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Robyn Puglia talks about living with coeliac disease, from pre and post-diagnosis, and how she used her nutritional therapy studies to think outside the box of conventional guidance

What is coeliac disease?

“Coeliac disease is a gluten-reactive autoimmune disease characterised by specific damage to the small intestine. The inflammation and damage from active coeliac disease can affect any tissue in the body, but to be coeliac disease it must include damage to the villi [finger-like projections made up of cells that line the entire length of your small intestine] on top of any other symptoms or affected areas.”

What are the symptoms of coeliac disease?

“Classic coeliac symptoms are considered to be gut related such as pain, distension, diarrhoea or IBS symptoms, but only the minority of people with coeliac actually present this way. 

"The most common complaints are fatigue, brain and neurological complaints, skin issues and a constellation of immune-mediated weakness such as recurrent infections. Many people with coeliac disease also have symptoms that arise from nutrient insufficiency or deficiency as a consequence of the damage to the small intestine, or from the inflammation in their bodies that’s not directly autoimmune related. Meaning the immune system isn’t directly attacking an organ system, but because of the inflammation and immune dysregulation in the body, are affected and not working."

Tell us about your life before you were diagnosed

“It's difficult to know when my coeliac disease started. I had eczema from late infancy, which became severe when we moved to Australia aged five. I suspect this was the beginning of coeliac disease but at the least it signified a degree of immune dysfunction that was the foundation for autoimmunity. 

"I was always very skinny and pale as a child, but had lots of energy and was athletic.

“From about the age of seven I started to suffer regularly from classic migraines, and then in my teenage years I started to get regular infections; sinus infections, chest infections, urinary tract infections and a few kidney infections. This started a predictable cycle of antibiotics and over the counter remedies.

"At 15 it was discovered that I was anaemic and the anaemia didn’t respond to oral iron therapy, so I started having regular iron injections at the GP.At 16 I contracted glandular fever and it took me months to recover.

"The other really major sign of inflammation was my skin. To say it was hypersensitive was an understatement. I reacted to so many creams and products, flushed and blushed at the slightest provocation and I look back on photos from pre-diagnosis and can so clearly see how inflamed I was, just from the way my skin looked.

"From that time, until my diagnosis at 23, I gradually got more and more tired, had less stamina and poorer recovery. My eczema got worse, and although my migraines got a little bit less frequent around the age of 20, they were still a huge part of my life.

"I was so tired and so underweight that I knew that something was seriously wrong. I had seen many GP’s regularly over all these years for the migraines, the eczema, the infections and the anaemia. But each issue got a prescription and nobody ever joined the dots.”

How did you get a diagnosis?

“By the time that I was 23, I wasn’t really sure what else to do. I was living in Perth, Western Australia, at the time and there was a women’s health centre there that functioned differently to a regular GP practice. I booked myself in, in the hope that I might be listened to properly.

“I went in armed with a written list of all of my issues and observations (one of which was that wheat seemed to make the eczema worse) and a determination not to leave without some sort of path forward. Long story short, that doctor told me she would test for coeliac and as soon as she said it, I knew that was it.

"Bloods and the dreaded endoscopy followed and I received a diagnosis. Between the bloods and the endoscopy results I was offered a job in the UK, so I received the diagnosis two weeks before getting on the plane. I ate as much pizza as I possibly could in those two weeks, ordered a gluten-free meal on the plane and that flight was the delineation between old life and new life.”

"Going gluten-free was a total revelation. Eczema – gone. Migraines – gone. Sinus infections – gone. After all those years, it was just like that. It felt like a miracle.”

At what stage did you decide to study nutritional therapy?

“I arrived in the UK the year I turned 24. One year later, I started studying at ION.

"I was working in medical aesthetics at the time, and actually started studying nutrition as a way of being able to better help people suffering with eczema, acne and skin hypersensitivities.

"Very quickly I just fell in love with the whole industry and subject of nutrition. The brain, the immune system, the gut and all the food and nutritional biochemistry was totally fascinating and skin became much less of a focus for me.”

How has nutritional therapy affected your coeliac disease?

“Towards the end of my last year of studies, I got glutened [accidentally ingesting gluten] really severely and didn’t recover after the usual coeliac trajectory. I ended up with chronic fatigue that took months to resolve and it was nutritional therapy that helped me to work that out.

"I had to start to think outside the box of coeliac disease and look for the extra-intestinal effects of that cascade of inflammation and explore further food reactions apart from gluten and dairy, liver function, nutrient levels, mitochondrial function and more besides.

"Without my studies, I would have had to have relied on the conventional guidelines and advice which were not applicable in my situation then.

"Being a nutritionist has taught me that there is a difference between a diet that technically avoids a food that is a trigger – e.g gluten and the gluten-free diet, and one that promotes real health of the body. The label gluten-free can be applied to a way of eating that can lead to a lot of systemic inflammation and gut dysfunction, which makes a person more susceptible to other health issues and just not feeling well.

"And this is a big problem for the coeliac community. There are many of us out there who continue to feel awful even while strictly following the gluten-free diet, and having restored the gut damage that characterises coeliac disease. This feels frustrating and disheartening.”

What advice would you give to others suffering from coeliac disease or who suspect that they might be?

1) "Get familiar with the whole list of symptoms of coeliac so that you can be armed with accurate information to discuss with your doctor, in order to justify having the blood test or the endoscopy. This is especially important if you are advocating for your child, who can have a lot of brain, behaviour and immune symptoms and not necessarily gut symptoms.

2) "If the test results are inconclusive or negative, but you know you feel better when you are gluten-free, then consider and discuss with a health professional the benefits and disadvantages of an official diagnosis versus living strictly gluten-free.

3) Understand that coeliac disease is an autoimmune disease and that means it is an issue with the immune system in your body, not with your gut. Your gut is the target, not the originator of the issue. Because of that, you need to think about the health and balance of your whole immune system and your body. Don’t limit your thinking and your health interventions to your gut.”

"Lastly, there is a whole delicious world of food outside of gluten. When you are first diagnosed it can be a big change and it’s normal to grieve gluten. It might be hard to believe that a day will come when you won’t even miss it.”

"Nothing tastes as good as healthy feels. Not even freshly baked bread."

Visit Robyn's website or follow her on Instagram @robynpuglia

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