Coeliac UK’s Gut Feeling Awareness Week – My Diagnosis

gut_feeling_1807-3-blue_new_350_wide_0To coincide with Coeliac UK’s 2013 Gut Feeling Awareness Week (13th – 19th May), I am reposting details about my diagnosis with coeliac disease earlier this year, in order to help raise awareness of the condition.

The aim of the Gut Feeling Awareness Week is to spread awareness of coeliac disease and target the half a million people who are living with the condition but have not yet received a diagnosis.

  • Coeliac disease is still not as widely recognised as it should be, often meaning that medical diagnosis can take an average of 13 years.
  • 1 in 100 people have coeliac disease however only 1 in 8 of those with the condition are diagnosed.
  • Over half a million people in the UK have coeliac disease but don’t know it. Coeliac UK is targeting them to improve diagnosis and ensure they receive the care they need.

Here’s my story.

So, let’s go back to the beginning (sorry it’s quite long, but hopefully this explains my diagnosis and my emotions regarding it)…

During the Summer of 2012 I was regularly having home made pasta salads for lunch, but when I started getting regular bouts of diarrhoea it was the beetroot in the salad that was blamed. I’d been regularly eating pasta all my life so it couldn’t possibly have been that?

The beetroot was cut out of the salad, but the symptoms persisted and at this point I still hadn’t made the connection to the pasta and thought it must’ve been a bug. I was considering making a doctors appointment but didn’t want to be wasting their time if it was just a bug, however given my past experiences of mentioning things while I’ve been at the doctors I thought it was probably a good idea. I made an appointment and a stool sample was sent for tests. A few weeks later this came back negative, but it had only been tested for a bug.

As the symptoms continued and got worse, I went back to the doctors and said that there was still a problem and that I felt further tests were needed. By this point I’d started to keep a log of what I was eating, but it still wasn’t that obvious to be the gluten as I wasn’t aware of quite how much it was in, just the obvious things like bread and pasta.

It was at this appointment that the nurse suggested a blood test to test for coeliac disease but also said it could have been something like IBS instead, so in the mean time suggested taking IBS tablets while I waited for the blood test results. Hearing the word ‘disease’ was awful and I started to get quite emotional, but when I got home to explain it to my boyfriend I broke down, this was just another thing wrong with me.

We started to do some research on coeliac disease and suddenly everything made sense, even without the test results. As well as the obvious symptom of diarrhoea other symptoms include headaches (regular sufferer of these), tiredness (I’ve always slept a lot longer than the average person and when I was younger needed a sleep when I got home from work), mouth ulcers (again, a regular occurrence that I always assumed was stress related), skin rash (I’ve been prescribed numerous things for dry itchy skin, none of which have worked) and anaemia (although never diagnosed I’ve been tested for this on a couple of occasions).

The blood test came back positive (no surprise there then), but I was then referred for a gastroscopy / gut biopsy (a biopsy involves a small camera called an endoscope being passed through your mouth and stomach into the gut, biopsies are collected and examined under a microscope to check for gut damage typical in coeliac disease), however when I received my ‘choose and book’ appointment letter (during November 2012) the next available appointment was at the end of January 2013. Up until the appointment I would need to keep having gluten in my diet otherwise the test could come back negative, so this seemed a very long time to wait.

My symptoms were continuing and getting more severe and I was now having severe stomach cramps for days on end after having gluten, so I tried calling the hospital, my doctor and the Patient Advice and Liaison Service to see if there was anyway that it could be brought forward, but apparently the only way this could happen (and the chances were still slim) was if my GP surgery wrote a letter to the hospital explaining how bad my symptoms now were and that it should be brought forward, however by this point I’d try to remove as much gluten as possible from my diet, but where it was still creeping in the reactions were even worse (as a general guideline, the recommendation is to eat some gluten in more than one meal every day for at least 6 weeks before testing).

After work on the 19th December I returned home to a letter from the hospital advising that the procedure would now be taking place the following week. Although this was great news that it had been brought forward, it also meant I had to consume a lot of gluten over the festive period to ensure the test results were accurate. This meant I felt rubbish for the entire period and Christmas Day was spent feeling exceptionally unwell, but if it meant it was over soon and I could go gluten free then it was worth it.

The day of the procedure arrived and I was feeling brave, I was going to have the throat spray rather than the sedation (mainly so I could leave as quickly as possible afterwards), but on reflection this probably wasn’t my best move. The process was horrible and as mentioned on other blogs you are belching through the entire thing and you can feel the endoscope moving through your body and your body inflating. It’s not nice but it was over quickly and I was able to walk back to the waiting room and my boyfriend and await my discharge report.

Following the biopsy I was now gluten free and started to test out the products available and realising which of my favourite foods I could no longer have. During January (before my original appointment was due to take place) I received the positive diagnosis for coeliac disease.

It since turned out that my appointment in January was only due to be a consultant appointment and not the actual procedure, so if I’d have had to wait until then only for another delay I wouldn’t have been too happy!

I’ve since met with the consultant (albeit briefly) and then with the nutritionist who gave me some much needed advice (although it may have been helpful to have had this when I first went gluten free and not 3 months later). She took some bloods and it turns out my folic acid levels are low so I’m now taking supplements for this until my next appointment in 3 months and hopefully they’ll have improved by then, as the gluten removes itself from my body.

I feel so much better since changing my diet in terms of the symptoms but also health wise. I’m now exercising a lot more and feel a lot less lethargic than I did.

There are obviously going to be times when I inadvertently have gluten, particularly at the beginning as I’m still trying to work out what it’s in, but when I do I know about it straight away.

I’ve heard people say that they’ve been advised to keep a little bit in their diet so that when they do have it the symptoms aren’t as bad, but my opinion is that this is stupid. Every time you’re consuming it it’s damaging your body, so why would you want to choose to continue doing that?!

Thank you for reading my diagnosis story and I hope gut_feeling_1807-3-blue_new_for_aw_with_fb_text_1you find it helpful.

If you suffer from bloating, fatigue, IBS, diarrhoea, vomiting, anaemia or abdominal pain or any of the symptoms suffered by myself, you could be living with coeliac disease and not know it. Listen to your gut with Coeliac UK’s Gut Feeling campaign – visit www.coeliac.org.uk/gutfeeling for info.

For more information about coeliac disease, please read the attached document from Coeliac UK: Coeliac_Disease_Key_Messages

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