Just diagnosed

Hi

I have just received my results from the endoscopy confirming celiac disease although my consultant was 95% positive I had it after the original blood tests. I would be interested to know how long it takes for people to feel better after following a gluten free diet as I have been gluten free for two weeks with not much change. I also am finding the gluten free breads and gravy very bland so any food tips or websites that people could recommend would be appreciated. Not a great time to be diagnosed with all the chocolates and mince pies about for Christmas.

18 Replies

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  • Hi,

    I was diagnosed 4 years ago. I remember that my gut symptoms improved within a few weeks. In fact, I was really surprised and pleased by the absence of the niggling pain I had got used to living with.

    As for the rest of my symptoms however, these I found more complicated. I was still so tired and unable to cope well at work. I went back to my doctor, who advised me to take B12 oral supplements due to being slightly deficient. Terrible advice in retrospect - because as a newly diagnosed Coeliac with damaged guts, I was unable to absorb B12 (or any vitamins/minerals) properly. Some weeks later (and after having a meltdown in a different doctor's office) I was prescribed B12 injections. Wow! What a difference! I felt that I had more energy within a couple of weeks.

    This was one of many things that I fought for and found made a difference. Unfortunately it took many, many months to find and figure out other things I needed that helped.

    Recovering your health after a Coeliac diagnosis is much more of a gradual process rather than recovering from a virus. Expect it to take time and remember to be kind to yourself along the way. Also expect it to be frustrating, isolating and downright scary whilst you are figuring out your new diet. It's all normal.

    Be very careful when eating out, including at family and friends houses. YOU are only just starting to learn what having Coeliac Disease means, so others may not understand the consequences to you of getting it wrong. If in doubt, take your own foods. This might not seem fair, but your tolerance to gluten will probably go down as your health improves, so the reactions you experience could actually get worse. Accidents will happen, just try to reduce the risks to yourself as much as possible.

    I also would advise anyone to go back to their doctor to get their iron levels and Vitamin D checked; and to ask for a DEXA bone scan asap.

    It will very much depend on which part of the world you live in as to what food advice is useful to you. For example, Quality Street chocolates (the UK made ones, not the European ones) are gluten free - but this information may not be that useful to you if you live in the USA, New Zealand etc.

  • Thank you so much for taking the time to respond and what you have said is exactly how I feel still very tired but gut symptoms calming down. A few days of major headaches which like you say may be the additives in all the gluten free bread etc I have been trying. Seeing dietician late January so hoping to have bloods checked for iron levels etc

  • Very informative response...........

  • I was told it takes 10weeks for the gluten to come out of your system!! It's very overwhelming to say the least. I am not celiac but gluten sensitive.i didn't know where to start with it all!!! As you say Christmas isn't a great time to be one!! But you will learn as time goes on. You have to be more organised for sure with everything. I'm not on face book myself but I understand there is a great group on there who offer support 👍

  • Thanks for your response its helpful realising you have all been through this and having similar thoughts and symptoms.

    Great support.

  • Forgot to add, I was very lucky and had no symptoms, as soon as I stopped eating gluten, I actually asked my specalist if they made a mistake. Of course this was a no

  • Hi Di

    It can take time to feel better. There are a few things that may help your insides to heal. Regalbirdy has given you some good advice.

    Avoiding ready made gluten free foods, like bread, can be helpful, as they often contain additives that can upset a damaged gut. It may help you to just stick to naturally gluten free foods for a while. Cooking from scratch is usually the best thing to do, as much as you are able. There several gf chocolates and Christmas goodies around nowadays, perhaps keep them to a minimum.

    You could also look at probiotics/ prebiotics to improve your gut health. These could be a wide variety of foods and / or supplements.

    One of our members has a website of gf recipes that might be useful.

    withoutgluten.co.uk

  • Thanks that is really helpful and I hadn't thought about all the additives or probiotics....great help thank you. Good to know others have been there and getting through it.

  • The Coeliac DH and Gluten Free Message Board website is very helpful.

  • Hi hun patricia here I felt the same about my crusty bread & my onion gravy but I got so ill for yrs with the disease not being properly diagnosed thinking it was ibs & the blood tests not showing & then thinking it was ibs but the one advice I would giv u hun is get your own new toaster so you dont get contaminated with the crumbs in yur family toaster its crucial to your health becouse getting glutened has so many horrible symptoms & keep on a strict gluten free wheat free being dont trust the labelling only when it says gluten free & I always make sure its says wheat free becouse I was still losing weight be safe patricia

  • My go to website is Gluten Free on a Shoestring. There are a ton of xmas recipies. Make your gravy the same as usual but thicken with corn starch or sweet white rice flour. I simmer with fresh sage and thyme for extra flavour. A lot of chocolate is GF and I find Herseys bars are the ones to look for. If you have a GF bakery they make pies at Xmas or you can pre order their pastry to make uour own pies. Gluten Free is a great magazine and they also have a website. You can make anything gluten free if you know what to substitute. Don't be discouraged it takes a while to feel better. My daughter was diagnosed last November and it took 6 months for her bloodwork to show an improvement. It depends I guess on how long your stomach has been damaged due to wheat and gluten. You will start feeling better soon. PS I make my stuffing with GF cornbread mix sausage and cranberry and its delicious. Its a big adjustment but worth your health and well being!

  • Once you are diagnosed,and go on gf it gets easier and you will feel better very soon. Be encouraged

  • This is just from my own observation of myself, but I have found that if stay away from gluten free breads for quite some time (months), that when I do finally have some again I don't find them to be all that bad. I think the reason this works for me is because I've spent time away not only from the regular bread that I can no longer have, but I have not immediately switched over to gluten free bread which tends to pale in comparison to the real thing. It's basically a way of forgetting. It also opened me up to a more outside-the-box approach to what I was eating. Rather than trying to make gluten-free versions of things I knew I liked, I forced myself to try new things that I hadn't had before that were gluten free.

    I have an example of how this works; When I was a teenager I tried a yogurt that was 'boston cream pie' flavored. I thought it tasted really good *because I had never had a boston cream pie dessert*. If I had had the real dessert before I tried the yogurt I would have found the yogurt a very poor substitute.

  • Like Angep I'm apparently gluten sensitive, not coeliac - although I've got vitamin D & B12 deficiencies, too.

    As others have said, cooking from scratch is the way to go. It stopped me from despairing about all the things I couldn't eat, I just focused on the things I COULD eat! Yes, it's hard work to begin with but I seem to find it easier now. To make life easier I bought an Instant Pot, which has revolutionised the way I cook.

    Lately I've also been following the principles of the Blood Sugar Diet, a lot of the recipes are naturally gluten free or can easily be made gf. Although it's designed for weight loss/type 2 diabetics I've been finding I feel better eating this way so it might be worth a look at some of the recipes.

  • I was diagnosed in August and am just now starting to really feel the benefits. Good days and bad still but hugely improved. I've avoided lactose (while gut heals) - and oats (for now). Can't believe how much better I'm starting to feel - it will be worth it. Really good luck.

  • Thanks really appreciate everyone's support..it has helped. I had gluten free porridge oats today and i think you are right I need to give the everything time to heal. Giving oats and lactose a miss is something I need to try.

  • I was diagnosed 15 years ago, and it was hard then, but now there are so many GF options you can have. It is hard to accept, but honestly it gets easier, even if now, I would love to be able to walk in a sandwich shop etc and just pick something to eat off the shelf, but what you have to remember is there are far worse things out there. I remember my consultant when he told me I had Coeliac Disease, is that if he had to have any illness, he would choose this, and this comment helped me so much in the early years. I went on a cruise 9 weeks after diagnosis and did not eat a thing for 24 hours, untill my sister spoke to a member of staff, and oh how I was treated then, with respect and the chef came to see me every day to sort out the following days menu. But diversifying here, you can buy so much now. Even Aldi have a great range inc Christmas Puds. Walkers do gluten free shortbread, its amazing, so like the original. Tesco christmas cake is great, and as for yorkishires, I beleive even wheat precooked ones are yuk, make your own. You can get glutafin flour script, I use this and make my own, honest they do not look good, but better than that horrible air taste you get from any yorkies out of a freezer. Just sit back, take a deep breath, and think this is easy, really hope you have a wonderfull Christmas.

    PS Tesco, Christmas cake is yummy too...

  • Thank u so much really appreciate all the advice and suggestions. It is helping enormously to know others are going through or been through this and got to grips with it.

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