Published On: Mon, May 25th, 2015

Your Stories: Claire Robinson-Ayres

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We hear from Free-From Heaven reader Claire, who has an allergy to gluten, small intestine bacterial overgrowth and chronic IBS. Her conditions have led her on an interesting journey towards following a gluten-free and low FODMAP diet.

I was first diagnosed with IBS by my GP when I was 13, and as I got older the symptoms have got worse to the point where in my mid-twenties they never went away. I would speak to other people who had IBS and they would describe how their symptoms would occasionally flare up, whereas for me this was everyday life.

It was about 2008/9 when someone I was friendly with at the time who was diagnosed with coeliac disease opened a gluten-free restaurant. I started to notice that whenever I ate at her restaurant I didn’t feel as bad. I started to cut down on the amount of gluten by eating less bread and cooking more of my meals from scratch, but I didn’t go completely gluten-free for another couple of years.

It was 2012 before I revisited my questions around gluten. My husband and I had moved into a new home and on our first night there I strangely developed a lot of new allergies and had to be taken into hospital to be treated for anaphylaxis. This happened several more times over the next 3-4 months and one of the things I pinpointed as a cause was gluten. It appeared that my intolerance had escalated to a full blown allergy.

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I had understandably lost faith in GPs by this time as over the years I had been told that my symptoms were “just IBS” even though there were times I had been hospitalised for up to a week or more at a time they had been so bad, “in my head” in a quite literal sense because I have mental health problems, and the best one was that I was being a “hypochondriac”.

Instead I contacted a whole health nutritionist a friend referred me to, she did testing for food intolerances and I felt with her test results behind me I would feel more armed to approach my GP. What came of that testing was that I had some serious issues with my dietary health. Not only did I have a number of intolerances but I was also severely lacking in nutrients and vitamins which very much explained how sick I was and had been.

One of the hardest decisions I needed to make at this point was to stop being vegan. I had so many intolerances and was lacking in so many nutrients that meat and fish were going to be a huge way to help me get my mojo back so to speak. Morally this was one of the hardest decisions I’ve ever had to make, but in terms of my health it was one of the best. It took me until June 2013 to convince a GP to refer me to a Gastro Consultant so that I could get the correct tests. Over the next year I had more tests than I could keep up with.

In November 2014 I finally saw my consultant again for all of the results, I didn’t have anything serious like Crohns or Cancer which had been a concern at one point. But I did have an unusual mixture of conditions and would need a strict diet to manage them.

  • Chronic IBS
  • SIBO (Caused by surgery I had in my early twenties)
  • Gluten/Wheat Allergy
  • Lactose Intolerance
  • Fructose Intolerance

I was put on cyclical antibiotics for the SIBO which helps stop the bacteria getting out of control again. There isn’t supposed to be bacteria in our small intestine so it explains why I had been getting progressively so sick over the years.

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I was also referred to the hospital dietician who put me onto Low FODMAP diet to manage the IBS, this is also wheat free so fits in very well with a gluten free lifestyle. My new diet has changed my life, I rarely have reaction anymore, well compared to almost every day anyway. I’m getting used to managing what I can and can’t eat. There are lots of really useful resources out there and for me I’ve learned that one of the most important things is that I need to cook from scratch in 99/100 cases.

Yes, to the doctor who told me several years ago “it’s all in your head” my mental health can affect how I feel. When I’m stressed or anxious it does affect my gut. But nowhere near to the extent that I was being affected before. Unlike many people with gut problems, I didn’t lose weight, this is probably why I had so much trouble getting doctors to listen to me. But I’ve since been told that this isn’t unusual. That there are quite a high percentage of people who have a complicated mix of issues like I do who put weight on as opposed to lose it.

I would always recommend people get advice from a nutritionist/dietician before embarking on something like the Low FODMAP diet as it’s really complicated and the full diet isn’t intended for long term living. I would also recommend speaking with your GP and pushing it if you think you have problems with gluten as there are so many things it could be. People assume intolerance or coeliac but as I found out, I have an allergy which is actually life threatening if I consume any gluten at all. I also discovered it wasn’t just one food causing an issue, as for me there were multiple.

You can check out Claire’s blog, BrizzleLass, and follow her on Twitter.

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