PERSONAL POST: How Gluten Nearly Killed me

“SELL ME FROM THE TOP SHELF” the lady in the hospital bed opposite me sat bolt upright and screamed at 2.30am in the morning, when I had just been wheeled round to my bed in the medical assessment ward after calling an ambulance. If you follow me on social media, especially on my Twitter, you will know that I have been battling with chronic anaemia for years. Initially they thought it was my endometrioses, but once they treated that about eighteen months ago, I still got nowhere with my iron levels. Tablets didn’t work, liquid didn’t work, so I got booked on for iron IV’s on a regular basis while they investigate the cause.

A few weeks back I started to feel the symptoms of my iron being low, about six weeks after I had an iron IV. The blood test forms the consultant gave me were for as and when to ascertain when I have my next iron IV, so I had a test. Weeks went by and I heard nothing from him. I decided that I must have just been being a drama Queen and maybe if I hadn’t been contacted my iron wasn’t as low as I thought. Fast forward to last Wednesday, and while working form home I went upstairs to go to the toilet and passed out. My Mum called an ambulance for me and explained about my anaemia, and they took me in.

The reason anaemia is so dangerous if left untreated, is because iron makes haemoglobin, and haemoglobin carries oxygen around your blood. So the measurement they use is your haemoglobin levels. They are meant to be at LEAST 115 in a healthy adult female. Mine was 46. The nurse who came to give me the results said she doesn’t know how I was alive and had managed to get myself in the ambulance and be walking and talking. I told her the day before I had travelled by train to my office in Shepherd’s Bush and done a full day of work the day before, but I had also stayed at a spa hotel in London the weekend before as well, and travelled there from Essex. Knowing the protocol like I do, I asked if I was going to get a bed and have an iron IV. This certainly wasn’t my first rodeo, but it certainly was the first time I was at a record-breaking low of 46. Here’s the thing though: iron takes a few days to turn into haemoglobin. I was SO low in my haemoglobin, I actually needed a blood transfusion. Well, I say that I needed A blood transfusion, ultimately I needed 5 bags of blood to bring my levels up to a respectable number. As it takes 4 hours a bag and you need to wait an hour after and then do a blood levels test, I ended up being in hospital two and a half days.

During this time, the consultant that I am under for all of my gastro investigations came round and said “have you been following the gluten-free diet?”. And I was like “have I been following the what now?”. As it turns out, he had found evidence in one of my biopsies of coeliac. I thought he was saying in the letter that he wanted to investigate to see if I had it, but he meant I DID have it (I know that makes me sound like the world’s biggest moron but it was a REALLY confusing letter). Once this had been confirmed I started the gluten-free diet straight away. The third day I was in hospital the doctor and the nurse promised I could go home that day if my bloods were up. Then they came round at around 10am and said they were moving me to the gastro ward to do my small capsule endoscopy while I was in there (I had been referred to have it as outpatient). Now I KNOW how lucky we are that the NHS is free, but it got to my Mum visiting at 2pm and I STILL hadn’t heard a thing about being moved or this test. So I asked the Doctor who confirmed that my bloods were fine but they wanted me to stay in and wait until they order this small capsule test.

As they had to order it, I got the Doctor to basically admit this could be days. Sorry, if the NHS is so underfunded, why on earth would they be prepared to put someone healthy and well in a hospital bed for DAYS waiting for a test? I was having absolutely none of it. I basically said if you don’t discharge me and do this as outpatient (which is how I was meant to have it initially), I will walk out and take my own canula out. They agreed to discharge me and told me AS SOON AS THEY CALL I need to go in for this test. It’s nearly been a week since then and guess what? No call. Lord only knows how long I was going to languish in that hospital just waiting around.

I was also keen to come out because if you think hospital food is bad in general, wait until you need the gluten-free menu. Ultimately I just wanted to get home and start getting used to the coeliac diet. I’m not finding it too bad so far (although the first gluten-free bread I tried was like eating a flip flop). If anyone does have any good gluten-free tips though please do let me know!

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7 responses to “PERSONAL POST: How Gluten Nearly Killed me”

  1. That’s crazy! I’m sorry to hear you’ve had to go through this! I got diagnosed with celiac last December and by a stroke of luck I caught it in the early stages. The advice I have is that it takes a bit of time to start feeling better, so don’t lose courage if you don’t feel better right away.

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  2. Hi to all celiac people everywhere who read this one and other blogs. I am 68 and was officially and irrefutably diagnosed with CD in July of this year (2022) I was told I had celiac disease in 1982 because my blood wouldn’t clot. This diagnosis was later retracted as a pregnancy anomaly.
    Despite that when my third child was on the way in 1992 none of the same team of gynacologists at the same hospital gave me any special precautions or treatment advice. My third pregnancy was a perfect one, very relaxed etc. Yet my third son son died in the womb at 42 weeks of pregnancy. Contractions every 10 minutes, then nothing.
    His autopsy showed no diseases at all. He was otherwise a fine looking 7,5lb boy.
    When you are just diagnosed with CD you read and read as much as you can. I came across one scientific study investigating still births and miscarriages. The authors concluded that in 62% of the still births the mothers were undiagnosed celiacs. There is obviously a connection.
    http://www.reuters.com/article/us-health-fertility-celiac-disease-idUSKBN1JP2Z8

    My talking to him about this my very conscientious internal medicine specialist thinks all pregnant women should be screened for CD. I thoroughly agree with him and I am trying to pass this ‘need to know’ to as many people as I can, not just females. I am more than grateful for his willingness to get to the bottom of what was ailing me.
    I hope I will be excused for using this ‘comment on’ space for my story, it is just that the awfulness of what some of you are going through I do understand, but if you can become aware of your gluten intolerance and get it fixed before you start a family and thus perhaps not get overcome with a tragedy because of anything I’ve written here, then my job was done. Pax et Bonum, Lindy

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  3. […] struck me like it hasn’t for a long time. I’ve been through a lot of health issues recently finding out I was coeliac, so it hasn’t been the first thing on my mind. But thankfully, I am on the mend, I am getting […]

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  4. […] I get to eat at a restaurant where the chef has Michelin stars and his own Wikipedia page. After gluten nearly killed me, I have decided to live life to the fullest, and enjoy every moment of everything fun I do. I […]

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  5. […] a proper go. Way back when I gave CBD oil a go for some stomach pain (which would have been due to coeliac but I didn’t know it then as it has only recently been diagnosed). The error I made though, was that I thought you used it like painkillers, ad-hoc. This was a […]

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  6. […] having to become gluten-free, I was the sort of person that went through phases with food. It has taken me a little while to get […]

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  7. […] the menu with me. One of the most fail-safe things I have always gone for on lunches is steak. Not only did I get anaemic before they knew I was coeliac and needed the iron, but also you can guarantee there is no […]

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