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kswan08

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Everything posted by kswan08

  1. kswan08
    Here's what I was thinking... I would hold off to start eating gluten until I am a month away from endo. I still haven't heard anything. My PCP called me yesterday and said, "I doubt someone at age 55 would suddenly become a celiac but I will let you have an endoscopy. You need to have an abdominal CT scan to see if you have a mass or cancer." Such kindness...
  2. kswan08
    I am still learning about intolerance vs allergy vs celiac. I so appreciate all of your info. Thank you!
  3. kswan08
    Thanks, Tom. I am hoping the endoscopy will be scheduled tomorrow. My PCP told me to go back on gluten but I'm waiting to get the date of endo so I don't suffer too soon. I have been on gluten-free for 3 weeks and still have a lot of pain and bloating. Eating anything hurts right now. But I'm better than I was 3 weeks ago. I don't have a GI doctor yet, but...
  4. kswan08
    How infuriating is it that my PCP called gluten-intolerance a "fad"!! I'm still steaming over that! She's giving me a hard time about getting the biopsy done b/c the blood work was negative. I'm not taking no for an answer. I don't exercise because I'm so bloody tired AND because every time I exercise my stomach goes into an uproar and I get sick. I'm a...
  5. kswan08
    I was saying that I thought going back on gluten might "kill" me b/c I am so recently off of it and still feeling so sick. I am HAPPY to have an endoscopy, knowing that I have to go back on gluten in order to get a dx. I think you are saying that the biopsy needs to be specific for celiac, right? I know I don't have Crohn's - my symptoms don't follow that...
  6. kswan08

    ARCHIVED Celiac Specialists In Boston

    kswan08 replied to Hornet's topic in Doctors

    Hi Cara, I live in Boston and my primary care doc is at the BIDMC. She has been horrible to work with and told me that "gluten intolerance and celiac is a the latest fad" and that I should just have a colonoscopy as planned based on my age! I have been in terrible pain and all of my symptoms lead to gluten intolerance at the very least. Any advice on medical...
  7. kswan08
    I checked on my meds and they are gluten-free. I emailed my doctor about the blood work and she relied with a vague answer. So, I have no idea what the actual blood test looked at (how extensive). As a person just starting out on this journey - and not having fun :-/ I wondered if there are any good book guides. I just bought Gluten Free Grocery Shopping...
  8. kswan08
    I'm writing all of this down and will be contacting my PCP for the info. I doubt that I have had any tests for immune deficiency since the doc didn't take me seriously in the first place. I have no idea what "celiac screening" blood work she did, but I will be asking now that I know what the questions are! Thank you. I have so much to learn. I need...
  9. kswan08
    I did some online research last night and have decided to change doctors. I walked into the new practice today to register and was allowed to talk with the nurse practitioner just to get reassurance about the practice, the expertise and their referral policies. I won't see this new doc until after I have had the colonoscopy - mainly b/c it's already scheduled...
  10. kswan08
    I have had the blood test done for Celiac but it was negative. I've been eating gluten-free and lactose-free for 3 weeks. The terrible pain in abdomen is gone but the bloating remains and I am continuing to gain weight while eating very little! I'm truly shocked by the weight gain and more than a little concerned. My doctor has done nothing other than tell...
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