Getting personal – The Beauty and the Coeliac

Posted: September 14, 2011 in Health, My two cents..., Science, What's in my head...
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The title – yeah you can decide who is who…

Picture this. It is Christmas 2010. There is a big chill. Snow covers the ground, the little town of Maghull, Liverpool, England, is covered in 2 ft of snow/sludge. The roads are undriveable. Yet the Christmas spirit oozes through the air as neighbours and strangers help dig car after car out of their icy prisons. And there is me, sitting in one of those cars, thinking about how this weather is making me feel so much more god damn anxious. Going the supermarket already made me feel like I was about to go over the top in world war II. Now we’ve added this dangerous weather to the equation (that plus the utter lack of gritting put in place by Sefton council, honestly it was dreadful. Britain needs to learn a few lessons from places like Alaska…). It was too much. My heart would palpitate in my chest. My nails were bitten down to the bone. And there was always this impending sense of doom like something bad was always going to happen, and there was nothing good in my life. Now I’m not one to complain about my own problems. I will complain the shit out of the pretty meaningless stuff – as you’ve probably seen. But when it came to this, I didn’t like to make people aware of it. At first I didn’t even know it was anxiety. All I knew is I felt like I was dying every time I went out of the house. I would feel sick – like genuinely sick as though I’m gonna hurt all over on of my friends cars. My whole body would shake and even if I was wrapped up warm in that winter chill, I still felt like I was naked in the snow. But then things started to get worse. People were noticing that I wasn’t okay. And when it came to Uni, my final year of uni I might add, I had this daunting and unthinkable task ahead of me – lab. The thought of doing something I despised so much to begin with, every day and in an environment that made me feel so inadequate, and so stupid all the time – well, I wasn’t thrilled at the idea to say the least. But I went. I didn’t have a choice. And a day would come, I’d have all these feelings, but I would make it through. Then another would come, and I would again battle on. Every day felt like that – a battle. One that I was losing. Then I did something stupid. I went for a coffee at lunch time. I didn’t realise how much of an effect caffeine has on your system – especially when you are in my state. The result? Well I really did lose the battle. I near on collapsed in lab, in front of strangers, doctors, students and my dissertation supervisor. It was horrible. Excruciatingly embarrassing. And it was the last thing I wanted to happen. But it did.

Those doctors I mentioned (who were in lab trying to do a year of pharmacology) took me away, told me to tell them all my symptoms. I did. Then they said that I should go the hospital and it was just down the road and we will run some tests and figure out what was wrong. Well, I didn’t want to go. But the prospect of figuring this out once and for all – well that was too good to pass up. So I went. Two hours later I’m in the hospital waiting area. The doctors who sent me have abandoned me. And the drunk man who is speaking in what I can only describe as aramaic, won’t leave me alone. The nurses have already tried to get me to go home. “Your not an emergency… leave.” Believe me, I wanted to. But when two doctors tell you to go to ED, you go. So for that reason I ignored Nurse McSnotty and stuck it. Nine hours I was in that hospital. Nine hours. I got home at 9 o’clock. And what had I achieved? Well nothing. The doctor who finally saw me took some blood, and gave me an ECG because I had an irregular heart beat. But after all of that, he basically said – “There is nothing wrong with you. Your fine.” Fine. I wasn’t fine. You only had to look at me to see that. People who are fine don’t collapse in lab. People who are fine don’t feel like tearing their hair out every time they go the supermarket. I knew I wasn’t fine.

So, I went back home to Maghull. Got an appointment with my doctors surgery. “Sorry, your doctor’s away at the moment, you will have to see the stand in doctor.” Great. He’s about 70 and doesn’t know me from adam. But I go. He immediately keeps saying how he thinks I’m pregnant. I actually laugh in his face. Then he says my family history is too relevant to ignore, so he sends me for another blood test (That by the way, was one of the worst experiences of my life. Picture two ‘nurses’ on both arms poking needle after needle into my arm because I have ‘bad vains’.) Blood test comes back. All clear. “Your fine.” I’M NOT FINE! And so I wait. Hopefully it was just a phase, I’ll be okay. It’s not long until I’m back into the same routine. Battling through every day. My mums getting worried. So she spends £300 sending me to learn transcedental meditation because she is sure the problem is anxiety. I’m starting to agree with her. So I go. It’s weird. I’d tell you how weird but I’ve signed a legally binding contract not to. Overlooking that though, it does work. At least for a while. My anxiety gets a little bit better the more I meditate. Finally I think this is over. It’s not.

Then the small little symptoms I had with the anxiety become the big problems. I feel sick all the time. My stomach feels like it’s a balloon with an elephant sitting on it all the time. My stomachs upset all the time. At first I thought it was a bug. But it didn’t go away. And then being so sick, made me anxious again. I was terrified of getting poorly every time I left the house. This can’t be happening to me. I can’t concentrate. My final exams are coming, and everything I try to learn goes through one year and out the other. My reptilian brain is in overdrive because of the anxiety and the shear panic that I’m gonna fail. Which in itself means I can’t take in any information. Then the pains kicked in. Excruciating stomach pains.  I can’t go on like this. Somewhere between exams and revision, I get the doctors – once again. This time it was different. He was genuinely puzzled. He called me a medical  mystery. I indicated that I thought it might be endometriosis as it runs in my family. He said he was going to run a wide ranged of tests to narrow things down. He sends me for another blood test. Then he sends me for a scan of my womb. That comes back fine. And then, finally, when the exams are over, Uni is done – I get a phone call.

“Hello is that Hannah?”
“Yes.”
“Its your doctor here. Hannah I’ve realised what is wrong with you. You have Coeliac disease.”
“I have what…?”

I’d never even heard of it. Three years of pharmacology, fourteen years of ER (what a show…) and twenty one years on this earth. Blank. Well it turns out it affects 1 percent of the population. Which, given there are over 6 billion people on the planet that is about the same as the population of Britain suffering from it.  A wave of relief washes over me. It wasn’t in my head – is the first thing I think. The lecture my mum gave me just days before about how much I need to ‘get over this’ and ‘sort my life out’ then comes to mind (I made sure to tell her off for that one). And then I learn about it. I’m allergic to wheat, barley and rye. Hmm… how many foods can that be in really? Yeah – a lot. I realise I can’t eat pizza… Nooooo. KFC? Gone. Every day there’s a new food I realise I can’t eat. Bread. BREAD! I’m gutted. I’m also told not to eat lactose until  my intestine heals – apparently there’s big sores up and down it. My anxiety? Yeah turns out that is a massive symptom of Coeliac. It takes time for me to digest it all. Its July. 6 of the worst months of my life – and I finally know what’s wrong.

I immediately go on the gluten free diet. I feel better pretty much the next day. Its only then I realise how sick I was. So so sick. How I managed things the way they were – I don’t know. I really don’t know.

Its now September. Almost two months after my diagnosis. How do I feel? Well not great. I still get sick. Quite a lot. Sometimes gluten sneaks its way into my diet. You can imagine the result. And now I’ve been told they want to send me for an endoscopy. To check I’m healing and that there is nothing else going on. Because apparently I shouldn’t still be being poorly. Someone mentions IBS. I’m literally praying I don’t have IBS too. The anxiety? My biggest foe. Well it comes and goes. Honestly the meditation helps. But it could be years until I’ve tackled that properly. It’s just a big learning curve. All of it. What I can and can’t eat. Where I can eat (pretty much no where trust me, gluten free restaurants are in their minority). And just the general learning to live with it. Checking labels. How to tell people – because inevitably you have to – without them thinking your on a food fad or some sort of freak. I’ve had hiccups. I will definitely have more, but as far as I’m concerned it will get under control. And at the moment, I’m coping. Its not a battle, its not great but I’m getting through.

So if your a Coeliac, I salute you. Its tough. If you’ve just been diagnosed, well, like me your on a learning curve. But they tell me – it gets better. I’m just waiting for that day.

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Comments
  1. For a healthy living, every one of us should have good diet and exercise regimens. This is all the more important for pregnant women. These women must eat a healthy and balanced diet. This is not only for maintaining a good health during pregnancy and the post-pregnancy period but for the health of the baby also.

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