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Coeliac Awareness Week 2017 – My story of how I was diagnosed with Coeliac Disease

gluten-free-austin

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 🙂

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Coeliac Disease Awareness Week Final Post

Good Morning!

Today is the final post for Coeliac disease Awareness Week. It’s been great to have been able to share some of my knowledge in the area of Coeliac disease (CD) and to share my story. Today’s topic is eating out with CD.

Having CD can make people feel like it’s too hard to eat out. Whilst it can be difficult when dealing with hospitality staff that don’t understand CD or aren’t aware of issues such as cross contamination. It doesn’t mean you can’t eat out, it just means you need to get really good at explaining what you can’t eat, what you can eat and asking the right questions to determine if the restaurant or cafe is safe to eat at.

Coeliac Australia have some great tips on eating out, which you can find here.

There are also some great blogs that can help you to find suitable places to eat, here is a list of my favourites:

The Coeliac Plate

Gluten Free Eating Directory

Often it’s much easier to go to a 100% gluten free restaurant or cafe, which isn’t possible for everyone but in Melbourne we are very lucky, here are some of my favourites:

Caffe Strada

Gluten Free 4 U

Red Robyn

Black Ruby Bakeries

Thanks for reading my blog over the past week, I will continue to post about Coeliac disease and other health related topics, so stay tuned!!

Thank you,

Erin.

 

Coeliac Disease Awareness Post #6

Good Morning!

Today’s topic is about cross contamination. This is an important consideration when you are first diagnosed with Coeliac Disease (CD) and you are embarking on eating a strict GF diet or if you are having someone over for dinner that has CD. There is more to think about then just not giving them something that contains gluten but you also have to think about what you are cooking with and ensuring that doesn’t come into contact with any sources of gluten. A common mistake is bread boards, cutting gluten containing bread and then using the knife or board to slice gluten free bread. The board and knife needs to be thoroughly washed between uses. Dips and spreads are another example, the easiest way to avoid crumbs or traces of gluten in dips or spreads is to use a spoon and scoop out what you require but don’t put the spoon back in if it has come into contact with gluten. I find with serving dips it’s easier to make the crackers gluten free and not have any gluten biscuits  out, that way you don’t have to worry. I also serve carrot and celery sticks with dips too. Coeliac Australia has some guidelines on cross contamination which you can check out here: http://www.coeliac.org.au/cross-contamination/

See the infographic for more tips on avoiding cross contamination:

 

Thanks for reading today’s post,

Erin.

Coeliac Disease Awareness Week Post #5

Good morning!

Today I’d like to share with you some practical tips on reading labels to enable you to follow a strict gluten free diet for the treatment of Coeliac Disease (CD). Often people who don’t have CD are surprised at what gluten is in and how they don’t really know how to read a label correctly, the following tips can help to guide you on reading labels, whether or not you have CD:

Label reading:

  1. First you are looking for the presence of gluten, wheat, barley, rye or oats. As these are allergens, they have to be labelled in one way or another. If the food contains any of these as a main ingredient it will be listed in the ingredients list and often will be in bold. If the source of gluten is in another ingredient it will be in a bracket for example if the food has soy sauce in it it will appear like this: soy sauce (wheat) OR soy sauce (wheat). Then at the end of the ingredients it will say Contains gluten OR Contains wheat. If it doesn’t contain any of the allergens but it could contain traces of the allergen and the manufacturer decides to declare it (it is voluntary to declare that a food may contain traces) then it will look like this: May contain traces of gluten and it may be in bold. This can be used for any of the allergens.
  2. The Coeliac Australia guidelines state that if there are no declared allergens (gluten or wheat, rye, barley and oats) and it doesn’t have a may contain statement on it, then it is safe for people with Coeliac disease to consume.
  3. If a food has been tested to be gluten free so it contains less than 3ppm (in Australia), it will be labelled as gluten free. The gluten free label overrides what is in the ingredient list. So for example, glucose syrup made from wheat is so processed that it doesn’t contain the gluten protein so it is gluten free and safe for people with CD to eat, they still have to declare that it contains wheat (as the source is wheat and not suitable for people with a wheat allergy), this can be labelled as gluten-free. The only exceptions to this rule is when a food is imported, imported food is supposed to have a new label stuck over the original label if the original label doesn’t comply with Australian labelling standards, however I have seen some products labelled as gluten-free that contain oats – in this case the gluten-free label doesn’t override the ingredients list, I could tell this because the source country was the US and I know they have a different rule about labelling oats there.

 

I hope this has helped to clear any confusion on reading labels.

Thanks for reading my post,

Erin.