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Feedback, I Am Confused With Doctors Diagnosis

4 posts in this topic

ok so I was diagnosed with celiacs a little bit before Christmas. I tested positive for two things in a blood test. the doctor orderd me a biopsy to check that I had celiacs. I had the biopsy done mid febuary and tested negative. heres the thing, I was never told to eat gluten before the biopsy to make sure the celiacs could be seen, which is why the doctor thinks I may have celiacs regardless. but since being diagnosed I have had many incedences where I have mistakenly ate gluten. I had been eating rice crispies since the diagnosis and didn't realize they weren't gluten free untill during the super bowl on febuary 3rd. then I stopped eating them. I also had ate some cookies that I thought were gluten free that my mom made but they were in fact just regular cookies. also my cafeteria had served my the wrong food sometimes, for example I have a special breaded chicken that is gluten free, once they mixed up my breaded chicken and gave me real "breaded chicken" gluten and all and I took a bite and chewed and spit it out after I saw the chicken in the sandwitch. and tonight I just realized for the last month I have been eating wild harvest organic cookies that my mother thought were gluten free ( they were on the shelf labed organic next to the gluten free shelf and costed less than the glutino brand...) so I stopped eating those tonight. I just turned 18 years old.


My question is, with all the mistakenly eaton gluten and with the negative biopsy for celiacs, when in fact I believe I had been eating gluten, is it possible that I don't have celiacs? I mean in 4 months can a small intestine heal so good that you test negative for celiacs in a biopsy even when u have been eating gluten? I am also about to have a test for chrones disease done to...


ps. sorry for the spelling and stuff, I had to rewrite this whole thing because the page froze...


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It is my understanding that if the biopsy is not from the right location it will show up as negative.  Ask your Mom to ask the Dr. to do a DNA test for celiac, this is much more accurate.


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I've heard many stories about negative biopsies after positive test results. It seems to be fairly well accepted that in those circumstances what has probably happened is that the doctors missed patchy intestinal damage. There is a LOT of surface area in the intestines and I'm surprised they don't miss the damage areas more often.


Good luck with your Crohn's testing. I hope you are okay.


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Sometimes the biopsy results depend upon luck in selecting the right spot(s).  Damage is not visible to the naked eye unless it is far advanced.  Also, the GI needs to take a sufficient number of samples - 6 is usually recommended - to give a greater chance of hitting the right spot.  Which of your blood tests were positive?    Some are more specific for celiac than others.


Regardless, if gluten is a problem for you, you should eat gluten free anyway.  Non-celiac gluten sensitivity is finally being recognized by the medical community as a disese in its own right.  So don't let the negative biopsy sway you away from eating gluten free.  Some of us just have to do it regardless.  Research has only just really got under way to explore the ramifications of non-celiac gluten sensitivity and to attempt to develop a test for it.


To address your specific question, could you still be celiac with positive blood work and a negative biopsy while you were still unknowingly ingesting some gluten?  When we first start the diet, we are never perfect.  There are always things we discover to have gluten that we were unaware of, for some of us more than for others.  While it is true that you must be 100% gluten free if you expect to heal from celiac damage, some healing can nevertheless take place with random gluten exposure.  But I think the chances are that it was missed or not enough samples taken.  If you were positive on only one blood test, maybe questionable... positive on two (depending on which ones) not likely.


Let us know how your testing for Crohn's goes. :)


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    • Welllllllll, in this particular case it would be best to keep her on gluten until the results come back. The reason I say this is b/c this GI seems whacky. There's a chance you may need to go to a different GI & have the endoscopy redone. I was going to say get a new GI but since the endoscopy is on Monday then I would go forth with it rather than waiting the time it would take to get a new GI & schedule an endoscopy. This GI seems set that it's not celiac & when they get that in their brain it's usually pretty darn hard for them to admit they were wrong. My concern is that she won't take enough biopsies from the right places b/c she's either dumb about how many & where or letting her personal (already formed) opinion influence what she will do. The problem is that you can't be there in the OR with them standing on the GI's shoulders making her do the right thing. Not knowing your daughters age, the other concern is that there may not be "enough" damage just yet, it may be patchy, etc..... that with the mindset this doc has, she will poo poo the dx.  Let me say that it would be a travesty & wholly awful IF you had to put your daughter through another endoscopy but we know how very important it is for her to have an official, dyed in the wool dx. So I'm just trying to think down the line & prevent problems before they come up. I mean, this doc may not even take any biopsies. That sounds insane I realize, but really, it happens more often than you would think. I can't tell you the number of times we've had people come on here after having an endoscopy for celiac where the doc didn't take any biopsies b/c the doc is so stupid as to think they can see the damage & doesn't realize there MUST be biopsies! If you take her off gluten & heaven forbid, you have to end up putting her back on it to get further testing then chances are she's going to get much, much sicker when she's put back on gluten. That most often happens with us and I'm talking about radically sick. See, I'm basing all my thinking on the fact that despite ALL the positive celiac blood work, this dimwit doc doesn't think it's celiac & instead it's all related to the constipation. That is just so far out there, it's NUTS! She's flying in the face of hard evidence! Every test you listed was positive. I can't even begin to understand how this GI comes to her insane conclusion. THAT'S why I am so concerned. 
    • Thanks for your reply. That's what my husband and I thought too. She has a ton of symptoms that's fit celiac. Also I was going to start her gluten free diet after her biopsy on Monday cause the dr said the results take two weeks. Is there a reason I should keep her eating gluten until we get the results? Thanks for your help.
    • In reflex testing they look at a result and decide if the next test is needed.  Another example, some labs only do EMA if the Ttg is positive.
    • Her blood panel is POSITIVE!!!! She's celiac! I don't know what in the world the GI is thinking. That's crazy! The GI obviously doesn't really know celiac. The constipation is tripping her up but celiacs can be constipated as much as they can go the other way and more than 50% of dx'd celiacs presented with NO GI issues. Keep her eating gluten until you get the results of the endoscopic biopsies.
    • Your test results, to me, seem to indicate that you do not have celiac disease. (Everything is within normal levels.) And, your total IgA is high. Many people with celiac disease have low total IgA levels (10-15 times more frequently than people in the general population). The total IgA is conducted because about 3% of people are IgA deficient. If you have a very low total IgA, that can invalidate the three blood tests that rely on your IgA levels.   Plumbago
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