10 months on my GF diet... But I still feel unwell. Should it take this long?

I was diagnosed with coeliac disease in June last year and I have been good with avoiding anything containing gluten. There have been things that have caught me out a I know about it very quickly afterwards.

I did spend almost a year feeling really sick and wanting to spend all my time on the toilet before being diagnosed, but I thought by now I would be feeling better and would have put on some weight.

I really can't work out why I still feel the same especially in the morning when I feel worst. Also after I eat (even something small) I feel really bloated and my stomach is swollen.

Should it take this long or should I go back to my GP?

10 Replies

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  • Tim - it's worth going back to your GP to discuss this in case there is something else wrong or there's some gluten getting into your diet by accident - your GP can run some blood tests and let your know if you have any gluten anti-bodies to rule this out.

    That being said - many coeliacs can take 2 yrs + to feel better. It all depends on how much damage coeliac has done to your body and how long you went undiagnosed for. Of course villi generally grow back but when they do they too need a little while to get into the swing of things again so it's not like we go from 0 - 60 secs and feel 110% once we go gluten free. Far from it. Many members here will comment I'm sure that they felt worse then gradually got better.

    Also as your stomach heals it will find it hard to process certain foods e.g. beans, chickpeas, salads, complex carbs etc which might account for the bloating you are getting.

    Nevertheless - see your Dr and discuss it - that way you can put your mind at ease and rule out anything simple like SIBBO (yeast overgrowth - common in coeliacs).

    Good luck & do update us as it will help other members with the same problem

    Cheers

    GFGs

  • Thank you and everyone for responding to my question. I took your point about gluten sneaking into my diet by accident and have changed what I eat and what it is cooked on. The good news is that I am now feeling better, and the only bad news is that I eat a jacket potato every day but that is a small price.

    I have also stopped eating dairy (only milk in coffee at work) and will wait to see if I put some weight on before going back to the GP. I am going to carry on like this and introduce new food slowly and wait for a reaction before adding it to my diet or list of poisons.

    Thanks again for all your answers.

  • I've been in the same situation, diagnosed 18 months, felt great for 8 months last 12 months only worked 6 months, due to unexplained illnessI. Testexd for ms, lukemia, greaves, I kept returning to gp and felt I was getting no where. I met with my daughter's coeliacs gp who recommended that anyone diagnosed with coeliacs should have full bloods done to check levels of vitamins as there are so many symptoms which could be a deficiency of any vitamin. I demanded my gp did this and had it done, which was yesterday, so fingers crossed and will let you know how I go on.

  • Thank you for your answer. I have not been back to my GP yet but since asking this question I have gone back to basics when it comes to anything I eat. This means I have been eating the same breakfast, lunch and dinner and I now avoid dairy but I am feeling better. This is my first step and if I still haven't put on any weight after a month I'll be banging on the door of my GP as you have recommended. I hope you got the result you were looking for from your doctor.

  • One consultant told me not to eliminate lactose as well as gluten when first diagnosed then I saw an American Consultant at Winchester & he said of course I should because my villi were so damaged that they could not produce the lactase to digest the lactose. So for a few years I went lactose free as well then gradually re-introduced it and now I am fine. This is worth investigating.

  • It took 3 years for my gut to heal, but it's worth checking your vitamin/minerals are ok, or if you have a lactose intolerance/

  • If you check out vitamins and lactose intolerance, but still have problems, have a look at FODMAPS. foodhospital.channel4.com/c...

  • Thank goodness I found this site! I was going to ask a similar question myself, although I was only diagnosed in April this year I expected the diarrhoea to stop now that I have eliminated the gluten from my diet. I am now wondering if it is due to some deficiency that it continues, not all the time but occasionally. I also feel suddenly exhausted and depressed after the diarrhoea occurs, and it feels like it's more than just my disappointment and loss of any increased confidence in my bowel movements, that causes the depression.

    I do also have an underactive thyroid but I take medication that seems to keep that ok.

    I have just decided to cut out cheese again as I thought this may be the culprit, I have avoided dairy for years anyway, and only really ate the occasional few slices of hard goats milk cheese, which I seemed to have more of a craving for once I stopped eating gluten.

    I see a dietitian for the first time next week and then hopefully back at last to see my consultant, then I may discover why I still need to keep close to a toilet.

    Most of my other pre coeliac diagnosis symptoms have gone though (constant tiredness, no energy, lack of motivation, terribly painful wind, and generally feeling yuck) so maybe the rest will follow soon for me.

    Good wishes to all fellow suffers, I feel I amongst friends at last.

  • Hi. I am glad you found my question useful and I am really glad you just mentioned cheese. Since asking this question, I have started again. I now will not eat anything unless it says gluten free (no gluten containing ingredients is not good enough), and I have not been eating dairy except milk in coffee/tea at work. Since doing this I have been feeling better until this morning when I woke up feeling bloated again...

    Yesterday I ate a cheese sandwich, and had cheese grated onto a spagetti bolognaise. So no more cheese for me which is a shame as I could eat a block of it, but I won't swap that for feeling better.

    I hope you start feeling better yourself and can tell you that things do get easier... Until you eat the wrong thing again!

  • Yes it is a shame about the cheese, I could eat a block of it myself, sorry that you have to stop again, but as you say to feel better you have to.

    I am being really careful with what I am eating, not that much processed gf stuff, although I have recently found a madeira cake that tastes near to 'the real thing' more than other gf stuff that I have so far tried and I am rather indulging myself with that at the moment, but that aside I am mostly eating veg and rice and rice cakes. I have the coeliac uk food directory and finding that essential when choosing kitchen cupboard stock that hasn't been exposed to cross contamination.

    Really I feel better in myself through reading about others experiences, encouragement and helpful advice from those that truly know is proving my best medicine.

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