Celiac Disease Center - U Of Chicago

[October3]

I have an appt to take my son to the CDC in Chicago next week. We're traveling in from out of town that morning and I'm making plans to meet up with friends and trying to get a sense of the timeline. FWIW, this is a second opinion type appt. My son has already had an extensive work up which has been pretty inconclusive and I'm just wanting the doc in Chicago to weigh in on whether or not we should go gluten-free at this point, or whether there is anything else that needs to be tested. I'm wondering if they recommend a gluten-free diet do they have you meet with a nutritionist or do any other eduction, or whether I should expect 15 min in the room with the doc and that's it. Can anyone share their experience?

Thanks in advance,

[Luddie]

I have an appt to take my son to the CDC in Chicago next week. We're traveling in from out of town that morning and I'm making plans to meet up with friends and trying to get a sense of the timeline. FWIW, this is a second opinion type appt. My son has already had an extensive work up which has been pretty inconclusive and I'm just wanting the doc in Chicago to weigh in on whether or not we should go gluten-free at this point, or whether there is anything else that needs to be tested. I'm wondering if they recommend a gluten-free diet do they have you meet with a nutritionist or do any other eduction, or whether I should expect 15 min in the room with the doc and that's it. Can anyone share their experience?

Thanks in advance,

My doc has a nutritionist on staff with him and also does monthly workshops for his patients with her to help us learn about the "new way of eating" that we celiacs must do!

This doc is now my primary care physician, too, as the other one I have been seeing for years never, ever thought about my having celiac disease. I guess in kindness I must say I didn't present a lot of "typical" symptoms (except thyroid disease, which I now understand can be a result of celiac disease). So, my experience has been pretty good with my doc (who also answers emails and urgent cell phone calls promptly). His appointments are supposed to be 15 minutes, but if I ask for an abnormal blood chemistry appointment, he can stretch it to 30. Maybe you'll find that, too. It's not the doctor, it's the rules of the particular practice he's in.

Good luck.

Luddie

[October3]

My doc has a nutritionist on staff with him and also does monthly workshops for his patients with her to help us learn about the "new way of eating" that we celiacs must do!

This doc is now my primary care physician, too, as the other one I have been seeing for years never, ever thought about my having celiac disease. I guess in kindness I must say I didn't present a lot of "typical" symptoms (except thyroid disease, which I now understand can be a result of celiac disease). So, my experience has been pretty good with my doc (who also answers emails and urgent cell phone calls promptly). His appointments are supposed to be 15 minutes, but if I ask for an abnormal blood chemistry appointment, he can stretch it to 30. Maybe you'll find that, too. It's not the doctor, it's the rules of the particular practice he's in.

Good luck.

Luddie

Thanks Luddie. I'm assuming your doc is at the U of Chicago? I have read about their workshops / support groups but since we live 5 hrs away I'm thinking that won't be a big help to us. I was wondering if they do any other education actually in the clinic, such as a meeting with the nutritionist during your visit, or if you have to make a separate appointment with the nutritionist. I had read that the Celiac Disease Center in Maryland has everyone go to the nutritionist when first diagnosed so I didn't know if it was standard practice at a celiac disease-specific clinic like this or not. Its good to hear your doc is so easy to reach. That is one of my main complaints about the doc we have been working with - impossible to ask questions between visits. I was impressed that Dr. Guandalini himself responded (and very thoroughly) to a question I sent to the Celiac Disease Hotline email.

[kareng]

Thanks Luddie. I'm assuming your doc is at the U of Chicago? I have read about their workshops / support groups but since we live 5 hrs away I'm thinking that won't be a big help to us. I was wondering if they do any other education actually in the clinic, such as a meeting with the nutritionist during your visit, or if you have to make a separate appointment with the nutritionist. I had read that the Celiac Disease Center in Maryland has everyone go to the nutritionist when first diagnosed so I didn't know if it was standard practice at a celiac disease-specific clinic like this or not. Its good to hear your doc is so easy to reach. That is one of my main complaints about the doc we have been working with - impossible to ask questions between visits. I was impressed that Dr. Guandalini himself responded (and very thoroughly) to a question I sent to the Celiac Disease Hotline email.

Why don't you ask? Either thru the email or the appointment line. They make appointments but might not realize you can't come back next week for something else. Make sure they have any tests you have already had. Is there any blood work they want done first?

[Luddie]

Thanks Luddie. I'm assuming your doc is at the U of Chicago? I have read about their workshops / support groups but since we live 5 hrs away I'm thinking that won't be a big help to us. I was wondering if they do any other education actually in the clinic, such as a meeting with the nutritionist during your visit, or if you have to make a separate appointment with the nutritionist. I had read that the Celiac Disease Center in Maryland has everyone go to the nutritionist when first diagnosed so I didn't know if it was standard practice at a celiac disease-specific clinic like this or not. Its good to hear your doc is so easy to reach. That is one of my main complaints about the doc we have been working with - impossible to ask questions between visits. I was impressed that Dr. Guandalini himself responded (and very thoroughly) to a question I sent to the Celiac Disease Hotline email.

Actually, no, I'm not in Chicago. I'm in Ohio, and my MD is here, too, associated with the University in an Alternative Medicine practice. So, no direct "translation" of care for you there in Chicago. But keep asking questions, as practices do add things from time to time. It must be really frustrating to be dealing with this for a child. It's hard enough to deal with my own condition! Hope you get some good answers and advice.

Luddie

[lil'chefy]

Actually, no, I'm not in Chicago. I'm in Ohio, and my MD is here, too, associated with the University in an Alternative Medicine practice. So, no direct "translation" of care for you there in Chicago. But keep asking questions, as practices do add things from time to time. It must be really frustrating to be dealing with this for a child. It's hard enough to deal with my own condition! Hope you get some good answers and advice.

Luddie

Hey Luddie, where do you live at in ohio? I need a good doc, who is knowledgable about DH/ celiac!

Erin

[Luddie]

Hey Luddie, where do you live at in ohio? I need a good doc, who is knowledgable about DH/ celiac!

Erin

Hi Erin,

I live in the Columbus, Ohio area. I'm not sure about the protocol on this forum for giving you information (i.e., my name or doctor's name). Anyone know if it's okay or how to do that privately? Wouldn't want to do anything that's not squeeky clean.

Thanks!

Luddie

[kareng]

Hi Erin,

I live in the Columbus, Ohio area. I'm not sure about the protocol on this forum for giving you information (i.e., my name or doctor's name). Anyone know if it's okay or how to do that privately? Wouldn't want to do anything that's not squeeky clean.

Thanks!

Luddie

If you have only good things to say about someone, like a doc, it's OK. You could also PM ( private message) the person. Click on thier picture, then you go to thier profile, then under thier picture there is a " send me a message". .

Doing this from memory, but you can figure it out.

I should add that if you are the doc or work for the doc, do it privately or not at all.

[lil'chefy]

If you have only good things to say about someone, like a doc, it's OK. You could also PM ( private message) the person. Click on thier picture, then you go to thier profile, then under thier picture there is a " send me a message". .

Doing this from memory, but you can figure it out.

I should add that if you are the doc or work for the doc, do it privately or not at all.

Not asking for you to do anything out of line....I live in Dayton OH, and am really having dr. issues. If you r not comfortable, it's cool.

[October3]

I thought I would update, just in case someone was doing a search and ran across this thread. I couldn't have been more pleased with the experience at U of Chicago. Every single staff person we encountered, from the security people giving us directions to the doctor himself, was super friendly and helpful. The doctor said several times that I should take as much time as I wanted with him and be sure to ask all my questions. The appt was not rushed at all. He did a thorough exam and also reviewed the records I brought and took a lot of time making notes and asking questions about my son's history. He didn't brush anything off. Very good experience altogether. We don't have any answers yet, but I was pleased that they are moving forward with asking questions because we had kind of hit a wall with the old GI where no further testing was being pursed to explain my son's symptoms. They are reviewing the slides from my son's biopsy to see if anything was missed, which is so nice that they will do that rather than another scope. It was most definitely worth the trouble and cost to travel in order to go there.