Getting Diagnosed, IBS & Low FODMAP Diet, Uncategorized
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The Low FODMAP Diet + Coeliac Disease: Two Years On

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It’s now been two whole years since I started on the low FODMAP diet, a medical diet used to treat IBS symptoms. You would think that one special diet would be enough, but in my case, the strict gluten free diet did not solve everything. Just when I thought I had the whole coeliac thing figured out, I started to get ill again. Daily upset stomach, pains and fatigue. Regular unexplained symptoms that were similar to those of coeliac disease, but which made little sense as I knew I was sticking to the gluten free diet. Apparently, this is not uncommon. 20-30 % of coeliac patients on a gluten free diet still have irritable bowel syndrome (IBS) symptoms’, according to one study*, and the low FODMAP diet is now a recommended treatment.

(Read about my experience getting diagnosed, and the low FODMAP meal ideas that helped me to stay sane.)

I thought it would be interesting to check in a couple of years down the line, share with others in a similar boat what I have learned, and hopefully hear a few of your experiences too.

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It’s a bit like becoming coeliac all over again 

 
When starting on the low FODMAP diet, I had to rethink everything I ate. Go back to squinting at labels, checking everything I put in my mouth against a special ‘FODMAP’ app and being the awkward customer and guest. Initially, the stress of trying to follow the diet seemed to outweigh the benefits of it. It is wearying to have to check every single thing you put in your mouth against a checklist, to say no to delicious foods all the time and cook every single thing from scratch. It takes up a lot of mental space, and even as someone used to doing all of the above for the gluten free diet, it was hard. I wasn’t prepared for quite how upsetting I found it. As someone who was diagnosed with coeliac disease when I was very young, it gave me a new appreciation for how tough it must be to start on the gluten free diet later in life.

You need to cut out healthy foods, too

 
Counter-intuitively, on the low FODMAP diet you actually cut out a lot of healthy foods (part of the reason it is not intended to be a strict diet for life). Fruits, vegetables, pulses, things that you think you *should* be eating. A lot of these healthy high FODMAP foods were former staples of my diet, and things that I enjoyed eating and cooking with. Onions, garlic, pulses, apples, tinned and dried fruit, milk, yoghurt, mushrooms, sweet potatoes, avocados. I had to empty my cupboards and go back to the drawing board.

Onions and garlic are in EVERYTHING

 
I mean really, everything. They are staples in pretty much every cuisine, and I find these are the hardest things to avoid. During the strict elimination phase, it made it very difficult to buy any sort of prepared food, or grab something to eat on the go. If you don’t know how to cook from scratch, you’d better learn! Garlic oil + herbs and spices are an ok substitute when you need to add flavour to your cooking. Bizarelly, I also found that apple extract and fruit juice are in a lot of processed gluten free foods, as well as ingredients like xantham gum and psyllium husk, which can irritate the gut.

You need to make sure you are getting enough nutrients

 
Apart from the fact that dairy is pretty much my favourite food group, I was concerned that in cutting out milk, yoghurt and certain cheeses, I would be losing a lot of calcium. (Coeliacs have a higher than usual propensity to develop osteoporosis, so we need a helluva lot of calcium). I found seeing an NHS dietician crucially helpful for this. She gave me advice on other calcium-rich foods I could eat (e.g. kale, spinach, sardines, fortified orange juice).

Eating Out is difficult, but not impossible

 
It is hard enough to eat out safely as a coeliac, but avoiding FODMAPS adds a whole other layer of complication. Gluten free options are everywhere, but low FODMAP options are non-existant. Working in Central London, I had gotten used to eating out fairly regularly both for socialising and work (lucky, I know!), so I found it tough to have to start carrying my own food everywhere and constantly be thinking about my next meal.

Soothe Food Supper Club

My favourite discovery was the Soothe Food gluten free and low FODMAP supper club. I had a couple of lovely meals courtesy of Emma, and would definitely recommend it. When I did manage to eat out elsewhere, the safest bets I found were plain steak and chips or a gluten free pizza with low FODMAP toppings. Also, Indian Jain food. I found an Indian restaurant near Oxford Circus which has an onion/garlic-free menu.

No, I’m not trying to lose weight!

 
Telling people you are following a low FODMAP diet is even more tricky than telling them you eat gluten free. Most people do not know what FODMAPs are (Fermentable, Oligo-, Di-, Mono-saccharides and Polyols), and it is not that easy to explain in layman’s terms. It’s not black and white like ‘I can’t eat gluten’; there are several different types of food you have to avoid / eat reduced amounts of, and you eventually start reintroducing some of these, which can be confusing. Frustratingly, even when I stressed that I was doing the diet for medical reasons because I had been told to by a doctor, some people still assumed I was doing it to lose weight. I hate to be thought of as faddy, and I was kind of offended that they thought I needed to lose weight!

Moderation and balance 

 
Happily, the low FODMAP diet (alongside my permanent strict gluten free diet, obv) combined with some lifestyle changes has worked well for me. Two years on, I feel healthy about 80-90% of the time, which is fantastic. Making some lifestyle changes to reduce stress has also helped, and though I was skeptical at first, I find yoga great for keeping mentally and physically well. I still try to avoid certain trigger foods (onions for one), but I am far from strict with it. Moderation is key. I try to eat low-ish FODMAP at home, so that I can eat more freely and not deny myself when eating out. I also try to avoid eating too many highly processed, rich or fatty foods (e.g. gluten free bread full of gums and thickeners, a full roast dinner) as I find these don’t agree with me, and rarely drink more than a couple of glasses of wine. Touch wood, these things keep me feeling well. I think I’ll probably always have to pay attention to my gut and consider the food I am eating, but ultimately, I’m glad that my issues could be solved (or at least alleviated) with something as simple as food.

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feeling happy and healthy in Lisbon.

Please bear in mind that all of the above is my personal experience. The nature of IBS and gut disorders means that your experience may vary. The FODMAP diet should be undertaken under advisement from a dietician, and it does not work for everyone.

I’d love to hear your thoughts if you have also been on the low FODMAP diet, whether for a year or two or just starting out. Has it worked for you? How do you manage it after the initial elimination period?

Your’s low-foddily,

Issi x

Further reading

 
Monash University (creators of the low FODMAP diet) – Keep an eye on the research team’s website for the latest updates to the diet. Their app is invaluable for checking which foods you can eat, and getting recipe ideas.

Gut by Giulia Enders – Explores the inner workings of the gut in a fun and accessible way. A very interesting read if you are living with any sort of gut disorder.

Latest FODMAP research – There is some very interesting research being done into the efficacy of the low FODMAP diet at the moment, with findings such as this:

*’20-30 % of coeliac patients on a gluten free diet still have irritable bowel syndrome (IBS) symptoms….Patients with coeliac disease and IBS-symptoms had significant improvement in abdominal symptoms and physical health from a low FODMAP diet for 6 weeks. A gluten free diet with reduced FODMAP content was more effective than a more strict gluten free diet, and should be offered to coeliac patients with refractory IBS-symptoms on a gluten free diet.’ – read abstract here (click ‘Coeliac Disease for the Clinician’ and then look at 16:57 – 17:09)

King’s College, University of London are also conducting research in this area.

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9 Comments

  1. Lynn B says

    Issi
    Thank you so much for this information. It is me!The onion and garlic are right on target. I knew that I had IBS but I was diagnosed less than a year ago with celiac disease. This is explains why I have been having diahrhea even when I have been eating gluten free. I used to travel frequently but I am afraid to do it as I might have an accident and embarrass myself. I have a family member spending the semester in London. We would like to hook up with him at the end of the semester and travel around Europe but I am very worried about doing it. Do you have any advice?

    • You’re welcome Lynn. I know when I was first ‘diagnosed’ with IBS symptoms there was so little information about the low FODMAP diet, and barely any personal experiences out there. I find it is can be helpful just to read that someone else is going through the same stuff that you are. Symptoms can also be caused if you consume a small amount of gluten (e.g. through cross-contamination) of course, but if you are being really careful and still getting ill, it is worth investigating. My advice would be to go back to your doctor and explain that you are having these ongoing symptoms, and get tested for any conditions that could cause it. Bowel issues can be symptomatic of many different issues so it is important to make sure it is not something more serious before self-diagnosing with another food intolerance or going on the low FODMAP diet. I’m guessing you are not in the UK so it may work differently where you are, but for me, I was referred by my GP to a gastroenterologist and a dietician. There are plenty of safe gluten free options in London and certain parts of Europe, so I hope these issues won’t put you off coming over. :) Issi

  2. I am very impressed, I find being a coeliac hard enough (I don’t mind the change in diet, it’s the pain when I’m out and the added hassle for my wife and friends that I hate). Whilst I’m not 100% right all the time, I assume this is related to cross contamination when out and I don’t want to complicate life any more than it already is. One question I have, do you have a reaction to red wine if you drink it?

    On a separate note have you heard about the development of Barley that has the enzyme that is a problem for coeliac’s removed, it is becoming commercially available. I know they have also produced Wheat that is the same but is only growing in Labs at the moment.

    • Thanks Hugh. To be honest I find it hard to differentiate between a mild coeliac reaction and an IBS type reaction triggered by eating FODMAPs. However, I have found that the low FODMAP diet has helped me feel a lot better and reduce my symptoms to an occasional nuisance rather than a daily grind. It is a hassle though to learn a complicated new diet on top of the gluten free one.

      I don’t *think* I have a reaction to red wine, but I rarely drink more than a glass or two of it at a time. Do you? During the elimination period of the FODMAP diet you are advised not to have more than 1 glass of wine in a day, as alcohol can be a gut irritant. Now I am back on a normal-ish diet, I occasionally have more, but drink less than I used to, as I can’t seem to tolerate drink as well (perhaps just part of the ageing process?!).

      I hadn’t heard about the barley development. I know they have codex wheat in a number of gluten free products, which is made to be suitable for coeliacs. I will keep an eye out for info.

      • Hugh Stirling says

        Hi, I do drink red wine but my consultant suggested it may contribute to my IBS. I’m very into wine so it was non negotiable – I don’t drink huge amounts but certainly 2 nights in a week (more white in the summer). I have been monitoring my red wine intake with coeliac symptoms and it doesn’t seem to make things any worse. As to FODMAPs, I’ve lived post Coeliac with some IBS ever since diagnosis, and you are the first person to mention this. My consultant (Who I have not seen for ages) had me try taking a high fibre supplement but it made no difference so we stopped that but he did not suggested anything else.

        • That’s interesting that red wine was suggested. I would struggle to give it up too!

          It is perhaps not surprising that no one has mentioned it to you yet. FODMAPs seem to be a relatively new area, the diet was only started a few years ago and is still being developed. I may have been very lucky to come into contact with a dietician who knew all about it – at the time I was registered at a Central London teaching hospital (Chelsea & Westminster), maybe they were slightly ahead of the game.

          I would suggest having a look at the research linked above – the conclusion: ‘A gluten free diet with reduced FODMAP content was more effective than a more strict gluten free diet, and should be offered to coeliac patients with refractory IBS-symptoms on a gluten free diet.’ May be worth bringing up next time you are having a check up, especially if you can get referred to a dietician.

  3. So much of this is me / I can totally relate to it. Garlic & onion… not being able to actually eat as healthily as you want to… etc. Such a pain!

    • It is! I find it a lot easier now that I can eat most things in moderation, and don’t have to worry so much about eating the wrong thing when out and about, but the 6 week exclusion period was hard work.

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