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Going Crazy-Need Help Please
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7 posts in this topic

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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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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