How long does it take to start feeling a bit better?

Hi, I was diagnosed gluten intolerant last Monday and have been gluten free since then. I don't feel any better, am really emotional and weepy and have awful right sided abdominal pain. I have had chronic indigestion for 12 years. My appetite is really poor and I feel sick all the time. Is it just a matter of getting on with it or is there anything else I can do? I would appreciate any help at all!

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  • Has the doctor given you any prescribed medicine for your indigestion? I have that but must say the longer I am on theGF diet, the easier it is getting. It can take a while - I was told it could be 6 months before my tum felt any better. Have been GF for about 6 weeks now and still get severe pains. Also join Coeliac UK and you will get good information from them including the GF Food and Drink directory - fab little book! Hope you feel better soon.

  • Thanks for replying,the gastro enterologist said he didn't want me to take anything and to go gf. The dietician is coming on Tuesday so I am quite looking forward to that. I have joined coeliac uk but my book has not arrived yet. I feel a real pain in the arse!

  • Hi Busby, someone asked a similar question on 2 May maybe it'sworth trawling through past questions to read the responses there...? It can take up to 2 years for some people to feel improvement. It may possibly be that you have another problem so it could be worth going back to your gp if your negative symptoms continue? Just a thought! I have Dermatitis Herpetiformis so when I cut out gluten I felt a lot better really quickly, then I had a downward swing (I think I hadn't properly cut out a lot of things like soya, corn, coffee etc). Now I sometimes take small amounts of coffee or corn (try to avoid soya) and still get minor reactions... So it may be part of the learning curve trying to figure out exactly what your body is reacting to. But if you are feeling really unwell it's a good idea to get back to your gp. Good luck! And it's worth trawling through the earlier entries on this site as sometimes similar questions come up a few months apart. Take care and hope you start to feel better soon!

  • I feel overwhelmed by all this and just don't know where to start!

  • It's ok to feel overwhelmed, I think most of us do/did at some point! Just take it easy. Try just eating really simple plain food, fresh or cooked, even if only in small amounts. I still have moments when I just feel that all food is worrying, or moments when I get really annoyed at how difficult it can be when out/at a friend's house for a meal...but it does get easier! Take it one day at a time. Take care!

  • Thank you, anyone being kind makes me cry at the moment!

  • When I was first diagnosed I had been anaemic on and off for years and had a few minor GI symptoms. These all improved over the next 4 to 6 months on a GF diet. Now if I eat gluten accidentally I am very ill within an hour and it takes up to 3 or 4 days for my tender tummy to settle down.

  • I hope that my symptoms will start to improve like yours did in 4-6 months. I must be depressing everyone else in my family as I feel down with it all but at least I have a diagnosis and it could be worse!

  • It will get better. I promise.. :) and as long as awareness continues to improve and stricter regulations come in for food labelling there is much to be optimistic about. And as you have already discovered there is lots of support out there..

    Good luck with it all and don't worry about asking questions of your specialist over again if there's anything you re not sure of.. Information is power and anxiety breeds on ignorance.. :)

  • i started to feel better within the first 3 weeks..... the heartburn seemed to disappear within a week of going gluten free...the thing i noticed most was the depression seemed to lift quickly....i think that was due to know that i was not going mad and there was a reason for why i felt poorly all the time.....i'm nearly six months down the line and i feel so much better...busby it will get better....

    janie :)

  • Thank you janie, I don't feel very positive and replies like yours give me much hope. X

  • Hi Busby you have been diagnosed and that's the first step you have also joined GFG so you are amongst coeliac who have all been through the whole process of diagnosis and adjusting to a gluten free diet.

    I was diagnosed many years ago in mid October with severe anaemia and I didn't get on with iron supplements and I didn't like the prescription food so felt very isolated but stuck to the diet and then in late December just after Christmas I was out and about on a lovely but bitterly cold day and I had this sense of well being and I felt like the kid in the ready brek advert and I knew then that I was responding to the diet and that made it all seem worthwhile. So for me it was about 10 weeks before I started to feel really well.

    I will tell you something else, all coeliac share similar emotions regardless of how well we deal with our diets. The fear of being made ill by gluten and why me. But we learn to overcome these emotions with the realisation that we have the opportunity for a much healthier diet by avoiding many processed foods and junk foods like a normal wheatie.

    So it's one step at a time and the first step is diagnosis the next is getting your self sorted and used to the diet. And if we can do it then you can.

    Here's a link to the blog that Lexy mentioned and Lexy was bang on that it was the 2nd of May!

    glutenfreeguerrillas.health...

    So good luck and welcome to GFG and if you have any questions or want to have a rant then please do.

    Jerry

  • Thanks Jerry,my main concern at the moment is that we are going to Italy on Friday and it's driving me mad as to how I am going to manage for four days. It's really strange because I am always in control of everything and now I am flapping like a headless chicken !

  • Hey Busby, I read/saw something recently that said that Italians are quite up on their Gluten Free, their medical help is much better than here. Obviously you aren't going to be seeing a doctor there, but my point is that it will be better than you think, there will be awareness and understanding. Also - just think of all the wonderful fresh vegetables you will be able to eat. yum :)

    With regards to how long it will take you to get better, the more fruit and veggies you eat and the better you look after yourself, the sooner you will return to health. I rarely drink alcohol, coffee, dairy, sulphites, soya, processed foods etc and it seems to be helping my body to get better. I'm not saying you have to avoid these but limiting within what you are happy with may help you.

    I have found that anything to do with feeling down, anxiety or moodswings, etc. goes away the longer you are off gluten.

    It is hard work, but it DOES get easier. I have times when I hate it all and I cry and complain, but you will get the hang of it and when you feel mentally and physically well you will know that it is worth it.

    Good luck and have a wonderful holiday.

  • I am really grateful for your reply, I just wish that I could get rid of the stomach ache. It's worse when I have eaten and then within 20-30mins I need the toilet and feel awful. Sorry just realised its tea time !

  • Perhaps you are still eating things with gluten in without realising it? its easy to make mistakes.... I really hope that things get better for you really quickly. Everyone on here knows how you feel and can.understand what you are going through. sending you gluten free hugs and best wishes :)

  • We tried to have a big kitchen clear out yesterday. Half way through I wished we hadn't started,but this morning I am trying to feel really positive. If I am accidentally having any gluten hopefully I will stop that when I have seen the dietician. Thanks for the support. X

  • Hi Busby, Italy ehh? sounds good to me, here's an Italian restaurant card for you to print off and show to your hotel restaurant etc.

    celiactravel.com/cards/ital...

    If you go to the English version you will see the translation.

    I'll bet the 4 days will fly by so you have a great time as you deserve it after what you've been through with endoscopies etc.

  • Hi Jerry,do you know if many coeliacs take anti depressants and if so which are suitable. I know I sound pathetic and it's not like me but I am just so upset all the time. I think I will be able to cope with the gf diet eventually but just now I don't seem to be able to get a grip.

  • Hi Busby, well poor you. Many coeliac suffer from depression so here's a link to past blogs about coeliac and depression.

    glutenfreeguerrillas.health...

    As for anti depressants I have no knowledge of these I'm afraid. I'd consider asking this as a separate question as you'd almost certainly get a response from those who have.

    Being diagnosed as a coeliac is a shock and presumably you are anaemic so don't give yourself a hard time at least you are being open and honest about how you feel and that's the first step in my opinion. So you don't sound pathetic to me. And I hope that you feel better soon.

    The trip to Italy will do you good as the Italians test youngsters routinely at an early age so as a society they are far more aware of the gf diet than in many countries. And many coeliac rave about holidays over there.

    I would also consider talking to your GP about anti depressants and see what they say.

    I hope this helps,

    Jerry

  • Thanks Jerry I really appreciate you replies. Have an appointment with GP tomorrow. I don't really have a lot of faith in them though. I am trying to get as much information together as possible before I go. X

  • Good luck Busby! Try to enjoy your trip to Italy - they are indeed very clued up on the whole gluten-free thing there, I believe it is the 'Farmacia' (like our chemists) that stock gf goods, but probably their supermarkets do as well. Then again, Italy is great for fresh fruit and veg, so if you can tolerate that then enjoy! Remember to show your restaurant card that Jerry highlighted for you, but from what I understand it should be no problem to get gluten-free meals. Try not to worry too much, there are lots of people who have felt how you feel and understand your worries! Looking forward to hearing that you enjoyed your trip to Italy - and personally I'm a bit jealous too! :)

  • Thanks Lexy,will let you know how I get on. I am just not sure what I can tolerate at the moment. I have such an awful metallic/ bitter taste in my mouth that I have no appetite. Any suggestions!

  • Hi there

    Italy is great for coeliacs. You can buy good gf pasta and bread and even Pizza. The coeliacs Italian site has great ideas for restaurants. The supermarkets all have gf food and if you take your gf pasta or pizza base to a restaurant they will even cook it with your favorite topping. Have a great time. Plus if you search on google you will find the Italian version of the I am a coeliac card. I live here most of the year now and never have a problem even when I eat out and I live in a tiny village up a mountain.

  • Mia its great to have so much support . I will try not to worry and have a good time. I think the sunshine will make me feel better. Lucky you spending most of your time in Italy. Ciao(I think )

  • Hi Busby. When I was first diagnosed, a Coeliac friend told me I would feel better in a month. I didn't.

    I joined Coeliac UK and went to a local group meeting. This was attended by a senior specialist from my local NHS hospital. I asked him the question and got the answer "Somewhere between a month and 2 years". I am now 7 months GF and much better but still not fully recovered.

  • Thank you, how do you keep going?

  • I was diagnosed a few years ago. I had become so ill that I immediately went home and cleared out my cupboards and researched alternatives on the net. I fount that I was much improved after only 48 hours or so, but I it the new diet hard. You’re already doing well by finding a good blog site so quickly. I was a bit slower on the up take.

    A few tips:

    •Supermarkets keep all of the GF foods in one section of the isles and freezers.

    •Look out for the hidden wheat’s! Read ALL labels until you start to remember brands you can and can’t eat.

    •Note that many potato products are coated to make them more crispy.

    •Plan every thing. Most places have an online menu so you can check if they have what you can eat in advance.

    •Expect to feel worse than usual if you fall off of the wagon in the first few months. Your body needs to adjust and there are many foods that will trip you up.

    •Make your own ready meals. I cook a large pot and freeze food in containers for those nights when I just can’t be bothered to cook.

    •ALWAYS have the essentials at home (Pasta, spaghetti, flour, soy source, etc)! They are not always in stock in the shops.

    Once you get used to it, it really does get easier so don’t be too disheartened at this stage.

  • Hi Again Busby,

    Just noticed that you are going on holiday soon too. If you’re going self catering you can put a bag of pasta in your case. I’ve never had a problem doing this and I’m quite a frequent flyer. If it’s not self catering then drop the accommodation a quick line. Most are happy to find the substitutes for you so that you can enjoy your trip. As others have mentioned, I also stock up on drugs. I use antihistamine for the itching skin and swollen tongue, Ibuprofen for the headaches and pains and I find IBS medication great for the stomach problems, when taken as soon as I’ve eaten.

    In the meantime, don’t be afraid to tell people. The more people that know the less people will offer you biscuits at work, cake when you pop over for a chat and the easier it becomes. I really felt like the odd one out when I was diagnosed and the gluten had caused other issues like hypoglycaemia for years, without my knowledge. On the whole people were really kind and helpful and it’s how I found the first few friends with food intolerances. They taught me so much and it’s nice to have people to talk to who understand. I stopped feeling like the odd one out and we started an email distribution list at work to share info.

  • Hi,thank you very much. I am so grateful for all the help from everyone. I am not taking any medication at all and it's the stomach ache that really gets me down and being so tired . It's worse when I have eaten and I have no appetite. If just one symptom would improve I am sure I would start to feel better.

  • I hope you feel better soon. I started to feel better quite quickly after leaving off the gluten. If I do eat something with gluten, within an hour I am yawning and cannot stop and then I just fall asleep. I no longer get indigestion or toilet probllems. Just try and eat as healthily as you can and check the labels on all food,

  • Hi Busby,

    I'm self diagnosed as they wanted me to go back on gluten for 5 weeks and test again, but with a new job and embarrassing wind - I just wasn't prepared.

    Been ill since being a kid - tummy, wind, bloating, 2 hospital visits and blood sugar levels a mess too.

    Sent home and told to forget it.

    took till i was 50yrs to sort myself out- never felt better.

    The best advice i can give for faster results as i have no bad symptoms much at all now - very rare and usually when i've slipped up or not seen something in the ingredients.

    Just my advice - remember

    1) Don't try and get alternative bread at the start. (Doves farm Corn pasta - brill as is Doves Farm Buckwheat cereal - so filling, but leave bread alt's for now)

    2) eat as much things like salad - greens, keep your sugar levels good, I eat with chicken, fish etc

    2) veg

    3)Keep away from nightshade (mushrooms, white pot's etc)

    4) keep sugar low, especially white - your trying to sort your system out

    5) Give cheese a miss - again until your feeling better.

    6) White - is no no no, whire rice, pasta, potatoes, I have res skin pots or sweet, wholegrain rice (uncle bens) as said Dove Corn pasta

    6) I have lactose free milk - taste the same and is kinder to your tum.

    7) I take 1 x Cats Claw a day and give it a rest every few weeks.

    8) Snack on nuts and pears (oranges set me off)

    9) Have faith

    10) Dont give up - it's gets so easy in the end, and you start to look loads better to.

    I'm 53 and people mistake me for late 30s early 40s, I feel active, even my breathing in better.

    Hope this is of some help.

    At first I would look for recipes, but the easiest way is things like, steak and chips, salmon and jacket, chicken pasta.

    When your a dab hand look at recipes.

    Pataks do gluten free curry sauces.

    Let us know how you get on, but remember, take it simple to start with, let yourself heal - even if you are bored!.

    But sugars do not help tummys like ours , so dried fruit etc, not good.

    Delta x

  • ps just to add i started to feel better in weeks. x

  • Did your appetite improve quite quickly? I have just sat down to have my tea and can't face it,have managed a few bits of pasta and that's it.

  • I know that feeling, when it's too much trouble to eat due to the trouble it causes.

    Yes it will all improve. Do a list of meals for week. I have a tub of lettuce outside I grow and spinach and throw them in everything.

    My most cooked meals.

    chicken with pasta & gluten free pasta sauce, actually i use Tesco finest tomato and Mascaponi (the only cheese i have really).

    Salmon and jacket (red skin)

    Chicken stir fry, the sauce is lemongrass and chilli

    cottage pie

    see .................... it gets easier.

    I also only use olive oil or veg oil for cooking, not sunflower - dont feel good on it.

    Doves Farm Buckwheat cereal every morning.

    Steak and chips.

    Try to steer clear of all the free from breads/biscuits etc as said to start with, and keep them to a minimum.

    I actually think there is stuff in them not suitable for our sensitive digestive systems.

    As said I stick to pears and apples only for fruit.

    Your tummy will go down and once on track you'll look forward to food, no bloats and ill feeling.

    My guilty pleasure is rum n raisin ice cream, again wait till feeling better.

    I love currys and make with pataks paste, coconut sachets to thicken - always in cupboard and wholegrain rice uncle bens.

    I could go on and you will find loads of things you can do too. Even my son, if I haven't made tea he will knock something up and come up with things.

    You know - be positive about this because you will become a very healthy eater in time and look great too ; )

    xx

  • Where do you do most of your shopping? I go to the asda but it is quite limited!

  • It may be that you are unwell and has nothing to do with being coeliac--it does happen, becoming GF does not cure all ills, if you read through a lot of blogs many, many people who have been tested positive and behaved themselves have found other problems have been co-existing with the coeliac... take ONE day at a time- remember we are here for you any time, and you are not alone when you have c----y days.. You now have one less illness to try to get diagnosed, and each day you find another GF product you like, is a WIN.

  • Thanks,I really can't thank you all enough for all the help and support. I hope I can help someone newly diagnosed as much as you have when I am on the right track. X

  • Hi Busby, just reading all the replies you have had, a lot of good advice here.

    Obviously we are all different, but for me it was a gradual improvement at first, I had many symptomes, was diagnosed with hiatus hernia, diverticulitis, IBS, had my gall bladder removed, mouth ulcers, fatigue, brain fog, to mention but a few!!! Going gluten free for me initially was a daunting prospect, but I stuck to lots of meat, fish, fruit, vegetables, rice, potatoes and lots of home made soup. Gradually I noticed things were improving, 'I'd think oh I didn't have a bad toilet day today' or 'I enjoyed that meal' or I'm feeling more awake today, I don't feel so tired, and so on. It was a gradual improvement, and I started to feel better than I had done in years, my mindset improved and I became more positive, I then started looking at what I could eat, rather than what I could not eat. I find that smaller portions and eating more often works for me, but it is all trial and error. You will improve and start to feel better, there is plenty of help out there, so don't suffer in silence, just ask. Wishing you a lovely gluten free holiday, enjoy.. X

  • I have only just seen this and I hope some time in the sun helps. I empathise truly because not so long ago I was really depressed, so very depressed and I couldnt see a way through it some days, but gradually it has got better. I was only diagnosed in April and I am only now seeming to stabilise with my bowels and stomach ache/wind even though I have been gluten free since the diagnosis. As has been said here already, we are all different and adjusting to a new lifestyle takes some getting used to. Give yourself some time to heal, physically and emotionally - I found the 'loss of control' very hard to take and I still have days where I really don't want to eat anything but my up days are becoming more frequent than my down days so something positive is happening :)

    There is lots of good advice here, from people that know what it is like, you do not suffer alone (although it feels like it at times) and personally I found the messages on here to be the thing that encouraged me the most because getting it from the 'horses mouth' as such is the best information/advice you will get.

    I hope you have a wonderful holiday and return refreshed and ready to tackle your gluten free diet.

  • Hi ,thank you for you reply. I feel so depressed and having a real struggle to eat. I really did think that after a few days I would start to feel much better . Usually I am a very positive person,I don't even recognise the person writing this and don't think I can even manage to go away for a few days. My family are really supportive and I feel as if I am letting them all down. Thank you for being so honest I appreciate it. X

  • Busy, come on now (I've replied about things to eat above)

    Your going to feel better in time and stronger I promise.

    Please read my post I replied to, stay positive.

    If you go out to eat, dont worry, even Wetherspoons do gluten free meals and are nice.

    Be positive, take one day at a time xx

  • It took me approx 14 days of a gluten free diet before I felt any benefit at all, so hopefully the fog of depression will lift a little for you soon. I expected to feel better right away and was annoyed and frustrated when I didn't. I had a couple of weeks for feeling almost 'normal' again but I still had to run to the loo some days, I decided to cut out all lactose/dairy on the advice of the dietitian that I finally got to see 8 weeks after diagnosis and have been steadily improving since then. I had a couple of weeks of an emotional rollercoaster and the lows were very bad, I made it through with the support and tolerance of my wonderful partner. Your family being supportive is great, you won't let them down, just accept all help and support that is offered, you can thank them when you are back to feeling your more positive self :)

    Enjoy your time away (wish I was going)

  • When I was first diagnosed I felt better within a few weeks although I was a complete fascist with the diet - I didn't eat anything resembling grain. I ate more meat and vegetables than I had ever done. The dark circles disappeared and people asked me if I'd been training hard! My initial diagnosis was with DH. Blood test results showed coeliac so I was bullied into a gluten challenge to have a gastroscopy. After this it took a long time to feel better. I'd say in total it has taken over 2 years to feel as though I haven't got an additional stomach/bowel problem. I am very anaemic still, so that might be why it has taken so long.

    Advice? Plain foods. Don't eliminate too much stuff that's not gf, you'll get malnutrition and then you will be depressed. Packages - look at the "Allergy Advice" box and if that looks okay just skim down the other ingredients. My first supermarket trip took 3 hours!!! Now it takes no time - I can't go down most of the isles. If you notice some foods upsetting you (like milk products and wind/belching) then try alternatives. Some fruits are high fructose and will do similar - pears are the worst offender. Do trial and error. Keep a diary, then you can look back and see that there is an improvement!

    Hope the holiday was great. I've found a lot of European countries much better than here.

    It does get better. Family will just be glad it isn't them (of course they've been tested?)

  • Hi Jacks, what do you have for lunches and snacks?

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