The MEN1 Mosaic

#47 - Pancreas Problems? How to Eat Without Fear (Yasmin Chotai de Lima, Clinical Dietician for NEC)

• Lizzie Dunn • Season 1 • Episode 47

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How do you eat well when your pancreas isn’t playing ball?

Clinical dietitian, Yasmin Chotai de Lima, joins me on the MEN1 Mosaic Podcast to unpack some of the most misunderstood issues around food, digestion and low blood sugar in MEN1 and neuroendocrine cancer.

We cover:

The truth about 'carcinoid trigger foods'

What to do if you've had pancreatic surgery (or haven't—but still have gut issues)

What PERT is, why it matters, and how to navigate UK shortages

How to manage insulinomas or blood sugar crashes while protecting long-term health

Why trusting your gut matters when faced with confusing or conflicting advice

Yasmin Chotai de Lima is a registered clinical dietitian based at the Royal Free Hospital, London, where she specialises in supporting people with neuroendocrine cancer. Her expert knowledge and calm, compassionate approach have helped many patients navigate some of the most complex dietary challenges that come with these rare conditions.
Learn more about Yasmin’s work here.

Join my MEN1 community & receive the free guide that helps keep me out of surgery, off medication and asymptomatic. Click here.

*Here I share my personal experience as a MEN1 patient. Nothing is intended to provide medical or holistic health advice. All opinions are personal, including those of my podcast guests. Always consultant a qualified medical professional.*

Hello and welcome back to another brand new episode of the MEN1 Mosaic Podcast. My guest today is Yasmin Chotai de Lima, a clinical dietitian working with neuroendocrine cancer patients at the Royal Free Hospital. I asked her on today because I listened to a podcast she participated in with Neuroendocrine Cancer UK—a quite well-known charity in our communities—and I was fascinated by some of the topics that came up. I asked her to come back and share a little bit more, as I thought they might be interesting for you too. So we're going to dive into food, all things hypoglycaemia, insulinomas—all those really niche little topics that maybe we don’t hear about elsewhere. I’m going to ask Yasmin about digestion after pancreatic surgery, which can become a problem, and blood sugar crashes, which we all know quite well if we’ve ever been down that road with pancreas problems as someone managing a diagnosis called MEN1. But I also hope this episode speaks to anyone who might just have a fascination with food or blood sugar, or any of those things. So, welcome Yasmin—it’s really exciting to have you on, and thank you so much for giving us your time so generously.

No, thank you very much for having me.

So I wanted to start off with, I guess, a really big vague topic, which is food. And yet for patients like myself—people managing MEN1 or neuroendocrine cancer, who you work with—anyone tuning into this topic who feels like they’re dealing with a complex condition… sometimes there’s a little bit of an alarm that comes up around the conversation about food. Because what applies to, let’s put them in inverted commas, “normal people” doesn’t always necessarily apply in complex situations. And it can be easy to be misled by conflicting advice or just stay completely stuck and never really know what to do. In the case of people dealing with neuroendocrine tumours, in your experience, what are some of the misconceptions patients might have, or the things you’ve heard bandied around that might not be the case for people in this kind of speciality?

Yes, sure, really good question. So certainly with neuroendocrine tumours and neuroendocrine cancer in general, I think one of the top things that comes up is “carcinoid trigger foods”. That’s a big one. I think if anyone Googles ‘diet and neuroendocrine neoplasms’ or other terminology, that’s something that comes up quickly. The idea behind it is that certain amino acids—particularly vasoactive amines, which include things like histamines—could in theory be a problem with carcinoid syndrome. But when we look at it more closely, the evidence is really lacking. There’s not good evidence to support it. Also, the only group of people where this might even be a concern would be those who actually suffer from carcinoid syndrome—not all patients with neuroendocrine cancer. So that’s one point. Because we do get patients who don’t have carcinoid syndrome thinking they need to restrict certain foods. In practice, I actually don’t see it being much of an issue, to be honest. And as I said, the evidence is lacking. There is a potential mechanism, and it would be great to see more research in this area, but in practice—once we get on top of digestive issues, which we can talk about further in this episode—this doesn’t seem to be a major problem. If people do suspect it’s a problem, then keeping a food and symptom diary can be helpful, and keeping certain foods in mind. Ideally, they can speak to a dietitian to support that process. But really, that general advice to avoid all these things like tomatoes and fermented foods doesn’t apply to a lot of patients. I can only think of a couple of cases where we’ve actually had to explore that route. Another one that comes up is the idea of “sugar feeding cancer.” That’s something I see again and again when someone has any kind of cancer. It’s also something that shows up with other cancers when you search online. Cancer Research UK has some really good information on their website about this. But essentially, the idea comes from the fact that all cells—healthy and cancerous—require sugar, or glucose, to function. So we can’t specifically starve cancer cells of their energy without also starving the healthy cells.

There’s also a risk if we limit carbohydrates—whether that’s complex carbohydrates or sugars in general—because if somebody is already struggling with their weight, limiting their diet further is not ideal. Avoiding carbohydrates too much means our healthy cells also don’t get fuel, particularly our brain. The body might then start turning to muscle and fat stores for energy. So again, the evidence doesn’t support that approach, and it can cause more harm than good.

The third one that comes to mind is dairy. There have been some studies in other cancers—particularly breast and prostate—looking at potential links between dairy and cancer risk, but the findings are inconclusive. Some studies have shown a potentially protective effect of dairy, particularly with colorectal cancer. Some have suggested an increased risk, but the results are often influenced by other factors like BMI, waist-to-hip ratio, and whether someone’s consuming high-fat dairy. So again, the evidence doesn’t really suggest that people need to avoid dairy.

Generally speaking, I encourage healthy eating and a varied diet. Of course, there are situations where that needs to be adapted or tweaked, but that’s the core of it.

That’s really helpful—thank you. You’re helping me filter through a lot of information that’s out there. We live in an age now where we have incredible access to information, which we didn’t have 50 or 100 years ago. But of course, that comes with its flip side. I think for anyone listening to this podcast, it’s going to be really reassuring and helpful to hear this from someone who has specialist experience working with people like us. So thank you for busting those myths with such clarity.

You mentioned digestion briefly, and that’s a really important topic for me personally, because I’ve struggled with digestive issues—which in my case weren’t actually related to MEN1. But I know there are a lot of people with MEN1 who are affected by things like bloating, constipation, diarrhoea—all the things most people would rather not talk about but are hugely important. Nutrient deficiency is another one.

I’m thinking about two different groups here: people with MEN1 who haven’t had pancreatic surgery, and those who have—where some or all of the pancreas has been removed. In both of those situations, which are obviously a bit different, are you able to offer any tips to help people support their gut health if that’s something they’re trying to rebuild from the inside out? I know there are medications like pancreatic enzyme replacement therapy, and also lots of resources around supplements and diet. What are your thoughts?

Yes, of course. So really, anyone who’s had surgery affecting the digestive system should ideally get advice from a dietitian—especially if they’re experiencing symptoms. Pancreatic surgery and enzyme replacement therapy are two major areas we think about.

We know from very good evidence that pancreatic enzymes, which naturally come from the pancreas, play a huge role in breaking down nutrients. If someone has had the head of the pancreas removed—or a total pancreatectomy, where the whole pancreas is removed—they should certainly be on pancreatic enzyme replacement therapy (PERT). Some people who’ve had the tail of the pancreas removed also experience insufficiency and need PERT.

Unfortunately, if there’s a clinical indication, there’s really no way around needing enzymes. One product won’t necessarily suit everyone. There are a few different products on the market, and we’re also now looking at imported products in some cases. But it’s important to know the enzymes don’t just help with symptoms—they help with absorption of nutrients, including macronutrients (fat, protein, carbohydrates) and micronutrients (vitamins and minerals), which are essential for things like bone health.

I didn’t mention earlier, but calcium and bone health become even more important in the context of MEN1. So ensuring your body is absorbing what you eat is critical. And of course, if someone has had gut surgery in general, that can also impact nutrient absorption. So ideally, there should be dietetic input in those cases too.

I think you asked earlier about patients who haven’t had surgery but still struggle with digestive issues—yes, absolutely. It’s really important to acknowledge that not all digestive issues are surgery-related. Some may be due to other things, and it’s important to have an open conversation with a healthcare professional about whether the symptoms are related to the MEN1 diagnosis or if something else is going on.

Sometimes it’s a microbiome issue—what we call dysbiosis—where the balance of bacteria in the gut is off. The beneficial bacteria that live in our bowels play a huge role in digestion, and that balance can be disrupted for a variety of reasons, even in the general population.

One approach that can help some people is the low-FODMAP diet, where we limit certain fermentable carbohydrates that can exacerbate bloating and bowel symptoms. However, the downside is that it also limits the nutrients that feed the good bacteria. So for some people, what they actually need is more of the foods that nourish their microbiome, not fewer.

That’s why tailored, individual advice is so important—ideally from a dietitian who understands these nuances. This patient group is very heterogeneous, and it’s not a one-size-fits-all situation.

But speaking more generally, when tolerated, I recommend including foods that are high in fibre. Fibre is great for promoting the growth of friendly bacteria and for regulating bowel movements. That means fruits and vegetables, and wholegrain carbohydrates—again, only if fibre hasn’t been restricted by a healthcare professional for another reason.

Some people may also benefit from a high-quality probiotic. These are supplements that contain live friendly bacteria. They can be helpful in certain cases, though they’re not for everyone and should ideally be discussed with a healthcare professional to make sure they’re appropriate.

So yes—generally speaking, healthy eating, lots of plants, a wide variety of foods, unless advised otherwise, is the foundation for rebuilding gut health.

That's brilliant, thank you. And we briefly mentioned PERT—pancreatic enzyme replacement therapy—for anyone who’s seen that acronym and wondered what it means. I know there’s been a lot of concern recently about shortages of these medications. That can be so frightening, especially for someone with no pancreas or very little enzyme production.

People start to think about stockpiling, or they’re hearing conflicting stories and don’t know the full picture. What would you say to those patients who are feeling afraid about PERT shortages? I imagine you’ve seen this happen a few times over your career. Is there anything tangible or practical you’d offer to help people feel a bit less panicked?

Yes, absolutely. It’s a really tricky situation because, as you said, PERT is a life-changing medication. We rightly emphasise its importance, and now we find ourselves in a situation where supply is disrupted. Patients who’ve been on PERT for years have seen these ups and downs before, but in the past, those shortages were usually short-lived.

Unfortunately, the current issues have been more prolonged. There is supposed to be increased production by 2026, so there’s some hope on the horizon. But in the meantime, there’s been a joint response from organisations like the British Dietetic Association (BDA), the British Society of Gastroenterology, and charities like Neuroendocrine Cancer UK, Guts UK, and Pancreatic Cancer UK. They’ve put together guidance documents—one for healthcare professionals and one for patients—and they’re both open access online.

The main message is: nobody should be left without enzymes for a prolonged period. If you're struggling to get them, please keep reaching out—whether that’s to your GP, your hospital team, or a charity you trust. Hospitals are usually prioritised for stock, so sometimes they can provide an emergency supply to get you through a gap.

Your GP will still be the main prescriber, but if you’re in crisis, ask whether a temporary supply can come via your hospital team. Also, there are contact numbers for the main manufacturers listed in those documents and on charity websites—so don’t hesitate to use those too. And then of course, take your enzymes as optimally as possible. Instead of swallowing them all at once—say, at the beginning or end of a meal—it’s best to mimic what your pancreas would naturally do, which is to release enzymes continuously while you’re eating.

So if I’m sitting here eating a cheese sandwich, my pancreas would be releasing enzymes from the moment I take the first bite until the last. Try to mirror that by spacing your enzyme capsules across the meal—take some at the beginning, some in the middle, and some at the end. That way, you’re covering the full meal and getting the most effective digestion.

If you’re not losing weight and your main issue is symptoms, it may be safe to cautiously reduce your dose—by, for example, one capsule per meal and one per snack. But always let your healthcare professional know, and monitor your symptoms and weight closely. If you’re already underweight or trying to gain weight, this advice wouldn’t apply—you’d want to keep your enzyme dose as prescribed.

Storage is another factor. Most enzyme products don’t need to be refrigerated, but always check the manufacturer’s instructions. Don’t store them somewhere hot—like in a car, near a radiator, or even in your pocket—because heat can denature them. That’s important, especially when supply is limited. You want to make the most of what you’ve got.

If you’re using any oral nutrition supplements—like high-calorie shakes—some of those are specially formulated to require fewer enzymes or none at all. So definitely speak to a dietitian about that if you’re concerned.

That’s brilliant, Yasmin. Honestly, the level of detail you’ve given is amazing. I know some of it may be a bit technical for people who aren’t in this situation personally—but I’ve spoken to patients who’ve found PERT shortages very frightening. What you’ve just shared will be so reassuring and empowering. I’ll pop the links you mentioned in the episode description as well.

So now I want to switch to a different subset of MEN1 patients—those before surgery who are managing symptoms, particularly insulinomas. The main concern here tends to be low blood sugar. Managing that before surgery becomes an option can be quite a task—and not something many of us are told about in detail beforehand.

I’d love to ask: if someone is newly experiencing low blood sugar and hasn’t had much warning, what kinds of foods or approaches can help stabilise their energy and avoid crashes? Back when I had insulinomas, I used to carry Lucozade and jelly babies with me everywhere. Is that still the advice? Or have things changed?

Yes—great question. So those fast-acting sugar-based options, like jelly babies or glucose tablets, are still used to treat actual hypos. That advice is similar to what we give to patients with diabetes: if your blood sugar is crashing, you need something quick to bring it up. Jelly babies, dextrose tablets, or a small glass of orange juice are good options.

Sugary drinks like Lucozade don’t work as well anymore due to the sugar tax—they’ve lowered the sugar content. So you’re better off with the sweets or orange juice if you're treating a hypo.

But ideally, we want to prevent the crash in the first place. And it’s so important to say: if you do have a hypo, it’s not your fault. These things can be unpredictable and difficult to manage.

To minimise the risk, we focus on eating regular meals and snacks that are based around low glycaemic index (GI) and low glycaemic load (GL) foods. These are foods that break down more slowly in the body, releasing glucose gradually rather than all at once. That helps stabilise blood sugar over time.

In practical terms, that means including some form of carbohydrate in every meal and snack—but choosing wholegrains and high-fibre versions when possible. For example: wholegrain bread, brown rice, potatoes with the skin on, oats, and wholegrain crackers. These all release glucose more slowly.

Then pair those carbohydrates with protein and fat, because those also slow digestion. For protein, think meat, fish, eggs, dairy, beans, lentils, tofu, or even plant-based alternatives like tempeh and seitan. Fats can come from oils, butter, cream, cheese, nuts, seeds, and avocados.

A good snack might be a slice of wholegrain toast with peanut butter, or crackers with cheese, or hummus with veg and pitta. Beans on toast is another great option.

And the pattern really matters—aim for regular meals and snacks throughout the day: breakfast, snack, lunch, snack, dinner, and even a bedtime snack. Some people also need to check their blood sugar overnight and have a snack if it’s dipping during sleep. Some people might also benefit from waking up in the night to check their blood sugar and having a small snack if needed—because that overnight stretch is usually the longest we go without eating. But even with all this, for some people it’s not enough, and they may need other treatments. That’s where I’d really stress the importance of seeing a dietitian.

I still see patients who only come to me after insulinoma surgery. Often they’ve been told beforehand to just eat lots of sugar to avoid hypos, and they’ve gained weight as a result—because they were trying to prevent crashes but didn’t get the right kind of guidance. That weight gain can be from both the insulin itself, which is anabolic and promotes fat storage, and from eating lots of high-sugar foods rather than foods that provide longer-lasting energy.

So it’s a real shame when patients haven’t had access to a dietitian sooner. Anyone with an insulinoma really should be under the care of a specialist dietitian—ideally as part of a centre of excellence.

And if that’s not possible, there are still options. For example, in some cases we use something called uncooked cornstarch (also known as maize starch or cornflour). It’s a slow-release carbohydrate that can help maintain blood sugar levels—especially overnight. But again, this really should be done under dietetic supervision.

Yes, that’s really helpful—and I’m smiling because, as I briefly mentioned, I had insulinomas around 15 years ago. And it’s good to know that the advice is evolving. I know some people might find that frustrating, but I actually think it’s great—because it means there’s more understanding now. And like you said, I probably would’ve had a totally different experience if I’d had access to someone like you back then.

I could really relate to what you said about people gaining weight—not realising that it’s the type and timing of sugar that matters, not just eating more. Those kinds of nuances aren’t always obvious unless you speak to someone who specialises in this.

You also mentioned centres of excellence, which I’ll link in the episode description—so people know what they are and why they matter. Especially in rare conditions like MEN1, it makes such a difference to have access to specialist care.

Now, staying on a similar theme: for many people with a diagnosis like MEN1 or a neuroendocrine tumour, there’s general advice out there—eat well, balance your blood sugar, don’t cut out food groups—but then there’s also the specialist advice. And sometimes the result is confusion, overwhelm, or fear of getting it wrong. People might freeze or feel like they can’t do anything just in case it’s not the “right” thing.

What would you say to those people who are really trying to do the best they can but feel paralysed by the volume of conflicting information out there?

Yes, it’s such an important question. And you’re right—while having access to information is amazing in many ways, it also makes things trickier.

So my first bit of advice would be: talk to your healthcare team. Tell them your concerns. Ask them directly: are there any specific things I should be doing or avoiding? Is there anything I don’t need to worry about? Can I see a dietitian?

And if you’re looking for independent resources, choose ones that are evidence-based—so they’re drawing from well-designed studies and a consensus of experts. As I mentioned earlier, some good examples are: Cancer Research UK, Neuroendocrine Cancer UK, and potentially AMEND as well. I’d also add Guts UK and Pancreatic Cancer UK, depending on your specific situation.

Another thing: be very cautious about any advice that tells you to cut out entire food groups. There are occasional clinical reasons someone might need to avoid something—for example, fibre after certain types of surgery—but that advice should only come from a qualified health professional. If a random website or social media post is telling you to cut carbs, cut dairy, cut everything… that’s a red flag.

And trust your own instincts, too. I’ve had patients come to me and say: “I followed something I found online, and I lost a lot of weight—it didn’t feel right.” That’s the time to stop and reach out for professional help. If something makes you feel worse, don’t keep pushing through.

That’s such helpful reassurance. And just hearing you acknowledge how confusing it can be—it really matters. Because like you said, food is such a central part of daily life, and having to constantly second-guess yourself is exhausting.

Before we wrap up, I’ve got one final question for you. If there’s one thing that you want people listening to this episode to take away—just one key message—what would it be?

Great question. Maybe I’ll offer a few final thoughts rolled into one.

First: food isn’t just about nutrition. It’s social, it’s emotional, it’s part of how we connect with people and enjoy life. So even if you have to take enzymes with food or follow certain routines, try to find ways to keep it pleasurable—whether that’s through flavours, presentation, eating with others, or whatever works for you.

Second: the general advice might not sound very exciting—but it works. Think wholegrains, a variety of colourful plants, good sources of protein and fat, and staying well hydrated. For some people, kidney stones are a risk, so hydration and moderating salt intake are especially important—unless you’ve been told otherwise by your team.

And last: don’t beat yourself up. If you eat something that triggers a symptom, that’s OK. If you try a change that doesn’t help, that’s OK. This is complex. It’s hard. You’re doing your best. Just reflect, regroup, and keep going.

That’s such a powerful way to close. Thank you so much, Yasmin—not just for your generosity of time, but for the wisdom you’ve shared today. I’m really excited for this episode to go live and for people to be able to hear everything you’ve said.

I hope lots of MEN1 and neuroendocrine cancer patients find it helpful—and maybe even some people who are just curious about the connection between food, hormones, and health.

And I really hope we can have you back on the podcast in the future.

Thank you so much, Lizzie—and thank you to everyone listening, too.