ME, my digestion and I…an unhappy threesome

13 Jun
Me and my Food Baby.

Food baby bloat. Photo credit: Madyln via Morguefile.com

Eurrrrrrrggh. I think I’m having a food baby, probably twins, maybe even triplets. And no it’s not because I’ve over indulged and stuffed myself silly. Hand on heart, pinky promise, honestly it’s not. And before Mr B asks the inevitable question ‘what have you eaten that you know you shouldn’t have…’, again hand on heart I haven’t eaten anything bad. Nothing at all.

And yet my insides seem to hate me. More specifically my digestive system seems to hate me.  And I really don’t understand why.

I’ve never treated it particularly badly. Of course I’m no food angel and I have eaten my share of junk food and fast food, but to be honest not half as much as many people and very little in the last few years.

I grew up with a very food savvy and health conscious Mum who fed us brown rice, chickpeas and spinach from an early age. We didn’t go to Maccy D’s (tho as a kid I desperately wanted to!). I grew up with a genuine like (which blossomed into outright love as an adult) of beans and pulses.

Although I do love a nice juicy steak smothered in Bearnaise sauce and could never give up meat for good (I love bacon too much) for the last few years I’ve eaten veggie a lot of the time with just chicken and fish as my meat choices.

I’ve not eaten wheat or gluten for over 8 years thanks to a severe gluten intolerance and for the last few years I’ve avoided lactose heavy dairy as well.

I do love cake and sweet treats, but we make cakes with vegetables in them in place of butter for God’s sake! Sometimes I really do wonder what I’ve done to deserve such a disruptive digestive system!

IBS has been part of my life since I was 21, since one particularly bad night at Uni where I knelt doubled over on the floor in agony as the stomach cramps and pain became excruciating. I can still see myself on the floor of my college room crying and talking to my Mum on the phone. That night I went to bed in tears, hugging a hot water bottle to my distended abdomen. At that point I realized I couldn’t keep ignoring the bloating (often to the point that my top didn’t meet my jeans as my tummy protruded as if I were several months pregnant), constipation (for days…) and pain that I’d been suffering from every day for over a year. I had to go to the doctors . My dear Nan had recently been diagnosed with bowel cancer and I was terrified of finding out the same for myself. Hence the head in sand approach for a long time.

But that night kneeling on the floor, enough was enough. The next day off I went to see my GP, and hey presto they told me I had IBS. I had no idea then what those three little letters actually meant. I was pretty bewildered. They sent me away with some horrible orange fiber gel supplements that made me even more bloated and nauseous.  It was immediately apparent that I was going to have to manage the IBS on my own, with the love and support of my family and not the medical profession.

And so my obsession with what is safe for me to eat began.

Very quickly we realized wheat and gluten were a big no-no for me. They made me bloat, made me super constipated and also made me very fatigued. The latter was really obvious when I had to do a gluten challenge for a celiac test a few years ago (yes it took over 5 years before a doctor actually thought about testing me for celiac). I had to eat gluten for two weeks. In a weird kind of way I enjoyed it. Being able to eat foods that had been off limits for so long was amazing (I think I ate enough chocolate digestives during that fortnight for a small army – see I am no food angel given half a chance) but falling asleep every afternoon, literally unable to keep my eyes open, and feeling even more fatigued than usual (my ME was bad by this point) was no fun whatsoever. The test was negative. I’m not a celiac but have a severe gluten intolerance, apparently pretty common in ME/CFS patients.

Over the years I managed to keep my IBS symptoms in check with the gluten and wheat free diet. I followed an anti-candida diet initially too. This involved my Mum coming to stay one weekend in my final year of college and basically taking every foodstuff out of my kitchen cupboards. On a anti-candida diet there’s not a lot you can eat! This approach didn’t help much. What did seem to be effective was a low sugar strategy. Though I quickly learnt that too little sugar is very bad for you. One night in my final year, I was studying in my college room and the words started swimming on the page in front of me. Pictures started moving on the walls. I felt incredibly light headed and dizzy. I rang my friend pretty hysterical and terrified and she came over with a large supply of Dairy Milk which calmed things down at my head (but didn’t help my digestion in the slightest). So I continued to eat a low sugar diet but not a no sugar diet. We worked out that low GI fruits (berries mostly) were a safe bet whilst bananas and apples were not. We started to use fruit sugar in our baking to minimize my refined sugar intake. This seemed to help my poor digestive system.

I also had regular acupuncture and this was pretty effective at reducing the pain and bloating. Somebody told my Mum linseed was a wonder drug for constipation and so it was! I took  linseed every morning and it worked a treat at keeping me ‘regular’!! But the minute I fell off the gluten free wagon (when I was young and stupid usually late at night when I’d been out and drunk too much…) everything quickly ‘blocked’ up.

So over the years I’ve become stricter and stricter with my diet. And since having ME/CFS to contend with as well as IBS (gotta love all these medical acronyms), gluten, wheat and dairy free along with the daily  linseed has been my saving grace. That is until the last 6 months or so, when it seems nothing will pacify my poorly insides and my food baby is my constant companion.

So there we have it, a potted history of ME, my digestion and I! Next post, I’m going to talk abut the last 6 months, in the hope of figuring out what the hell has gone wrong, because at the moment I HAVE NO IDEA!

Do you suffer from IBS? For your sake I hope you don’t but if you do, what are your tips and tricks? Our bowel habits are not exactly a favoured dinner table topic of conversation, but lets share here what works and what doesn’t!

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21 Responses to “ME, my digestion and I…an unhappy threesome”

  1. things that give me a headache June 13, 2013 at 6:39 pm #

    I’ve dealt with IBS since I was around 13 or so. It would come and go depending on my stress levels, what I was eating, etc. I now find that taking a magnesium supplement (I use Natural Calm) every night helps. It also helps with my migraines and general achyness. I give both of my kids magnesium supplements at bedtime, too. One of my kids suffers from something called encopresis (I won’t go into details but you can look it up) so we have to be pretty diligent with it.

    • myjourneythrume June 15, 2013 at 7:48 am #

      Thank you for reading and commenting. It must be very hard having to be so careful with food for your children. I’m grateful I was an adult before IBS hit me. I will definitely look into magnesium supplements. I take a calcium and magnesium combo supplement at the moment but not sure the magnesium part is particularly high (think it’s included just to help the calcium absorb). Thanks for the tip!

      • Molly (Sprue Story) June 18, 2013 at 1:40 pm #

        I wholeheartedly relate because even though I did get diagnosed with celiac, my symptoms are exactly like yours (and still haven’t gone away, even on my gluten-free diet, though I’m hoping…). I too take large amounts of magnesium (1000 mg/day currently, though I want to cut back because I’m starting to think in that amount it’s actually contributing to my end-of-day bloat) and that has been the thing that has helped me the most with constipation (not much help for bloating; some of it went away with the constipation but not all). Annoyingly, although magnesium increases the absorption of calcium, calcium decreases the absorption of magnesium, so when you take them together you probably aren’t getting the full impact of the magnesium.

      • myjourneythrume June 18, 2013 at 2:56 pm #

        Thanks for reading and commenting. I’m sorry to hear that your diagnosis as celiac and switch to gluten free hasn’t resolved all your problems. That must be so frustrating. Do you think you’re intolerant to another food group, dairy perhaps? It’s so hard to know isn’t it. That’s interesting what you say about the calcium and magnesium and also highly annoying – not helpful that calcium decreases the magnesium! Let me know if you get to the bottom of your end of day bloat, I’m not going to be beaten, am determined to have a nice flat happy tummy!!

  2. Chrissy Faery June 13, 2013 at 7:05 pm #

    I love this post, we have so much in common! My dietary issues got really bad at uni as well, and I’m also severely intolerant to gluten!

    I’ve been cutting more and more things out of my diet as the years go by too, to try and figure out what still seems to be causing the problem.

    I found that cutting out gluten, dairy, soy and tomatoes have helped me the most and I also paid for a blood test a few years ago, which showed that I was also intolerant to eggs, so I don’t eat those now either! 😦

    Although I feel a lot better than I did, I still get ‘pregnant’ days every so often though – and I’ve still got no idea why! I really hope that one day we can both figure out what’s causing this!

    As for tips, I only have one! Don’t buy trousers when your belly is huge! Hehe! I got some the other day, which fitted fine when I put them on, but by the afternoon the swelling had gone down and I was left holding them up to prevent public humiliation! Not good! 😀

    I hope your belly feels more confortable soon! *hugs* x

    • myjourneythrume June 15, 2013 at 7:53 am #

      We do have so much in common! It’s nice to know there are others who totally understand isn’t it. Some days it seems to me that it doesn’t matter what I eat I still look pregnant! Maybe I’m just fat…! No seriously the bloating sensation is horrible isn’t it. My abdomen gets so tight and tense and hard, feels like the skin might rip it’s being stretched so much. Horrible. Anyway, I’m glad to hear you’ve figured out your triggers. I’m beginning to think tomatoes and raw salad in general is not so good for me. I love your tip about the trousers, very funny!! Been meaning to ask you, did you get another wheelchair in the end? Hope you have a ‘good’ and flat belly day 🙂 Jx

      • Chrissy Faery June 18, 2013 at 6:56 pm #

        🙂 Yeah, it’s so great to know we’re not alone! ♥ Being so bloated is horrible though, I really hope you start to feel better after eliminating some more things – it really is trial and error trying to figure this stuff out isn’t it! *hugs*

        Ohh!! Yes, I got the chair you recommended and I ♥ it!!! Thanks so much for telling me about it, it’s SO much nicer, and comfier, than the one I had to send back, and so much easier on my mum too, she hasn’t ran over any small children in a few weeks now! Hehe! xx

      • myjourneythrume June 18, 2013 at 7:53 pm #

        Thanks Chrissy, I hope so too! Fed up with looking pregnant all the time! So glad the chair is working out for you, my mum and I are still knocking over small children and supermarket displays 😉 Jxx

      • Chrissy Faery June 19, 2013 at 7:13 pm #

        Teehee!! 😀 Wheelchair calamities eh! My Dad left me on a slope the other day and walked off!! And I thought mum was a bad driver! Hehe xx

  3. Luke June 13, 2013 at 9:24 pm #

    I had crippling bloating, cramps & acid reflux until recently. I found the low FODMAP diet my dietician put me on to be a major revelation in my life. It’s been difficult to follow but I am slowly coming to terms with it. Many things that I enjoyed eating, and presumed were good for me, turned out to be adding to my pain. Apples, pears, honey, asparagus, peas, etc. I’ve cut them out and feel infinitely better because of it. I no longer go to bed wincing in pain at 9pm 🙂

    • myjourneythrume June 15, 2013 at 7:57 am #

      You beat me to it! I’m going to talk about FODMAPs in my next post. I recently did the elimination diet but I still bloated a lot. They say the FODMAPs diet helps about 75% of IBS sufferers, guess I’m in the other 25% which is highly frustating! V glad to hear you’ve found relief with the diet though. that must be amazing. Thanks for reading and commenting. 🙂

  4. Sharon June 14, 2013 at 3:41 am #

    A definite yes on the IBS. I think I’ve probably had it most of my life, although it wasn’t diagnosed until a few years after I was diagnosed with CFS/ME. By a slow process, I’ve learned what bothers me most. Milk, high fat ice cream, too many nuts (almonds and walnuts are okay by half a handful). I have to peel my apples. The thing I have found that helps me the most is Greek yogurt. I eat it twice a day. It’s helped a lot.

    • myjourneythrume June 15, 2013 at 7:59 am #

      Thanks for reading and commenting Sharon. That’s interesting about the Greek yoghurt. It’s very low lactose and high probiotic so I guess that’s why it helps. I’m not sure how I’d cope with it as dairy seems to be a big trigger for me which is a shame cos Greek yoghurt is so delicious isn’t ?! I have issues with apples too. Raw makes me bloat but cooked they are ok.

  5. Kristen Bailey June 14, 2013 at 5:40 am #

    I can empathise! I have ME and IBS too, though my tummy probs are not as severe as you. It’s such a minefield, isn’t it, to work out what advice to take, and what your body does which doesn’t fit with what the textbooks say! My mum has IBS too, and has to avoid peas and beans, spicy and fatty things, and large portions of acidy fruit. Fortunately Mum and I can talk to each other about wind and poo without embarrassment! Buscopan is great for horrible cramps, and peppermint tea for bloating. I also find that a mefanamic acid (Ponstan) tablet, an anti-inflammatory which the doc gave me for period pain, is good when my tum is swollen. I can’t have coffee, makes my tum very gripey. Fortunately for me I’m a tea lover so I don’t miss it. Drinking ginger tea when you feel queasy, or raspberry leaf tea when swollen, is good. Drink enough fluid for your pee to be pale straw-coloured. Go for a walk every day to keep your bowels moving. For constipation, nothing beats a good portion of grapes! Hope you have more good days than bad 🙂

    • myjourneythrume June 15, 2013 at 8:04 am #

      It is such a minefield, I totally agree. One day I read one thing will help, e.g. high soluable fibre diet, and the next day I read that too much soluable fibre will just add to being ‘blocked up’!! Arrr!! I can’t have coffee either, gives me horrible cramps. But like you I’m all about tea. I haven’t tried Raspberry leaf, must find some of that. And grapes too, I love grapes but haven’t eaten them for years so I will definitely try that! Thanks for reading and sharing all your tips. Hope you have a ‘good’ ME/CFS and calm belly day 🙂

  6. Fairy June 15, 2013 at 12:16 pm #

    I have had exactly these problems in the past. I dont suffer nearly as bad now because I did an elimination diet and found out what was causing it. I disagree having no sugar is bad for you, I have very low sugar because my body doesnt tolerate it and I dont have the dizziness or other problems, on the contrary I feel well. I would hazard a guess and say that those symptoms you got when you eliminated sugar were side effects from withdrawal. Sugar is drug-like in its effects (I would argue it is a drug) and if you stick to it for three days you should overcome those feelings. You say you avoid most lactose heavy dairy? Its not the lactose in the dairy that causes problems in ME people, its the complex sugars. Sugar, when you look at all the intolerances we have is the problem because carbohydrates break down into sugar. Except for gluten intolerance (and I have a theory its not the gluten in wheat but another part of the wheat we are intolerant to). If I were you I would cut out all sugar and that includes fruit (esp fructose). You say youre good most of the time but I have learned thats not good enough to be well. This is what I did to overcome my IBS problems: I ate the following only for three days: fresh meat and fish, brown rice, eggs, oils, rice cakes, goats cheese (look for ones with zero sugar) and kept a symptom diary. I felt amazing. Was running around the park etc. Then I started to include other things one thing at a time and found out I was allergic to all sugar including fruit and vegetables (apart from muchrooms, lettuce and a tiny bit of frozen mixed veg) so this means excluding all artificial and natural sugars such as glucose, fructose, agave, stevia, honey etc, excluding all sauces and anything processed, I also allergic to anything with wheat in it (gluten/wheat consumption would cause me to have 2 days in bed where sugar only caused one day), soya was a no no too, cows dairy was off the menu too and I couldnt have other milks because they put sugar or other things in it which cause a reaction, I couldnt even manage fruit tea. When I am good and follow this plan rigidly the IBS disappears, along with all the other symptoms of ME, but its very hard for me to follow and so mostly I do suffer a bit. I will say though, if you omit these things, over time your symptoms will become less severe. A year ago I could barely walk when I ate these things and now I can still manage to go to work when Ive been bad, I just feel a bit more tired than usual so its worth sticking with. Do you suffer with anxiety? I have a theory that I had GAD (generalised anxiety disorder) which was left untreated and caused me to develop IBS and the ME symptoms are actually an extreme case of IBS. I put this to my GP and he said its entirely possible and we agreed that curing the anxiety would make me better – but im allergic to the sugar in medication so Im stuck at either being treated and being ill or just avoiding stress and anxiety as much as possible. Anyway I am going to do a big write up about my results in the next day or so so keep an eye on my blog 🙂 I hope you feel better soon.

    • myjourneythrume June 16, 2013 at 4:27 pm #

      Wow! Thank you for taking the time to write such an epic comment! All very useful info much appreciated. IBS is such a process of trial and error isn’t it, and also so individualised too it makes it even harder to know what to to avoid. At least it gives us all something to write about!

  7. Running from the Runs June 15, 2013 at 11:38 pm #

    I really enjoyed reading your post, that is very interesting about the linseed! I have IBS-D and have been diagnosed with it for about 10yrs or so. I second the Greek yogurt trick, really any yogurt seems to help, especially if I am having a flare up. I have cut back on my wheat and that seems to help a bit, I also peel everything that can be peeled, most especially apples! I look forward to your next post, I am intrigued by FODMAPS but not sure if I can give up garlic, so haven’t tried it.

    • myjourneythrume June 16, 2013 at 4:25 pm #

      I didn’t want to give up garlic either! But it wasn’t too bad as you can still use garlic infused olive oil because the FODMAPs in garlic are water and not oil soluable. As you’ll see from the next post (which I posted today) FODMAPs weren’t the magic cure I’d be hoping for but it is an approach that works for a lot of people. Thanks for reading and commenting, come back soon 🙂 I’m definitely going to check out your blog.

Trackbacks/Pingbacks

  1. ME, my Digestion and I, The Tale of the Unhappy Threesome Continues | my journey thru M.E. - June 16, 2013

    […] and I are back to tell the second installment of my IBS tale. From the many comments I had on my previous post it seems IBS is a beast that bothers a lot of us. It’s really nice to know my bloated belly […]

  2. Eureka!! An ME/CFS Light Bulb moment! | my journey thru M.E. - July 10, 2013

    […] months now I’ve been battling with my bloated belly, trying desperately to figure out what is causing the food baby bloated belly to reappear without […]

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