Recognising ARFID in IBS

Welcome to episode 43 of the Inside Knowledge podcast. I’m Anna Mapson.

Today I’m talking about ARFID (Avoidant Restrictive Feeding Intake Disorder) in IBS. This week is Eating Disorder Awareness Week. So I thought I would focus on ARFID in IBS because it’s probably it’s one of the least known types of eating disorders.

ARFID in IBS spans eating disorders and gut issues

There is a big overlap in functional gut disorders and IBS and these kind of restrictive eating practices.

In fact, people with IBS are twice as likely to have ARFID as people who don’t. I’m going to talk a little bit about what it is, what it would look like. And then a little bit about what you could do next.

Food restriction in IBS is common

Most people with IBS and almost everyone I work with have had some sort of dietary recommendation. Maybe from another nutritionist, a doctor or just on dr. Google. Commonly avoiding food groups like dairy. Maybe they’ve gone low carb, maybe you’ve gone on a low histamine diet, you’ve tried the low FODMAP diet.

It’s a really normal reaction to try to modify your diet because you’ve got digestive symptoms. After all, the digestive system is dealing with the food that you eat, so surely it would make sense to modify what you’re eating.

Factors affecting digestion are common

In some ways, That makes complete sense. But we also know that IBS is a disorder of the gut brain connection. And it’s not only about food. There are other things that influence the way in which we digest.

Most people report some sort of issues after eating. So they notice a change. Maybe you get more bloated after eating certain foods. Or that you get pain three hours after eating a certain meal. This is really common, also to notice it, to monitor it, and to find these associations.

It seems natural to want to cut more and more foods out of our diet in order to manage those symptoms.

When have you eliminated too much?

What is not so clear, I suppose, is at what point do these efforts to keep your digestive symptoms in check become disordered?

At what point is it not okay to keep going with them? So that’s what I’m going to explore a little bit. I just wanted to be really clear up front that although I said at the beginning of this episode that ARFID is an eating disorder and it is classified as such people who have ARFID aren’t necessarily focused on their body size.

Weight and body size aren’t the main drivers of ARFID

It’s not about trying to lose weight, where you are focused on eating less food in order to change the shape of your body.

Of course, not everyone who has IBS and is on a restrictive diet has ARFID. This is a particular set of symptoms and there is a classification for ARFID. They use something called the DSM-5, which is the way they classify mental health conditions. Eating disorders, have their own categorization within that.

What is ARFID? A definition

And ARFID is defined by an eating or feeding disturbance as manifested by a persistent failure to meet appropriate nutrition and or energy needs associated with significant weight loss, significant nutritional deficiency, a dependence on feeding tubes or a marked interference in psychosocial functioning.

So whilst in this episode I am talking about people who have very restrictive IBS diet, and particularly how ARFID affects people who’ve got IBS. That is the way that they classify the eating disorder, and that is how people get diagnosed with ARFID.

Visit your doctor if you recognise yourself in this

It’s important that if you feel like this is something that affects you, do go and see a doctor. It does need a doctor to diagnose, and a particular specialist, psychiatrist, or eating disorder medical practitioner.

ARFID is not picky eating

So just up front, be really clear. It’s not just about being a bit picky, it’s not about, oh, you don’t like certain vegetables because of their texture.

ARFID is where the restrictions that you have that are around the fear of eating or the fear of the consequences of eating, have led to weight loss or have led to a Nutrition Deficiency.

It’s affecting your body or that it is affecting your life. As in, it’s affecting your interactions with others, relationships and so on. It’s about the consequences of eating. and the feeling you get when you eat. There is, of course, though, a difference between picky eating, like fussy eating.

Disordered eating or an eating disorder?

This is where It’s hard to draw the line, and some people, it can be quite complicated to work out where the border is between disordered eating and an eating disorder.

Sensory sensitivity

But, the way ARFID is broken down is more about sensitivity. So like a sensory sensitivity to food. Maybe you struggle with a really strong flavours, taste. It could be a lot about texture.

Lack of interest in food

Other people with ARFID might just have no interest in eating. You have a very low appetite and you’re just not interested in food. There’s no desire to eat.

Fear of consequences of eating

But the most common type of reaction that I see is people who are afraid of what the digestive consequences are of eating. So, every time you eat you feel bloated. Or every time you eat apples you have really bad gas. Whatever, that’s going to stop you wanting to do it again.

Fear of eating is common in IBS

This is much more the common kind of issue that I see with my clients is people who just don’t want to eat certain foods. Or don’t want to eat anything new because of the worry of what it could do to you.

You might worry about choking or vomiting. Fear of vomiting is quite common. And if you eat foods that make you feel sick, give you nausea, then doesn’t mean you’re actually going to vomit. But then you’re going to avoid those foods because you don’t want that sensation because it drives your fear.

Your brain is trying to protect you

And this is partly down to how we learn. Pain is a danger signal that tells our body something is wrong.

We therefore tend to get fear of those conditions that create pain. I was thinking about how to try and explain this. I was thinking if you were trying to fix a bit of equipment in your home and last time you did it, you trapped your fingers and it really hurt. The next time you go to repair that door or whatever it is, you’re going to be really cautious. You’re going to be quite fearful of doing the work. Because you’re worried about trapping your finger again, because it really hurt last time.

So this time you’re not going to do it. Maybe you’re going to ask someone else to do it for you. You’re going to get someone in. You don’t want to get that pain.

Avoiding pain is completely normal

And so you’re avoiding the situation where the pain might come. But what it’s not doing is teaching you how to do that job.

And so actually you are avoiding it. And by avoiding it, you’re creating a whole load of situations. More and more experiences as you go through your life with the same digestive symptoms. They’re not going away. Yet you’re adding more and more situations that you just can’t do. Places you can’t go, and all of these sort of maintenance behaviours are in place to avoid feeling that horrible feeling.

Avoiding digestive symptom

So to translate it into sort of digestive symptoms. Maybe you felt really full and uncomfortable after a meal and you want to avoid that feeling in the future. So you start only eating half your dinner. You try not to get too full because you had a horrible experience. Feeling really stuffed, really bloated, maybe quite distended and gassy.

Negative reinforcing your thoughts

So then, because you’re only getting to the point of eating half a meal and you’re afraid to have a full stomach, it’s negatively reinforcing this cycle.

The problem is as well that you get the opposite of that, so that is hunger. The opposite is feeling hungry is the safe feeling. Because you’re less likely to get the bloating and the pain and the gas and those feelings. Or maybe the urgent diarrhoea, whatever it is.

I had a client a few years ago who just realized through working with me. “I am afraid to have a full tummy”.

She’d worked that out when I was trying to push her to eat more and more. I think she was on a low FODMAP diet, but she was worried about having a full stomach, even of the foods which she knew would be okay.

When you feel hunger is a safe place

So when we know that hunger is the opposite of the bad feeling. And we feel like hunger is the safe place to be, it’s hard to move out of hunger. That gets you trapped in this cycle where you don’t want to eat.

You can then get into this cycle where you are getting fear of normal digestive symptoms as well. So you’re getting a normal amount of gas, a normal amount of gurgling. Maybe some bloating, or just feeling of general fullness that’s not starved. But you’re just full enough.

But that sensation in your mind is associated with really negative consequences.

Normal digestive feelings can feel dangerous

Can feel very scary. And therefore, when you’re feeling scared, you can actually then affect your digestion even further. If you go back and listen to episode 4 as well. Where I talk about the gut brain connection. I talk about how when you’re feeling scared, stressed and anxious.

Then your blood supply is not majoring on your digestive system. It is flowing to your muscles, to your brain and putting you on high alert. And if you’re in constant state of stress and anxiety and worry and feeling very tense, that is not optimal for your digestive system.

You have lower, output of stomach acid lower digestive enzymes, which means you’re not going to break down your food as effectively and therefore It’s almost gonna cause more gas.

Learning to manage normal digestion in ARFID

So learning how to feel calm when you eat is also very important. A small sensation in your stomach does not necessarily predicate a massive flare up. That’s what you need to start to learn to deal with. Like, how to tolerate normal bodily sensations, and not go into that sort of real distressed, cycle and mindset.

So that’s one way that the fear of eating actually causes you to not digest your food as well.

ARFID is linked with nutrient deficiency

But also there’s research that shows that people who have ARFID, are only consuming up to  60 or 70 percent of the amount of fruits. And only 50 percent of the amount of vegetables that a group of healthy controls were eating.

Undereating can slow down gut motility in ARFID

So this extreme food avoidance can also lead to problems with not eating enough food. Which can slow down gastric motility. Slowing down the speed with which food goes through your body, which can increase bloating, constipation, and digestive distress symptoms.

Anxiety links IBS and ARFID

There’s also a big link of anxiety between People who have IBS and people who have ARFID. So there’s the anxiety and sometimes disgust around food that contribute to avoiding food in people with ARFID. And that kind of heightened sensitivity to food, texture, taste, may be linked to the visceral hypersensitivity that people have in IBS.

We know people with IBS are hypersensitive to small changes in the gut. Other people can have the same amount of gas as you and not experience the pain and the discomfort and that sensitivity that you feel In IBS. So there’s a heightened nervous system. It’s like on overdrive, listening out and really overreacting.

Avoiding IBS triggers when you don’t know what they are!

But that is another kind of link between people who have IBS and people who have ARFID. It’s that heightened sensitivity and heightened perception of food. And what’s happening in your digestive system. Linked to that. Thinking about the fear, and I was talking about the pain, you’re worried about pain. So you don’t do the thing that’s going to lead to the pain, but in IBS, it’s so unpredictable.

For a lot of people when it’s not well managed, you don’t know what your triggers are. You don’t know what might set it off, and therefore, every meal could be potentially quite scary.

ARFID assessment

Some of the questions that I ask my clients at the beginning of working together include things to find out to what extent you’re avoiding things, and what might be the drivers behind you avoiding certain foods.

Understanding your food preferences in ARFID in IBS

So I ask, for example, are you a picky eater? Or do you dislike most foods that other people seem to eat okay?

And one interesting question is, is the list of foods you like and that you will eat shorter than the list of foods that you won’t eat?

And this is quite an interesting question to get to the bottom of whether people are on a really restrictive, small amount of food. What people normally say is, I do like these foods and I want to eat them. I just can’t because of the gut symptoms.

So those first three questions are just about understanding like your preferences.

Understanding your appetite

And then I ask a little bit about, your appetite. Do you have a very small appetite compared to other people? Do you ever enjoy eating?

That kind of thing. So maybe you can think about this. Do you have to push yourself to really eat a normal size meal? And even when you’re eating something that you really enjoy, do you have to force yourself to eat enough? Or can you eat a big meal then?

Understanding your symptoms

And then the next set of questions are really about do you put off eating because you’re afraid of gut symptoms like bloating or choking or vomiting?

Do you just not eat? Do you ever just restrict yourself to a small subsection of foods because you’re trying to avoid gut symptoms? Or do you only eat very small portions, for example, because you’re worried about your gut symptoms?

ARFID assessments aren’t fit for people with IBS

The problem is with sort of trying to screen for things like ARFID in IBS is that Everybody I work with says “yes They restrict their food because they’re worried about gut symptoms” and that doesn’t necessarily mean that you’ve got an eating disorder.

It means that you’ve got a severe gut issue and you’re taking reasonable and moderate steps in order to manage those symptoms. So just because you think oh actually I recognize myself in some of those statements. It wouldn’t necessarily diagnose you with an eating disorder.

However, if you feeling that this is a problem, in that

• food is taking over your life.
• Food is becoming all you think about,
• you’re anxious before every single meal.
• You can’t socialize with people.
• It’s becoming difficult to maintain relationships
• physically, signs that you are not getting enough food is obviously that you are losing weight unintentionally.

Physical signs of an issue with diet restriction

If you’re losing weight and you don’t want to be. Or maybe you are already in a small body and you can’t really lose any more weight or just that you don’t want to be in a smaller body size but weight is coming off because of the restrictive diet. This is another big sign to go to your doctor.

You might have physical signs like

• your nails are very thin and brittle.
• Your hair is dry.
• Your skin is dry.
• You are feeling very cold all the time and finding it hard to get warm.
• Your circulation is slow.
• You could be struggling with insomnia, so you’re not sleeping well. Because your body cannot switch off at night because it hasn’t had enough food during the day. Or it’s only had a certain amount of food because you’re eating the same foods on repeat.

ARFID affects adults, not just children

Part of the reason I wanted to cover this topic is that people often think about picky eating in children and Oh, they’ll grow out of it. And adults don’t seem to have this problem with picky eating.

What I find is people hide it very well. You might be quite embarrassed about the limited diet variety that you have. Logically, you know, as an adult, that you should be eating more.

But this is not about not having the right knowledge or not understanding enough about nutrition. Often people are very well versed in what they need to be doing.

But this fear or disgust or just total lack of interest in food is making it hard for you to actually get the food in. So this is why I wanted to do this episode just to call out to people to say, it is okay to go to your doctor about these things. Its not just about kids.

How to ask for help with ARFID in IBS

And ideally your doctor will refer you to the relevant mental health support, because if you actually get diagnosed with an eating disorder, which ARFID is, then you should be able to access the help.

I know the waiting lists are exceedingly long, the threshold for getting help is very high, and so there isn’t always the right help available but it is important to go to your doctor and try and see what is available in your area.

Non-food interventions for ARFID in IBS

The other things you can think about are non food interventions for supporting your gut because if your digestion works better then you can tolerate a little bit more food.

I know it’s not going to help you get over the fear of it. But if you can reduce the symptoms through non food related things you’ve got a better chance of being in that place where you are feeling more open to trying new foods.

Mindful eating

The things I’m talking about when I mention non food interventions for IBS include mindful eating, chewing your food really well, sitting at a table.

If you go back and listen to the first four episodes of this podcast, I go through a lot of the basics of things that you can do that don’t involve changing your diet. They just involve changing how you eat, but also really prioritizing self care activities. Things that help you support and nourish that gut brain connection so that you feel a little bit more resilience. To help you get through the challenge of working out how to expand your diet.

Supplements for IBS

You might also be interested in episode 22, which was all about supplements for IBS and what would be worth taking.

So thinking about, for example, if you’ve got constipation, are there some things like psyllium husk, like PHGG, that’s partially hydrolyzed guar gum. That can help you to get things moving without necessarily changing your food. Maybe you can take magnesium to support a looser stool.

Psyllium husk also, by the way, can be used in people who have IBSD, like diarrhoea predominant. So helping you to form a softer stool, but also increasing some of those foods within the foods that you find safe that would contain some soluble fibre helping to form a good poo.

Exercise can help reduce stress levels

Now also you can think about exercise that also brings down the stress levels, helps you release cortisol and just kind of reset your body and exercise can also help you sleep better.

So there are a number of things that you can be doing. Even if you feel like tackling what food you’re eating is too far off where you are right now.

Be honest with yourself

But I would consider those questions that I have placed into this episode really think about them. Are they a problem for you?

Then also think about what you’re prepared to do about them. What resources have you got within yourself to tackle this right now. Try to get some help. There are eating disorder registered nutritionists and dietitians who specialize in this who can give you the right kind of support. As well as your doctor, or eating disorder trained counsellors and therapists.

Thanks for listening this week. I’ll be back next week. I hope it’s been helpful.

Thanks for getting the inside knowledge. Better digestion for everyone.