when do you start t feel better with coeliac disease I,ve been diagonoised just a year cut out every grain I,m suppose to including oats

and I still feel the same most of the time always tired but can,t sleep at night maybe get a couple of hours around 5am I don,t understand about dextrose fructose and maltidextrin was suppose to see dietician in dec but never got an appointment seen one once in nearly 13 months my gp is no good either when I was diagonoised I was told by my gp I had to go small dose of antibiotics for rest of my life which happened to be penicillin which I,m allergic to then the second choice I couldn,t have because of medication I,m on to treat depression so he said to forget about it don,t even know why I needed to go on it but the person who arranged the biosopsy requested I needed it anyone out there with the answer why or answers to why no better. its not even due to cross contamination as me and partner are extra careful and keep g/f stuff separate but most of the g/f w/f he eats the same as me except for the bread. its effecting me that badly that its effecting our relationship and some off my friendships as I,m always miserable and tired and very argumentative because I feel like c--- all the time (soz for moaning )

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  • Hi there, it's rough that you are feeling so awful. It might be an idea to start again by beginning really simply with only natural gf foods so only meat, fish, fruit, veg, rice, pulses, quinoa, eggs, yogurt and breads and pasta containing no codex wheat and to cut out dairy for a little while to give your villi a chance to heal. Then you can reintroduce things one at a time and that way you can see what you react to. I hope you get your appointment at the dietician soon.

  • Plus go and ask to be tested for the following

    Iron and Ferritin

    Osteoporosis (DEXA Scan)

    Calcium

    B12 or Pernicious Anemia test

    Vitamin D

    tTG (anti-tissue transglutaminase)

    Thyroid Function e.g. (TFT) or TSH or Anti-thyroid Peroxidase Anti-bodies

  • Hi dobido,

    I can really sympathise with your situation. Sometimes I think the road to wellness is a little like playing a guessing game.

    Firstly as you don't have any confidence in your GP, is there any chance you can switch - either to a different GP or to a different practice? I've found since my CD diagnosis that you really need to have a supportive GP, one that you can be confident enough to argue the toss with when necessary. I once out and out accused mine of being wrong! And to his credit he listened and referred me onto an endocrinologist - as he should've done originally (Btw, he actually was in the wrong, I wasn't just being arsy! There were NHS guidelines that clearly stated how he should have dealt with me).

    I guess what I am saying is that GP's are good at what they do, but they are not specialists. You are the specialist on You. If you go to them with a reasoned and factually supported argument, most of them will listen; and if they don't, then that person may not be the right GP for you. If you can, try to find one that has more of an interest in gluten sensitivity - common sense says it would make your life much easier. Failing that, you may need to work on your negotiating skills. Too many people (like I used to) think that the doctor is always right. GP's are human. Nobody is right 100% of the time, all the time - that's impossible!

    I'm not sure what they picked up on the biopsy but I've never heard of being given antibiotics for Coeliac Disease before. Maybe it was related to a separate condition that they also found?

    As far as feeling tired goes, it sounds like you could have some serious vitamin imbalances. If you can, push your GP to get your iron, folic acid, B12 and vitamin D levels checked/retested asap. Watch out for mineral imbalances as well. In my case both my B12 and vitamin D levels were deficient. Due to the CD, I couldn't absorb them through my gut properly. Fixing those has really made a difference. I am much less tired and it has also helped with my depression issues. Be aware though that they like to use the phrase 'within normal range.' This really tripped me up with the B12. I was on the low end of 'normal' according to the GP. However as many people find out (including me), they don't actually fit into the ordinary ranges - ie. they feel like cr-p because their own normal B12 range is higher than the recognised average. This means that the GP will think you're fine but in truth you are B12 deficient. It makes for interesting conversations with the GP I can tell you! As mentioned above that's why you have to have a good relationship with your doctor.

    Ps. Don't ever feel like you're moaning here! Your need is a genuine one and talking about it is ok. I think that's why the community exists in the first place.

    Good luck and I hope your feeling a bit better soon.

  • Could it be that they found heliobactor in your gut? That might be the reason for the antibiotics.

    I agree about the various tests suggested ...being deficient in iron alone can make you feel tired and depressed and totally crap.

    Also be careful of minute traces of gluten ...even things that say they are low in gluten or none detectable can set some of us off. I can't eat anything with dextrose of glucose in it as they may be derived from gluten containing sources and even though they say they have removed all the gluten they obviously haven't as my body reacts.

  • What did he say about antibiotics I've never heard of this?, not heard about keeping oats in you usually get told to see how you are on gf oats but if symptoms remain remove oats as well, this is because some coeliacs can tolerate gluten free oats (not any oats) but many can't so many coeliacs have an oat free diet because their protein avenin is so similar to gluten your body reacts in same way. If your coeliac has been left for years you may well have sensitivities to other foods, other autoimmune problems etc it sounds like some more screening and tests are required.

  • Thanx for all your replies think it will be a case of changing gp as he won,t Do some of the blood test until summer

  • Hi Dobido, so sorry to hear about your troubles. I've got Dermatitis Herpetiformis and been gluten free for just over two years now. Initially I felt such an amazing change and improvement, and then after a year it started to slowly but surely creep back again.

    So I've been slowly cutting out lots of other things - no coffee, very little caffeinated tea, and extremely small amounts of sugar (best to avoid altogether!),and just recently I've decided to go lactosfree (I was never keen on milk, but I do like cheese, butter and plain yoghurt). A lot of hard cheeses do not not have significant amounts of lactose so they seem ok. I seem to be ok with very small amounts of dairy, but any overload and I get symptoms again. And I really don't touch any of the processed gf products (I steer clear of the Coeliac UK list of 'safe' foods because so many of them are not!). If I fancy a cake or a biscuit I make my own and make them sugar-free or extremely low sugar and make sure I share so I don't eat too much! ;)

    I take vit B complex tablets, vit D, magnesium, and a glucosamine/chondroitin/msm combo (I'm a keen runner so I'm worried about my joints etc!), and when I'm under the weather I take extra vit C and zinc as well. I'm still not feeling 100%, but better than before I started being much more radical with my diet.

    So, I think like some of the other replies have suggested, try to get more answers out of another doctor, test your various vitamin levels, cut back to a very basic diet and after a few weeks slowly reintroduce one thing or the other and see how your body reacts.

    Are you able to do any exercise (walking, cycling, yoga for example)? I find that as soon as I stop exercising (due to injury or illness) I get really anxious, grumpy, crabby and some of my symptoms return (my digestion seizes and skin problems return).

    I hope you find a solution! Good luck, and let us know how you get on! Fingers crossed you start to turn the corner soon! :)

  • "Moaning" on here is what we are here for! Sounds to me like there is something else going on. I had to cut out most carbs for a while until I started to heal, even now I have to be careful with them and only eat food I have prepared myself most of the time. I take Vit B12 melted under the tongue about every 4 days, If I forget I feel rubbish! Also Calcium, D3 magnesium and K2 for osteoporosis, and orange oil for reflux. I am intolerant of dairy, nickel, soy, peanuts and lots of medications, Most of these due to being 60 when I was diagnosed when the problems started in my teens!

    My advice would be to check dairy intolerance first as that is "normal" for many coeliacs. Even if it is lactose it would make a considerable difference to how you feel. You already have allergies to meds and wheat gluten so other intolerances or allergies are not unlikely.

    Sorry if it is not what you want to hear, it wasn't what I wanted to hear either LOL.

    I do hope you get to the bottom of your problem and are able to improve the quality of your life and relationship really soon, I feel for you, Love Lesley

  • Hi dodbido, well this is sad reading so I am really sorry, firstly I agree with Mia's advice about a simple naturally gf diet. And I agree about vit D etc so I would ask for a full blood screen and then take things from there. And I'd feel low if I couldn't sleep so this is obviously not helping and is something else you want to discuss with your GP.

    On a positive note you have a very supportive partner, who eats the same meals as you, so are very lucky in that respect and you can not help feeling low so apologising for it is like some one apologising for having a cold, just look at what you can do to make life easier and look at the things that make you happy and try and focus on them. I'll also bet that your friends wish that they could help you so again don't give yourself a hard time because you're having a hard time.

    On another positive note you are being open and honest about how you feel and this is not easy for some people so good for you and asking for help is just the first step so you have a moan and get things off your chest and try and think about things that make you happy and try not to dwell on the future and imagined problems.

    And good luck and by the other responses you will see that you have the support of all of us.

    Jerry.

    PS you said, that you don't understand about dextrose fructose and maltodextrin,

    Firstly fructose is a natural sugar in fruit and honey and some people have issues with it.

    Dextrose and maltodextrin are artificial sugars made from grain and in the EU mostly from wheat, it is very processed so is considered as gf but some coeliac have issues with these artificial sugars and those who are wheat intolerant avoid them as they do low cal pops.

    HFCS (high fructose corn syrup) gets a lot of bad publicity for many reasons, I personally avoid it.

    I think that one big problem with artificial sweeteners is that they are absorbed into the body very quickly so can cause spikes in our blood sugar levels with corresponding lows.

  • so sorry you are feeling so awful . I felt better so much sooner and it was like magic to feel well and not lethargic, My GP said one digests sugars and lactose on the top brush borders of the villi and as these are damaged in coeliac disease the villi have to heal first before one can cope with them. I stuck to a very plain diet just meat eggs lots of vegs and fruits some maize as I was in SA at the time also vitamins . the fat soluble vitamins are hard to absorb A E D and K, and the B vitamins always help with energy. persist and follow your instincts, it is your health after all

  • The antibiotic is probably for a bug in your gut, which could cause you an ulcer. I understood it was a one-tablet treatment these days - ask your gastroenterologist and if you don't have one tell your GP you should be seeing one (surely you can quote some NICE guideline? - "high quality of care" is one for coeliacs).

    As for the gut symptoms, I won't be able to offer you a crumb of comfort as I've never recovered. I rarely sleep through the night without my gut waking me. Being diagnosed over 50 was the nail in my coffin, so I just get on with it (and do a lot of moaning!)

  • Hi dobido

    I empathise; I sleep very fitfully and am always awake 4-5 am onwards. Also have depression issues which I never (and no professional has either) linked to my GF until I hit this website...Im learning so much here.

    Someone else said they exercise lots; I walk (a bit excessively to be honest) about 5-15 miles a day and not only am I outdoors but also tire myself out n it helps me to sleep a bit. Lifts the mood significantly too.

    The gf diet thing has been a nightmare- things which say they are gf simply are not (my belly is a better gauge) and I now cook mainly from scratch. I tried reintroducing oats recently (on the advice of a dietician) and dropped like a stone. As someone else said..might be an idea to scrutinise your intake again.

    Wish I could give you a big hug but instead I'll hope that some of the sound advice and empathy from other members makes you feel more positive and good luck. With you in spirit. x

  • Hi cramps, many coeliac suffer from depression and this past post may interest you:

    healthunlocked.com/glutenfr...

    and here's another:

    healthunlocked.com/glutenfr...

    If you check the archives there are many relevant posts and posts about oats and many other subjects, to find these just check out the search option top right of the GFG home page.

    Jerry

  • when you have coeliac disease it doesnt ever go away its a life long disease you just keep it at bay avoiding gluten for life

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