guides make it simple for you. And what they do is they categorize fish into green, "best choice," orange or yellow, "good alternative," and red, "avoid." So it's super simple. My only problem with the guide is it is the size of credit card and the font is like four point font, so I couldn't even read it until I got home. But good news, it's actually online as well, and I'm going to put that in the show notes.

What's also cool about this is they asked me where I lived. I said, "I live in Texas," and so they gave me one for my region. Depending on what region you live in, in the US it will have a different guide and of course, online you can also search for particular species and particular types of fish and learn more about that. There's also one for sushi. If you're a big sushi fan and you enjoy going out, and again, remember, you can't cook ciguatera away—and I don't know if I said that or not, but you cannot cook it away. You cannot freeze it away. You cannot make it go away. You cannot identify it. So whether or not your sushi is cooked or raw, then this is still a great guide for awareness and potentially reducing your risk of contracting ciguatera or seafood poisoning.

It will give you a best choice, good alternative, and avoid just for seafood and the fish that you will get with seafood. The other nice thing about these guides is it will recommend if you get it farmed or wild or from a particular region. So that's super helpful as well.

This, again, is something that is more easily found if you are purchasing your fish, particularly those that are prepackaged. I'm envisioning Costco. I get a lot of fish from Costco and so you can turn it around. You can see where it was sourced from, what region it was, if it was wild, if it was farmed, and no, not all farmed fish is bad fish. In fact, it may even be safer.

If you are a big seafood eater, then this is something that might be worth just popping over—getting on the Monterey Bay Aquarium's Seafood Watch. That's a mouthful by the way. And poking around. You can download some of the guides and print them off if you're interested. And again, just make educated and informed decisions.

As I said at the beginning, I am not here to be an alarmist. I do not think it is necessary to not eat any of the fish that were mentioned. And if you are wondering, have I had red snapper since then? Yes. Do I avoid it? I do because it was such a traumatic event for me, and I am not one to ban all foods that come back up out of my mouth. I mean, I get terrible motion sickness, and I cannot tell you how many times I have thrown up in a boat, in a car, in a plane. I mean, I just—and if I were to say I'm never eating that food again, I probably wouldn't be able to eat anymore. I'm just not one of those people. But that was a rough night and it was a rough six weeks. And so for me, I do avoid it. But there are times that I just have to be brave and eat it.

One of those was about two years after that happened. We were celebrating my mom's birthday and my sister had organized this wonderful sushi chef, and he came and he made all of this fresh sushi and his signature dish was ceviche. Well, my family eats a lot of ceviche and so he made it and right as he was serving these beautiful bowls with this beautiful ceviche, someone said, "Well, what kind of fish is this?" And he said, "Red snapper." And I just—my husband was next to me and we both—I could feel the energy coming off of him and feel the energy coming off of me because he experienced that right there with me. I mean, when you're sharing a room in a hotel, there's not a lot of privacy. And thankfully we had a two room situation, so my boys were none the wiser until the next day, and my husband had to tell them what was going on.

But I chose in that moment to say a little prayer and go ahead and eat the fish. And we were fine. I was brave. And I even said to my husband later, I was like, "I was so brave." And he said, "Yeah, you were. I was too. I didn't want to have it." But every now and then in situations like that, I will have it. It's just one of those things that I don't want to risk again, and I don't want to risk having my symptoms re-flare or triggered back up.

So I do avoid red snapper. I do avoid larger fish when possible. I don't want to be fussy about it. I don't want to be an alarmist about it. But now you know, and now you have a resource to help guide you with your seafood choices when you are eating your fish this summer, because I hope you do. Fish is wonderful. It's delicious. Especially when you get the crab mix and the Oscar style and all of that on it. It's wonderful. Just this is here for your information. Do whatever you want with it, but now you know.

Okay, that is all for today. Go out there and have a graced day.