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Finally...Maybe...A Diagnosis

sc63

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sc63 Newbie
sc63
Posted

After years of being ill more than well, I have found an internist who has discussed Celiac with me. I have a biopsy scheduled on the 12th of Feb, and have had tons of blood tests. I have never heard of Celiac disease until a month ago and have been researching online and through books thoroughly. He seems quite sure that the test will come back positive. The symptoms I have dealt with are all right on board. I have been told that my body rejects iron, b-12, and most vitamins and minerals. I stay fatigued, always have stomach issues, headaches, etc. The last 2 specialists I have been to suggested a blood transfusion. This internist has given me hope, and I should know more soon. I'm grateful to have found celiac.com and hope to finally get my life on track. It seems difficult but very dealable from what I've read. Hope everyone has a great weekend.

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cat3883 Explorer
cat3883
Posted

Like you, I had never heard of Celiac Disease until my doctor finally tested me. I had been ill for years (I am 50).

I was diagnosed 15 months ago and I feel like I am 20. I had migraines, depression, brain fog, fatigue, irritability, terrible PMS, and stomach aches. Within 2 weeks of going gluten free my symptoms started going away. A gluten free diet really isn't hard. Even though there are many processed gluten free products, try to stay away from them while you are healing. I ate (and still do) meats, vegetables, and fruit. I also noticed for the first 6 months or so my body did much better with cooked vegetables. It has been 15 months and I have not had one migraine. Good luck to you.

muchmalignedminx Newbie
muchmalignedminx
Posted

Hi and welcome:-) Im very newly diagnosed as of 5th Feb 2010 and still coming to terms with what I have. My doctor and I were convinced I had Crohn's after the Celiac test came back negative. So the last 3 months has been a roller coaster of emotions and experiences. Thankfully I finally have a diagnosis and after lots of blood tests and having had gastroscopys and colonoscopys and lots of biopsies. I think most of us once we know what we're dealing with can cope with just about anything and thats how Im feeling now if a little overwhelmed by it all. Having gone through a weekend of cold turkey having started on the road to being gluten free; with the most horrible mood swings and being tearful and angry also with the physical pain but today I feel improvement and a light at the end of the tunnel. Fingers crossed it continues. Good luck :-)

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    • trents
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By trents · Posted

      Okay, it does make sense to continue the gluten challenge as long as you are already in the middle of it. But what will change if you rule it out? I mean, you have concluded that whatever label you want to give the condition, many of your symptoms improved when you went gluten free. Am I correct in that? According to how I understand your posting, the only symptom that hasn't responded to gluten free eating is the bone demineralization. Did I misunderstand? And if you do test positive, what will you do different than you are doing now? You have already been doing for years the main thing you should be doing and that is eating gluten free. Concerning how long you should stay on the gluten challenge, how many weeks are you into it already?
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      I mean that I will be re-taking the celiac blood test again while I am currently on the gluten challenge right now, but not sure how many weeks more to keep going, to ensure a false negative does not happen. Thank you.
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      Thank you for your help, I am currently in the middle of the gluten challenge. A bit over 6 weeks in. At 4 weeks I got the celiac blood tests and that is when they were negative. So to rule out the false negative, since I’m in the middle of the gluten challenge right now and will never do this again, I wanted to continue consuming gluten to the point to make sure the blood tests are not a false negative - which I did not receive a firm answer for how many weeks total.    My issue is, with these blood tests the doctors say “you are not celiac” and rule it out completely as a potential cause of my issues, when the symptoms scream of it. I want to rule out this 30 year mystery for my own health since I’m in the middle of it right now. Thank you!
    • trents
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By trents · Posted

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    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

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