Should I Trust My Doctor?

[MelindaLee]

I need some feedback from all of you informed, experience people. I was disgnosed about 3 months ago. I had been having pain I believed to be my gallbladder. I had an ultrasound and then HIDA scan, but both were inconclusive for my gallbladder. So, I was sent to the GI Dr. He did an endoscopy and colonscopy, including biopsies to rule out anything going on (cancer, etc) Dr. thought everything looked good, but at the follow up appointment he indicated my biopsy indicated celiac and that he wanted to run blood tests. So, they ran the HCQ2 and 8. I was positive for the 8 (I think), but not both. So, he advised to go gluten free. I feel 100% better. I followed up with Dr. yesterday. I asked more questions about what was actually found, as I have read so much more information here than I ever knew before, I knew what to ask...or so I thought. I felt a little uncomfortable when I asked about the biopsy, because my Dr. said it didn't show damage but "i ndicate" celiac. He maintained that if the diet is helping it is celiac and seemed to feel confident in that diagnosis. I am perfectly happy continuing to be gluten-free, but I was just wondering if his comment is something to be concerned about. What might he have meant "indicated"? Am I just lucky and caught it early? Any feedback is appreciated.

[mushroom]

I need some feedback from all of you informed, experience people. I was disgnosed about 3 months ago. I had been having pain I believed to be my gallbladder. I had an ultrasound and then HIDA scan, but both were inconclusive for my gallbladder. So, I was sent to the GI Dr. He did an endoscopy and colonscopy, including biopsies to rule out anything going on (cancer, etc) Dr. thought everything looked good, but at the follow up appointment he indicated my biopsy indicated celiac and that he wanted to run blood tests. So, they ran the HCQ2 and 8. I was positive for the 8 (I think), but not both. So, he advised to go gluten free. I feel 100% better. I followed up with Dr. yesterday. I asked more questions about what was actually found, as I have read so much more information here than I ever knew before, I knew what to ask...or so I thought. I felt a little uncomfortable when I asked about the biopsy, because my Dr. said it didn't show damage but "i ndicate" celiac. He maintained that if the diet is helping it is celiac and seemed to feel confident in that diagnosis. I am perfectly happy continuing to be gluten-free, but I was just wondering if his comment is something to be concerned about. What might he have meant "indicated"? Am I just lucky and caught it early? Any feedback is appreciated.

Yes, I think you are one of the lucky ones who was diagnosed early. You probably had inflammation and perhaps a little blunting of the villi, or maybe just inflammation. Inflammation is often the precursor to further damage like blunting and/or atrophy of the villi. But the inflammation, the symptoms, your genetic predisposition (DQ8), and positive response to the diet would "indicate" that you have celiac disease. You don't mention that they did any antibody testing (did they?). But if they did and it was positive that would also "indicate" celiac disease. Don't be disappointed with the use of the word "indicate". After all, high blood pressure readings indicate that you have hypertension, for example; it is a term that is often used. You can be pretty sure from where I am standing that the diagnosis is correct and you should definitely avoid gluten. You can get a copy of the biopsy report from the doctor (and you probably should for your records - I always do) so that you can see exactly what it says for yourself. Oftentimes diagnosticians like to use words with a little bit of weasel room in case they should be proven wrong, a cya kind of thing

[MelindaLee]

Yes, I think you are one of the lucky ones who was diagnosed early. You probably had inflammation and perhaps a little blunting of the villi, or maybe just inflammation. Inflammation is often the precursor to further damage like blunting and/or atrophy of the villi. But the inflammation, the symptoms, your genetic predisposition (DQ8), and positive response to the diet would "indicate" that you have celiac disease. You don't mention that they did any antibody testing (did they?). But if they did and it was positive that would also "indicate" celiac disease. Don't be disappointed with the use of the word "indicate". After all, high blood pressure readings indicate that you have hypertension, for example; it is a term that is often used. You can be pretty sure from where I am standing that the diagnosis is correct and you should definitely avoid gluten. You can get a copy of the biopsy report from the doctor (and you probably should for your records - I always do) so that you can see exactly what it says for yourself. Oftentimes diagnosticians like to use words with a little bit of weasel room in case they should be proven wrong, a cya kind of thing

Thanks for the feedback. They didn't do any antibody testing, just the genetic testing. For the most part I am okay with the responce...but, he was kind odd...claiming to be feeling like an expert in celiac, so I guess I was a little nervous. (not in a "I've had training and I am an expert" kind of way, but, in a "see I guessed right again" kind of way.) The information seemed consistent with what I have read...but I just wasn't sure if I was missing something. I appreciate all of the FABULOUS information and advice shared here! (And I am truly thanking my lucky stars I didn't have damage and years of pain that some other have had!)

[cassP]

i agree, and believe you are Celiac... i agree that what he saw was probably mild villi blunting but not bad damage.

welcome

[Emilushka]

My biopsies didn't even indicate Celiac, but I'm pretty sure I had some serious stuff going on somewhere that didn't get biopsied because I was starting to get nutritionally-related problems. So. The biopsies are far from perfect, and I totally hear you on the feeling-worse-than-the-biopsies-showed thing!