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Going Crazy-Need Help Please
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I have been suffering terribly with stomach issues. I specifically asked my doctor to test me for Celiac. Last week I got the call from my Doctor that my blood test came back positive for Celiac Disease. Since I am PETRIFIED of having this biopsy, he told me I can just start eating gluten free. Even suggested I see a Nutritionist. I think it would be beneficial for me to have the biopsy, just to be 100% sure. Does anyone have an opinion about this? How accurate are the blood tests?

Also, when I decided I'd make an appt for gastro doctor, I called back to see if I should start eating gluten free. He told me I should. But now I am confused from my research. Can I eat gluten free before the biopsy? Not sure if it's the blood test that will get incorrect results from gluten free eating, or the biopsy.

Sorry, I am very overwhelmed and confused. Waiting until March 5th for appointment with gastro doctor is like an eternity. I am going CRAZY. And I want to feel better. NOW.

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Is your gastro appointment for the actual biopsy, or just an initial appointment to see if a biopsy is needed which would be scheduled another time? I'm not positive, but 1 week on a gluten-free diet may not make a great deal of difference on the biopsy results, but generally you should continue to eat gluten until all testing is complete.

According to what I just saw on this other thread: it's possible to get a false negative on the blood test, but if it's positive then it's positive. If the dr. will diagnose you based on the blood test without the biopsy, that might be the way to go. In the end it's your decision, though.

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depends how long you have to wait for the biopsy. However, a false negative biopsy is more common than a false positive blood test. Depends on the severity of villi damage....you can have symptoms even before the villi are severely damaged...

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Welcome to the board, varthurs. Some tests for celiac are more definitive than others. Do you know what blood tests your doctor ran and which were positive? The only test which could potentially falsely indicate celiac disease is the tTG, in which a positive result can possibly indicate other conditions besides celiac. But if you have a positive tTG and your symptoms disappear with a gluten free diet, well then I think you have your answer.

It is entirely your choice whether or not you have the biopsy, but if you do decide to have it you should continue eating gluten up until the time of the test to attempt to avoid a false negative. As a pp said, there is a 20% error rate which produces false negatives, either because the damage is not yet severe enough or not sufficiently widespread and is missed, or the doctor did not take enough samples, or the pathologist did not read it correctly.

If I were you and your doctor is willing to diagnose based on the blood test results, I think I would skip the biopsy for now (although there is really nothing much to be afraid of with this procedure - it is pretty routine and is done under sedation, not anesthesia). If your symptoms do not resolve on the diet it is a procedure that can always be done at a later stage, as other conditions which might be looked for through the scope do not require you to be eating gluten.

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I agree with Mushroom. A positive tTG IgA is not possible without your immune system reacting to Gluten - while a negative result does not rule out Celiac Disease.

Going gluten-free seems like the best next step if you are certain you don't want an endo. I've gone back in forth about the need for my initial endoscope. Over the past few years I thought maybe it would have been enough to go gluten-free after the positive blood work. I now am grateful that I went ahead with the initial scope and a follow up a year later as the first test confirmed the celiac dx (so never gave a second thought to the need to be 100% gluten-free). The subsequent scope was helpful in putting the rest of my puzzle together as the damage to my digestive track became worse after 13 months of complete adherence to a gluten-free diet -- eventually I found that I was intolerant of many foods.

I likely would have figured this out without the scopes, but it was part of solving the puzzle for me.

Welcome and Good Luck to you!

PS...you do need to be eating gluten up until the endoscopy is complete should you decide to have one.

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Thank you, all. I am not sure which exact blood tests were taken. I will try to get copies tomorrow.

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I just had the endo done 2 weeks ago. It was a breeze! My test came back positive for Celiac disease. Good luck!

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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
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