Lu and Romie's Story

I was the first to be diagnosed back in 2008. I had been feeling sick for quite a while before I thought to do anything about it.

My family can tell you that my standard line after eating anything would always be “... I’m never eating again!” I would say this after each meal, simply because I would feel sick after most things I ate. Thinking that I was over eating, I cut my portions down. But even with the lower portions of food, my stomach would still have this unexplained burning sensation (even if I was still hungry!)

One morning I woke up with what felt like a huge weight was placed on my upper stomach area. As I sat up in bed, I lost my breath, which took a while to get back! Being the silly girl that I am, I ignored this and kept it to myself. I didn’t want to alarm my family.

A few weeks later when it happened again, I thought “this is not normal”, so I booked in a visit to my GP. After numerous tests coming back clear, my GP advised me to go and see a gastroenterologist. On seeing the gastroenterologist he advised me that I would need to get an endoscopy.

Then, the results came in...I was coeliac.

I had never heard of Coeliac Disease before, so when I was told this was the cause of my stomach pains, I didn’t really understand what it was about to involve. The gastroenterologist, briefly explained that I would need to eliminate all wheat and gluten from my diet immediately.

As soon as I got home, I told my family. I think my mother was more devastated than me when she heard that I couldn’t have pasta anymore! Being Italian, our staple diet is pasta and bread!

The first few weeks after my diagnosis, I was in denial. It just wasn’t fair! Why should I have to alter my eating habits! Feeling a bit lost and needing some direction, I made an appointment with a nutritionist. She went through a brief summary of all the foods I could eat and gave me some handouts, explaining Coeliac Disease and what could happen to my health if I continued to eat gluten.

Armed with all this new information, I had the motivation to begin my gluten free life. In the first few weeks of being on this new diet, I lost a lot of weight sheerly because of cutting out all the pasta, bread and processed foods that I was accustomed to.

Slowly I began to build up my food options – lots of fresh fruit and vegetables were a staple and then experimenting with gluten free breads, pastas and packaged products until I found what I liked best. It wasn’t the tastiest or cheapest exercise, but eventually I got to know what I liked and didn’t like.

Today, looking back at my general health pre-coeliac, I now understand how being an un-diagnosed coeliac can run havoc on your immune system. At the turn of each season, I would always catch the flu and my asthma would flare up, causing a dry cough to linger around for months.

After my diagnosis I wanted to boost my immune system back into action, so I visited a naturopath who asked me to get a blood test to see exactly what was going on. The results showed that I was low in iron, calcium, vitamin D and a list of other deficiencies. I also found out that I had early signs of osteoporosis, which caused one of my top vertebra's to collapse.

Today, being on a healthy gluten free diet and lots of exercise I’m feeling on top of the world, not a flu or sore stomach in sight! 

I still remember the day my sister was diagnosed with coeliac like it was yesterday. I had never heard of coeliac before and was a bit confused as to what it involved. All I knew was that she couldn’t eat bread or pasta anymore! Seriously…we are Italian and our last name ‘Panetta’ literally translates to ‘little bread’! Now that’s just unfair. I remember her walking through the door that night and all I could do was hug her and say “I’m sorry”. I felt so bad for her. Little did I know, soon I too was going to be by her side, and also diagnosed with the same disease.

We soon learnt lots about gluten and what foods to avoid. We also learnt that it could run in the family. Lu’s GP recommended we all get tested just in case. The first step was a blood test. But I was fine. I was healthy. Wasn’t I?

Apparently not. Although our mum, dad and other sister had negative results - my blood test showed I had some signs of coeliac. Of course this could not be confirmed until I had the proper test – an endoscopy. This would involve a tiny camera on the end of a tube to be inserted down my throat. Naturally I was freaked out! For this reason I put off seeing a gastroenterologist and again put off making the appointment for the test for quite awhile.

Things did not look good for me. My blood tests showed I was anemic along with other vitamin deficiencies - a side effect of coeliac disease. My GP suggested that in the meantime I cut down on gluten, but it was important NOT to completely cut gluten out of my diet, because this would affect the test results. I have a confession to make. On my way home from my GP appointments I would pass a bakery, selling white chocolate and raspberry scones. And yes I would buy one every time and savour the taste one bite at a time. If I was going to give up gluten I was going to make the most of it while I could!

The day arrived for my test and honestly I don’t know what I was so worried about! I woke up thinking will they just get this over and done with already. Apparently they had! And a few days later I was officially diagnosed with coeliac. I have not eaten a piece of normal bread or pasta since that day in February 2009. Or have I touched another white chocolate and raspberry scone!

Do I feel better since being on a gluten free diet? It’s hard to tell because I didn’t really have any symptoms to start with. But thinking back I was constantly full and bloated after eating - even after half a salad sandwich. I would put it down to over eating and didn’t think anything more of it. I was always tired and very low in energy. I am now no longer anemic and the dark circles under my eyes, which I knew for most of my life, are no longer there. I feel healthier in general and feel great knowing that each bite of gluten I don’t have, my body is repairing itself for a longer and healthier life.

Having my sister with me has been a great help on my gluten free journey. Together we have helped each other with our diets. We always share our stories with each other and get very excited when we discover a new gluten free restaurant or cafĂ©. And now we want to share our discoveries – good and bad – with you, our readers.


  1. I'm so glad your feeling better Romie - I have been on my gluten free diet since 2004 and still feel terribly tired with huge dark circles and no energy.. :(

  2. How lucky that the two of you have each other for support while learning to be gluten-free! I was diagnosed with a biopsy in 2004, after getting sicker and sicker over 8 years. By the time I had the endoscopy I was so sick I thought I was going to die - my GP was so shocked when initial blood tests (not for celiac) came back...she told me "Basically, you're completely malnourished!" Wow - scary stuff. Within 2 weeks of going on the GF diet, EVERY symptom I'd had for 8 years was gone. Incredible. It took another 2 years to properly heal. I also LOVE food, love eating out, and love to it's still a real challenge to be GF. But I have no choice, so I always be sure and carry GF crackers, breakfast bars, soy sauce, etc with me.

    To Anonymous...I would first see if there is ANY chance you're still ingesting gluten, even through cross-contamination like sharing the toaster w/ someone who toasts gluten bread. Barring that, I would go back to your GP for more tests...good luck!

  3. Hi Karen,

    That's great news that your also feeling so much better! :)

    There's def no way I'm getting cross contamination, I have completely stopped eating out at restuarants and I have a seperate toaster and all that jazz.. I don't understand why I haven't gotten better but I've met a few other coeliac's that are still the same way!

    I wonder if there's another underlying cause thats caused by having coeliac that doctors haven't figured out yet.

    I can't wait for the vaccine to come out, the last time I read up on it, they were already doing trials! Fingers crossed!!

  4. I loved reading your story. I can totally relate. My daughter was diagnosed at 21 months back in 2009 - a very unwell little girl. Once diagnosed, the rest of the family was routinely screened and I too discovered unbelievably that I have Coeliac Disease. I am the same as Romie having never suffered and had no obvious symptoms. My last meal was an enormous bowl of delicious pasta on Lygon Street (was visiting Melbs with a friend). If memory serves the dish was called the Godfather - I was going the whole 9 yards. With positive bloods and my endoscopy looming I was going out with a BANG haha. Italian and Coeliac.. well that's just plain mean. All I know is, laughs aside, it's not that bad. I have embraced my inner foodie.
    I love food as much as ever and have these spurts of creativity that never really made an appearance pre-diagnosis. I'm glad you have each other and I'm glad Abb & I have each other. Safety in numbers. Coeliacs Unite! haha