Newbie

I've just joined the site and wanted to say hi. I was diagnosed with CD on 11th June this year after many weeks of diarrhoea, nausea, losing weight, feeling tired and just complete rubbish. I honestly thought I had IBS or possibly bowel cancer. Thankfully it wasn't the latter. my blood test came back positive and I'm now waiting for my biopsy, which isn't until the 22nd August (7 weeks, 3 days) not that I'm counting. I feel so rubbish at the moment and don't want to wish my life away, but the 22nd August cant come quick enough. However, once that date has come I will have to go GF and that really worries me, especially with eating out, going on holiday, going to friends, but I suppose with time it will become easier.

Anyway just wanted to say hi.

27 Replies

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  • hi lonelygirl, even though it can be complicated to be gf and take attention, you should feel soo much better emotionally and physically that the efort will be worth it. Good luck and welcome

  • Thank you for your comments :-) xx

  • Hi there

    If you start in August by eating simple naturally GF foods it will be easier and you will feel so much better

  • Thank you for your comments :-) xx

  • It does get easier over time and there are several sites, like this one, to help. It will be worth it too you'll feel so much better, more energy, healthier and happier..

    Good luck

  • HEy there weee. What are the other sites that you recommend?

    Thanks

    Sam

  • Thank you for your comments :-) xx

  • Yes, it does get easier. Eating out can be a challenge, I'm gf now 23 years and while there is def more awareness of the condition there is still a lot of ignorance in the catering trade. I usually ring the restaurant before I go and explain my condition and ask if they can cater for me. This works most times but recently I sat down to a dish containing noodles. I asked for re-assurance that they were gf and was told they were, I asked the waiter to make sure, he came back and told me he was sorry but the noodles were not gf. I had to sit and wait while another dish was made for me while all my friends got tucked in. This happens now and again. Also, you soon get used to reading all food labels and you quickly learn what you can and cannot eat. Then the manufactuers change ingredients. you will always have to be vigilant, read labels, check and re-check. The worst part for me is people thinking Im just too fussy, but, if I eat a small amount I am really ill for 48 hours. Good luck.

  • Thanks for your comments :-) xx

  • Hi lonely girl, Welcome! It is a shock when you are first diagnosed and it appears so much to learn but you will find that it all comes onto place and surprisingly if you embrace the whole gluten free lifestyle you will begin to feel well quite quickly. There is a website to look up safe places to eat .. I'll check it out and put the link up for you. Anything that you want to ask - we"ll all try and help you. Best wishes. X

  • Phew!! Finally found the link that you might find useful - it contains a map of where gluten free establishments are and online shops, etc - so it's a useful site to bookmark .. and to think I nearly misplaced it!! Lol!

    coeliacmap.com/

    coeliacmap.com/Map

  • Hi Lynxcat

    Thank you very much for the links. xx

  • You are most welcome --- there are so many links you will find useful. As they appear here on GFG try and bookmark the ones that are most useful to you.

    Whatever you want to know - if you ask here then usually there is at least one person with an answer, so please never feel alone - we are all learning together! :)

  • HEy Lonely girl,

    it's great that you found this site so quickly. It will be such a great help. I was diagnosed a year ago and only found this site recently. You will get the hang of it all and now you have a lot of people here to help you too :)

  • Hi maidforit

    Thank you for your comment. Im so worried about when I actually go gluten free. I was making my kids sandwiches yesterday and I was thinking about all the things I wont be able to do and how careful I will have to be when making my sandwich at same time. Im worried about eating out too and even going to my parents. There is such a lot to take in.

    Ive seen a lot of comments on different sites about how other people react when you say you have coeliac and they look at you as if to say God why are you being so fussy. Im scared of that reaction when I eventually adventure out. And what if they say they are gluten free, but not really know what its all about?? So many things to think about.

    xx

  • ok, in all honesty it is hard to deal with at first and you do have to become quite vocal about your needs but your needs are VERY important. You can't afford to be ill if you have children to care for as well as your self, it doesn't matter what other people think. It really doesn't. And for all you know the people that are saying these comments may not be perceiving waiters reaction correctly. Even if the waiter is being funny thats there problem and not yours.

    I was diagnosed a year ago and then had endoscopy in august the same as you are about to do. I'm really sensitive so I have to be really careful.

    Things won't ever be the same but it will get easier.

    I have found that the safest option in my home is to have seperate areas for Gluten Free. I re-arranged all the cupboards and have seperate sides in the kitchen. I have put signs and labels up everywhere stating what can be prepared in each area. Even the fridge is split vertically down the middle so that gluten and GF are seperated. I have seperate pans and spatulas. I wash my GF pots seperate to the stuff used for gluten and I have seperate chopping boards.

    I also prepare my food before other peoples. I always use trays/foil in the oven and grill. If there is something with gluten in the oven at the same time as me it goes on the bottom shelf.

    When I visit other people I explain everything to them - especially how ill it makes me and then what precautions I have to take. I often take my own food with me or prepare my own food at someone elses house I wipe down surfaces at other peoples houses and rinse utensils etc if I'm worried about something.

    If you explain clearly that it's not a choice, that it makes you ill, that you are recovering and have to take extra precautions while you settle in to a routine your friends and family should be happy and won't be offended by your 'strange' habits.

    I did used to find myself being incredibly apologetic, but as time goes by it gets easier to say what you need and why you need it.

    Make the routines in your life that you need to make, in turn it will make it easier for everyone else in your life as it becomes normal and most importantly you will be happy.

    with regards to eating out - I'm not very brave about that yet, but I've done it a couple of times, I've asked to speak to the cook and ask how they prepare the meal that I want. It seems to work well if I ask in advance and then book the meal. I think therewill be other people with better advice on this :)

  • I would advise that you buy a seperate different brand of spread to avoid cross contimination - education is the key read up as much as you can then talk about to family and friends - making sauces is easy jsut use juices from meat (GF stock Knorr is GF) and corn flour or potatoe flour - it does get easier :-)

    Stick with it the improvements in health is worth it

  • Coeliac UK are good and they provide a gluten free booklet . I joined to begin with and found it very helpful. I've been diagnosed almost 10 years now so I let my membership lapse. I was recommended to join by my dietitian when I was first diagnosed.. They have support groups too..

    coeliac.org.uk/

  • Hi weee

    Thanks very much. I was lucky enough to find Coeliac UK on FB the day I was diagnosed and they have been very helpful. I have my food directory at the ready for 23rd August :-) xx

  • Good luck...Oh and for the biopsy if you re offered sedation take it.. I was but refused and it was pretty uncomfortable and I regretted not getting sedation.

  • Dont worry I will take everything they offer me :-) thanks for the luck xx

  • Hi Lonelygirl,

    It is daunting you have to read every lable even the free from foods just to make sure all is safe to eat, its really a very healthy diet and you will soon start to feel better, eating out is not as bad as it used to be as so many places are now aware.

    Good Luck and feel better soon:)

  • Just wanted to say Hi, and welcome to our world! All the above people have been through what you are going through now and we are all still here to tell the tale. Just use and abuse us - it does not matter how silly the question is, or how daft you might feel asking it, it really is better to ask about something than to poison yourself. I am 27 years diagnosed and my motto has never let me down yet "if in doubt, leave it out". Always happy to help if you need us, good luck for 22nd, Welcome to the family x Ali

  • There are a lot of things that the diagnosis doesn't prepare you for when you start a GF diet or should I say Lifestyle because that's what it becomes. It seems daunting to everybody at first but talking to others, like us, who have experienced it all can really help, so don't be afraid to ask us anything you like. My local Italian Restaurant have even changed their recipes to make a lot more GF and they do Pizzas etc because they have so many people now asking for GF, so it can only get better. I believe that only by asking for GF foods when you are out and showing that there is demand can we achieve a change for the better. I take on the Asda's and Sainsbury's of this world regularly! (My local Asda has the Freefrom shelves in the cake and bread section!-yes I have complained!

  • hiya lonley girl i was diagnosed last may and had same simtoms as you it was very hard at first but you get so used to it as evrey 1 as said always ask when you go any were and join celiec uk they are so helpfull good luck you can get bread ect on perscription and other things too juvella is a good site so good luck xx

  • Hello, and welcome. GF is a lot easier now , and most restaurants will offer gf alternatives if you notify them that you will be coming. The wetherspoon pub chain offer gf dishes and they are labelled on their menus as gf. I have eaten there often and have had no ill effects. Most supermarkets have a free from aisle, where you can buy bread, cakes, biscuits, pasta, spaghetti etc. You can also get gf items on prescription from you GP. Good luck with it all, and any problems, you just need to come here, I am sure someone will have an answer! Best wishes x

  • Hi lonelygirl,

    I'm also new to the sight.

    I've just had a blood sample taken on friday and already going mad waiting for the results but It is clearly an allergy to either gluten or most grains and become very very sensitive since i started eating nasty stuff but had to stop cause of the swelling and burning that was getting worse with every mouth full.

    I've gone gf on and off since i started getting ill from bread but it is getting better product wise each year,it would of been a nightmare if i had tried to do what I have to

    in my teens when I first got the signs but didn't connect anything back then,never even heard of gf,coeliac,ibs etc.

    you will get to know what is ok and what is not and always ask...never be scared to ask.

    I'm going to get myself a bread machine in the hope of making cheaper gf bread for myself.

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