Coeliac Awareness Week 13-20 March 2017

Today I will be sharing my story of how I discovered that I have Coeliac disease and the journey I went through to get diagnosed.

Throughout my childhood  I experienced digestive symptoms that were irritating but I also experienced nervousness and stress, so my mum took me to see a Naturopath, he treated me for nerves and it helped a lot, but the nervousness wasn’t the only thing causing my digestive symptoms, as I later found out.

Then I hit my teenage years and I continued to have the digestive symptoms which were quite uncomfortable and at times embarrassing, as I had ‘unpleasant’ gas (sorry but it’s true!), bloating and painful stomach cramps.

After I finished year 12, I moved to Melbourne and started working in cafes. I was interested in studying to be a Naturopath as I’d had success being treated for tonsillitis and nervousness as a child, I then began studying to become a Naturopath.

I was in my 2nd year of studying Naturopathy and I learnt about Coeliac disease, I had a light bulb moment and realised that the symptoms of Coeliac disease correlated with my symptoms. At this stage my pain was so severe that I would have to lie on the couch with my legs crunched up which would relieve my pain (and gas!), I would be almost crying as it was so painful.

Armed with this information, I went to my GP, firstly she told me to cut gluten out and see if I feel any better and if I felt better then she will do some testing. At the time I didn’t realise that this  was completely incorrect advice. I tried to cut out gluten but I only did it halfheartedly and I didn’t see much difference (although I already had a low gluten diet) but my symptoms were still bad and a new symptom appeared which worried me, it was blood in my stool. I saw the GP again and she decided to do the initial blood testing to check for Coeliac disease antibodies, this test came back ‘normal’ and she told me that I don’t have Coeliac disease. I continued to have the same symptoms and the worrying symptom of blood in my stool so after a few months I returned to the GP and I insisted that she refer me to a Gastroenterologist (specialist in digestive disorders).  She reluctantly referred me to the gastroenterology department. After months of waiting for an appointment, I finally got to see a Gastroenterologist, she was very thorough and she sent me for a gastroscopy and colonoscopy, which are tests using cameras. (The gastroscopy is a camera down the throat to look at the stomach and small intestine/bowel and a colonoscopy is a camera which views the large intestine/bowel through the rectum; a biopsy is where they take a sample of the tissue to see if there are any abnormalities). Once the results were back the specialist wasn’t completely convinced that I had Coeliac disease but it was possible, I had to have further blood tests. I went back to see the specialist and I was diagnosed with Coeliac disease.

As you can see from my story it was difficult to get a diagnosis. It was found through the biopsy and gastroscopy that I had a lot of inflammation in the small bowel but only a small amount of damage to the villi, which means over the years even though I had symptoms, I didn’t have a lot of damage but I did have a lot of inflammation which if left untreated it would have become a lot worse.

My story shows that getting a correct diagnosis can be tricky, unfortunately the antibody testing for Coeliac disease can be unreliable, this is because not all of us make antibodies to gluten (in the amounts that are detected due to older detection methods, newer methods are improving but there can still be false negative results) and it can be because the person isn’t consuming enough gluten at the time of testing (you need to be eating the equivalent to 4 slices of wheat bread for 6 weeks prior to testing).

If you are worried about your own health and are concerned that you may have Coeliac disease, you can start by going to the Coeliac Australia website and complete their online assessment tool and see your GP for testing. Once you’ve been diagnosed or if you have non-Coeliac gluten sensitivity, a Naturopath or Nutritional Medicine Practitioner, such as myself can guide you to heal your gut and follow a healthy wholefoods gluten-free diet.

Check out my blog for related posts about Coeliac disease.

Thanks for reading,

Erin 🙂