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.
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
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