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Newly diagnosed Celiac

Posted , 4 users are following.

panda95
panda95

Hi, I've recently been diganosed with celiac. Over the past couple of months I feel like my symptoms have worsened. I now get nerve pain, and my nerve pain happens in different places. My leg jerks sometimes, my muscles twitch. Whenever I ingest gluten I can feel strong movements in my stomach, it gets gassy, bloated. I've had hair loss for a couple of years now and I am anemic and Vit D deficient. On one occasion I woke up and changing sides on my bed caused the bones in my legs to hurt and at times I felt it slightly difficult to walk up the stairs because its as if my legs are stiffer? I have muscle weakness in my arms. Honestly I could go on.

I'm just worried about how this is affecting my nervous system and if I should be worrying about the severe bone pain I had on one occasion.

Do you have any advice for me?

Oh and I'm trying to go gluten free and although the food I'm eating is gluten free, my stomach movements persist and I think I'm getting gluten into my system somehow. Do you have any tips on avoiding contamination? 

Thank you you advance to whoever replies!

1 like, 4 replies

4 Replies

  • lynda01728
    lynda01728 panda95

    Posted

    Sorry to hear you are suffering so much. This is a nasty disease and so misunderstood it seems. 

    Firstly, you must do everything you possibly can NOT to have ANY gluten at all. This is really important and will be for the rest of your life!

    Make sure you have all the blood tests to test for deficiencies and you should have a bone density test. Don't bother with GPs they have absolutely no idea about Coeliac. Talk to your Coeliac nurse or Consultant to get help.

    I once wrote down all my symptoms.....and covered a side of A4! Like you , I have severe joint pain and stiffness. I have been off gluten for over a year now but the symptoms come and go. I cannot tolerate gluten free oats and in fact don't feel good having any grains at all. Having said this I do feel so much better off the gluten and I think it is a long process to get well, Depending on how long it has taken you to get a diagnosis and your poor gut has been being destroyed will influence your severity of symptoms and the legacy of attributed disesases you may now be left with. Next week I see a Rheumatologist as I have suspected Rheumatoid Arthritis......and so it goes on.

    Unfortunately for us.....there is no money to be made by the pharmaceutical giants .....no magic pill that will cure us.......hence no one is really that interested and there is little research into this relatively common condition or education for GPs.( A senior nurse at the hospital didn't even know what Coeliac is!!)

    I would recommend eating a very bland healthy diet. No spices or irritants. I was lactose intollerant for about 6 months and you maybe too. I can now tollerate a limited amount of dairy.A food diary is a good idea to keep an eye on what you are eating and tollerating or not.This is also useful when seeing your health care provider. I find that I get very bloated and uncomfortable if I eat a lot of fruit. 

    If you eat out you risk contamination. I prepare all food on a clean plate and cook using seperate pots and pans. Just be mindful all the time......it really is worth it.....even if it is annoying! 

    Try not to worry, this disease seems to go hand in hand with severe anxiety and you can fee overwhelmed. Bach Rescue Remedy drops are good.

    Hope this helps and you feel better soon.

    Best wishes. smile

    • panda95
      panda95 lynda01728

      Posted

      I think it's hard to not get overwhelmed but I will try. I only started noticing things going wrong July 2014 and I was finally diagnosed 2 days ago. Hopefully at my follow up appointment I will request bloods and I don't see why he'd disagree but with a bone density scan he might think I'm being over dramatic. But honestly its worrying as I'm only 20.

      Do you know of any food blogs that you could refer me to with quick and easy recipes?

      I really hope things don't get worse, I am concerned about developing other autoimmune diseases, particularly with the fact that I get a lot of nerve pain all over the place!!

    • lynda01728
      lynda01728 panda95

      Posted

      Ah bless you....didn't realise you are so young! That is a real advantage to getting things sorted out and you should be fine. I'm in my 50s and was poorly for years before I finally got the correct diagnosis a year ago. My children are about to be tested and I am certain my 22 year old daughter has it too. Close members of your family need to be tested too as it's highly likely you won't be the only one.

      The Coeliac Society website is good for all the factual stuff. You can get food on prescription but it's not great. Eating out is difficult but Pizza Express are fab and have a designated kitchen area in all there restaurants which is totally GF. Be careful of products labelled 'Low gluten'....that's just rubbish for us.....it must be 'NO gluten'. It is in so many foods(even ketchup!) and also beware of barley,malt(malt vinegar on your chips!!) and rye as well as wheat.Make sure you don't eat foods cooked in oil that has previously cooked something with gluten. I think there is a phone app to help and I couldn't live without google!

      You should be offered all the tests including bone density so don't worry about being dramatic and if they are not offered make sure you ask.

      You will be fine i'm sure but it may take a while. Once you are off gluten totally for a while your joints should start to feel better......try to be positive......and educate your friends and family..... because people really don't understand just how important being GF is to us.

      Wishing you well.

      Lyn smile

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  • julie84152
    julie84152 panda95

    Posted

    High Panda, me just been diagnosed. I am 60. You will be fine i have been looking on different sites,as you do, and have found good info. Not as hard as i thought it would be re eating although must be careful not to contaminate your gluten free food, this apparently can be done for example from a crumb from a knife used to butter unglutened bread. Just relax dont stress. It is pretty easy really! Lynda had a lot of good advice in her reply to you. when you look at the list of foods on this site it helps heaps!!!! take care. you can do it no worries. you are not alone!
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