I am afraid to eat now...

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alexandraleaden
alexandraleaden Posts: 99
in Food and Nutrition
freaking out a bit, ever since I got diagnosed with celiacs disease last week - the pain is ten times worse...Its got to be me mentally sabotaging myself right? That being said, I'm officially terrified to eat because wether I eat gluten or not i get the horrible aching...

has anyone experienced this? I mean the pain was bad before, really bad - but this is unbearable! but it can't just change as a result of confirmation and diagnosis can it?

Replies

  • SteelySunshine
    SteelySunshine Posts: 1,092 Member
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    I can't blame you for being afraid to eat. But, there might be another reason for the pain. See a doctor get a referral to have that checked out. It is possible to have two medical conditions at the same time that cause pain, so if that is the case for you maybe at least one thing can be cleared up (if there is another thing causing pain) and you will just have celiacs(not sure what this is, but it sounds dreadflul) to deal with.
  • JudieJudes
    JudieJudes Posts: 174 Member
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    Sunshine is right - see a doctor to be checked over again. Hope the pain subsides Lovie.

    JJ x
  • Oriole15
    Oriole15 Posts: 58
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    Try writing down everything you have eaten since the diagnosis and take the list to your doctor.

    The doctor can then check you didn't inadvertently have some "hidden" gluten and if you haven't they may recommend further tests to see if the remaining pain is down to another condition on top of the coeliac disease or if it is down to the damage the gluten has done already.
  • Chieflrg
    Chieflrg Posts: 9,097 Member
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    I your pain throughout your entire body or certain areas?
  • WalkingMermaid_
    WalkingMermaid_ Posts: 205 Member
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    I have celiac disease too, when I was diagnosed I obviously cut out all gluten but began having worse symptoms than before I was diagnosed which was frustrating and confusing. My body seemed to go through a sort of detox process for about 8 weeks, with numerous aches, IBS like symptoms, loose bowel movements, coughing up mucus and much more. After 6-8 weeks I began to feel much much better, and now I feel great.

    Look out for hidden gluten, it's everywhere. For the first few weeks I was unknowingly taking a multi-vitamin that contained gluten.

    Start experimenting with foods and you'll eventually find what agrees with you. I'm also milk dairy intolerant and I don't eat meat either, so you'd think there's nothing left to eat right?? But I manage 1900 cals a day quite happily :)

    Feel free to inbox me if you have any questions :)
  • cfriend71
    cfriend71 Posts: 207 Member
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    I am not an expert but I have never heard of pain from celiac, just unexplained weight loss (usually) and allergic reactions. I am sure there are other symptoms but if you have pain of any kind you should go to the emergency room.
  • jayliospecky
    jayliospecky Posts: 25,022 Member
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    My husband had horrible stomach pain from gluten. Absolutely if you are worried go see your doctor. My husband was also terrified of food for a long time. Depending on how long you went undiagnosed, your body will have varying degrees of damage. In his case it took a long time to heal completely. He felt probably 80percent better after a few months, but now (after several years) he feels the best he's ever felt in his life and he LOVES food. And he's cautious, but not afraid anymore. (hugs).
  • pittbullgirl
    pittbullgirl Posts: 341 Member
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    Try writing down everything you have eaten since the diagnosis and take the list to your doctor.

    The doctor can then check you didn't inadvertently have some "hidden" gluten and if you haven't they may recommend further tests to see if the remaining pain is down to another condition on top of the coeliac disease or if it is down to the damage the gluten has done already.


    THIS! ^^^
  • gigglybeth
    gigglybeth Posts: 365 Member
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    I am not an expert but I have never heard of pain from celiac, just unexplained weight loss (usually) and allergic reactions. I am sure there are other symptoms but if you have pain of any kind you should go to the emergency room.

    I have celiac disease and get intense abdominal pains when I accidentally have some gluten. I was also 100+ pounds overweight. Unexplained weight loss is only a symptom in some people. Newer studies show something like 30-50% of people with celiac disease are overweight. Unfortunately, some doctors are still spewing this outdated information and dismissing people's concerns that they might have celiac disease because they aren't underweight or have lesser known symptoms.
  • RobynLB83
    RobynLB83 Posts: 626 Member
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    Emotions effect digestive problems profoundly. It's not at all surprising to me that you get a celiac diagnosis, and the stress ****ed up your system and made your pain worse by kicking up IBS symptoms. Since celiac actually damages your intestines, you can have symptoms with or without eating gluten. Try eating an exceptionally plain and bland diet for a few days to let your stomach settle down. When I get an IBS bout, it can last for 4-5 days even without eating trigger foods. I revert to eating from a list of "safe foods" I have compiled for myself. (Plain chicken breast, rice, carrots, spinach, bell pepper, and tomato.) These are foods that I have never had any symptoms from. Be patient and try to distract yourself from your discomfort by keeping busy with your normal activities. Worst possible thing to do is dwell on the pain- obviously makes it worse.
  • alexandraleaden
    alexandraleaden Posts: 99
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    wow thank you everyone - your making me feel better about this.

    i have been with a specialist and my primary care physician this whole time - emailing back and forth, bloodwork shows just a huge case of celiacs

    I belive you are right its emotions slash my intestines are just jacked up.

    the tips about the bland diet seem to make the most sense to me.

    THANK YOU SO MUCH FOR RESPONDING....

    If you have any friends with celiacs, or if you have celiacs, I'd love to friend you! Thank you so much!
  • alexandraleaden
    alexandraleaden Posts: 99
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    I your pain throughout your entire body or certain areas?
  • alexandraleaden
    alexandraleaden Posts: 99
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    I your pain throughout your entire body or certain areas?

    Classic Celiacs pain below ribs above belly button.... :( like you have been kicked in the gut - literally

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