Ankylosing spondylitis: What should I eat?

Diet and lifestyle tips for managing your autoimmune disease...

Hello all,

I hope you are all ok? Especially with all the storms and flooding going on!

So this week I want to talk about my journey with my autoimmune disease, ankylosing spondylitis (AS), and my diet.

(Note: When I say diet, I mean the food and drink I consume, not diet as in the restrictive/fad diets that people do only to lose weight).

Personally, I have found that my diet has a huge impact on my autoimmune symptoms and overall health and wellbeing. I know that may sound obvious, but a lot of research I have read can’t quite decide if diet impacts AS or not, or to what extent. Other autoimmune diseases, such as Inflammatory Bowel Disease (IBD) are not caused by diet, but certain foods can exacerbate symptoms during a flare up. Overall, it seems that a lot more research needs to be done in regards to autoimmune disease and diet.

When I was diagnosed with AS, things like medication and exercise were briefly mentioned, however diet was not. Which surprised me, seeing as 80% of your immune cells are in your gut!.

I have found that there is a lot of conflicting information out there about what diet I should be following. Some people say I must follow the low starch diet. Others say the Mediterranean or the anti-inflammatory diet! It can all get a bit overwhelming. So in the end I stopped listening to hearsay and started listening to my own gut, quite literally…

My gut journey so far..

For over ten years now I have experienced bloating, diarrhoea, cramping/pain and urgency, amongst others. It has times of flaring up and other times where it’s relatively calm, but I still have to be very strict on what I eat even in those calmer times.

For years I was told by Doctors this was IBS, however due to my recent diagnosis of ankylosing spondylitis (and the link between this and inflammatory bowel disease, along with my family history of bowel cancer), I was sent to the gastroenterology team for further investigations.

Last week I went for a colonoscopy (which you can read all about in last week’s article below)

Listening to your gut could save your life...

I am currently awaiting the results of that test to determine if I have IBD, or if it is indeed ‘just’ IBS (I put ‘just’ because whilst it is different and less severe than IBD, it still has a huge impact on people's lives).

Over the years I have tried various medications, such as Imodium, Buscopan and Mebeverin, however none have helped. My GP would give me very generic information about how to improve my diet, but some of the information they gave me made my symptoms worse. For example, they told me to increase my fibre intake which made me so bloated that I couldn’t do the button up on my jeans and I nearly passed out from the painful cramps it gave me. They eventually sent me to an NHS dietician who put me on the Low FODMAP diet, which did help a little, but I still had a long way to go before I felt any real improvements.

Now I cannot overemphasise enough how debilitating conditions like IBS and IBD can be. When my symptoms were at their worst, I could barely leave the house in fear that I would have a flare-up. It made my job as a community nurse virtually impossible to do and was one of the reasons why I had to eventually leave. I could not stay over family/friends in fear that I would have a flare-up. Travel would be hard and stressful, so much planning had to go into it. Going out to restaurants was a minefield. My social life and relationships took a nose dive. My relationship with my body and self-esteem got severely knocked. There is still so much stigma and embarrassment attached to talking about these symptoms, so I often felt very isolated and depressed. I also found that GP’s didn’t take these symptoms seriously. They would often dismiss my concerns, which lead to further isolation and confusion.

So once again, I had to tackle this problem mostly by myself to try and find some help and relief. I took a deep dive into research. There was a whole lot of trial and error going on in those years. Some things helped, others didn’t. Some things worked for a bit, then stopped working. It was (is) all very tiresome. Every day I have to be very careful in the decisions I make and the food I put into my body. It’s very easy to get consumed by it all, and I can see why it could lead to some people experiencing dangerous eating disorders because of it. This is why I am very cautious not to tell others to follow such strict diets (unless of course its due to an allergy etc). You have to take what I say with a pinch of salt and also do your own research.

So, what have I learned over the years?

That there is no one-size-fits-all. Sadly, there is no quick fix. There is no one diet that will cure everything (for me anyway).

I believe that each person will have to go through their own journey to find out what works for them. There are so many different factors involved. I found that it wasn’t just what foods I ate, but my whole lifestyle that needed to change.

So what has worked for me?

Now I must emphasise how this won’t be the same for everyone. There are so many variables, it’s impossible to have one diet that would work for everyone. Our bodies and gut microbiomes are so incredibly unique, that it would be impossible for us all to eat the same foods and have the same outcomes. Our lifestyles and environments vary enormously. Things like medications, allergies, personal preference, finances, culture, energy levels, and co-morbidities will all come into play.

I am not saying ‘Hey guys, do what I do’. I’m writing this to say ‘Hey, this has worked for me. What has worked for you?’.

Let’s share some general ideas/tips. I like to think that the more we all talk about it, the easier it will be to spot trends and similarities.

[Warning: I must also point out that restricting certain foods or cutting out whole food groups without the guidance of a professional, such as a dietitian or nutritionist, is unadvised. It can have very serious consequences to your body and metabolism, so please seek professional advice where you can]

General rules I stick to for a healthy gut:

• Reduce caffeine intake. I stick to 1 cup of coffee a day. Any more and it causes me heart palpitations, upset stomach and increased anxiety. However, I love my coffee and I don’t want to live without it. It helps me to function in the mornings. There is also some compelling research coming out regarding the benefits of coffee (in the right doses).

• Keep hydrated. I drink lots of water. I also have 1 electrolyte tablet each day, which seems to really help with my fatigue levels.

• I try to avoid fizzy drinks as all the gas and sugar really hurts my stomach.

• I have stopped drinking alcohol. Research says that alcohol increases the inflammation in your gut. Sometimes I will have a glass of bubbly on special occasions, although this is pretty much guaranteed to flare me up in some way, so it’s always a bit of a risk.

• I reduce additional sugars. Research says that high sugar intake can increase the ‘occurrence and aggravation of inflammation’. It also increases the risk of getting colon cancers. I find this one hard because I bloody love sugar. I know I could never cut out sugar altogether because my life would be so sad otherwise. I need the occasional cake and donuts and pastries to get me through, but I try to have these in small quantities and mainly just on weekends as a treat.

• I try to avoid artificial sweeteners. They not only flare up my bowel symptoms but also seem to give me bad headaches? Some research that I have read says that artificial sweeteners ‘may induce pro-inflammatory changes in gut bacteria and gut wall immune reactivity, which could negatively affect individuals with or susceptible to chronic inflammatory conditions (like IBD)’.

• Reduce gluten. Some research shows that gluten is a proinflammatory molecule. Interestingly, multiple NHS Doctors have recommended I reduce gluten in my diet due to its inflammatory effects on the body. Be careful of some of the gluten free alternatives though, as they can be packed full of chemicals and they can upset your tummy more. I haven’t cut out gluten altogether as it’s very restrictive. However, if I am to have gluten, I will only have small amounts, and go for something like a fresh slice of sourdough bread instead.

• This one could be seen as controversial, but for me personally, lean meats (like chicken) are one of the few things that never upset my tummy, so I have chosen not to be vegan/vegetarian for this reason. I also eat a lot of fish which is a good source of omega-3.  

• I try to reduce fatty meats e.g. sausages, bacon, burgers. But again, I will eat them on special occasions because they are yummy and life would be sad without them. I couldn't live without them at Summer BBQs!

• Fibre. This is one I am still grappling with. I know that fibre is so important in your diet and most research says that it actually reduces inflammation in your body, yet high fibre foods will give me serious pain, bloating and upset stomach. The trick is to go low and slow with fibre. I started with tiny amounts and worked my way up. I’ve trained my bowels over the years to tolerate slightly more fibre, but I have to be very careful. When I am having a flare up of my bowel symptoms I will go back to a low fibre diet to give it a little rest. Most of the time I try to avoid big doses of things like beans/lentils, vegetables like cabbage/broccoli. I will still have them, but in smaller quantities. Green leafy vegetables like spinach sit well, so I have more of those.

• Following on from that, I try to eat a good variety of fruits and vegetables- Getting as much of the ‘food rainbow’ as I can to get all the various vitamins and minerals needed. Fresh herbs are a great way of getting more veg into each meal.

• If I could afford it, I would buy only organic fruit and vegetables and buy only grass fed, organic meats. This would be to avoid all the nasty chemicals e.g. pesticides and antibiotics used which harm your microbiome over time. But sadly, they are still more expensive and we can’t always afford them. Hopefully this will change over time. Buying healthy foods should be the cheaper, easier option don’t you think?

• I try to reduce my intake of highly processed foods e.g. pizzas, frozen ready meals etc. I cook from scratch most nights with simple fresh produce. It is hard work some days due to my fatigue levels, but I really want to prioritise it because it makes such a difference to my overall health and energy levels. But, I will also not say no to these foods occasionally either due to convenience.

• I eat low-no dairy. If I drank a glass of milk I would be very ill, yet I can tolerate small quantities of cream and certain cheeses? I know, it makes no sense. I replace most dairy with alternatives like coconut, almond and oats e.g. oat milk, coconut yoghurts etc. I try to get the ones that are fortified with vitamin B2/B12. I still eat cheddar cheese, but lactose free versions.

• I don’t eat really spicy foods e.g. a lot of chilli. Although I will add a lot of different spices like turmeric and cumin to my curries, as they are said to have anti-inflammatory benefits. If your tum is sensitive to garlic (like mine is), I use a seasoning called ‘Asafoetida’ which mimics the taste of garlic, but no upset tum.

• I take probiotic tablets when I feel my symptoms starting up again, or after taking antibiotics (which are known to upset your gut microbiome). I also started taking them again after my colonoscopy for a week or two, to help build up the healthy bacteria in my gut again. My dietician recommended Optibac, but please do your own research and see if these are the right ones for you. There are many different types out there. The first few days of taking them makes me a little more bloated, but then they balance out.

• I’ve also found that eating reheated foods can trigger my symptoms. This confused me at first, but upon investigation, apparently it might be due to resistant starches. They can be harder to digest, leading to fermentation in the gut, which causes gas/bloating. When you reheat certain foods e.g. potatoes/pasta, it changes the structure of the starch molecules making it harder to digest. However, they are fine if I eat them freshly cooked.

Other Triggers

Other than diet, there are a few other triggers that I have identified over the years that are pretty much guaranteed to flare up my bowel issues and my autoimmune symptoms:

• Stress (a HUGE trigger for me). Journaling, meditation, rest, deep breathing exercises, setting boundaries, therapy, relaxing activities like baths/self-care, have all helped reduce this over time.

• Hormones. My menstrual cycle deeply impacts my gut and will also flare up my AS symptoms. I have to be very kind to myself around this time of the month (and the week before it). I usually slightly lower my fibre intake the week of my period to help ease the bloat.

• Lack of sleep. If I have a bad nights sleep, everything else in my body will suffer. I have to prioritise sleep by sticking to a strict schedule. Trying to go to bed at the same time each night, and waking up at the same time each morning really helps.

• Travel. I’m not sure if its due to the different routine or the different kinds of foods perhaps? But I’m pretty much guaranteed to get an upset tummy when I travel, the joys. I try to be prepared and plan around it.

• Not sticking to a good routine. My husband and I try to eat at similar times each day. Give yourself plenty of time to properly digest before bedtime. I try not to eat anything at least 3 hours before I lay down to sleep, otherwise I get bad acid reflux and bloating.

• Skipping meals. If I don’t eat regularly, the acidity seems to build up and triggers bloating. So even when I am in a flare up of my bowel issues, I continue to eat something, even if it’s just broth and crackers, otherwise it makes everything worse. I'm more of a grazer anyway, smaller but more frequent meals/snacks seem to work.

• Feeling unwell e.g. infections, a cold etc. I try to eat really well during these times to lower the chances of a bowel flare up or worsening of my autoimmune symptoms. 

• A lack of movement. Light stretches or a gentle walk aids my digestion and reduces bloat. It also really helps with my arthritis and stiffness. I do have to be careful not to over do it though due to the fatigue I experience with the AS.

• This is an odd one, but restrictive clothing! If I wear too tight jeans, I will bloat up, not just feel bloated, but it will actually cause me to bloat up. So I only wear comfy clothes now. It’s not worth the pain.

• Heat. In the summer or when it’s very humid, it will make me bloat up for some reason. I also have to be careful with hot water bottles. They can sometimes help to reduce the bloat, but other times it seems to cause more inflammation. So when that happens, a cold compress seems to do the trick.

What else have I found useful?

• Changing how I view food. It’s been worth while spending time on getting to know my body and what foods it can tolerate. I don’t see it as a short-term fix, but a long-term, way of life change. Try not to get too disheartened if something doesn’t work immediately.  This will take time. I try to avoid those fad, fashionable diets that promise the world. Your diet needs to be sustainable and nourishing. Your body is already working overtime fighting against its own immune system. Be kind to it.

• Please ask your GP for advice before making any drastic changes to your diet, or push for a referral to a dietician if they aren’t giving you much help. Personally, I think everyone should get an automatic referral to a dietitian once they have been diagnosed with an autoimmune disease, as there is such a strong link between the immune system and the gut. This would help people come up with a safe, individual and healthy food plan. A girl can dream hey!

• Try to do one thing at a time. Don’t cut out loads of foods, or reintroduce multiple foods back into your diet all at once, because it will be impossible to tell which particular food has been the culprit. I give each thing at least 3-4 weeks.

• Writing a food diary has helped me. I have identified certain triggers this way. My dietician gave me a great bit of advice. I tried desperately to find the reference for this, but couldn’t find the leaflet she gave me. But she said that some foods can continue to cause inflammation/irritation to your gut, for up to 30 days after initial consumption. So even though you have pooped it out, it can still be causing you irritation. This is why I would get so confused. I would eat something, say chicken, potatoes and broccoli, which would trigger my symptoms. So I wouldn’t eat broccoli again for weeks assuming it was broccoli that caused the flare up. However, I would still be getting symptoms two weeks on, so I then presumed it was something else I was still eating like the potatoes, and would avoid that thing too, but I would then eat potatoes again another time and get no symptoms. You start to think you can’t eat anything because everything seems to flare you up, even though it was only that original food. You get me? So it takes a long time to really get to know what your triggers are. You have to invest time and make many notes.

• Prepare. Each week I make a meal plan and try to stick to it as much as possible, but it’s also important not to be too strict. Don’t beat yourself up if there is a change of plan. You do still have to enjoy your life. I have treats, but I try to keep it balanced. It also hugely depends on my energy levels. I can’t make a fancy meal if I’m running on low battery. I have found it useful to make some recipe cards with my favourite, quick meals on them. I list out all the ingredients I need,  so that when it comes to thinking of what you can eat, what to buy, making a shopping list etc, it makes it a lot less stressful and requires little brain power.

• If I’m going out to eat at a restaurant, I try to look up the menu ahead of time. Don’t be shy about asking for modifications or clarification on the menu. You deserve to enjoy yourself too and to feel safe in what you are eating. Don’t feel rushed or pressured into eating what everyone else is having. You are not causing a fuss or being unreasonable, despite what some people may imply. They just don’t understand how hard it can be to have diva guts.

• But overall, Don’t let it stop you from living your life and having fun (easier said than done I know). The frustrating thing for me is that the more I stress about all of this, the worse my symptoms get. So over the years I’ve had to learn to work with my body, instead of working against it. It is trying it’s best, although it may feel like it hates you.

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How about you?

Do you find that your diet affects your chronic illness? Or does medication manage most of your symptoms? Do certain foods trigger your symptoms? Is there a particular food plan/diet you stick to? Other than food, are there any other triggers you have identified? Are there any general tips you would like to share with us? I would love to know in the comments.

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I hope you found this helpful. Sending healing thoughts to you all.

Lots of love & hugs,

Amanda x