My Coeliac Story

After years of symptoms, tests and a misdiagnosis, a coeliac diagnosis connected all the dots.

Chloe Bryce

7/26/2023

Coeliac disease is an autoimmune disease that can cause a wide variety of symptoms. Coeliac disease is when the immune system reacts to a gluten, or more specifically reacts to a compound called prolamin fraction. This reaction causes the body to attack its own cells, specifically attack the lining of the small intestine known as villi. The villi of the small intestine play important roles in nutrient absorption and when exposed to gluten in those with coeliac disease, the villi become inflamed and flattened.

Coeliac disease is actually quite common with 1 in 70 Australians being affected by the disease. Unfortunately, even though the disease is common, it is also frequently misdiagnosed or underdiagnosed, so much so that it is believed that up to 80% of coeliac sufferers in Australia are undiagnosed. Coeliac disease typically requires an endoscope and biopsy for diagnosis, however sometimes coeliac serology (blood tests) can provide an indication that coeliac disease may be present.

Symptoms of Coeliac Disease

The symptoms of Coeliac disease are broad and each person may experience a wide variety of symptoms or could be asymptomatic. It is important to note, even if someone is asymptomatic with coeliac disease, damage is still occurring to the villi of the small intestines and there are significant health risks if gluten ingestion occurs. Some symptoms include:

Anaemia
Nutrient deficiencies
Fatigue
Weight loss or inability to maintain weight
Diarrhoea or constipation
Nausea and/or vomiting
Bloating and flatulence
Abdominal cramps
Rashes - dermatitis herpetiformis
Mouth ulcers
Brain fog
Joint pain
Missed menstrual periods

Coeliac disease is also associated with many other conditions. The association may be due to the inflammation coeliac disease can cause to multiple regions of the body or due to genetic predisposition. These conditions can sometimes be the first sign that you may have coeliac disease. Some of these include:

Thyroid conditions
Osteoporosis or osteopenia
Type 1 diabetes
Liver disease
Infertility or recurrent miscarriage
Rheumatoid arthritis
Lupus
Gastrointestinal cancers
Multiple Sclerosis
Epilepsy
Dental enamel defects
Lymphoma

My Story

I should start this story with some background information. As a small child, I was never really well. I constantly battled with tonsilitis once a month until I was 10 years old and had them removed. I was a tiny child who struggled to grow and put on weight. I struggled with eczema. I was also chronically constipated. Obviously as a child, I didn't know any better and my parents took me to the doctors regularly to try and get me help but I was mostly prescribed another round of antibiotics and told to drink more water.

As I got older, I experienced significant bloating and more pain associated with this bloating. I was still experiencing all the other symptoms (minus the tonsilitis). I was also now experiencing fatigue. When I was 17 years old, the vegan movement was taking off. I assumed this would fix all my health issues so I went vegan overnight. Initially, I actually did feel slightly better, probably because I’d never eaten so many vegetables in my life. However, the bloating continued. After a few months, I was back to feeling how I did beforehand but I persisted with the diet. Overtime, I actually got worse and worse. By 2019, I was struggling to really badly with bad fatigue and joint pain. I was a veterinary nurse at the time, which requires a lot of lifting and physical activity and I was struggling to perform my job efficiently. I'd given up veganism because everything made me bloated and left me in agony. After my blood tests showed elevated CRP and RF, I was referred to a rheumatologist who diagnosed me with rheumatoid arthritis. I trialled a medication that unfortunately made me significantly worse.

By 2020, I was the sickest I’ve ever been. I now struggled to be awake for more than 4 hours at a time, I was constantly napping. I looked 6 months pregnant after everything I ate. My joint pain was so severe that I struggled to write or move too much. I had just started studying nutrition as I now knew I would not be able to be a veterinary nurse for much longer due to the way I was feeling. Studying nutrition did give me a new lease on life, I love all things health and wellbeing and I was able to implement the things we were learning in my own life. Feeling this way and trying to study was not a good combination. I knew I had to keep trying to find answers to feeling better. I was only 22 years old, I knew I didn't want to spend the rest of my life feeling this way. After experiencing some blood and mucus in my stools, I was referred to a gastroenterologist for a colonoscopy. My gastroenterologist actually recommended we perform an endoscope at the same time after she read my report and saw my ferritin levels were 2μg/L, normal is between 30-200μg/L. After my scope, I was cleared of anything sinister immediately, however, the coeliac disease diagnosis came a few days later. My biopsy confirmed coeliac disease, however, I was asked to go have the coeliac serology testing done just to be sure. My levels were extraordinarily high, further supporting the coeliac diagnosis.

Going gluten free was a HUGE lifestyle change. Everything I ate and loved had gluten in it. Learning how to avoid cross contamination was probably the hardest adjustment. About a month after being gluten free I started to feel a lot better. I had more energy and less brain fog. The joint pain and bloating did take a little bit longer to improve. Currently, I am finally at a stable, healthy weight, I do not experience much bloating anymore, my joint pain is almost non-existent, my bowel movements are finally regular, I no longer need to nap, and my eczema disappeared as it turns out it was dermatitis herpetiformis. After my diagnosis, I used my nutritional education to help support my gut health by prioritising certain nutrients, such as glutamine, collagen, omega-3s, curcumin and probiotics. I also worked hard to increase my iron levels - however this is still an ongoing battle for me. The most important part of gastrointestinal healing for coeliac disease is the avoidance of all gluten and cross contamination. It is important to get a follow up scope the year after your diagnosis to ensure your small intestine is healing. A DEXA scan is also useful after diagnosis to help assess the density of bones.

I am so grateful for my gastroenterologist recognising the signs and recommending an endoscope. I feel like I have my life back since being diagnosed and even though a coeliac diagnosis can feel terrifying, there is so much support out there and it is significantly easier to be gluten free these days. If you are concerned you may have coeliac disease, please express these concerns to your GP. If you do not feel heard or supported, please get a second opinion. Your health is so important and getting well is one of the best feelings. If you have recently been diagnosed with coeliac disease and you feel overwhelmed or confused, please reach out, I would love to help support you and guide you to navigate this.

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Holistically Chloe would like to acknowledge the traditional owners of the land throughout Australia. We acknowledge the Bunurong people, the traditional custodians of land we gather on today. We pay our respect to elders past and present and extend that respect to all Aboriginal and Torres Strait Islander peoples today.