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Test results are confusing

Hannahrae1217

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Hannahrae1217 Newbie
Hannahrae1217
Posted

Ok so I had a upper gi with a biopsy and the test results were negative(with gi dr) but my primary dr says that all other symptoms are there. They want to retest with another dr...has this ever happened with anyone else??? 

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manasota Explorer
manasota
Posted

This did not happen to me.  Sorry it happened to you.  If I were in your shoes, I would retest with another GI doc as your first doc suggests.  The villous atrophy can be so patchy that it's sometimes hard to find!  Luckily, my doc took a lot of samples.  Not all were positive.

squirmingitch Veteran
squirmingitch
Posted

Were you eating gluten every day for a minimum of 2 weeks prior to the endoscopy? How many biopsies did the doc take? You should have a minimum of 6.

Hannahrae1217 Newbie
Hannahrae1217
Posted
  • Author

They took one sample. Its been really frustrating with all the symptom and not feeling good. Can someone suggest anything my primary dr said to go gluten free and treat it as the test results were positive.

squirmingitch Veteran
squirmingitch
Posted

I don't know how old you are or if you have kids or what. If you're past child bearing & don't have any kids then I could say just go gluten free & don't look back but if you have kids or plan on having them, they will need testing every 2 years or sooner if symptoms present. it is MUCH easier to get them tested if you have an official dx. Soooooooooooo go to another GI & get another endoscopy UNLESS, UNLESS, UNLESS your primary care doc is willing to give you an official dx. If the primary will give you an official dx then go gluten free -- that's what i would do. Ask the primary care doc is he/she is willing to do that and explain why.

cyclinglady Grand Master
cyclinglady
Posted

Ditto what Squirmingitch said!  

nvsmom Community Regular
nvsmom
Posted

Ditto.  Hang in there.

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purplepugs Newbie
purplepugs
Posted

My daughter had an upper endoscopy in Feb and came back inconclusive.  She had another one last week, and just found out today it was positive.  I was told that if you have beginning stages of celiac, it will not show on an endoscopy, there needs to be more damage in order for them to correctly diagnose Celiac.  Anyway, I am glad we finally have a definite answer and we can move on from this.

elucia Newbie
elucia
Posted

My endoscopy was also inconclusive however I had been gluten free for five years.  The doctor then told me the only way to know for sure is with a genetic test and symptoms.  My daughter was diagnosed with Celiac five years before and told me to get off gluten as i had all the symptoms.  She also took the genetic test with two markers for Celiac.  Because I have osteoarthritis, osteoporosis, and an auto immune disease, I early on assumed I had Celiac and easily went completely gluten free.  I have had five joint replacements do to loss of cartilage so staying off gluten will not help with osteoarthritis but it had been great at increasing my endurance.  It took about one year off gluten for me to get the full benefit but it has been great so I will never go back to eating gluten.    Do other doctors really put much confidence in the blood tests or endoscopies?  Have you run into other doctors that prefer to rely in a genetic test?   

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