Coeliac Disease, Getting Diagnosed, IBS & Low FODMAP Diet
comments 13

Another day, another hospital appointment.

I realised this week that I have been asking doctors for answers for almost two years.

As I have written about before, even though I stick religiously to the gluten-free diet, I have ongoing health problems that seemingly cannot be explained by coeliac disease. For a while I worried that it was all in my head, but I have since found countless stories from other coeliacs on Facebook, Twitter and online forums that chime with my experience. At this point it is likely that as well as coeliac disease, I also have IBS, or SIBO, or some other gut-related condition.

IBS is the front-runner, and as this can only really be diagnosed through process of elimination, I have had (and am still having) every gut-related test under the sun.

I have had a range of advice to help deal with the symptoms. A Dietician put me on the FODMAP diet, a Gastroenterologist recommended I try yoga, mindfulness and cognitive behavioural therapy, another Gastroenterologist prescribed me peppermint oil capsules to ease the pains…though some of these have helped to a degree, nothing has completely ‘cured’ me.

Unfortunately I have found that even the consultants who specialise in gut disorders do not have any concrete solutions. There are also long waiting lists to see these doctors and have the necessary procedures, so any conclusions take a long time to reach.

I don’t want to be ‘woe is me’ about it. I know that in many ways I am incredibly lucky, and though aggravating and at times painful, at least my symptoms do not prevent me from living a reasonably full life. But I wish that there was a magic bullet solution to all of this. A pill. An injection. Whatever. After nearly two years, I am boring MYSELF talking about it.

This post is my shout-out to everyone with frustrating, inexplicable gastro issues. Here’s hoping for that ever-elusive diagnosis in 2015.
Issi

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Note: I’m anxious that this post doesn’t come across as NHS or doctor bashing. The overwhelming majority of medical professionals I have dealt with have been kind, helpful and knowledgeable (special mentions to Chelsea and Westminster hospital staff) and I am eternally grateful that we even have the NHS.

13 Comments

  1. I have the same pattern of things and oddly do not test positive for coeliac. One doc told me that IBS is the catch-all diagnosis when they don’t know.
    The best way I’ve found to handle it is a strict elimination diet then adding things back in and see what happens. I cannot eat anything containing gluten, buckwheat, corn or whole lentils. In tiny processed amounts eggs and lentils are ok. Dairy made me sick until I cut out most grains, now it’s ok in moderate amounts.
    This seemed daunting at first but is totally normal and fine now… and I am well for the first time decades!
    New doctors have also discovered for me that there’s some kind of malabsorption issue — my body does not take in nutrients from food. So we supplement with regular IVs of iron, shots of B12 (ouch!) and D drops in juice. They really have no idea why or how to address it, so we just supplement as much as possible.
    Best of luck to you!

    • Hi Rebecca,

      So glad you have found a diet that works for you, isn’t it amazing to feel properly *well* after ages being on a sliding scale of meh -> awful? Best feeling ever! Good that your doctors spotted the malabsorption issue, it must be a pain to have to get the shots but at least they are fixing it :)

      Yes, I’ve heard that about IBS – it almost doesn’t feel like a diagnosis, just recognition that *something* is wrong in the gut. Not sure if it is the same in Switzerland, but in the UK doctors are supposed to definitely rule out coeliac disease *before* IBS as the symptoms are so similar but CD is more serious. When you were tested, was it a blood test or an endoscopy with biopsy? The reason I ask is that it is quite possible to get an incorrect result in the blood tests, especially if you had been eating a low-gluten diet beforehand. Imagine you have read up about this stuff before but thought I’d write it just in case!

      Best of luck to you too,

      Issi

      • Blood tests, re: CD. I’ve been getting tested for 20+ years, though, and have also had endoscopy w/out biopsy many years ago. Only went gluten-free about 5 years ago but had been corn and egg free for a long time and lentils literally fly back out of my body, so hadn’t eaten those in many years.
        My problems actually started with corn, which is quite common in the US where I’m from, and IBS was diagnosed along with a mysterious autoimmune disease.
        I am convinced Western medicine is simply unequipped to deal with whatever this is… and would not be at all surprised to find that it’s a result of something we’re doing to our food supply and/or environment. So I’m not as directed toward a diagnosis as I am to figuring out year-by-year best way to treat it.
        I found your blog b/c I visit London frequently. in clouding in a few weeks, and am looking for places to eat. I’m thinking maybe we’ll try Dishoom in King’s Cross…
        Thanks!
        R

        • Ah I see. Blimey, I thought I’d had it bad with 2 years of looking for answers, 20+ years is an awfully long time! I completely understand after all that, wanting to find a way to manage it and feel well rather than being directed towards a diagnosis.

          That’s interesting about corn. I don’t know how much is proven at this point, but I’ve read that some think that corn is made up of a similar protein to gluten thus can be difficult to tolerate for the likes of us. I seem to get on ok with it in moderation, but not too often.

          Ooh if you’re coming to London in a few weeks you must go to Beyond Bread bakery – I wrote a review a few weeks back, it is really fantastic, so much choice. Dishoom is great too, absolutely delicious food. Feel free to drop me an email at glutenfreeinlondon at gmail dot com if you’d like any more specific reccs. :)
          Issi

  2. Celine says

    Oh and the conclusion was: sometimes you need to work on the root cause of the digestive problems which is often “leaky gut syndrome”. The SCD diet and GAPs diet are both amazing tools to do that. I personally can now live again thanks to doing a mix of them both + taking supplements such as digestive enzymes, probiotics, L-Glutamine. If you have any questions don’t hesitate to mail me :)

    • Thanks lovely – lots to check out! My dietician has recommend if my symptoms worsen to try a probiotic called Symprove – apparently this is one of the only clinically proven ones. x

  3. Celine says

    Hi Issy :)
    I’ve been following your great blog since I started planning an upcoming trip to London end of March.
    I just came across your post and thought I might leave a comment because I completely relate to what you are living.
    I actually just wrote a review this morning on Amazon, about a book “Breaking the vicious cycle”.

    Basically, I had serious IBS-C issues for as long as I can remember.. I started a gluten-free diet on my own 4 years ago. My doctor said I probably have celiac because I had the markers of the disease but I was on a GF diet too long before I asked to be tested, so it won’t show up on a blood test or biopsy. The GF diet helped a lot at first but a couple months after – and after starting to eat store-bought gluten-free products (i.e made out of rice flour, corn and potatoe starch..) – my symptoms came back even worse. I stopped dairy. The same thing happened, I was better then a few months after I was almost back to the square one. I tried low-FODMAP, I tried sugar-free, I tried almost everything…

    I am a glutenfree food blogger so it made things worse because people were expecting to be able to eat anything if it was just gluten-free! I strongly suspected I had a problem with carbs but couldn’t pinpoint to any food in particular. Grains and potatoes made my face swell over time and my digestion was worse when I ate them.

    In January 2014 I tested for food intolerances but potatoes did not come up so I kept on eating them while eliminating grains. I felt SO much better within 2 weeks, but something was not quite right. I decided to buy the Specific Carbohydrate Diet book (Breaking the vicious cycle) and read up on carb types. Within a couple weeks I was experiencing normal bowel movements for the first time in my life. My tummy was flat, my spirits completely lifted. Within a few months I managed to put some weight back on, despite being stick-thin for years. My liver and kidneys started working normally again after 6 months! I tried reintroducing potatoes and some grains before Christmas and although my digestive issues didn’t get too bad (as they would have before this diet), I still struggled with other symptoms, like conjunctivitis, red rashes…I stopped and 4 days after I am back to normal! Amazing…

    Anyway, sorry for the long story! I know I suffer from a bit of candida overgrowth but I don’t have SIBO or any other gut infection. I definitely have an intolerance to carbohydrates and feel my best when I am grain-free.

    Maybe it is something to explore or try out for a week or two…?

    Good luck and keep the good posts coming :)!!
    Kind regards from France,
    Celine

    • Hi Celine,

      Thanks so much for your lovely comment! I meant to reply sooner but lost track – it really makes my day to get such kind comments from strangers :) The Specific Carbohydrate Diet sounds very interesting, bookmarking Breaking the vicious cycle. Very glad that you have found something that works for you, it is so frustrating when you try everything and nothing seems to change! The Low-FODMAP diet seems to be working quite well for me currently; I have reintroduced a few things (e.g. I seem to be able to cope with dairy thankfully) and even though it was really complicated at first, it is slowly becoming second nature. I notice symptoms coming back if I deviate from it too much, but do allow myself to relax a bit more now, as my latest tests show me to be in good health. I’m still waiting for an official IBS diagnosis but the doctor is pretty sure that’s what it is.
      When in March is your trip to London? If you drop me an email at glutenfreeinlondon at gmail dot com I’d love to give you some recommendations :)

      Best wishes,
      Issi

  4. Hey Issi

    I really hope that you got somewhere with your tests before Christmas, and that you were able to enjoy the festive period. Last year I had stomach problems all over Christmas and it really did make me miserable, so I understand how it wears you down.

    Anyway, I wanted to drop you a quick message on the off-chance that your symptoms are IBS. I suffered with severe IBS for a year or two after I was diagnosed with the CD and my God it was AWFUL. I literally had an upset stomach and cramps every single night for months on end. Then someone suggested aloe vera juice. Well, I paid £10 for a ginormous bottle of the stuff and managed half a single dose because it tastes like disinfectant. DON’T DO IT!!!!! It was a waste of money and I had to throw it all away, it was just that disgusting.

    Some time later, I discovered they do aloe vera in capsule form, and for 2 months, I took the maximum dose of the highest-strength capsules. Over those 2 months, my symptoms disappeared and that was in….oh, 2005 or 2006. Not sure which. Either way, I’ve had almost no bother at all since. These are the ones I took – http://www.amazon.co.uk/Optima-Health-Double-Strength-Capsules/dp/B0013G48UI and I wanted to mention them to you in case you want to give them a try. You have to stick to them religiously, but you never know, it worked for me so it might work for you too. :0) Either way, feel free to moan any time. It’s nice to have the company, lol!

    Sorry for the essay!

    Vikki Cook
    http://www.buttercupbakerybournemouth.blogspot.co.uk

    • Hi Vikki,

      Thanks so much for your kind comment, it always helps to know that you’re not alone with these experiences.

      I haven’t updated on here yet (went into hibernation over the holidays and have gotten out of the blogging habit – bad!) but I had the glucose breath test and sigmoidoscopy before Christmas, and the results of these officially ruled out SIBO and anything more ominous. Though I haven’t had an ‘official’ diagnosis yet, the gastroenterologist said after the procedures that this means I do, in all likelihood, have IBS. Though I’m still not sure if IBS is a bit of a non-diagnosis in itself!

      I was actually lucky over Christmas in that I ate quite freely (i.e. not 100% low FODMAP) without suffering many symptoms, and was able to completely relax and be looked after by my parents. It convinced me more than ever that a lot of my symptoms are triggered by stress.

      That’s incredible about the aloe vera capsules. I have heard these mentioned before, but never such a strong endorsement! Do you still have to take them now at all, or was it just those couple of months? I have no idea about the science backing these things up but for under a tenner it could be well worth a try. :)

      Issi xxx

      • Wow, you really had the full range of tests, didn’t you?! At least they’ve ruled out anything serious and that must be a relief, if nothing else.

        Nope, I only took the aloe vera tablets for a little longer than the 2 months (I was too scared to stop them, initially!!). Honestly, I wish I could say it’ll work for everyone the way it worked for me because it genuinely felt like a miracle! But all I can say is that if you’re desperate, it’s always worth a try. :0)

        Vikki Cook
        http://www.buttercupbakerybournemouth.blogspot.co.uk

  5. I’m so sorry for you! And I do hope you get a sure diagnosis in 2015 (let’s not say as a Christmas present, but, well, the sooner the better. XD)

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