Coeliac disease or IBS? 

Welcome to episode 73 of the Inside Knowledge podcast for people with IBS, I’m Anna Mapson.

Giving up gluten

A lot of people I work with have already given up gluten by the time they come to see me. And sometimes they feel better at first when they’ve given up gluten. But the problems persist and come back, and they’re still not quite sure whether they should eat gluten or not.

It is a topic with so much misinformation, especially on apps like Instagram, TikTok, and Facebook. You often see gluten being described as inflammatory. But just to let you know, it’s not inflammatory. I really get so mad seeing people describe food as toxic or inflammatory because no one food is going to raise your inflammation markers.

Unless in this case you do have coeliac disease and that is why we’re going to be really clear today about how to get tested for that and how you would know if you had it.

What is coeliac disease?

So to go right back to the beginning. Coeliac disease is an autoimmune condition where your body reacts to gluten. You might want to listen to episode 16 that I did about a year ago, talking about should you go gluten free if you have IBS.

In that episode I break down a lot about the differences between gluten and wheat and fructans. Including why you might be reacting to gluten products and why you might feel better without them in your diet. So go back and have a listen to that. It’s a really good episode just explaining a bit about gluten.

What is gluten?

But essentially it is a protein in grains like wheat and spelt. People who have coeliac disease have a reaction to the gluten that means that their gut cells almost begin to attack themselves. So it’s an autoimmune condition, as in other autoimmune conditions like type 1 diabetes, like lupus. These are all conditions where your body attacks itself, and that’s why it’s called autoimmune and coeliac disease is one of those.

Because it is in the gut and the digestive symptoms are very similar to IBS, unfortunately, a lot of people who have coeliac disease are misdiagnosed with IBS in their diagnosis journey. So in some studies, one in four people have previously been diagnosed with IBS and then they go on to actually have coeliac disease.

IBS symptoms can mask coeliac disease

And in one study, I think about, quarter of the people in there had previously been given IBS advice. So they’d been told these are the things you should do, follow the FODMAP diet, manage your stress. And actually whilst managing stress and, you know, doing a bit of exercise. Those are always good solutions for health.

They’re not going to help you if you’ve got coeliac disease, or they might help you, but they’re not going to resolve your coeliac disease. So this just shows how difficult it is to get, a really good diagnosis. And I think there’s some research saying it takes on average 13 years to get a diagnosis for coeliac disease.

Which is why it’s really important that you do not assume you’ve got IBS when you start getting terrible digestive issues. You actually focus on getting a diagnosis of IBS and majority of the time that is through ruling out other conditions.

IBS is more common

You can see how people assume it’s IBS first, because around 1 in 10 people have IBS in the UK, so statistically it’s much more likely that someone would have IBS than they would have coeliac disease, because that’s probably about 1 in 100 or 1%.

But actually within the population of people who have IBS, the number could be much higher. So it could be up to 3 percent of people who have IBS who’ve got undiagnosed coeliac disease. So there was one study where they took 105 patients with IBS and 12 of them were actually found to have coeliac disease.

And when they started on their gluten free diet and were really strict about it, eleven of those twelve people felt completely better. So it just shows that those people could have gone through all the IBS hoops, you know, doing the FODMAP diet, doing the Nerva app, taking some antimicrobials, taking probiotics.

Strict gluten free diet needed

It’s not going to help because coeliac disease was their problem. The symptoms of coeliac disease though are very similar to IBS. So you might get bloating, abdominal pain, gas, diarrhoea. Because gluten is in so many different foods, you could be getting a low level exposure without really noticing it as well.

And this is partly the problem where people who have IBS and they give up gluten, and they think, Oh, I’ve cut out most wheat products, but I do like to have dry roasted peanuts, or, gravy that has gluten in it. These kind of things can be a low level exposure that if you’ve never had it ruled out. It could be upsetting your digestion, and you’re never going to get to the bottom of it.

The difference between those symptoms in people who have IBS and people who’ve got coeliac disease is that in IBS It’s not damaging your gut. It’s not giving you lasting problems Because yes, it’s uncomfortable. You’re getting the pain, gas, bloating, fast transit time, da da da da da, all of those things.

Gluten damages the gut in coeliac disease

However, when people have coeliac disease and they are exposed to gluten their symptoms are partly down to the permanent or long lasting damage that is happening to the small villi inside the small intestine. The villi are like tiny fingers that stick out into the tube of the small intestine. So they’re coming inwards into the middle of the tube and sticking out. That is how we absorb our nutrients.

Imagine a towelling robe or a shower mat that you might have a fluffy mat to soak up the shower drips when you come out of the shower. That fluffy, mat has got lots of little fingers that stick upwards. Each of those fingers is covered in fluffy bits sticking out sideways.

Shortened villi in the small intestine

So you’ve got some coming up, some coming out, and that is what these little villi are like. It’s a huge surface area, and that’s how we absorb a lot of our nutrients. But when there’s damage to these small villi through the gluten, what happens is these villi get shorter. You may end up with nutrient insufficiency or even deficiency over time. Because there’s a lack of available space in order to digest the certain nutrients that we need.

And it is a tiny amount of gluten that can actually do this damage. So if you imagine you had a huge box with 1 million red marbles in it, then Only 20 of those million were blue. It’s a tiny proportion, but this is the size of the portion of gluten that can have an impact on the gut of people who’ve got coeliac disease.

20 parts per million

Just 20 parts per million, and that can over time lead to lasting damage and ongoing symptoms. So you’re struggling with ongoing digestive pain, diarrhoea, bleeding perhaps from your gut, excessive bloating and gas. To manage the symptoms of coeliac disease, you have to be really strict and avoid it. So you don’t even get that 20 parts per million.

If you live with other people who also eat gluten and there’s gluten in your house, You have to be really strict. That means you have to not share butter because their knife with crumbs on it could scrape against the butter. And then you take that butter and put it on your gluten free bread, but you’re still getting contamination from tiny amounts of coeliac disease.

Making your kitchen coeliac safe

You need to have separate spreads and jams. You need to have no crumbs in the house. No crumbs in the kitchen. So for example, you’d need to ideally have a separate cupboard for all your food. That people who are eating gluten need to be wiping down surfaces. Not letting it come into contact with any of your body.

Example of gluten sensitivity

I worked with a client a little while ago who had coeliac disease. She was managing it very well but she often looked after some other children who came around after school. They would eat their snacks and she realized over time that she was getting some symptoms from the crumbs that they were bringing into the house. She was super sensitive to very small amounts. Just think like it’s on your feet then you might walk those crumbs upstairs they might get in your bed. You know that you’re just transferring small bits of gluten. Ideally you don’t really want any in your house if you are positively diagnosed with coeliac disease.

Being careful about gluten

Now that level of keeping gluten free is way more than most people who have IBS and tend to give up gluten are prepared to undergo. Maybe you have given up gluten but there’s no way you’re that strict with it you let gluten in the house like you eat from the same butter as your partner you know you’re not sweeping out your kitchen drawers every few hours to make sure there’s no crumbs Like, these things are necessary, but only medically necessary if you have coeliac disease. Most people don’t need to go to that extent when they’re gluten free. The problem is, is that you can’t diagnose coeliac disease by looking at somebody or by guessing.

Testing for coeliac disease

You do need to have a blood test in the first instance. That is looking for antibodies to the gluten in your blood. And then it might be followed up by a biopsy as well.

There’s also another way that you can get an indication if you might have coeliac disease, which I’ll come on to in just a minute. Because the blood test though is looking for antibodies, you only produce these antibodies when you eat gluten if you have coeliac disease. If you’ve got well managed coeliac disease and you’re someone who’s had it for years, you shouldn’t have high levels of antibodies in your blood.

And people who don’t have coeliac disease do not have these antibodies at high levels in their blood. So this is why it’s a really good test.

The doctor can just take a small amount of blood and test and know whether you have got a reaction to the gluten. But, unfortunately, a lot of people already give up gluten before they go for the test.

You need to eat gluten before the coeliac test

And the problem is with a lot of people that I work with is that you’ve already given up gluten and you’re quite loath to bring it back in again. For example, someone I worked with recently gave up gluten, felt a lot better when they did and they hadn’t had a test yet for coeliac disease.

So they had no idea whether they actually had coeliac disease or not. But they were not keen to go and get tested again. Because they didn’t want to get the symptoms back that they’d had. So one of the things I do talk through with my clients is about the difference between gluten wheat allergies and fructan intolerance.

Fructan is a type of carbohydrate, it’s a type of fibre basically, in whole grains. And that is much more commonly the thing with IBS you do react to. Sometimes it’s about your portion sizing of how much wheat you’re eating. Other people, I’ve helped bring gluten back into their diet, once we knew they didn’t have coeliac disease. I talked to them about how you don’t have to go back to eating it three times a day.

Take care about portion sizes

You don’t have to have cereal for breakfast, sandwich for lunch, pasta for dinner, you know, three big carb heavy wheat heavy meals. Just because you don’t have coeliac disease doesn’t mean that you should eat that much wheat. The way I’ve helped two clients in the last year, go to get this gluten test, because they were in that situation that they didn’t know whether they had coeliac disease or not. They were really keen to know because I kept stressing, if you do have Coeliac disease, you have to be that strict. I mentioned, keeping your kitchens clean, you know, excluding gluten from your home, et cetera.

And until you know that there’s no way you can just assume that it’s only IBS. Because if you are reacting to foods like bread and pasta. Who knows what it is you’re reacting to?

Use the FODMAP diet to calm your digestion first

The way I helped them to do that was through the FODMAP diet, so taking out all the fermentable fibres, allowing their digestion to calm down. Reintroducing a few other things, so we can get the diet a bit broader. A bit more back to normal, and then trialling reintroduction of wheat containing foods.

Now luckily with both of these people they managed to get on okay with that. Then they had to then eat gluten for six weeks in the run up to their test with their doctor. So the NICE guidelines in the UK state that a doctor should only diagnose IBS once they’ve ruled out other conditions, one of which includes coeliac disease because the symptoms are so similar.

So it’s a bit of an issue if you don’t go to your doctor, but also if you are not eating gluten in the runup to that test. You have to eat a little bit of gluten every single day, and it might be two Weetabix. Or maybe two pieces of bread, like a sandwich, or some pasta. So something containing gluten every single day for six weeks.

I mean if you miss one day, it’s not gonna ruin everything. But it’s just giving your body the best chance to make those antibodies that will show up in the blood test. Then your doctor can make a diagnosis. Get to a point where you can reintroduce wheat containing foods, then see if you can keep it going for six weeks.

What if you can’t face eating gluten to get tested? 

But if you’re nowhere near that, something else I’ve also done with a couple of people is to do a DNA test for the genes for coeliac disease. So I don’t subscribe to any genetic testing for my clients. I don’t feel like there’s enough evidence that for people I work with that knowing your genetic profile will help you in any way.

However, this is one exception. So what you can do is get a swab test of the inside of your mouth, just gets your DNA. Then you post that off and they look at whether your genes contain the single nucleotide polymorphism. It’s called SNP for short.  And it looks for some particular genes that only people with coeliac disease can have.

Ruling out coeliac disease

If you have these genes, it doesn’t mean that you’ve got coeliac disease. That’s really important to stress. All it means is that you have a predisposition to potentially have coeliac disease. So one of the people I worked with, who I mentioned, went through this process, had a family member who also had coeliac disease. A half sibling, so that was really important to rule it out because they were more likely to have it because they shared some DNA with somebody who also had coeliac disease.

So an important question for you might be has anyone in your family got coeliac disease? That will help give you a little nod to whether it might be worth going through this process. But the problem is that actually 40 percent of the UK might carry these genes and they don’t have coeliac disease.

A negative test

So knowing you’ve got the genes doesn’t really mean anything other than if you don’t have the genes, it can rule it out for you. So if you don’t have the genetic predisposition to get coeliac disease, then you won’t have it. But if you do have one or two of the genes then there is potential for you to develop coeliac disease.

But it doesn’t mean that you will get it. Importantly, what I also wanted to round up this episode with is saying you can have coeliac disease and IBS. Unfortunately some people don’t feel better even when they have really well managed coeliac disease.

You might have IBS as well, or maybe you have small intestine bacterial overgrowth as well. Around 30 percent of people with coeliac disease continue to get symptoms, even after they’ve managed it really well. Now, if that’s you, one of the things you might want to do is to look at whether you have got any other health conditions.

Keep going back to your doctor to check if you’ve still got symptoms because there’s something called refractory coeliac disease where you’re still getting the damage and the ongoing issues even though your exposure to gluten might be well controlled. This is where it can really help to work with a specialist nutrition professional, someone your doctor may recommend you to, who can assess your diet and ask lots of questions about your home. Just to make sure that you really know what you’re doing when you’re managing coeliac disease and not inadvertently exposing yourself to any.

Could you also have SIBO?

Other research just shows as well that between 11 and 18 percent of people who have coeliac disease. also have SIBO, that’s the small intestine bacterial overgrowth. So they’re much more likely to have a microbial overgrowth in the small intestine if you have coeliac disease and that might be down to disruption. Depending on the damage that was there, depending on lots of other things like your diet, all the similar same causes of SIBO may be applicable.

It’s also good to think about overall optimising your diet, even when you have a gluten free diet. Doesn’t necessarily mean it’s a good healthy diet. I know somebody who really struggled with constipation as a result of a very low fibre diet from being gluten free. So they were super strict about not having any gluten, really well managed but were really struggling with constipation.

Work on your fibre intake

And as soon as they were able to increase their fibre intake, from whole foods, then they could really see the benefit and really start reducing some of those symptoms because actually whole grains are a really important part of fibre in our culture, in our diet. And so if you’re taking that out, you’re going to lose a lot of fibre.

Some gluten free products can irritate IBS

Now, luckily, a lot of gluten free products are starting to really focus on fibre and adding it in foods such as ground lentils, maybe inulin. The problem is is that they are not great for some people with IBS. So again, where you have IBS issues as well as coeliac disease you may find that some gluten free products are actually triggering gas and bloating even though they are gluten free.

If you’re struggling with IBS and coeliac disease then please do get in touch and ask me about setting up a call where we can talk about what help you need with your diet and digestion so that we can get you feeling back to full health and feeling better again.

If you’d like to investigate working with me, I run a three month gut reset where I work with people on a one to one basis over three months. Giving you everything you need to turn your digestion around to reduce bloating, stop the uncomfortable and unpredictable symptoms of IBS.

If that sounds like what you need, then please do get in touch. 

Thanks for listening to this episode of the Inside Knowledge. Better digestion for everyone.