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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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    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
    • I was tested for the full panel, I believe. I had normal values for t-transglutaminase (ttg) igg,t-transglutaminase (ttg) iga, deamidated gliadin abs igg, deamidated gliadin abs iga, and immunoglobulin a qn serum.  
    • Would you review this on Find Me Gluten free?  You can  use the app or just go to it on line. If the restaurant isn't listed, there is a way to suggest it.  I have done that and it works.  Many of us look at that site/ app
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