Gluten Free Dublin – Part 3

Antoinette Gluten Free Dublin

Antoinette’s Bakery is that Holy Grail for coeliacs – a fully gluten-free bakery. And with tasty treats to purchase. It’s just off Camden Street, near St Patrick’s Cathedral and St Stephen’s Green. I always make a pilgrimmage when I’m in Dublin to stock up. They also seem to do very good coffee, but that’s not something I can comment on personally. Highlights from my visits include cinnamon cakes, cookies, lemon cake, and a ‘Yes’ cupcake from the gay marriage referendum. And world’s most awesome bag for life.

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My most recent trip to Dublin included dinner at Green 19, also on Camden Street. I’d been years ago before I was diagnosed with coeliac disease and enjoyed their food, so was delighted to see that they had gluten free listed right on their menu. There’s even gluten free beer (Bru Lager). It’s another great place for coeliacs who don’t want to feel like they’re dragging their friends to a random restaurant just because it serves gluten free food. Our Dublin friends go there even when I’m not around. And the food is amazingly tasty. I had some awesome pork belly with potatoes and vegetables, a description which does not do the meal justice. The chocolate brownie, while usually the stereotypical gluten free offering, was a hit with my ‘normal’ friends and definitely worth a try. Apologies for the bad photos, it’s a problem of hipster restaurants that there’s never enough light…

Looking for more Dublin reviews? Check out parts one and two of my Dublin posts.

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My Coeliac Diagnosis – Part 2

Welcome back to my diagnosis story! See Part One for the story of my symptoms and journey up until the blood test. This post won’t have many exciting photos because you probably don’t want to see photos of my couch or internal organs…

‘Well, your B12 is low but not horrible. But you have coeliac disease.’

My GP’s words obviously stopped me in my tracks. I had gone in expecting a vitamin jab and walked out with an autoimmune disease. Luckily I had at least heard of coeliac disease before, even if I had no idea what it fully meant.

After a few moments of shock I hit the internet. Research tendencies run strong in my family, so both my mother and I probably spent the entire week (and a lot of time since!) tracking down all the information we could about coeliac disease. Although it did take my mother a few hours more to start than me, as she was in Cuba at the time and didn’t have phone or internet access! Supposedly she got part of a text from me saying ‘Good news: my B12 is okay. Bad news:…’ and the rest didn’t load. Not a great text for a mother to receive from a daughter who already lives 3000 miles from home.

Of course one of my first questions was: ‘When and how do I start feeling better?’ Everyone said that coeliac was more easily treatable (in comparison to diabetes or Crohn’s disease) once you could go on the gluten free diet. My GP had told me that even though my bloods were very high I would still need the endoscopy as the ‘gold standard’ of diagnosis.

Which started 3 months of investigating the labyrinth systems of the NHS from my couch.

I will be eternally grateful to the NHS and my GP for running the blood test and diagnosing me. I know that I experienced so much less hassle and run-around in the first stages of my coeliac journey than many who complained of severe symptoms to their doctors for years. But the pressures on the NHS for services that fall between ‘routine’ and ‘immediately life threatening’ were very apparent in my journey to getting the endoscopy. While my private healthcare in the USA might never have diagnosed me, I would have been able to get an endoscopy within 24-48 hours of the blood results. Shows that no system is perfect!

The period between diagnosis and the endoscopy are now (thankfully) a bit of a haze. My doctor had me up my gluten consumption to ensure that the endoscopy would be valid. This of course knocked me out completely. I was fortunate to be in my second year of PhD at this time and was able to spend 3 months on the couch attempting to clamber through the brain fog, exhaustion and bloating. I have since regretted not using this time to catch up on lots of box sets, but instead watched a lot of BBC1 daytime programming (shout out to Homes Under the Hammer and Bargain Hunt). I did a lot of research into coeliac disease and started collecting recipes. Having spoken to others since who had already gone gluten free before coeliac was mentioned I am also very glad that my doctor told me to continue eating gluten and to get the endoscopy, even if it seemed awful at the time.

Photo of the last gluten-filled cake I made. Not my best effort!

Photo of the last gluten-filled cake I made. Not my best effort.

I also got the normal ‘newly diagnosed’ medical fun: new vaccines and an osteoporosis test. It was at the bone density scan, held at Addenbrooke’s in Cambridge, that I discovered exactly how long it might take me to get my endoscopy. The test itself was already over a month after the blood results, and I had an appointment scheduled in another department for two weeks later. I assumed the second appointment was for the endoscopy itself but had received no information about fasting or preparation. While at Addenbrooke’s I went to the gastro department to check about preparation only to find out that the first appointment was with an administrator to establish why I needed an endoscopy, and that the endoscopy itself would be weeks after that appointment. I promptly burst into tears and told the (thankfully very sympathetic) receptionist that I desperately needed this endoscopy because I was in constant pain and already knew why! Luckily she managed to find me an appointment with the administrator that week, so I managed to move the entire process forward by a few weeks.

The endoscopy itself was fine. I was all about the drugs so got both the injected Valium and the throat-numbing spray. The nurses could tell that the Valium was working when they used the spray and my first comment was ‘This tastes like bananas. Is that someone’s job? Does someone just taste medicines?’ (Serious question: Does anyone actually know if this job exists?)

In addition to confirming that my villi were completely destroyed, the endoscopy also discovered that I have ‘ectopic pancreatic tissue’, or ‘pancreatic rest’. Supposedly this is when there are some pancreatic cells in your stomach, and it’s not uncommon but hardly anyone ever finds out unless they have an endoscopy! Of course I was completely out on drugs when they told me this, so had to do some Googling when I got home to see if I had imagined it or not.

That endoscopy was now three years ago and I have been gluten free ever since. It’s not been easy but I’ve had oodles of support from my family and friends, as well as the awesome coeliac internet community. This blog will be my way of helping others, both newly and oldly diagnosed, with the musings and wanderings of my daily life as a coeliac.

If you are looking for further information about being diagnosed, other brave bloggers have shared their stories. Or look at the #CoeliacUKAwarenessWeek hashtag on Twitter for more!

Gluten Free B

Fabulously Free From

Positively Coeliac

The Happy Coeliac

Not A Trace

Gluten Free By the Sea

Gluten Free Cuppa Tea (in video!)

Gluten Dude (with lots of reader stories)

Great article by David, posted on Little Missed Gluten, about coeliac and depression

My Coeliac Diagnosis – Part 1

One of the most interesting things about coeliac disease is the multitude of symptoms and the unending variation in how people were diagnosed. Everyone has their own story and tribulations. This is mine! If you’d like to know more about me and the blog generally, please visit my ‘About Me‘ page.

I know I didn’t have coeliac before puberty, because I was definitely not a ‘failure to thrive’ child! I was always in the back row of class photos through primary school, and have been the same height since around the age of 11. Unfortunately that height is 5’4 so I was soon relegated to the front rows.

Standing next to the same fireplace at 12 and 25. Not much height difference!

Standing next to the same fireplace at 12 and 25. Not much height difference!

It is difficult now to know what triggered my coeliac disease or when exactly I started showing symptoms. There are two things that might have caused it: puberty or glandular fever (aka mono).

During my teenage years I was ill a lot and was constantly in need of sleep. I suffered from depression and was diagnosed with anaemia for a few years, both coeliac symptoms. However it is impossible to know if these were just ‘normal teenage growing pains’ or a sign of coeliac disease. Certainly no doctor thought to test me for it at this time!

The second possible trigger was a bad case of glandular fever during my first year at university. I probably caught it from my sister at Christmas, but was tested before returning to uni and told it was negative. Fast forward two terms of exhaustion, and two weeks of intensive internships, before I went back to the doctor to be told I’d had glandular fever for over six months. Being in my first year at university I had not necessarily been treating my health as well as I could have been anyway, which just exacerbated the effects of the glandular fever. In the end I was in bed for 3 months over the summer and spent another year exhausted.

It is hard to differentiate the exhaustion caused by illness and that caused by coeliac disease. I never fully recovered from the glandular fever and the years leading up to my diagnosis seem a bit of a haze of tiredness and brain fog. But I don’t know when these were the symptoms of glandular fever, and when they were of coeliac!

I also spent the 4.5 years between glandular fever and my diagnosis at university, first as an undergraduate then through masters and into my PhD. I attributed most of my tiredness and digestive problems to being a student, because everyone didn’t get enough sleep and didn’t eat right. Even when I bloated enough to look 5 months pregnant I assumed this was normal.

Me about a month before diagnosis, looking puffy and exhausted.

Me about a month before diagnosis, looking puffy and exhausted.

Things finally came to a head in January of my second year of PhD. Throughout this entire period I was receiving yearly physicals through my private healthcare in the USA. My doctor had flagged up Vitamin B12 deficiencies for a number of years but never asked about other possible symptoms or ran a coeliac blood test. (After diagnosis I discovered this was because I hadn’t had bad gastro problems, so my insurance wouldn’t have covered the test. I informed her that I would have happily paid for the 3-4 years of extra health if she’d ever given me the option.) I assumed that the NHS was unlikely to give out vitamin jabs when multi-vitamins were available so had never followed up in the UK. However at this time I was living with a housemate who was a fantastic baker and I decided to do more baking of my own. Within a few weeks I was on the couch most days unable to concentrate or wake up. I read about B12 anaemia and discovered that the NHS would give some jabs, so decided to go to my GP and try my luck.

When I arrived at my GP and explained that I needed B12 jabs he, very fortunately, decided to run a full set of bloods to rule out anything else. After a quite traumatic blood-taking (photo at bottom if you’re not squeamish!) I arrived back a week later to hear the results.

‘Well, your B12 is low but not horrible. But you have coeliac disease.’

See Part Two for the journey from diagnosis to endoscopy! (Coming soon)

This post was written for Coeliac Awareness Week 2015. If you think you have any symptoms of coeliac disease (including fatigue, bloating, ‘brain fog’, depression, gastro unrest) please visit https://www.isitcoeliacdisease.org.uk to take the self-assessment.

WARNING: Photo of traumatic blood-taking

Took a photo to send to my parents in case I was bleeding internally. (I was not on my best form)

Took a photo to send to my parents in case I was bleeding internally. I was not on my best form at that time.