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I'm New! Can Anyone Help?

Newbyliz

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Newbyliz Rookie
Newbyliz
Posted

I'm new to the forum and am not sure if I posted my original question correctly. I have had negative blood tests but came back with positive for DQ2 and a subset of that gene putting me in a moderate risk category since I have many symptoms associated with celiac such as: 3-8 loose stools per day, vitamin b12 and d deficiencies, bloating, gas, stomach pain, severe osteopenia in my back(I just turned 40), inflammation in my entire digestive tract from my esophagus all the way down. I had an upper endoscopy which only showed inflammation(esophagitis, gastritis and duodenitis) and a colonoscopy that also just showed inflammation. I have peripheral neuropathy in my right hand and am constantly fatigued and have joint pain. I am scheduled for a 2nd upper endoscopy in 2 weeks because my new gastroenterologist said that there were no biopsises taken from the first part of the duodenum only the 2nd. The testing has been going on for 18 months and my symptoms have been around for about 7 years. Can you have early stage celiac with just inflammation and negative bloodwork?

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Wolicki Enthusiast
Wolicki
Posted

Blood tests are frequently false negative. Be sure to stay on gluten until you have the endo, and make sure they take at least 6 samples. Sounds like Celiac to me. Welcome!

Newbyliz Rookie
Newbyliz
Posted
  • Author
Blood tests are frequently false negative. Be sure to stay on gluten until you have the endo, and make sure they take at least 6 samples. Sounds like Celiac to me. Welcome!

Thank you so much for your reply. I have to say that I have been making sure to eat gluten containing foods at each meal and surprise, surprise I am not feeling to great. My stools have definitely increased and the gas and stomach pain also, heartburn seems to be getting worse when I was never one to suffer with it except when I was pregnant with my children. Is heartburn sometimes an indirect symptom of celiac? I just want the second upper endoscopy to be over and to HOPEFULLY

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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

      I am a male and had developed osteopenia by age 50 which is when I finally got dx with celiac disease. I am sure I had it for at least 13 years before that because it was then I developed idiopathic elevated liver enzymes. I now have a little scoliosis and pronounced kyphosis (upper spine curvature).  All of your symptoms scream of celiac disease, even if the testing you have had done does not. You may be an atypical celiac, meaning the disease is not manifesting itself in your gut but is attacking other body systems. There is such a thing as sero negative celiac disease. But you still have not given me a satisfactory answer to my question of why do you need a differential dx between celiac disease and NCGS when either one would call for complete abstinence from gluten, which you have already been practicing except for short periods when you were undergoing a gluten challenge. Why do you want to put a toxic substance into your body for weeks when, even if it did produce a positive test result for celiac disease, neither you or your doctors would do anything different? Regardless of what doctors are recommending to you, it is your body it is affecting not theirs and they don't seem to have given you any good justification for starting another gluten challenge. Where you live, are doctors kings or something?
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      Sorry to put it clearly, at 15, infertility started (tried to word it nicely) meaning menstruation stopped. Which is in correlation to celiac I mean. Thank you. 
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