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cornygirl

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  1. Hey everyone,

    Thanks again for the great advice. You're all wonderful.

    I was wondering, how do you usually add foods back in to test? How many times should I eat the food -- is once enough, or should I have a little for a few days in a row? How long should I wait between different foods? A couple of days?

    I just started taking B12 sublingual tablets -- thanks for that suggestion. I'm also making another appt with my regular doc, in addition to the GI specialist this week, so I will ask her about testing me for vitamin deficiencies.

    Peace,

    Lisa

  2. All,

    Thank you so much for your warm and thoughtful replies.

    I'm taking your advice and sticking to rice and chicken, maybe some other very mild foods for a while, then slowing introducing things one at a time to check how I do.

    At this point, the diarrhea and stuff is minor compared to the scarier things I've been experiencing (it's so frightening to wake up and realize you've lost sensation in your body -- and i'm in my 20s!). But I know they could be related, so I guess I should start with the food.

    I do know how lucky I am, and I really believe that if I ever figure out what's wrong with me and get better, I'll live a much healthier and content life in the long run. Or maybe if my body just has more time to heal on its own. The best thing for me I think is that things I used to worry about seem so trivial now -- and that really is a blessing. There is so much in the world to be joyful about, and so little that is truly worth worrying over.

    Thanks again all for your help.

    Off to have a little rice picnic in the park (before it rains!)

    Have a beautiful weekend.

    Lisa

  3. Hi everyone,

    Normally i hate to complain, but i'm bottling up all this frustration and anger and i feel like i should just get it out. So here i am.

    I feel like my whole body is shutting down and there's nothing I can do to make it better. After years of stomach problems that I ignored, I've been getting soooo progressively worse since October. I cut out gluten soon after, on the suggsetion of a few people who knew someone with celiac, because I couldn't get in to see my doctor, and when I did she was kinda rude and very unhelpful.

    The diet seemed to help right away, but I'd still get sick off and on. I'm not sure if I'm being exposed to gluten (possible, since I end up eating out more than I should), or if there's something else going on.

    But since getting travellers' diarrhea in indonesia a few months ago, I've been constantly sick and can't seem to get better. I took antibiotics and now test negative for parasites or bacteria, but am still sick. The diarrhea, cramps, etc are so much worse, but then there's also fatigue, weight loss, muscle pain, joint pain, numbness, dizziness, and just this horrible general feeling of illness.

    I'm 26 years old and, before getting sick, had such a full and active life. I feel like being sick defines me now.

    I'm so tired all the time -- at the worst point two weeks ago I could barely form a sentence, it took so much effort to think and talk. I feel like I'm wasting away -- physically, mentally, emotionally.

    I've been trying to stay positive -- I know being negative and stressed about being sick isn't helping me get better. And I know I have so much to be thankful for -- wonderful people in my life especially -- but I feel so hopeless.

    I've done so much to improve my health -- quit smoking, gave up caffeine, gave up all my old favorite gluten-filled foods, avoid processed foods, cut way down on alcohol. I know it's helping, but I'm still so sick, it's frustrating to feel like I'm giving up things for nothing. (I know it's not nothing, it's my long-term health, but day-to-day I sometimes lose sight of that).

    I think back to November/December when I thought the worst thing in the world was giving up pizza and beer. Now I would gladly give up anything if it meant getting better. I guess I've learned a lot from being sick, but on days like today I feel like yelling, okay universe, I've learned my lessons, now let me heal.

    I don't even know if what I have is celiac -- I finally have an appt with a GI specialist next week but I've been gluten-free for months. I've had so many frustrations with doctors that I feel like I'm left to heal myself. I could deal with anything if I just knew what it was and how to get better.

    Whew, okay, thank you for letting me get that out. And, thank you all so much for the advice that I've been reading overt the last months, and providing this space for getting out this negativity. I hate to share it with others.

    I guess I'm going to try to be more strict on my diet -- stick to really, really simple foods and stop eating out (I know, seems obvious, but I hardly see my friends, so when I do....) Anyway, thanks again.

    Wishing you all good health,

    Lisa

  4. Mindy,

    Some people might disagree, but I wouldn't reduce the amount of bread products you eat until you are able to see a doctor and get tested for Celiac.

    I stopped eating gluten before getting tested and it makes it much more difficult to find out what is wrong with you.

    You might want to keep a food diary and see if you notice certain things making you sicker. That could help answer questions at the doctor's office.

    Good luck and take care of yourself.

    Lisa

  5. Hi all,

    This is kind of a continuation of the last post, about recovering from an accident. I wondered what kinds of over-the-counter things people find helpful or hurtful. I recently had a bad experience with immodium.

    do any of you have advice about common over-the-counter things: pain killers, gas stoppers, etc.

    also, what kind of supplements do you take -- especially those of you with joint or muscle pain?

    thanks in advance for any advice.

  6. Hey all,

    Has anyone noticed excercise affecting their reactions to gluten?

    I just started doing yoga and have now developed a rash all over -- back, legs, hands, stomach, arms. Before realizing I had celiac I did get occaisonal rashes on my stomach and itchy spots on my head, but nothing this bad.

    It comes and goes but seems worse the day after yoga.

    I started bringing my own soap to the studio, etc so I don't think that's the problem.

    Thanks!

  7. I'm wondering how long it takes people to notice symptoms after eating something with gluten?

    When my stomach's hurting and I fell spacey and lightheaded, is it because of the chili I just ate, from sauce at dinner last night, from the half beer I had two nights ago? I'm trying to keep track of what bothers me but it's hard to tell. It seems like I immediately start having stomach cramps (well within 30 min) after eating something with wheat. Is this possible? Am I crazy?

    I haven't been diagnosed with anything and I have a doctor appointment on monday, my second in two months. I'm really nervous that it's going to be a huge battle to find out what's wrong so I'm trying to pay close attention to what I eat and how I feel.

    I feel so much better on a bascially gluten-free diet that it's unbelievable, so I really think I might have celiac. But I don't want to totally eliminate it in case that will screw up any testing I can manage to convince the doctor to do.

    Last time I went to the doctor after my hands, feet, face and tongue swelled up for several days, she acted like I was crazy for suggesting gluten intolerance and told me to start eating normally again.

    Anyway, thanks in advance for any observations or advice.

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