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The Coeliac Label - Do We Really Need to Know We're Coeliac?

Posted , 5 users are following.

jasmine19000
jasmine19000

Ok, so firstly I'd like to make it clear that I'm not saying we, as the coeliac disease sufferer, should eat gluten and go on with our merry wheat, rye and barley lives (why does malt taste so damned good?!), however I was having a lengthy chat with my breathing/posture therapist, (who is also extremely knowledgable on nutrition and body health in general) about labels.

He makes a very valid point (he makes a LOT of valid points... the medical system treating symptoms and not actually fixing problems is an amazing argument!) - for certain things, and he doesn't agree that in those cases it helps us in any way. He basically said - you know your body. You know how you feel when you put X Y or Z into it, therefor, if you know gluten is your enemy, why do you need to have the label of a coeliac? Why torture yourself for another several months to have a diagnosis that will tell you what you already know will help you? Why not just cut it out of your diet and start eating things that make you feel good? Why do all this for a label you don't actually need?

I thought about sounding like a fake if I asked for gluten free at a restaurant, but he's right - who is the waiter to judge whether I can eat it or not...

I thought if I ever ended up in hospital, I can't legitimately say I'm coeliac to avoid being fed gluten in meals. But they should respect my wishes to not eat gluten, (you order your own food most of the time anyway) just as any professional, friend, family member should respect that something you eat makes you ill.

So I can't find a reason - I'm not saying there isn't one. But I'm currently about to send myself through the ringer to have a diagnosis - I have 99% of coeliac symptoms (and they say you can have it if you have just 1 or 2 symptoms 🙄wink - no doubt in my mind that gluten has damaged my stomach and my quality of life - but why is it important to have a diagnosis. Is it not enough to just cut out this evil (oh I'll miss you fresh crunchy baguettes 🥖😢wink protein from your diet (gluten protein.. not protein protein... just to clarify!), and eat as a coeliac should, without having the official label of being a coeliac? 

Just think about it for a minute - diabetics need to know they're diabetic because they require insulin shots (even though I disagree this is a forever thing - you can certainly undo diabetes with certain methods these days) but do coeliacs need anything else?, other than to stay clear of gluten and foods they have become sensitive to, because of the damage to their stomache?

I'm open to opinions - what are your thoughts? Is it completely necessary to put "coeliac" on our forehead? Or can we survive without it?

0 likes, 9 replies

9 Replies

  • victoria04174
    victoria04174 jasmine19000

    Posted

    To put it simply .. Yes we do need to know.

    i have an annual check up at the hospital to check my antibodies levels.  (They also check other stuff at the same time so picked up on things like low vitamin D and iron).

    I get to talk to a consultant annually.

     I've had a bone density scan (which did actually reveal a problem - so I now know I need to be taking extra calcium in my diet and doing certain exercises for that).

    I have dietician appointments.

    it means I'm entitled to a free flu jab

    all of which have been very helpful for me in improving and maintaining my health. 

  • FA54321
    FA54321 jasmine19000

    Posted

    I was going to say the same as Victoria! She’s said it all really, yes, you do need to know, there is so much help you can get by getting a proper diagnosis - as stated in Victoria’s post. Also, you can join Coeliac UK who will help you through the first few months- they will even start you off with free membership for a few months, their membership usually triggers a lot of gluten free packages coming to your door from foods manufacturers that specialise in gluten free foods, while you are finding your feet over what to eat. 

    Once diagnosed, your consultant sees you each year, the annual blood tests are very important, to check that you are absorbing the nutrients from your food, if you are not and any of the levels are low, it will set alarm bells ringing as to whether you made a mistake with your diet or also, some people have what is known as refractory disease, whereupon a gluten free diet doesn’t improve your condition and you need to take medication.  (Left untreated, Coeliac disease can cause other auto immune diseases, or osteoporosis and even cancer, so you need the best help you can get).

  • dje109
    dje109 jasmine19000

    Posted

    I broke my thigh badly last year. No-one could understand why. A blood test revealed I was coeliac and that had given me osteoporosis (I had no other symptoms). I'm now taking phosphate and calcium tablets to build up my bone strength.  I want to to be dealt with by medical professionals who know what they're talking about and can prescribe the best treatment for me: being diagnosed coeliac has allowed all that to happen. You don't need to put 'coeliac' on your forehead but if you're admitted to hospital for other reasons, the benefits of knowing exactly what condition you have extends to more than just making sure you get gluten free food. When it comes to looking after your body, knowledge is power.

    • dje109
      dje109

      Posted

      P.S. I wasn't 'put through the ringer' to get a diagnosis, just a simple, quick blood test. It's no big deal. If your breathing/posture therapist retrains and gets a medical degree, then I might listen to them.

    • jasmine19000
      jasmine19000 dje109

      Posted

      Thank you for your reply. My therapist doesn't have any say over my diet or my conditions - it was just a conversation as we had talked about many things (both of us get a bit passionate about current issues in the medical/pharmaceutical industry). He didn't say I shouldn't, he just asked out of curiosity why it was important to be labelled. So I don't have a problem there, it literally has nothing to do with him. But my moods and anxiety have spiked over the past several months and the breathing therapy hasn't felt easy to control like it did when I was off gluten. Hence my reason for bringing it up with him in the first place. Then he asked me why I was still eating it, and I said for the diagnosis etc. you get what I mean lol

      Unfortunately no, the blood test (and I really wish someone would put out some statistics) is really unreliable - you were lucky for it to come back positive (obviously not "lucky" but that it didn't go undetected and cause you further problems figuring out what you had) but if you look through these coeliac threads in relation to blood tests, I would say you're actually the first person I've come across (on here and people I know) who has had success with the blood test. 

      I've had it and it came back negative, but you need to be eating more gluten than I had been. My doctor had no idea - she said I needed to be eating 2 serves a day for 4 weeks, but everywhere else now says it should have been at least 4-6 serves for over 6 weeks before the blood test will show. And then everyone argues that it can still come back a false negative. 

      The blood test did show that I have liver levels of a long term alcoholic, and inflammatory levels of someone with hepatitis (she asked me if I'd been overseas, or been promiscuous!!!) so clearly something is going wrong, yet she has looked at those issues as separate issues - AND told me I'm not coeliac, move on. Pretty sure those are both symptoms of someone with coeliac, and she should have organised a biopsy, but clearly I need a new GP who doesn't make me feel stupid. 

      Thank you for your response - I agree, now knowing there's more to it than just going gluten free and feeling better, you should have everything closely monitored just in case. 

      I'm very sorry you went through something so awful - I really hope everything improves enough for you to increase quality of life. 

    • dje109
      dje109 jasmine19000

      Posted

      Thanks. You're right, I was lucky in that regard. My blood results were so off the scale that I was advised the endoscopy was a waste of time. Apparently 0-7 is the norm for your antibody count, I was 127, so it was decided me being coeliac was a no brainer! Since going gluten free, I've put weight on ( a good thing because I was very skinny), I'm not anaemic anymore, and I feel fantastic. Still can't walk properly, but I tell people I'm the healthiest cripple you will ever meet!

      Interestingly, my sister in law who's had psoriasis all her life went gluten free last year and her skin problems have practically disappeared. She, too, doesn't want to go through the trauma of eating gluten for 6 weeks before she can be tested, and is happy as she is.

      Good luck with your health outcomes!

  • jasmine19000
    jasmine19000

    Posted

    Hi Victoria and Fiona. I figured it was somewhat going to be like that. I guess I just didn't have an educated answer to give him at the time. He's no decider in any of my health choices, he just purely wanted to know why I felt the label was important. This is a guy who has genuinely rid people of asthma and sleep apnoea. So I can understand his open mindedness to feeling labels can sometimes make things worse than better - but in this case you're right. There are risks involved, and if someone can be monitoring those over the years, then of course, who wouldn't want to make sure they're ok?

    Unfortunately I'm in Australia, so the UK coeliacs probably won't be able to help me. I will have to find someone who specialises in it, because unfortunately (as I posted in my previous threads) the doctor has no clue at all. 

    Thank you for your advice. I'll be going to organise the endoscopy when I find out who can actually help me with that (or find another GP who doesn't push you out the door despite your concerns).

    • FA54321
      FA54321 jasmine19000

      Posted

      Hi Jasmine, I didn’t realise you were in Australia. I hope you manage to find a sympathetic GP soon. 
  • debbie19830
    debbie19830 jasmine19000

    Posted

    Hi, whilst I totally understand what you are saying and why you are asking I have to also agree with what others have already said, however, I am labelled as Non Coeliac Gluten Intolerant due to a negative blood screen, however my first thoughts I had coeliac were skin problems I am certain I had DH. I have never had the endoscopy etc and I can live with that although it does worry me a little that I wont be tested for everything annually but I do have a very sympathetic very switched on GP who keeps an eye on my bloods etc which have always been right at the top of optimum, I am also dairy intolerant and hypothyroid.

    My other thought is genetics, for those not fully tested and diagnosed will that mean that their family members may be overlooked for screening etc

    just my thoughts

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