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Update From Post Below Got Biopsy Reports From 2004

jenny2

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jenny2 Rookie
jenny2
Posted

thanks for telling me to get my reports from 2004. my doc has since died but i found my records from the hospital. i didnt know in 2004 that biopsy was done. it says: biopsy of duodenum showing changes of chronic duodenitis with mild villous atrophy and intrapithelial lymphocytes that suggests celiac disease. i was never given a copy of this record, my doc told me that possible Celiac but my blood tests was negative then.

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ravenwoodglass Mentor
ravenwoodglass
Posted

Positive biopsy trumps negative blood test. Did you get copies of the blood test? The reason I ask is some doctors will call a low positive a negative. If you aren't gluten free yet you could get the blood work and maybe the biopsy redone. Or you could just hand a copy of the biopsy results to your new doctor for your record and consider yourself diagnosed.

MissKris2 Newbie
MissKris2
Posted

Wow, it's a shame you didn't get a copy of that report back then.

Roda Rising Star
Roda
Posted

Wow, it's a shame you didn't get a copy of that report back then.

I was thinking the same thing. You were diagnosed with celiac in 2004! Did your doctor recommend you go gluten free then? If not, and you haven't, then it is a shame that they didn't inform you. You have suffered needlessly for 7 years. Are you planning to redo testing while you are still consuming gluten or are you going to take your previous results and go gluten free? Either way you have an answer now. Hope you start to feel better soon.

Takala Enthusiast
Takala
Posted

You said earlier this month that you were getting another set of blood tests for celiac.... what were those test results ? What tests were done besides genetic ?

You should have a blood test for celiac antibodies, if you feel you "need" more tests to confirm, this is ridiculous. No doctor should be looking at symptoms AND a positive biopsy as your have described above, and saying that it was only "possible" celiac.

jenny2 Rookie
jenny2
Posted
  • Author

my gastro doc did basic blood tests and the celiac genetic test on me. he did a colonscopy earlier this week and i have a small bowell follow thru next wed. i have faxed my new gastro the results of the 2004 biopsy so that he can read the report. i would like to have another endoscopy done to confirm celiac or possible more blood work. i think he is also checking for crohns disease. i would like to go gluten free but i am not sure if that would mess up the results of these tests they are running so i still eating gluten. basically i am a mess, i hope this dont go on very much longer, i have lost so much weight 25 lbs in 1 and half months and can not gain any weight at this time.

Twinklestars Contributor
Twinklestars
Posted

Oh hun, what a rollercoaster! It's such a shame you weren't told of your diagnosis in 2004! Yes, you need to stay on gluten if you want further testing, but I'm hoping your new doctor just looks at the results and says celiac straight away. The sooner you can be gluten-free the better. You have suffered needlessly for so long. That is just so wrong.

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ravenwoodglass Mentor
ravenwoodglass
Posted

my gastro doc did basic blood tests and the celiac genetic test on me. he did a colonscopy earlier this week and i have a small bowell follow thru next wed. i have faxed my new gastro the results of the 2004 biopsy so that he can read the report. i would like to have another endoscopy done to confirm celiac or possible more blood work. i think he is also checking for crohns disease. i would like to go gluten free but i am not sure if that would mess up the results of these tests they are running so i still eating gluten. basically i am a mess, i hope this dont go on very much longer, i have lost so much weight 25 lbs in 1 and half months and can not gain any weight at this time.

Your doctor can easily give you the endo when he does the lower scope. Some doctors won't do that because then they only have one 'surgery' charge. If they do them on different days then it is 2 charges for the room, the anesthesiologist, the doctor, the lab etc....

You doctor works for you. Call the office and tell them that you want the endo done at the same time or you want that done first. Since they have the results of the last scope that shouldn't be an issue. IMHO if it is then you need a new GI.

jenny2 Rookie
jenny2
Posted
  • Author

thankyou everyone for all the information that you have gave me, due to the suggestion that i should go get my medical reports and the fact that i faxed them to my new doc they are scheduling me for endoscope next friday. i am so relieved. finally i may get some answers..

Bubba's Mom Enthusiast
Bubba's Mom
Posted

I'm absolutely shocked that you weren't given a DX in 2004 and told to be 100% gluten free! I feel really bad for you. If you're losing weight it's a pretty good sign that your villous atrophy has gotten worse.

I just can't understand why Dr.s are SO against giving a celiac DX?

jenny2 Rookie
jenny2
Posted
  • Author

i was told that i could go gluten free in 2004 but my blood work was negative and they wasnt forsure if i had celiac disease or not. my doc was retiring at that time and he acted like he was not to worried about the fact that i may have celiac disease. i should have went to a different gastro at that time but i live in small area and no gastro docs and i didnt want to drive a hour to see someone at that time. dumb of me. i am driving a hour now anyway.. sometimes i just dont think that doctors take celiac disease seriously enough and that really upsets me.

jenny2 Rookie
jenny2
Posted
  • Author

i had a endoscope today and the doctor told me that everything looked ok. this is very weird since the endoscope and biopsy in 2004 was postive for celiac. i dont understand this really, i have been eating gluten for 7 years and test was fine? does that mean i am not celiac or do i need to wait on biopsy results for the final answer to find out if i am celiac or not??

mushroom Proficient
mushroom
Posted

i had a endoscope today and the doctor told me that everything looked ok. this is very weird since the endoscope and biopsy in 2004 was postive for celiac. i dont understand this really, i have been eating gluten for 7 years and test was fine? does that mean i am not celiac or do i need to wait on biopsy results for the final answer to find out if i am celiac or not??

The reason they look at the biopsy samples under the microscope is because the damage is often microscopic and cannot not be seen by simple visual examination. I would wait for the results from the pathologist.

Roda Rising Star
Roda
Posted

Yeah, I was told my small bowel looked pretty good visually, with a little inflammation. Biopsy was POSITIVE!

jenny2 Rookie
jenny2
Posted
  • Author

i will just have to wait on the biopsy results to find out for sure. this is so weird and i dont understand why if the biopsy results in 2004 were positive and i have continued to eat gluten for 7 years how there can be no damage seen? if the biopsy results are negative, i guess then i am gonna assume i dont have celiac.

ravenwoodglass Mentor
ravenwoodglass
Posted

i will just have to wait on the biopsy results to find out for sure. this is so weird and i dont understand why if the biopsy results in 2004 were positive and i have continued to eat gluten for 7 years how there can be no damage seen? if the biopsy results are negative, i guess then i am gonna assume i dont have celiac.

If your not already now is the time to start the diet strictly. You don't have to wait for the test results. If your having gluten issues having those resolve are the best proof of whether you need the diet or not as the tests can have a lot of false negatives.

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    • knitty kitty
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