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WHAT IT’S REALLY LIKE HAVING COELIAC DISEASE

02/09/2015

OK, so, I’m doing this. This is a post that I have wanted to write for an incredibly long time now however, as it is something so close to my heart, and something that I live with every day (as do millions of others) it just had to be done right, and whilst I am a huge fan of the written word and generally find that writing comes ridiculously easy to me (it’s just everything else in life that doesn’t), this is something I’m struggling with a little because there is just so much to say. Also, despite the fact that having coeliac disease is in no way a positive thing – anything meaning you can’t eat “normal’ doughnuts and french stick can never be considered positive – I don’t want this to be a really negative, debbie downer post. More of a “here’s the brutal/blunt/[insert your own choice of honest synonym here] view of what it’s really like to have coeliac disease”.

Let’s start with the very basic, brief reasons I’m even writing this post:

1) One of my main reasons for starting this blog nearly 3 years ago was to spread awareness of coeliac disease and any amazing GF finds. That’s dramatically dropped off since the fashion and beauty collaborations came flooding in but it is definitely something that will feature regularly from now on as I’ve had so many lovely messages saying that it’s helped people so much.

2) Despite it becoming a “trendy” thing – don’t even get me started on this… in fact do get me started, just not yet, I’m saving that for later – there are still many unaware of exactly what it is, so I hope that this helps. When I was diagnosed 5 years ago, there wasn’t many gluten free blogs around that I could really relate to (as a 17 year old with no idea what barley malt extract was) so maybe I could be that person for at least one person.

3) This is a lifestyle blog. Yes I post a lot of fashion – and always will do – but even OOTD’s have a huge lifestyle aspect and this, coeliac disease, is a huge part of my life.

4) Coeliac disease causes all sorts of horrendous symptoms – of which I go into (multiple times because who doesn’t want to say diarrhoea over and over in a post) shortly – however I think there’s an assumption that you have the symptoms, get over them and that’s that. I’m not sure people realise that every time a coeliac is gluten’d, it causes irreparable damage to the villi (the outer surface area of the intestine) that in the long run, can be life threatening.

Symptoms and Diagnosis
I was diagnosed at the age of 17 after a blood test and biopsy. Which all sounds pretty simple right? Wrong… My diagnosis came after 2 years of serious health issues, operations, hospital stays and generally just terribly ill health. I had so many different symptoms from so many different conditions – yeah, I went hard instead of going home, literally – which made it much harder to diagnose. However, a combination of – are you ready for the really sexy part? – constipation, diarrhoea (yep, I had both alternatively), sickness, nausea, fatigue, muscle/joint pains and extreme weight loss convinced the doctor that this might be a cause to some of my problems. And it turns out it was. I went home with a booklet of what coeliac disease was and was told to never touch gluten again.
Living with Coeliac disease
It’s funny because so many people have asked me whether the moment I was diagnosed was one of the worst days of my life, but you know what? It almost couldn’t have been more opposite. After feeling like death warmed up for so long, it was a relief to finally have some form of diagnosis and more than anything, hope that I might actually start to feel “normal” soon. 
It was only when I came away and looked up this little thing called gluten and thought;


Holy fuck, I can’t eat anything
As a girl that lived off of bread, pasta, doughnuts and all the stodge, my diet literally had to be completely overhauled and totally transformed. One thing that I discovered and would suggest to anyone newly diagnosed is to go simple and natural and what I mean by that is that most food which is only one ingredient tends to be gluten free. Unless it’s wheat, barley, rye, non gluten free oats then you’re fucked of course. Things like meat/fish, eggs, beans/pulses, potatoes, rice, veg etc. are all naturally gluten free so I stuck with food like that. Another huge thing to be aware of are things that you would naturally choose to go with that kind of meal. I immediately gluten’d myself by pouring gravy over my meal and added brown sauce to my bacon because I just never even thought that it might contain it. Sneaky little buggers. But you get used to being more vigilant than security at airports. I can now scan the back of a food packet and discover if it’s gluten free or not in a matter of seconds #Skills #TheyDontTeachYouThatAtSchool.

Back when I was diagnosed, supermarkets didn’t have a huge gluten free selection however now you can find pasta’s/bread/bagels/cakes/[insert your own form of product that’s not normally gluten free… woe is life] in abundance. However, be warned, 9 times out of 10 they will not taste like the gluten filled counterpart. Imagine cardboard mixed with sawdust, covered in salt or sugar… ta dah! 

So eating gluten free at home is easy for me. I love potatoes, I love meat etc. and if I fancy pasta or something gluteny, I buy the gluten free version. But it’s eating out socially that I wanted to talk about and is actually a huge, huge part of this post and the reason that I wanted to write it to begin with. Many would assume that the worst part about eating out socially is finding somewhere gluten free. And it is. Kind of. If I’m with family or close friends, it doesn’t bother me for a second. I am blessed with family and a fiance that have become my own gluten free martyrs and will inquire about gluten free menu and cross contamination before I even get a chance to myself. (Side note: I might be being a soppy cow shedding a tear at just how wonderful they really are) However, if it’s a social occasion and I don’t know people very well, or I’m not sure of where we’ll be eating so I can’t ring up in advance, this is when it gets really, really tough.
My job as a full time blogger means that I attend many events and breakfast/lunch/coffee meetings etc. and as a self conscious person at the best of times, I can genuinely feel myself shrivel inside at the thought of having to call over a waiter and explain that I need to know what’s gluten free in front of people that I don’t know. It’s the embarrassment of people then asking about it, it’s the embarrassment of turning down the bread basket and people assuming that you’re on a diet, the pitying apologies as people dig in to the bread and oil whilst you dramatically enthuse that it’s not a problem at all whilst secretly wanted to punch them in the face. It’s comments like “Ohhh you can’t eat gluten, so that’s why you’re so slim” that makes me want to throw the table up in the air (in my head, I do. In reality I politely explain that that’s actually not true and gluten free products are usually a lot worse for you than gluten filled products as they’re pumped with chemicals. Plus the fact that I have a fast metablosim, but what the fuck hell does it have to do with then, anyway? You wouldn’t say, “Oh, you love bread, that’s why you’re fat” would you?).

And I know that I am being totally ridiculous, I know that people are generally quite aware of gluten but this is almost the problem. People are aware of gluten because it’s all of a sudden become this huge fad in the last few years and here is why that is not OK.

Before the bandwagon began, gluten free meant the food was gluten free, the kitchen in which it was cooked in was totally gluten free… it basically meant that it was completely safe. Nowadays however, people/restaurants have cottoned on to the fact that it’s slightly faddy and a lot of people certainly don’t need to eat that way and because of this, “gluten free measures” have been relaxed. I can’t even begin to tell you the amount of times a waiter has said “Do you actually have to eat gluten free because of an allergy or are you just gluten free?”

What the f**k does that even mean?

Well, what it means is that when you order gluten free at a restaurant, some places are clearly not taking every precaution to ensure that your meal is 100% gluten free and that’s why people jumping on the bandwagon is not OK. It makes it less safe for those that are going to be really dangerously ill if that kitchen that wasn’t cleaned properly leaks a crumb onto their meal. I know that some coeliacs are grateful for the bandwagon because it’s brought attention to coeliac disease and there are now more gluten free choices available, and I get that. But if I’m honest, I’d rather take a packed lunch – yep, I always end up having to do that because I can not be amongst people eating when I can’t touch a thing (this happened very recently and it was embarrassing, awkward but most significantly, I was frickin starving!) – than risk being ill. I really hope this doesn’t make me sound like a moaning, moping myrtle but sometimes I wish these people that say they are gluten free – and then go on to order pasta “because it’s worth it” – could see me after being gluten’d, because they’d realise that this “trendy” disease is not something to be taken lightly.

I think it’s clear that I’ve clearly gone off on 50 billion tangents in this post and if I’m honest, that’s what I was petrified about. I have never been so passionate about a post so I pray to God that the points that I’m trying to get across, actually get across.

As much as I could bore you all to death waffle on for so much longer, I am forcing myself to stop here. Right now, life as a coeliac for me looks like this. On a day to day basis… I can be fine, great even. I still have “bowel/fatigue symptoms” left over from the damage that gluten has done, but life isn’t perfect for anyone is it? I try my absolute best to be safe and not get gluten’d, but I also try to live and enjoy eating out with friends. If I go out socially to eat, life is a little awkward and embarrassing and sometimes tough. And if I get gluten’d? Life looks a little bit like vomit, nausea, an all over body rash, diarrhoea, constipation – And the award for the bluntest/brutal/most honest coeliac in existence goes to…. – severe fatigue and general grogginess. (and as a result of that, days in bed watching Harry Potter with a Hot Chocolate).

I really, really hope that this was helpful to read. If even one person can benefit from this – a fellow coeliac, someone who thinks they may have the disease or even someone that now understands it a little better – then this verbal diarrhoea outpouring of my thoughts would have been totally worth it.

I would love to know if you have coeliac disease and how you find life as a coeliac? I would love to know if you don’t and what your general view of gluten free is? Basically, I want to hear anything you have to say in regards to this post 🙂

As always, thank you so much for reading. I hope you enjoyed this post!
xx

96 responses to “WHAT IT’S REALLY LIKE HAVING COELIAC DISEASE”

  1. Holly Olivia says:

    I'm on a gluten free diet too! The doctor doesn't think it is coeliac, just an intolerance, but I get the same symptoms when I eat gluten and was also ill for months last year until I realised that I couldn't eat wheat/gluten. I share your skepticism about eating out, I'm always scared that something will be cross contaminated and make me ill, as I have a low tolerance level to gluten. Great post!

    Holly x

    bisoushollyolivia.blogspot.co.uk

  2. Kate A says:

    I'm actually gluten and dairy intolerant! I refused to have the coeliac camera test cos I wouldn't be able to eat the gluten prior to the test! I'm terrified of being 'glutened' cos I know it will ruin the next few days for me! Great post!

    Gold Dust
    x

    • Hi Kate, I completely know how you feel. There is nothing worse than being gluten'd and why wuld you want to put yourself through that for a diagnosis when you can eat gf and feel better!

      xx

  3. Rosy Flynn says:

    This was such an interesting read, I have a bowel disease too which means I can't eat a number of things and eating out can also be a challenge and my symptoms are pretty similar too.

    Loved the honesty in this post.

    Rosy | sparklesoflight76.blogspot.co.uk

  4. I think this disease need to be highlighted in our society.
    Some people think that people who eat less and eat gluten free food are picky.
    Even me is not even aware of this and thanks Elle for sharing this 🙂

    The Bandwagon Chic | Instagram | Bloglovin | Snapchat: bandwagonchic

  5. I LOVE that you've written about this, Elle! I'm don't have coeliac disease (thankfully) and I'm so grateful that I can eat gluten but it winds me up too when I see people asking for gluten free food because it's become a fad diet! I just think, be fucking grateful you can eat gluten when others, like yourself, can't and suffer horrendously! I hate fad diets, can you tell!? I think you've done an amazing job with this post xxx

    Sam // Samantha Betteridge

    • Thanks so much for your lovely comment Sam, it absolutely makes my day that people can resonate with it and find this useful. So, so with you on that, who on earth would chose not to eat it… I'll never understand it. Thanks again lovely!

      xx

  6. Aisling says:

    Oh celiac, you little bitch. Obviously I face all the same problems as you do. I'm not sure if I mentioned but two weeks ago I went to a restaurant that said they had gluten free pasta. Perfect! I ordered my gluten free meal, the woman repeated "gluten free" back to me, and I thought I was in the clear. Nope. Turns out while the pasta was gluten free, the sauce wasn't. It's been two weeks and I'm just able to walk more than 10 minutes again. I've had it compared to a dairy intolerance (which I don't want to make light of but definitely isn't usually as severe). Dairy intolerance people can be the worst because they'll point out that they have the intolerance but that they are going to "cheat" and "eat ice cream and cheese." And it's like… no. No no no no no. If I "cheat" I am looking at weeks of illness.

    But yeah, I cannot agree more with the day of diagnosis actually being the like the clouds parting and everything making sense. I was so sick for 2 years and they did loads of tests, mainly on my brain and heart before being like… oh. And being sick every day for 2 years and then NOT being sick is amazing. Especially now that I live over here and my dad can't pick me up from the side of the road where I am crying because I couldn't stay on the bus after having dinner with my friends because I was in excruciating pain.

    I also have weird issues with the restaurant thing because I don't want to seem like I'm being overly picky but also I NEED to be overly picky CLEARLY. And it's embarrassing to draw the attention to yourself. OH AND I'M A FOOD BLOGGER WHO NEVER GETS TO GO TO FOOD EVENTS BECAUSE I CAN'T. But at the same time it's almost worse every time someone goes to the biscuit tin and makes a pitying comment to me because it's like… I DON'T WANT THAT. I don't want anything that is going to make me feel like death going into my body. And what is more is I don't NEED anyone's pity, I've been doing this for 2 years and I'll be doing it forever, I'm used to it.

    Don't even get me started on the weight loss thing. One of the reasons it took me so long to be diagnosed is because I'm a chubbier girl and I didn't lose weight (probably because I kept feeling shitty and turning to food to make me feel better). Even now, I'm not a thin girl. And it makes me laugh (with tears) when I see people stock up on gluten free pastas because they want to be healthy and slim. No. NO. It's all LITERALLY made of sugar. Ahhhh.

    Plus I saw once that humans are SUPPOSED to have a bit of gluten. And that while we abstain from gluten so we can, you know, live our lives right now, we face a lot more liver problems when we're older because of the no gluten thing. So when healthy people do it it is just like kdfajdsfdshaflhdskafk.

    I can't handle it. I CANNOT HANDLE IT.

    Anyway, I'm going to write a post semi-related to this soon, but yeah I think it's so important that we all talk about it because it's such a weirdly fundamental part of our lives.

    And this has been a damn novel but I feel like we could literally go on forever. And ever. We should probably never go drinking together or the bar staff will be like "wtf is this 3 hour gluten rant from those two drunk broads in the corner???"

    Aisling | aisybee.

    • Aisling says:

      Hi I'm back.

      ALSO WHEN PEOPLE ARE LIKE "oh man I ate that pizza and I am so bloated I must be gluten intolerant."

      NO FRIEND, WHAT YOU ARE IS A GLUTTON. YOU'RE BLOATED BECAUSE YOU ATE A WHOLE PIZZA. IF I EAT A WHOLE GLUTEN FREE PIZZA, I TOO WILL BE BLOATED. AUUGH.

    • Aisling says:

      Me again. I remembered another thing I hate. I think it's fine when celiacs talk about how shitty the food can be, but I hate hate HATE when other people point it out. Like. I have no choice, guys. This is the food I have to eat. How does it help anyone if you tell me you think the food I am eating is gross???? Ugh.

    • Aisling, thank you SO much for these comments. There is no better feeling than knowing that this has helped or that you can really understand what I'm getting at. I couldn't agree with all of your points anymore and I'm so happy I have someone I can rant with about all things gluten! Thank you lovely!

      xx

  7. This is so helpful and so insightful! I really feel for you having such pain and health troubles before you found out what was going on, and I bet it was such a relief to know that it was a dietary issue that needed addressing (although that's still freaking annoying – but at least you knew what you could do to stop it!). I was worried that I had coeliac disease but after tests it came back to show that I was completely fine and just had acidic problems with my stomach. Thank you for sharing this as it's so good to read, and I love how you write so openly and brilliantly! xxx

    Jessie | allthingsbeautiful-x

  8. Anonymous says:

    Even though you might find it embarrassing to use blunt words, but I think this post is incredibly helpful for those who haven't had an insight past the fads. I'm a doctor, and you've even educated me! I had no idea restaurants are starting to be a bit lax on their gluten-free measures – that's terrible and another reason for why I don't like the fad that exists.

    Saskia / girlinbrogues.com

  9. Lauren S says:

    I'm just sat here arms in the air like 'thank god someone said it'. I'm not coeliac, I don't have intolerances but because I haven't eaten dairy and wheat in years, my body cannot process it well any more. Your bowels feel awful, your body goes into a state of shock – mine is a mix of feeling sick and starving for food to feel better. The comment about 'oh you don't eat bread because you're slim' nearly reduced me to tears, I hate it when people say that to me. It's borderline offensive and if you've ever had issues with food and eating then it's better not to say anything at all.

    I made the effort this year to actually stick to being vegan, not like 'oh I'll deal with cheese if it makes it less awkward' no, you don't just switch it on and off. Like you, at events I find it hard because I don't drink, eat bread, cheese or dairy OR MEAT so I'd like 'where da houmous and veg?' le sigh. But anyway, girl this was awesome – sending you lots of love and hugs, so proud fo you writing this.

    Lauren x
    Britton Loves | Lifestyle Food Beauty

    • Girl, thank you so much for this amazing comment. I know that you can totally get it too, especially being vegan because people will point out that it's a choice and not something you HAVE to do. The more people that spread this awareness about the diseases and the stigma, the better. So pleased you liked this. Thank you lovely!

      xx

  10. Fab post, it really hits the spot with those who are trying a 'gluten-free' diet for the lols. I have an intolerance to gluten and haven't eaten any for 4 months now, my docs says I can start to reintroduce it into my diet. But to be honest, I don't think I will. I feel so much better for not having it in my diet, so why would I want to go back to eating it.

    It really frustrates me with the whole 'gluten-free' diet thing, that all of the celebs are trying. I wouldn't wish the diet on anyone, it was a hard one to follow initially but now I'm used to it it's not bad at all. I just really miss bread – and yes gf bread is like cardboard! Unless toasted and then it's just about bearable!

    Great post and lovely blog! I look forward to reading more gluten-free rants 😉 Have a lovely day!

    Charlotte x
    http://www.thecountrifiedlondoner.co.uk

    • Thank you so much for this lovely comment Charlotte, I'm so pleased you can understand and resonate with this. Hope you're feeling OK and coping well with the GF diet, maybe one day they'll make non cardboard like bread 😉

      xx

  11. Jordan says:

    YES YES YES YES JUST YES. THANK YOU ELLIE. My brother is a diagnosed coeliac and he has struggled with it his whole life. It meant that as a child he never grew properly and has affected him in so many ways. Nothing bothers me more than people who fake being gluten free and as somebody who's also worked in a restaurant I have had SO many people come in who don't really have coeliac, order food, wait for it to get to the table and then inform us that they're gluten free diet is now a thing.

    I'm starting to have tests for it now as I've been experiencing symptoms but as a big cake appreciator it's going to be tough! I have been known to bake the best gluten free cakes around though 😛

    Anyway I really loved this post and I'm so happy you wrote it!

    hellomissjordan.com xx

    • Thank you so much lovely lady for this amazing comment. Your poor brother, I'm really grateful that I was a bit older when I was diagnosed because it must be so tough growing up with it as a child. Hoping your brother's OK lovely, and that you don't have it yourself… although if you do, we'll head out for some gluten free afternoon teas together 🙂 Also, if you could bake me some cakes that would be amazing! 😉

      xx

  12. bryony grace says:

    This is really inspiring and eye opening. I don't know anyone personaly with this disease but it's interesting to see what you go through. I can relate slightly I don't have it myself but growing up I was in and out of hospital and had an operation too with something else I was diagnosed of! I know it can be so easy to feel embarrassed but I don't think you should be in anyway embarrassed when you go to dinner with people you don't know. I guess that's easier said than done! But it shouldn't have to be something you feel a little embarrassed about at all. I couldn't imagine living with what you have, like you I love my breads, dough nuts pasta and all that haha. but it's great that you've found a way to live with it and take it as it is. I also love that your trying to raise awareness of it, definitely something people should know more about! x http://coffeeatmidnight13.blogspot.co.uk/

  13. Josie says:

    I'm so sorry you have to suffer with this Ellie! It sounds so awful, I didn't realise what it was actually like because so many people are gluten-free because it's 'trendy' but still eat 'normal' pizza, like you say. I really feel like a lot of people self diagnose these days when it comes to things like food intolerances so I can really see why it winds you up so much! And that's so bad that restaurants are starting to be so lax with their gluten free policies – surely that must go against some kind of rules?

    I'm so with you on feeling self concious about an illness, it's especially hard when it's hidden! But people in general are very kind and understanding, bloggers more so than other people I find. And you do get people who make comments like 'That's why you're thin' which I think is an attempt by them to be kind but it's still bloody annoying! Like my illness makes it really hard to gain weight and people call me lucky – yeah my lungs are failing but at least I can fit into a size 6!

    Well done on writing this, you've definitely educated me and a whole lot of other people I'm sure. Health is a really personal thing to talk about so thank you for sharing x

    Josie’s Journal

    • Thank you so, SO much for this comment Josie. You of all people – more so in fact – I know will understand the effect that a hidden illness can have on you. Sending you so much love and hope you're feeling well right now! Thanks again for such a lovely comment!

      xx

  14. Thank you so much for sharing this about you! It must be so difficult living with celiac disease! my grandmother in law has it too and she is always having to make something separate for herself since she can't eat what we are eating a lot of times. Thanks again for educating us!

    <3 Shannon
    Upbeat Soles

  15. Anonymous says:

    I was diagnosed two months ago due to stomach pains from gastritis. I never had symptoms from gluten which makes celiac even scarier. I do not have a signal that "Hey, that sauce is not good for you" but it still causes irreparable damage to my villi (gastroscopy proved that) and I may eat that sauce again without knowing that it is bad for me.

    Also, I live in the land of bread and beer aka Bavaria where only a handful of waiter knows what gluten is (or lactose for that matter). Therefore, it is even more difficult to eat out and the chances of getting cross-contaminated food are crazy high. Not to mention that it is impossible to skip Oktoberfest without looking antisocial but it is freaking nightmare for celiacs.

    All in all, I agree with every single word you wrote. It feels great to know that you are not alone dealing with these problems. So thank you!!!

    • Thank you so much for this comment. I can't tell you how over the moon I am that it's reached you and you can understand this. I really hope it's helped. We are quite lucky in London because people are so much more aware but I can't imagine how it must be for you. Wishing you the best of luck!

      xx

  16. This must be awful I feel so bad for you, I get so moody and cranky without carbs, I can't even dairy though as it gives me similar problems we don't need to touch on again hahah so we can be even- ish..? Not really 😉 Sorry hun xxx

    BlondeOfCarbs♥

  17. This is such an informative post. Tbh I didn't really know anything about this but now I do. For someone who likes all these stuff, it must be really hard. Also getting used to it… You must have been really strong! xx

    http://www.elabellaworld.com

  18. Rubi Ani says:

    I always think to myself how lucky I am that I don't have any medical issues brought on by food.
    Rubi | Instagram | The Den | http://www.the-den.blogspot.com

  19. crafty-zone says:

    Oh, dear, sorry to hear that! I think that you did great sharing with us with this post, because maybe some of the people, who ealier thinks that if somebody eat gluten free products in on diet realise that maybe that person suffers on some serious disease, like coeliac disease? I totally support you, dear Elle!

    http://crafty-zone.blogspot.com/

  20. Katie Nelson says:

    Thank you for writing this post. I'm currently going through diagnosis and whilst my doctor thinks it's unlikely to be coeliac we believe it's at least a gluten intolerance. The thing that makes my doctor think it's not coeliac? Because I'm not stick thin – that was offensive if you ask me but I'll wait until diagnosis to get fully angry about that one.

    Either way I think I'll be looking at a life without gluten, and to read all these things in the run up have opened my eyes to things I might not have thought about – adding sauce or gravy for example. (What will I do without gravy? I'm a Mancunian, my blood is gravy!) I'm looking at a huge diet overhaul from starchy, stodgy foods and beer which is incredibly daunting so I'm super grateful for this eduction.

    Thank you Elle – I'm now following your wonderful blog & will be coming back often!

    Katie || KNEL xx

    • Oh Katie, that is so frustrating because you definitely don't need to be stick thin to be suffering. Another lady, Aisling, who commented on this post earlier actually mentioned tat she had the same thing but she was indeed diagnosed coeliac.

      It's definitely tough and there were so many things that I got caught out on. I think the best way to look at it is check everything!! If i can help with anything, please let me know!

      xx

  21. Sophie Neal says:

    I'm not even gluten free, but I see what you mean about the fad … so many people are just like "Oh yeah I'm gluten intolerant" without even being tested. My close friend has coeliacs disease at a time where you had to get bread by prescription. I guess one advantage of it becoming popular is that more places will offer gluten free more easily!

    Fab post, love seeing people get things off their chest ahha!

    sophieetc.com

  22. My friend recently got diagnosed with the exact same disease as you, and she was very ill for a long time but is now on her way back to good health. Its so good that you seem quite positive with this whole thing! Good for you for sharing it as it must have been hard for you! 🙂 Lovely piece of writing, I really hope you help a lot of people in similar situations! xx

    • Thanks so much Lauren, I'm so pleased that your friend is starting to feel better and is on her way back to good health! I really hope this does help lots of people, so thank you for your lovely comment!

      xx

  23. Alina Bostan says:

    Wow this was so insightful and I am so happy you wrote about something that is close to your heart. I'm not affected by Coeliac Disease but I had no idea it could be make you feel so ill. I hope the 'fad' disappears soon because I can only imagine how awful it must be to not be able to trust certain restaurant that claim they might be GF x

    Beauty with charm

  24. Amen! I'm not a coeliac, but I'm totally on board with how dangerous this gluten free fad is for those who actually have Coeliac disease. However, I'm glad that awareness has been raised for the sake of those who do suffer. I didn't know what Coeliac disease was three years ago! Great post, lovely x

    Martha Jane | http://www.marthajanemusic.com

    • Thank you Martha. So pleased you liked the post and found it useful. The more people write about it, the more awareness… hoping people will now understand a little more about what it's like to live with the disease too and not just what the disease is!

      xx

  25. Thanks for this insight Ellie, I didn't realise that eating gluten could be life threatening for coeliacs and I didn't know that the current gluten free trend could be dangerous. It must be very time consuming to check before going to places and you have my sympathies

    Suze | LuxuryColumnist

  26. LBG says:

    Fantastic article! You explained it so well, I felt like you were telling me person to person. I didn't know all about this so I appreciate all your thoughts and details

    http://Leftbankgirl.blogspot.com

  27. Beauty Bloss says:

    I won't pretend I know or have experienced closely the effects of coeliacs disease, but from the sound of it, man that must get bloody tough sometimes (ALL TIMES). Big hugs to you pretty girl!
    The Beauty Bloss

  28. I LOVE that you wrote about this! A really good friend of mine struggled with her health for over a year, turns out she also couldn't eat gluten. I mean, she can, but if she does, it messes up her entire body and she regrets every bit of it so she just doesn't eat it.

    x- Naomi in Wonderland

  29. this was an amazing read, glad to say I've learnt loads more than I thought I knew!
    Hannah | Heyitshannaah

  30. Casey says:

    I used to work in a healthfood cafe back before gluten-free was trendy and I know how hard it is to find GF food that tastes good. I don't have celiac but please, don't EVER be embarrassed to tell someone you need GF options! You shouldn't ever be embarrassed about your health. And that whole skinny comment? I get that ALL the time and I can't tell you how many times I've had to bite my tongue from making a sassy fat rebuttal. Such a double standard! Skinny shaming is just as bad as fat shaming. Ah, now I'm ranting. Anyway, I'm sending you internet hugs from DC and maybe some GF muffins 🙂

    Xx Casey
    http://thedistrictfox.com

    (ps I would spend every day in bed with Harry Potter and hot chocolate if it were socially acceptable)

  31. Donna says:

    What a great post. I can totally understand your frustrations as people can have some strange attitudes towards it and don't realise how serious it is and the implications it can have. I don't have coeliac, I was tested as my auntie has it, but I do avoid gluten as much as I can as it definitely has a negative impact on my health in other ways (I have fibromyalgia and chronic fatigue and it makes my symptoms worse). I don't eat out often as I'm not able to but I appreciate how worrying it must be and you are so right when you say it's now the trendy thing- people who deem they cannot eat gluten then divulge in a donut etc. I'm very careful with how I talk about my reasons to avoid gluten. I never say I can't eat it… I can, it just makes me feel rubbish. That's very different to someone with coeliac where damage is done to the body every time they eat gluten. It's out of choice I decide not to eat it, not necessity. I listened to a talk as part of the abundant energy summit on gluten by Dr Tom O'Bryan, it was really interesting. He said even if you eat something that contains the tiniest amount of gluten (I think he said like 1/25th of your finger nail) it has a devastating effect for a coeliac. You probably know about this but he has developed a product for coeliacs to help in the situation of being worried about accidentally being glutened. It's been touted in the press as a "cure" but it's not the green light for people to go ahead and eat gluten at all. It's to prevent the situations where you go out, do all you can to ensure your food is same and still end up being glutened- http://thedr.com/products-page-2/nutrition-formulas/

  32. Rachel-Beth says:

    Hi Elle, I have to admit, I knew little about gluten until the whole 'gluten free' fad started. I can totally see why that would annoy you, especially when it means that some 'gluten free' food contains traces of gluten. I am far more educated on coeliac disease now, so thank you 🙂

    Rachel xx
    http://www.thedailyluxe.net

  33. My boyfriend mum has coeliac disease, I think what she struggles with is going abroad and eating out, but so many more places are doing GF now, I think it's great. Although I'm not sure if it's more because of the popularity of GF diets not necessarily people who actually can't eat gluten. KBxx

    http://beautybykaris.com

  34. Thank you so much for educating me on coeliac disease as I honestly don't know anyone who has it (or at least they haven't spoken about it) so this post was really informative.

    http://www.abigailalicex.com

  35. Stephanie says:

    This was a great read. Thank you for sharing this. Very educational.

  36. It's so ridiculous people have jumped on gluten free as something cool, especially when people out there are suffering from horrific symptoms! I bet they don't avoid things like gravy either. Sorry to hear you've been permanently affected by your late diagnosis, hopefully this post will help other people get diagnosed early on!

    India | Home and Beauty Giveaway

  37. Emma Reay says:

    I've never got anybodies view on this before, and i've noticed loads of people going gluten free randomly. I really feel you as it must be so frustrating!

    Emma at http://www.collagemepretty.blogspot.co.uk

  38. Ya the whole gluten free thing is such a trend now. I think it would be hard having celiac disease
    xo
    http://www.laurajaneatelier.com

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  40. R Burden says:

    Great post Ellie! It's nice to make people understand more about the subject. I have a colleague who's coeliac and she's talked to me about how terrible the symptoms are. I can imagine the relief to be diagnosed and finally be able to get better. Luckily, nowadays there are lots of gluten free stuff available everywhere and I've been finding gluten free options even in cafes, pizzerias, etc. They're becoming more common, which is great. I personally, try to avoid gluten (whenever I can) because although I'm not coeliac, I've noticed the positive impact of going gluten free. So I'll always buy gluten free oats (for my porridge), and sometimes things like bread, cake, biscuits, etc. In a sense, it's good that it's becoming "fashionable" because hopefully that'll mean we'll soon be able to find gluten free products more readily available, everywhere. xx

    Renata
    ENTER MY GIVEAWAY
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  41. Agree with this so wholeheartedly. I've read the comments and have nothing much to add other tha thanks for sharing this and raising awareness (lactose intolerant here!)

    Lizzie Dripping

  42. Vicky says:

    This sounds so awful, poor you 🙁 I'm glad that there's more awareness and alternatives for you now and you have my deepest sympathies about not being able to have bread – that would finish me, I could quite happily live on white bread! xx

  43. Izzie says:

    I am so so impressed with both this article and your attitude to blogging- seeing you reply to SO many of these comments is so lovely! Having gone through the whole shebang and doctors mucking up my tests I can understand the frustration with trying to work out what is wrong with you. I've had doctors go on to me about my weight for yeaaaars, so many (obviously vital) questions about my eating habits so when I went after months and months of problems it got brushed aside. The doctors are most certain that I have coeliac's disease but I'm not willing to go through with any of the procedures just for a confirmation of what I already know- I cannot tolerate any gluten etc. My general health has improved SO much, I'm a different person to what I was 5 years ago and anyone into the fad thing really gets on my nerves! I get it if you genuinely are intolerant but ughhh! fads aren't good for you! so pleased with this post elle! xx

  44. Irene says:

    girl, you are amazing!

  45. I'm so glad someone went there, and congratulations on a fabulously blunt post, it's awesome. I'm not coeliac, neither am I gluten intolerant, but have recently given up pre-made bread products because the way they're made gives me all kind of nasty side effects- I wrote about it recently because I was shocked at how many people didn't understand that coeliac disease is serious, and isn't just an allergy, and seemed to assume that gluten also only appears in bread products, pasta and oats. I come from a foodie background and so now consider myself lucky that I'm relatively well educated on food, what's in food and where it comes from, and in equal measures seriously concerned that it's become an ok thing to use serious illnesses and intolerances as an excuse for fad diets and fussy eating.

  46. I'm so glad I finally got around to reading this post!

    I think many people misunderstand what an allergy and an intolerance is these days and I think the media and their bandwagons are partly to blame really. When I get asked about why I don't eat dairy , wheat or gluten I do try to explain that my body just can't process them but I still don't think they understand (because frequently the follow up statement is "oh you're allergic to them" – no it's not potentially going to kill me if I do have them, it will just make me very uncomfortable and a little unwell!).

    So pleased that you wrote this post because if you can raise awareness of the fact that Coeliac sufferers aren't fussy, aren't skinnier and healthier as a result and certainly aren't unfortunate then you will have achieved something great!

    Emma | HarmonyBlaze.blogspot.co.uk

  47. Anonymous says:

    Thank you SO much for writing this post!!!! The gluten free "trend" is coming to Sweden now too and I'm so afraid of what might happen to the gluten free options in restaurants over here, I already see products I know are not gluten free (usually because they contain normal oats) labeled as gluten free, and I'm starting to not trust all restaurants/cafes about this. We as coeliacs must speak up about this!!!!!
    Also, I feel offended when people speak of "going gluten free" because it's supposed to be "healthy" (which it isn't because of all the sugar and crap they put in gf products), it is like mocking me who don't have a choice.
    And the allergy thing – gaaah. I even hear our doctor at work talk about it as an allergy. I wanted to bang my head into the wall in frustration.

  48. This was sooo good to read! I have been Gluten Free for 8 years now and have never really come across many bloggers writing about it. It's not something I like to talk about because like you say it has become such a fad that I am sometimes embarrassed to say that I am Gluten Free because I know that people will judge me. If only they knew what it felt like to be gluten'd. I was really ill for about 2 years with no one knowing what was wrong. When I was finally diagnosed as 'Wheat Intolerant' (because I didn't want to do the test because it meant eating Gluten and that scared me) people said I was a changed person. It's amazing that being gluten'd can really change you as a person and I feel so much better in myself (although to be honest I have forgotten what it was like before). I'm so thankful that you have written this post and brought awareness to it. It's really made me think about my 'intolerance' and am so thankful that I found out what was wrong. Hopefully your post will help others get a diagnosis too. xxx

  49. Beautylymin says:

    Brilliant post! So informative, raw and honest. I hope it makes some people think twice about making stupid comments about being gluten free. I know how frustrating it is when people are pass-remarkable about something that they actually know nothing about! I have Chronic Lyme Disease, M.E. and a few other illnesses and I can't tell you how many times I've been on the receiving end of ignorant, ill-informed, hurtful and just plain stupid comments! xx

    Beautylymin

  50. Daphne says:

    Love this post! I was recently diagonosed this year, and my world turned upside down. I'm from Yorkshire so my whole diet was basically gluten. I was really depressed about it. Especially when everyone at work brought in cakes and constantly asked why I suddenly wasn't having them anymore. My symtoms where nowhere near as bad as yours. I only got achey muscles, fatigue and brain fog, but because of that I can never really tell when I get gluten'd, which scares me a bit.
    I'd really love to be as brave as you, going out to eat socially fills me with dread. I went to a so called "GF friendly" place last night to celebrate my friends birthday and the only this that was gluten free on their entire menu was corn on the cob! I'm lucky cos my friends and family are great about it. But I just feel like a massive hindrance to everyone and would much rather eat at home. I used to love baking as well but baking with GF ingredients can be a bit hit and miss for me now, which can be very frustrating. But i hope in 5 years time I'm where you are at now 🙂
    Thank you so much!! Xoxo

  51. Thank you so much for this post! I was diagnosed about 5 months ago with coeliac disease, went back to the hospital on Friday and I still have gluten in me! We have found out I cant eat scientifically modified food that has the gluten removed as I still react. I am currently sat at home ill due to being gluten infected (told a curry was complelty gluten free and perfectly fine to eat – it wasnt)! I missed a lot of school last year and am missing quite a bit already this year and this year I have GCSEs. Coeliac disease affects your life in so many different aspects – having to drop GCSEs as Im so exhausted! My friends dont understand – they think being as it they dont think it has gluten in its fine to eat! No, those Walkers crisps have gluten in! It completly stresses me out but Im also at a very stressful point with GCSEs and illness is making it a million dtimes worse!! I am so glad Im not alone with my opinions, everything you wrote I was like yep, yep and yep!!

  52. Thank you so much for this post! I was diagnosed about 5 months ago with coeliac disease, went back to the hospital on Friday and I still have gluten in me! We have found out I cant eat scientifically modified food that has the gluten removed as I still react. I am currently sat at home ill due to being gluten infected (told a curry was complelty gluten free and perfectly fine to eat – it wasnt)! I missed a lot of school last year and am missing quite a bit already this year and this year I have GCSEs. Coeliac disease affects your life in so many different aspects – having to drop GCSEs as Im so exhausted! My friends dont understand – they think being as it they dont think it has gluten in its fine to eat! No, those Walkers crisps have gluten in! It completly stresses me out but Im also at a very stressful point with GCSEs and illness is making it a million dtimes worse!! I am so glad Im not alone with my opinions, everything you wrote I was like yep, yep and yep!!

  53. Thank you so much for this post! I was diagnosed about 5 months ago with coeliac disease, went back to the hospital on Friday and I still have gluten in me! We have found out I cant eat scientifically modified food that has the gluten removed as I still react. I am currently sat at home ill due to being gluten infected (told a curry was complelty gluten free and perfectly fine to eat – it wasnt)! I missed a lot of school last year and am missing quite a bit already this year and this year I have GCSEs. Coeliac disease affects your life in so many different aspects – having to drop GCSEs as Im so exhausted! My friends dont understand – they think being as it they dont think it has gluten in its fine to eat! No, those Walkers crisps have gluten in! It completly stresses me out but Im also at a very stressful point with GCSEs and illness is making it a million dtimes worse!! I am so glad Im not alone with my opinions, everything you wrote I was like yep, yep and yep!!

  54. Sharan says:

    I tried a gluten free diet before to see if it had any positive effects on my Crohn's, it didn't – but boy is it hard! Conditions like these are really not talked about enough, considering people are so quick to judge our weight/eating habits. So inspiring to see that even with such a condition, you've never let it stop you from doing what you love!

    Hope you stay well, I love your blog!

    Sharan | essehearts.com

  55. It must be really hard on you to have CG. I just found out with my health issues, gluten can hinder the absorption of my medication, therefore I shouldn't be having it, and if I do, in serious moderation. Thankfully, I have cut down on it even before I was told this. In all honesty, I feel a difference. I don't think I could cut it off completely like you though, so I give serious props to you, but glad I have found you blog to help if I do. Thanks for this post. <3
    Angie | Chocolate & Lipstick | Beauty, Fashion & Lifestyle Blog

  56. FumiFriendly says:

    I have stumbled across this post today and it has cheered me up. I'm also a blogger of wheat, gluten and lactose free foods. I have a wheat allergy (have to carry an epipen 😣), I am a coeliac and I'm also lactose intolerant. To top it off as a result of it taking so long to be diagnosed I've developed IBS. My doctors love me lol. I can sympathise with you. People need to take coeliac disease seriously.

  57. FumiFriendly says:

    I have stumbled across this post today and it has cheered me up. I'm also a blogger of wheat, gluten and lactose free foods. I have a wheat allergy (have to carry an epipen 😣), I am a coeliac and I'm also lactose intolerant. To top it off as a result of it taking so long to be diagnosed I've developed IBS. My doctors love me lol. I can sympathise with you. People need to take coeliac disease seriously.

  58. cara_lynn says:

    I stumbled across this post because I was browsing your blog. I have to write down what I eat in a food journal because my doctor is trying to figure out if I have a gluten intolerance or if I have acid reflex. The symptoms I have are very similar to each other. So hopefully I will find out which one is the source of the problem.

  59. Polly Rowan says:

    I came across this post today and I am just so glad someone has put it into words! I meet so many people who say they don't eat gluten… then a couple minutes later I see them chomping into a croissant or dowsing their food in soy sauce. It drives me crazy because I'd love to be able to do that but not eating gluten is not a choice for us!

    Don't get me started on the sarcastic waiters. I had ond this past weekend who (after I told him I was coeliac and asked for some guidance on the menu) asked if I couldn't eat gluten or if I was coeliac. And I was just like, 'it's the same thing!'. Anyway, rant over. Thank you for this post 🙂

    http://pollyrowan.com/

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