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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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    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
    • Cyclinglady is absolutely correct, after hours of internet research the only gluten-free food available at JNB is a fast food chain called 'Nandos'. I was hoping for a bit more variety, but I'll take what I get.   
    • I'm so confused about my daughter's diagnosis.  I hope somebody can help.   My 4 year old daughter has a swollen belly, stomachaches, and lots of gas.  She does not have diarrhea or delayed growth.  Because of her symptoms and because it runs in the family (2nd degree relatives) I had her tested for celiac.   She was weak positive for TTG (IGA)  and strong positive for DGP (IGG)   TTG (IGA)  8   (0-3 neg, 4-10 weak positive, greater than 10 positive) TTG (IGG)  2   EMA: Negative DGP (IGG)  47  (0-19 negative, 20-30 weak positive, greater than 30 positive) Last week, she had her endoscopy.  The doctor found inflammation and little holes or bumps on her duodenum.  He started her on prevacid and said based on his observations, he was suspicious of celiac, but he would not be able to confirm until the biopsy came back. The biopsy showed no signs of celiac disease.  He said that he could not diagnose her with celiac without the biopsy report saying there was celiac damage.  He said he would categorize her as a potential celiac, keep her on a gluten diet and redo the endoscopy in a year or two to check for damage again.  My questions are: 1.)  If it is not celiac, something is causing her duodenum to be inflamed and have little holes or bumps on it, right?  Could it be a wheat allergy or gluten sensitivity?  What else could it be and how do they test for it?  Given her elevated celiac antibodies, how likely is it to be anything besides celiac causing the damage?  2.)  How likely are false positives for TTG and DGP?  I've heard they are pretty sensitive and specific.  Does getting two positives make false positives less likely? 3.) What have you done in this situation?  I want her to have an official diagnosis to make things easier at school and to feel confident that we are eliminating gluten permanently for a worthy reason, etc.  But, I'm having a hard time imagining keeping her on gluten and waiting for her to get more sick and have more intestinal damage just for a diagnosis.     Thanks in advance for your help.  I'm so overwhelmed and confused.  I hope someone has some insight and experience that will help clear things up for me.            
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