My Gluten Free Journey

imageI’ve considered telling the story of how I ended up on a Gluten Free diet a few times but have never been quite sure if it would be interesting to other people. My theory being that everyone on a GF diet has similar stories so how could that be interesting to read. However, recently I’ve read a few stories in Gluten Free and Free From Heaven magazines and again on Becky Excell‘s blog: My Gluten Free Journey – What’s Yours?

What I have discovered from each of these stories is that although we all end up in a similar place, watching our diets very carefully, our journey to that place can be very different. So, here is the story of how I ended up here.
For me I have suffered with IBS my entire life so have always struggled with the symptoms of gluten intolerance. As I have 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 mine would occasionally have a break.

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 home or restaurant I didn’t feel as bad. I started to cut down on the amount of gluten I ate but I didn’t go completely gluten free for another couple of years yet.

It was 2012 before I revisited my questions around gluten. My Husband and I had moved into a new home and literally overnight (first night there) I developed a load 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, along with several other things!

I had kind of lost faith in GPs by this point 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 they had been so bad, “in my head” in a quite literal sense because I have mental health problems, and the best one 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. I contacted Wendy of The Wellbeing Touch and she visited my home to test me. 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.

Wendy, suggested some supplements to help me out and suggested a diet to help me try and get some more nutrients into my body while I started battling with my GP again. 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. The tests went into double figures, some of them made me sicker than I already was such as the test for coeliac which I had to start eating gluten again for which meant swelling joints, face, mouth, tongue and hospital visits! Or the test for Small Intestine Bacterial Overgrowth (SIBO) which gave me chronic diarrohea for over 2 weeks.

In November 2014 I finally so 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 have been getting progressively so sick over the years.
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. I am currently at the point with the diet where we are working on reintroducing different FODMAP’s to establish which one’s I have strong reactions to and which one’s I can tolerate. The idea being that I am able to eat as much as possible at the end of it.
I am being referred to Immunology to confirm the Gluten/Wheat allergy and some non-food allergies I developed when the allergic reactions started. I am waiting for this, but given the reactions I have whenever gluten passes my lips this is merely a formality for my medical file.
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 “its 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!

My parents found a great bread maker with Gluten Free settings so I am able to make my own bread. I am not a good baker, I’ve never been great with bread/cakes etc so having this machine which does the hard work for me is a god send. I’m yet to master sandwich level bread but I can make some great toast style bread!

I have a few recipe books which have been saviours! One is the Good Food: Gluten-Free Recipes by the BBC which is full of everyday recipes like quiches, pasties, pancakes etc which has meant that I’ve been able to keep a little normality. Another is the Honeybuns Bakery book which has been slowly teaching me not only how to bake, but what gluten-free flours work well for different types of baking, and the results are usually amazing.

I also subscribe to the Free From Heaven magazines which alternate monthly between Free From Heaven and Gluten Free Heaven. There are always loads of great recipe ideas that I can combine with my Abel and Cole fruit and veg boxes every week.

I’ve found the key to survival is to plan my food, including snacks!

Unlike many people with gut problems I didn’t lose weight, this is probably why I had so much trouble getting Drs 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. Since I’ve been on the Low FODMAP diet I’ve lost over 10kg (2 months) and I would guess I could almost double that since I went Gluten Free 2 years ago.

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 threatning if I consume any gluten at all. I also discovered it wasn’t just one food causing an issue for me there were multiple, as well as problems caused by surgeries I’d had.

I wish everyone on this journey luck. It’s a long hard haul, but once you’ve made the changes and are living your new foodie life things don’t seem anywhere near so bad!

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3 thoughts on “My Gluten Free Journey

  1. Love this post! Its so comforting to hear your story, i'm Lactose Intolerant/Dairy free and have been through the same stress of discovering an food allergy, although it only took me a few months to discover the outcome! Years must of been awful for you!

    Hope xx

    Like

  2. Thank you so much for your comment. I spent quite a lot of the time fairly resigned to the fact “this was life”. It feels so good to have a different outlook now though. So glad you found the cause quickly and hope you are adjusting well. It isn't always easy!

    Like

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