Report on Meeting with Gastro Doc

[Celie]

My meeting with the Gastro doc went well today. She was well prepared. I did not have to tell her anything. She knew my entire history and the circumstances of my most recent relapse. During that time I had talked only to her nurse, but she knew everything that had happened.

We talked about my condition. She has quite a few patients with MC, but she says I have the worst case she has seen in her practice. She wants to biopsy my small intestine to check for atrophy and to check for Celiac disease. Even though my blood test for celiac was negative, as was the genetic test, she said that gluten intolerance is still a very real possibility. She thinks that checking the small intestine is the best way to be sure.

I asked about Dr. Fine and she said one of her patients had consulted him and he had helped with the complicated issue. She was open to his ideas.

She said that she had not had a good response to diet modulation in her practice. She said that for every one patient that responded to diet, 10 did not. But, she said that compliance might explain that because the diets are hard to follow and not all patients are successful. Interestingly she said that while there is no proof diets work, there is no proof that they don't either. (Seems like I read that on this board this week). If I want to try diet, she is willing to help.

She wants to do the biopsy before I try the gluten free diet. She says that I need to be eating gluten for that test. So, I won't start just yet.

Like Tex suggested, she thinks that since I am doing well on 6mg of Entocort, that I should not increase the dose. She does not believe that it heals the colon, but that it just helps the body recover from the wasting effects of the LC.

She has a plan to move off the Entocort, but is willing to let me finish the semester before we begin. I can take a leave for next semester which will give us some time to experiment.

She patiently answered all the questions that you all helped me put together. I am relived to have found a doctor who is knowledgeable and open to any ideas that might help.

Thank you for all your good questions and suggestions for the meeting. Because of this board, I had a very productive meeting.

Celie

[JLH]

YEA!!!!! I need a somersault icon, that's how happy I am for you.

[Gabes-Apg]

I am with joan
doing the happy dance in my chair for you!



congratulations on having a 'good doctor' that is great for you and well done for your preparation and research and that you did have a productive meeting.

[Robbie]

I'm happy for you, too!

[tex]

Interestingly she said that while there is no proof diets work, there is no proof that they don't either. (Seems like I read that on this board this week). If I want to try diet, she is willing to help.

I think I'm the one who posted that, so naturally, I believe that you have found a first class GI doc.

Obviously, she's open-minded, and that's what it takes to deal effectively with this disease. Everything that you posted about her, indicates that she is a class act, she's dedicated, and she's truly "on the ball". Her suggestion to check for small intestinal damage, even though you had negative celiac serology, is right on target. Congratulations on finding a one-in-a-million GI doc! That made my day, because GI specialists with her qualifications are almost impossible to find.

Tex

[wonderwoman]

Celie, you sure lucked out with this GI doctor. Too bad they aren't all like that. Hope you have your tests soon so you get the results.

[natythingycolbery]

Good luck with it all!

[ant]

Wow.... that is great you have a good GI doc!! (I wish I had one - I will post elsewhere about that).

All best, Ant

[JLH]

Holy cow, I meant cartwheel!

[Celie]

I feel very lucky. I had heard good things about this doctor and she proved herself to be the kind of doctor I need right now. She seemed pleased that I had been reading about the condition and possible treatments. She was not threatened my my (your) questions. She told me to read about Imuran, in case we need it. (I hope we don't.)

Again, I want to express my appreciation for those on this board. We, as patients, must be proactive if we are to get adequate care. Without your help, I would have been less prepared to work with the doctor on a plan for my care.

Celie

[Ginny]

Celie, that was great news. Keep us posted with your visits to the GI and how you are doing. I have not been as lucky as you and I had already been to two GI's in less than a year. Diet, I feel, is essential to those of us that have more intolerances and severity. Ginny

[barbaranoela]

Celie~~~~~~I am with everybody----congrats on finding a doctor that listens--understands and is ready to help U get on that wellness road--

I am very impressed and do keep us posted~~~


Barbara

[Gloria]

She has quite a few patients with MC, but she says I have the worst case she has seen in her practice.

I'm curious - what was it that made her make that statement? Was it the number of your lymphocytes or your symptoms?

Joan,

I don't think it matters if you meant cartwheels instead of summersaults. I have a feeling that we can't do either at our age... I was able to keep a hula-hoop going in front of my granddaughter, though. I was quite proud that I could still do it.

Gloria

[grannyh]

Sounds like you have found a great doc! That is wonderful news!
grannyh

[hoosier1]

Celie,

A progressive, compassionate, and open-minded GI doc? Wow. They do exist! Good for your for finding one. Don't ever let go of that one.

My GI doc (with no bedside manner) literally dismissed me as his patient because he didn't know what to do for my, get this, IBS. So he essentially fired me as his patient.

So back to my colorectal surgeon, whom I love. I told Dr. Parikh, in despair, "you have to help me." He said, looking up from my charts and the abominations that my previous GI doc had performed on me, "I will do everything in my power and I will not release you from my care". That comment alone made me feel 100 lbs lighter (and I'm only 139 lbs right now... gotta get some weight back on).

And he is the man who took ten biopsies from me to diagnose my LC. So though he is not a GI doc per se, he is my GI doc of choice that sounds like a twin of Celie's. What a smart man. What a great listener. We all need docs like this.