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JD-FLA

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Everything posted by JD-FLA

  1. JD-FLA
    I can only give you my account of why this would make sense and I hope that helps to explain why this is important news. I was misdiagnosed for years and gradually became so ill to a point where I was rapidly losing weight and at a point where I could no longer eat. I am a medium framed 6ft male and was nearing 140 lbs by the time a doctor did testing for...
  2. JD-FLA
    RMJ - thank you for the post. I do not fall into the known cases of the clotting issue with J&J. I am a 58 year old male but in the past I have had bleeding issues after minor surgery and had trouble clotting. Ironically I opted for the J&J as I heard about the possible Pfizer vaccine death of the doctor in south Florida. Initially it was thought...
  3. JD-FLA
    So sorry to hear that you both went though COVID and its lingering symptoms. I have not been tested for COVID as I never really had any symptoms but it is interesting to hear of your friend. I thought the vaccine had actually triggered some older medical issues as I had asthma ten years ago but it went away. I will see a PCP if it continues but like you I...
  4. JD-FLA
    Welcome Alfrieda. I am fairly new to all of this being diagnosed last August and I will tell you it was an absolute nightmare the first month or two as I adjusted to this new lifestyle. It was surprising to me that even small amounts of gluten can continue to cause problems so I tossed out my toaster and several other items that might cause problems...
  5. JD-FLA
    Hi Melissa93 - As you might know they temporarily pulled the J&J so of course that is concerning. The pain on my left side and arm are gone but I continue to have this shortness of breath, the headaches and now sharp jabbing pains in my leg joints. To be honest all of these are very minor and take turns flaring up. I will wake up with no breathing issues...
  6. JD-FLA
    I didn't realize there were two posts on the vaccine question. Do we talk about anything else these days? Ugh. I added my question here as well... Has anyone been vaccinated with the J&J? I received my shot yesterday and I am finding the usual symptoms of pain all down the side of my body that had the injection, headache, nausea, fatigue...
  7. JD-FLA
    Has anyone been vaccinated with the J&J? I received my shot yesterday and I am finding the usual symptoms of pain all down the side of my body that had the injection, headache, nausea, fatigue and my joints are flaring up. The one that is a bit more concerning is shortness of breath or labored breathing especially when I am lying down. It's not bad but...
  8. JD-FLA
    Hi DemonKnight - I am in no way an expert. I have just read quite a bit and I continue to learn as I go along. Like you when I got incredibly sick last summer I started to lose weight...45 pounds in a matter of two or three months. I met with a nutritionist but I found that each of us need to learn what our bodies will tolerate. During my initial diagnosis...
  9. JD-FLA
    I had a similar situation and thanks to one or two contributors on this blog, I opted to continue to stay off gluten and not do a biopsy. It was actually my PCP that diagnosed me with celiac based on blood tests alone. I have yet to have the genetic testing done but from what I understand you can be gluten free and get this done at any time. In the past I...
  10. JD-FLA
    Gemini - thank you for your detailed reply. It was very helpful. I've decided I am comfortable with the decision to be gluten-free and not worry about the biopsy. Again thank you for your time and interest.
  11. JD-FLA
    Hi Scott - thanks for the replies. I don't believe my doctor intended for the GI to diagnose me with Celiac. I believe if I recall he said that a GI is specialized in the disease and would better understand my needs going forward and that is why I was referred. I believe the reason for going gluten free was the weight loss and the current symptoms. ...
  12. JD-FLA
    It was good to hear that WBC low is normal for Celiac. One post I read suggested Lupus as I believe that will destroy white blood cells. You never know what you're reading though on the internet so I was not sure and the PCP did not know what might be causing it. Yes, Gemini, the doctor did order the EMA IgA test and it came back "Positive and abnormal...
  13. JD-FLA
    I was wondering if anyone has done the video endoscopy capsule (VEC)? I don't want to do the traditional endoscopy, so I read this is an alternative. From what I understand there is a risk of the capsule getting "stuck" along the way? I'm not sure the VEC is even necessary. I was diagnosed about ten days ago with Celiac just based on blood-work and symptoms...
  14. JD-FLA
    Thank you for the replies. Yes, PCP did diagnose Celiac and told me to go on a gluten free diet immediately, which I have been doing for about a week. He did refer me to a GI, but with crazy virus situation the appointment was at that time over two weeks. Yes, other symptoms lost 30 pounds over two months and I am still losing. Loss of appetite. Low...
  15. JD-FLA
    I am a newbie and I was wondering what does it mean when your bloodwork comes back and reads - Transglutaminase IgA >250 | and Gliadin IgA >89? The PCP said I had Celiac and referred me to a GI, but with limited appointments I can't get in to see GI for over a week. Do those numbers pretty much guarantee Celiac? Are they very high? I have other symptoms...
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