Just been diagnosed and a month gluten-free, but feeling even WORSE - has anyone else had this?

Hi all

After having been really ill for a year (aching joints, tiredness, bad skin, hair loss, hormonal issues) - I was finally diagnosed as having Coeliac by my third consultant. My biopsy in November confirmed it and I have been on a gluten-free diet for just over a month.

I was kind of hoping that I would start to feel better fairly quickly, but it seems to be just the opposite. Through the whole last year I've managed to keep my spirits fairly high and not let the tiredness get to me - but the last two weeks I have been able to get out of bed and have slept in very late day after day for the first time ever in my life.

I've started on Iron, Calcium, Vitamin D and Folic Acid on the reccommendation of my specialist, so think I am doing all the right things... Has anyone else experienced this please? Is it meant to get worse before it gets better?

Thank you all for your kind help

Charlie (Berkshire)

6 Replies

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  • I felt good after about the first month and then I felt dire for quite a few months before things started to pick up. My doc suggested selenium and magnesium and I take a multi vit with everything including these. It definitely makes a difference. I'm also on calcium/vitamin D3 tabs from the doc. One of the nurses told me that the dietary changes, healing process etc put a lot of stress on the body so you are bound to feel tired.

  • I felt a lot worse before I started to feel better......the calcium and d3 help lots with my mood...but it took months before I started to feel more like the person I was years ago....but mind it only takes me to get glutened and I feel like crap for a couple of weeks........all I can say is the only way is up.........double check everything your eating.....and try to go with foods that are naturally gluten free.....and not to eat the gluten free range from the supermarket till your body starts to feel better.....good luck Hun x

    Janie

  • Hi Charlie as the other members have said unfortunately it's common to feel a lot worse before you feel better. Especially as your body craves the carbs and cutting these out can lead to headaches, mood swings and sugar level dips.

    The best advice I can give is:

    - get your Doctor to check your levels of B12, Iron, Ferritin, Calcium, Vitamin D via blood tests as just taking the supplements you've been recommended to isn't always enough i.e. if your vitamin D is very low in single figures as it often is at diagnosis you will need prescription high strength doses and probably a vitamin injection. Generally low iron and Vitamin D make you very tired and feel like a zombie.

    - Read some of our blog posts here for tips and videos: glutenfreeguerrillas.tumblr...

    - Make sure you have separate utensils, toasters, chopping boards, butter etc for you so you avoid cross contamination

    - eat as naturally as possible in the first few months i.e. fruit & veg, home made meals

    - consider going lactofree in the early months as it can take a long time for your villi to heal and be able to process lactose

    Remember your body will do it's best to heal but it takes time. For some coeliacs it can take between 1 year to 7 years for the villi to heal and work properly again. During which time your body has to get used to going gluten free and digesting food properly again. Plus when you were eating gluten there were normally high levels of Cortisol and Adrenaline circulating in your system as the body fought the gluten. So you get a kind of come down from going guten free.

  • Ive been coeliac over 25 years,after diagnosis the following 12-14 months were terrible,,I seemed to get every bug going,always feeling run down,,generally felt like death.Now for the good bit, it does get a whole lot easier,,health picks up,energy levels improve and the bad days are now very few and far between,,usually due to a mistake on my part eating something I shouldnt.Chin up we all know how hard it is,but as you can see we all come through it,,Good luck and happy 2013

  • Make sure that you have also been tested for thyroidism, as this often goes hand in hand with coeliac disease and can really affect your energy levels. Can be regulated by daily medication.

  • All - thank you so much for all the great adviice. I'm so chuffed to have found this forum and network of support, as all this can be a bit daunting at times. It's good in a way to hear the experience I am having is normal... I will take all your advice on board and wait eagerly for this bit to pass on my way to better health. Happy New Year guys :0)

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