Coeliac disease

I have been on a gluten free diet for almost a year now i did feel more energetic for about 5 months then I was bad tofeeling exactly how i did before i was diagnosed. I still get bloating and feeling lathargic i went to see Gp not long ago and bloods were fine. I feel like my body is starting to react different to other foods now aswell its so shitty. Does anyone else feel like just giving up the diet altogether lol.?

17 Replies

  • Hi Sammyross, sorry to hear that you are feeling so rubbish, please don’t give up on the diet.

    I can totally sympathise with you, I was diagnosed with coeliac disease in 2011 and was really happy to find out what was wrong with me, my symptoms weren't the normal ones, I had mild stomach issues but mainly headaches, feeling off balance and generally not feeling very well.

    For about a month after going GF I felt well, then I started to feel worse than before diagnosis, headaches a lot of the time, I still had my rash ( DH) and it was only by reading others experience on here that helped me.

    First of all if you are getting prescription foods don’t get the ones with codex wheat starch in them which can cause some of us to still react, if you can try to do without the gluten free products and just eat natural things even if it’s only for a week to see if you feel any better, then if you still feel rubbish try giving up dairy as it was only after giving this up that I started to feel better.

    Lastly have you had your vitamins, minerals etc. checked out and have you looked at the results, sometimes we can be just within the range and the doctor will not pick up on it and just advise all is normal, but it might be too low for you, for instance my vit B12 was just in range but I still get the injections as I was having other symptoms.

    In closing I would just say that in my opinion if you give up on the diet then you are just storing up problems for yourself in the future, I have a theory that I have had to give up dairy because my body should have been gluten free about 30 years ago but I went undiagnosed, during all of the time I have been damaging it and I think that is why I have had more issues than some who feel very well on the GF diet as soon as they adopt it.

    I am now starting to feel well again so it is worth keeping up with the diet.

    Good luck, I hope you start to feel better soon

  • I totally agree about the codex wheat starch! I was diagnosed in 2008, and though my bloods were normal within a few months I was still having symptoms, as well a very itchy rash. It suddenly dawned on me that it might be the codex wheat starch, and it made a big difference to me when I cut it out of my diet. I really don't understand why these companies put it in their bread as the bread you buy from the supermarkets is fine without it.

    So I improved enormously, although never felt as well as it seemed others felt on the gluten free diet, which I read about in coeliac magazines etc. Recently I have tried to cut out dairy as, by keeping a food diary, I realised I was getting my worst symptoms the more dairy I consumed, and this has made a difference to me. It's been hard, because in the past my favourite foods have been bread, (I mean real bread that I used to love), and now cheese and other dairy products. I also have now cut out gluten free oats as well. I think that after many years of undiagnosed CD, I must have damage that will maybe never be fully repaired. I'm 66, but though food issues are a great nuisance, at least I'm alive! For that I am very grateful. My advice would be, find a good dietician, keep strict food diaries, (which is a real bind, I know), and find out what else is causing your symptoms, but never, ever give up on your strict gluten free diet.

  • I recently wanted to buy a waitrose chock ice but saw wheat syrup in the ingredients but no gluten allergy advice. I contacted waitrose who say the syrup does not contain gluten, but how can it not be contaminated when it's not just been near the wheat it was part of it? What r others views of wheat syrup, gluten free or not?

  • I thought it was only the companies like Glutafin and Juvela who process wheat to remove the gluten. I don't think Waitrose would have the equipment to do this highly processed procedure, so I would assume that the wheat syrup must contain gluten. If in doubt, do you get the CoeliacUK directory? Waitrose have a section in there, and if it's not there, then don't buy it!

  • What else are you eating that's making you feel bloated? You shouldn't give up the diet until your doctor says to.

  • Did you not know CD is a lifelong condition where the ONLY treament is abstaining from gluten? If you can't handle this or think it's something different (like colitis) perhaps it's time to see your healthcare provider.

  • I'm a coeliac and have been GF for 4 years (very strict I don't eat things that say no gluten containing ingredients). I most definitely feel much better being on the diet than before although I have days and weeks when I don't feel great (bloating, tiredness or just not wanting to eat anything). For me the difficulty is that I can never tell what has done it. It could be gluten contamination, my stomach not being used to more spicy foods or just work and life (2 young children) but there is no way of knowing so you just have to be extra vigilant. Also good idea about checking vitamins and minerals from tmoxon.

  • I totally agree Tim. i am also Coeliac and am very strict but I still have days when I am bloated and feel awful. I felt better for a while after being diagnosed but then gradually began to feel tired, lethargic and bloated more often than not. I am currently being diagnosed with Hashimoto's as I realised there was more to it than just having Coeliac Disease. Unfortunately, with one autoimmune disease, we are more likely to develop another as well. I would go back to the doctor Sammyross. You might have to make a nuisance of yourself and keep going back (it has taken me 15 months for this diagnosis, took me 9 years for Coeliac diagnosis) but it is the only way you will get help. Doctors will not offer help unless you are practically begging. Don't give up. You deserve a better quality of life and, sadly, you are the only person who can bring it about. Good luck xx

  • If your stomach has been damaged by gluten, as I understand it, you may well have absorption problems and still not be getting the full benefit of nutrients from your diet. I believe some people react to dairy as well as gluten. Sugar is a big problem for causing bloating and feeling low for anyone. Some people react to the gliadin in oats in a similar way to gluten. Ordinary oats can be contaminated with gluten.

    Sometimes when I feel really bad and think the diet is not working I find ater there is hidden gluten in something I had not suspected, or if eating out they say something is gluten free when it is not.

    Low B12 causes a lot of issues and is rarely diagnosed. If your test is low 'normal' you could try supplementing with lozenges or spray.

    And yes, I often feel like giving up, especially as I'm self-diagnosed, by trial and error, and my favourite food is bread! But I have had such a huge difference in my symptoms I don't want to go back to how I was before.

  • Hi Sammyross,

    Is it worth getting a Red Apple Labs gut (GI) screen? It tests for common antigens (gluten, dairy, eggs, soy) but also pathogens (parasites etc) and infections such as H.Pylori. This is a very short description of what they test for, it is really detailed and covers tests you won't get on the NHS. You have to go through a nutritionist or similar practitioner. It does cost £227 but it can be life changing as gluten may not be necessarily be your only issue if you are still getting symptoms after cutting it out. I put if off for ages due to the cost but really wish I had done it years ago now as I feel like I am not 'shooting inthe dark' as I have been for years. As they say - what can be measured can be improved. Hope this helps. Lizzy

  • No I never feel like giving up because the pain is horrendous. But I know what you mean I react to alsorts of things now, such as lactose, soya, onions, cabbage, sweets, salts....sigh

  • I know i feel terrbily ill and u nhealthy for a 28 year old! X

  • :( sorry to hear. Once you identify the culprits you feel a lot better

  • I have eliminated farmed fish from my diet.Experienced severe abdo pain and bloating.Apparently fish fed wheat pellets.

  • lol this gets worse! Gluten hidden everywhere! good to know

  • Perhaps have a look at the Fodmaps diet? Keep a food diary and see if you can pinpoint any particular problem foods. Unfortunately it's very common to have problems with more than gluten.

  • It sucks.... Im now feeling ill with dairy!!

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