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New Coeliac struggling

Posted , 5 users are following.

lindsey1871
lindsey1871

Still having symptoms even though sticking to gluten free diet especially when I eat salad, beans, apples and grapes.

Just when I think I'm getting to grips with the new lifestyle I end up with cramps, looking like I'm pregnant with twins, fatigue and painful arms and legs.

Help starting to get me down.

Does anyone else react to salad and fruits etc.

1 like, 8 replies

8 Replies

  • lynda01728
    lynda01728 lindsey1871

    Posted

    Hi Lindsey,

    Just had to write to reassure you. Yes, I have been (and occasionally still am)exactly as you describe. After 18 months strictly gluten free and still suffering the dietician suggested FODMAPS and I have been very much better since......if I don't break the rules!

    It would be easier to tell you what I can eat than what I can't as the forbidden list continues to grow. My most extreme reaction recently was to broccoli! The Coeliac disease has done it's damage and the legacy goes far beyond gluten. Living on such a restricted diet is not easy at all but gradually the limb pain and numbness has subsided, the bloating has eased considerably,my vision is no longer blurred and I've stopped falling over. 

    FODMAPS is all about foods converting to sugars and finding out what your body can tolerate, Ask your dietician for info if it's not suggested.

    Other things to consider are......Coeliac is linked with diabetes and thyroid problems. Talk to your Gastroenterologist NOT your GP.......they have no idea whatsoever. Most importantly educate yourself on this horrible disease.

    Things do improve ,,,,,,,but it's not fast or easy.

    Wishing you well.

    Lyn smile 

    • lindsey1871
      lindsey1871 lynda01728

      Posted

      Hi Lynda

      Thank you for your reply I am glad to hear you are on the road to healing.

      I am due to see my consultant next week and I'm going to ask for a refferal to a dietician that is registered as a FODMAP dietician.

      I also have vitimin B12 deficiency anaemia and vitimin D deficiency.

      I am tired of hearing myself tell my partner and family "I dont feel too good" of getting upset when my partner takes me out for a meal and there's hardly anything on the menu I can eat. He's trying to be patient but I can see he's getting fed up too.

      Thank you for your reassurance. I do try to stay hopeful and positive but I have really bad days too. Xx

  • janet68649
    janet68649 lindsey1871

    Posted

    I'm with you.

    The only thing my stomach tolerate is avocado, rice, boiled chicken breast, corn, that's it.

    I still don't know what I have, my results will be ready this week.

    Grapes are bad, oranges, I'm scare to drink juices, I bought gluten free cheeps, artichoke dip that is gluten free and very good, but my stomach is bloating. I read that in a healthy person gluten will be out of your system in 5 to 6 month, I feel better than before with the diet, the aching is still there, the anxiety every one day. Im trying to control my self and walk around my neighborhood, my legs don't want to walk, but I'm pushing myself.

    I hope you feel better soon.

    • lindsey1871
      lindsey1871 janet68649

      Posted

      Hi Janet

      I am sorry to hear you are still waiting for an answer and hope you get your results soon.

      I totally understand where you are coming from with regards to your legs.

      When I am having a particularly bad episode it's a real effort to move my arms and legs. I have lower back pain as well as the bloating and tummy cramps.

      I feel exhausted and constantly tired. I wake up feeling disorientated and foggy brain as well as nauseaus

      I wonder at times if anyone else has these symptoms or am I imagining it

    • janet68649
      janet68649 lindsey1871

      Posted

      Hi Lindsey, I feel the same, disoriented, brain fog, zombie, walk very slow, I'm hungry, but can't swallow food, Im eating little by little, I got coconut and almond milk today, I think it was ok, 2 hours and not problem yet. I do have back aches too.

      My husband is getting frustrated because I'm not eating his food, he thinks all is in my head, but is worried too. The anxiety is killing me, walking in the sun make me feels better, I do freez in the stores, I'm lower in vitamin D too.

      I hope my results come back soon to star a treatment soon.

      Thank you. Take care.

  • lindsey1871
    lindsey1871

    Posted

    When I am having a particularly bad episode it's a real effort to move my arms and legs. I have lower back pain as well as the bloating and tummy cramps.

    I feel exhausted and constantly tired. I wake up feeling disorientated and foggy brain as well as nauseaus

    I wonder at times if anyone else has these symptoms or am I imagining it??????

  • jessie92729
    jessie92729 lindsey1871

    Posted

    OMGOD

    I thought I was the only one

    I got my blood results backs and it says I'm positive on IgG

    I guess that means I'm a positive celiac or so the nurse said

    I got a endocopsy and biopsies last week and waiting for my results

    I'm always tired sore and stomach pain on my upper abdomen

    Annoying bloating and sometimes I wake up nauseous

    I'm on my third day of a gluten free diet

    I take dhl licorice which eases the pain

    But never the less it's still their

    And I constantly get bloating

    I'm ready to lose my mind

    And I hate that ppl think this disease is no big deal

    Just "stop eating gluten"

    But it's so much more than that :,(

    I wish you guys all well and a fast relieve

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