Follow Up With Gi Doc

[ohsotired]

I had a follow up with my GI doc today............

We talked about test results, and he says everthing is normal. I asked about the high levels of Hemoglobin, Hematocrit and MCV from my first round of blood tests, and he said that all that means is that my red blood cells are larger than normal, but that it's probably not anything to worry about.

He talked about my stool tests, and those are normal. (I have a copy, and that's what it says.)

He talked about my colonoscopy, and how he didn't see anything out of the ordinary, except for the internal hemmhroids, and that the biopsies showed no evidence of anything. (I don't seem to have a copy of the biopsy report, even though I requested it.)

He asks me if I'm still having 'issues' or if I'm feeling better.

Uhm, doc? I told ya this has been going on for over 8 years, and I don't think it's going to magically go away, and why else would I be sitting here in your office?

I really wish I'd actually said this to him, instead of just mumbling "yeah, everything's the same."

So I ask about the celiac test and told him that everything I've read says there are a total of five tests that should be run. He tells me that the Ttg IgA is the most sensitive and that the results can be trusted.

I proceed to tell him about how I've done some additional family research, and how my cousin has similar issues (as do many other family members) and that his doctor recently put him on a gluten free diet.

He says "Well we can run the additional tests but if they come back negative, then that will be in your chart." WHAT? I push a little more and he agrees to run the rest of the tests, and he even mentioned something about gene testing, but that he'd need to do some research to find out what was involved with that, because he's never dealt with that before. Again.....

(We're also running blood work for B12 deficiency.)

So he basically says that we wait for this blood work, and if it's negative we 'monitor and wait' and treat as though it's IBS, which I'm sure means a pill or twelve.

So then the MA comes in to do the blood draw, and she says "I'm not sure how much blood we need - we've NEVER done this set of tests before. So I guess I'll just take two vials......"

So, this tells me something. He's willing to listen, and appease me to a certain extent, but that he has never treated or diagnosed a Celiac patient.

So what do I do now? Wait for the blood work, get copies of the results, and then find a new doc, I guess. He's not mentioned an endoscopy, and even if my blood work comes back positive, I doubt I'll let him do one. I don't know whether to try a naturopath next, or to try another visit back to my PCP, or to find another GI. I guess I just sit and wait to see what the blood work says.

I feel like I'm back pedaling here.

[leadmeastray88]

I hear 'ya! I had the same thing happen to me today.

In June I had the "Celiac Panel" done, not knowing what that was or what tests they were, I didn't know then what I know now (Thanks to this place). When I went back all they said was 'its negative'

So I went today to fill a prescription, and while i was there I asked for a copy of my 'Celiac Panel' results to see what they tested.

Same as you, he only tested the ttG. He actually laughed at me when I asked for a copy.

I am very angry now, because now i don't know where I stand, and its too late because I"ve already started eating a gluten free diet and I can't go back now. If I had known they didn't test everything I would never have went gluten free before getting the testing.

People - learn from our mistakes! Go in armed with information and a LIST of the tests!:

Total IgA Serum

ttG - IgA

EMA - IgA

AGA - IgA

AGA - IgG

The doctors work for you - get what you want out of them or find someone who will listen.

[lizard00]

Find a new doc!!! Did your PCP recommend this one? If not, and you like your PCP, ask them for a referral. Or do you know any nurses? They're always great to tell you who to see or not see.

I had a similar experience with the PA at my GP's office. CLUELESS!!!

I really love my GP, just not her PA. So, now, I insist that I see the GP instead. The GP sent me to the GI I currently have and I couldn't be happier with him.

[ohsotired]

leadmeastray - Precisely the reason I haven't just started the gluten-free diet yet, in case they screwed up and didn't do all the tests. I'm sorry you went through this too - I hope the diet is working for you.

lizard00 - Uhm........sort of (PCP recommending the GI)..........my PCP was on vacation, so I saw another doc in the office, and THAT doc referred me to this GI. Although, I may be looking for a new PCP too, as the last time I saw her she sort of 'pooh poohed' my claim of fatigue and told me to get more sleep.