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Halfway To Diagnosis
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I'm a newbie. I mentioned to my general doctor about two weeks ago that I had been having loose stools for several months and she added some extra tests to my routine blood work. I don't know exactly what they were, since I haven't received a copy yet, but you all with more experience probably know. A week later she called and left me a message that I had gluten antibodies in my blood, I have celiac disease, she was referring me to a nutritionist.

I was pretty shocked (I thought I would end up just having some wicked intestinal bug.) So I called her back and asked if she was absolutely sure. She said she would refer my case to the GI doctors and would let me know if they wanted to do anything more. In the meantime, I stopped eating gluten. It's been four days and I honestly can't say that it's been any sudden cure. Today my doc calls and says the GI docs think the first test was conclusive, but they want to see me to go over everything and will also run some more blood tests.

So, I'm supposed to start eating gluten again and get these blood tests later this week. Did I do the right thing? I was really surprised that she would make a firm diagnosis on something so serious when it seems like there's a lot of uncertainty with this disease. Does it seem that my doctor screwed up, or am I just being difficult? Can I have gluten antibodies but not have celiac?

Thank you for any advice or information!

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This is just my two cents worth. They couldn't pay me enough to eat gluten for a couple of weeks so they could run another blood test.

It does take some time to heal, it took me about 2 years but I had celiac disease for at least 10.

Good luck and welcome

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If you are expecting more testing, or if you are wanting a small bowel biopsy to be sure of your dx, it is important that you continue to eat gluten during the testing phase. Some people are *very* sick and I can completely understand why they don't want to continue to eat gluten. However, if you can stick it out for a little longer, you will have more accurate test results. I was asymptomatic, so I just ate all my fave stuff anticipating the news. I figured if I was going down, I was going down in flames, lol. That is just me, though. Like I said, I felt great then, still feel great, expect to continue feeling great.......................

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If you are expecting more testing, or if you are wanting a small bowel biopsy to be sure of your dx, it is important that you continue to eat gluten during the testing phase.  Some people are *very* sick and I can completely understand why they don't want to continue to eat gluten.  However, if you can stick it out for a little longer, you will have more accurate test results.  I was asymptomatic, so I just ate all my fave stuff anticipating the news.  I figured if I was going down, I was going down in flames, lol.  That is just me, though.  Like I said, I felt great then, still feel great, expect to continue feeling great.......................

<{POST_SNAPBACK}>

My problem was I did not know I had to eat gluten for a time before having the test. No wonder I have to retake it but with burning stomach and kidney pains with gluten, I don't know if I can do it again. But if I want the diagnosis to be accurate I guess I will have to do it again.

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    • Thanks for replying. You've been very helpful and given me some ideas of trying a few foods in small amounts. I wish I had rotated food months ago then it might not have got so bad. Thanks again and I wish you well.
    • Until my recent blood test results I've been having cinnamon and mint tea in the mornings, which seemed to have a positive effect calming the digestive system (and tastes good too!)  After the first step of diagnosis with high Iga TTg I took at look at the cinnamon sticks I make the tea with and it says "packed in a factory that may contain wheat, corn etc. etc." so that I guess would sound alarm bells for many I reckon. That said I'd imagine the way most of these herbs and spices are harvested isn't exactly gluten-free friendly yet I've seen quite a few recipes using it. How are people getting around this as I can't see any specific gluten-free certified cinnamon products out there? Really could do with my tea back P.S. I also have chamomile tea using the raw flowers which may have a similar background but seem to be less of a risk somehow?
    • If I do have to go back on gluten for a bit it'll at least be a temporary relief from the withdrawal symptoms (or at least what I hope are just withdrawal symptoms). Today's returning malady is acid reflux, something I'd thought I'd seen the back of recently. Really need that to calm down as PPIs the doctor gave before were evil medication and caused 10x more problems, possibly the worst I've ever felt whilst on those so won't be going back there! Although the scales seem to have stabilised in terms of weight loss in myself I feel like I'm wasting away at present, what with the random pulling sensations in muscles and tender head area I'm just scared for what other illnesses may be laying in wait related to the celiac genes  Think I'll head back for the ESR and CRP blood tests next week as the shoulder and temple pains are really worrying me right now, could just be the gluten intolerance but the other options are terrifying if not caught early. So much uncertainty, apart from the fact that none of this ever gets fully better (if at all)...
    • You're welcome! Good luck! And if you get nowhere there, remember, the higher you go, the nicer they get. Skip straight up to the top brass.
    • I'm sorry you've been having such a rough time.  I'm thinking you may have accidentally ingested something containing gluten, and that's what caused your reaction.  A lot of people will react quite severely to even a tiny bit of gluten.  That's why there is so much on here about avoiding cross contamination.  Even though you've been diagnosed with NCGS, you still need to live as though you have actual celiac disease, and be very careful not to cheat.  Your body will punish you for it.  :/  In the meanwhile, nurture yourself kindly and gently, just as you would after a severe bout of food poisoning or intestinal infection.  Comfort foods, like broths and soups and smoothies.  You might want to avoid lactose for a few months too.  Sometimes we lose our ability to digest lactose when our intestines are damaged and vulnerable like yours is right now.   And remember healing takes time.  So does learning the gluten free lifestyle.  Expect some setbacks occasionally.  You WILL get better!
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