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Feedback, I Am Confused With Doctors Diagnosis

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Posted 09 March 2013 - 05:59 PM

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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Posted 10 March 2013 - 05:51 PM



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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Posted 10 March 2013 - 07:26 PM

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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Posted 10 March 2013 - 07:45 PM

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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Caffeine free 1973
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(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
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