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Any Good Docs At University Of Chicago Celiac Center?


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11 replies to this topic

#1 Newbee

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Posted 17 July 2012 - 05:30 PM

Tomorrow is my 1 year anniversary being gluten free. I was diagnosed with celiac with quite a bit of damage to my system (Marsh stage 3B). I donít have D anymore but I often donít have formed stools either. My GI doc said thereís not much else he can do for me. It was suggested perhaps I should try going to the University of Chicagoís celiac center. Iím curious if anyone can recommend a doctor there that has helped them with this type of issue. Also as this will be a 2 Ĺ hour drive for me Iím interested in getting as much done in an appointment as possible so I donít continually have to go back for tests and results. I would be interested to know if the doctor was willing to give test results over the phone or do other things to help limit the number of appointments. Also any docs you think are good at diagnosing other issues (vitamin deficiencies, thyroid issues, etc.) or trying alternate diets like specific carbohydrate diet or other adjustments would be great to hear. Thanks so much!!
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#2 Lisa

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Posted 17 July 2012 - 05:53 PM

Tomorrow is my 1 year anniversary being gluten free. I was diagnosed with celiac with quite a bit of damage to my system (Marsh stage 3B). I donít have D anymore but I often donít have formed stools either. My GI doc said thereís not much else he can do for me. It was suggested perhaps I should try going to the University of Chicagoís celiac center. Iím curious if anyone can recommend a doctor there that has helped them with this type of issue. Also as this will be a 2 Ĺ hour drive for me Iím interested in getting as much done in an appointment as possible so I donít continually have to go back for tests and results. I would be interested to know if the doctor was willing to give test results over the phone or do other things to help limit the number of appointments. Also any docs you think are good at diagnosing other issues (vitamin deficiencies, thyroid issues, etc.) or trying alternate diets like specific carbohydrate diet or other adjustments would be great to hear. Thanks so much!!


Wow... lots of question.

Being gluten free have you kept a food journal? For many of us, it had taken years to recover from the damage due to gluten. Improvement is not something to complain about, although it takes time. :rolleyes:

Everyone is different, even their stools, but it does not mean there is an issue What is normal for you, is normal.

And your primary care doctors can test for deficiencies. thyroid, etc. And I would suggest relaxing. Stress can create havoc in your body. Continue with your gluten free, slow and steady and accurate. B)
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Lisa

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#3 Newbee

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Posted 17 July 2012 - 06:04 PM

Thanks for your response Lisa. Sorry, I'm very frustrated about this this week. Perhaps my GI doc is giving me bad info then. He was telling me after 6 months I should have good stools and that this was indicating perhaps I had the refractory celiac. That freaked me out. I've been doing the specific carbohydrate diet the last couple of months with some success. The beginning of the diet is very restrictive so I don't need a food journal as I pretty much eat the same thing every day. That diet contains a lot of meat/animal products so I'm concerned it will cause other problems for me. And when I have good stools doing that I diet I think it may be because of the huge amount of hard cheeses I eat every day. I'm afraid this may end up causing other health problems (heart disase/stroke). I haven't had a lot of success getting my doctor's to test me for other issues, and when I do I find out they did it wrong (didn't include all the tests for B12 or thyroid).
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#4 kareng

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Posted 17 July 2012 - 06:09 PM

Maybe eliminate dairy products and see if you get better? Did he re- test your anti- bodies? That could give you an idea if you are on the right track.
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#5 Newbee

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Posted 18 July 2012 - 04:12 AM

Per SCD I have eliminated dairy except for homemade yogurt and hard cheeses. I have had antibodies retested. They are down significantly but still testing positive. Doc said he didn't think it was because of getting gluten into my system.
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#6 October3

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Posted 18 July 2012 - 04:46 AM

I drive 5 hrs to take my son to the University of Chicago Celiac Disease Center. For us it is well worth the drive. The GI we were seeing had basically given up on diagnosing my son and had said essentially just wait for things to get a lot worse and then we'll figure it out. We see Dr. Guandalini there. He took a long time with us, ran a lot of tests, sends me lab reqs so I can follow up with lab work without going back to see him. He did say he wants to see us once a year which is completely doable. Also he did run a lot of tests looking at nutritional deficits and thyroid issues, etc. And they have a nutritionist on staff who we met with (had to make another trip for that unfortunately but you may be able to schedule them together if you wanted to).

As for other diets etc, we haven't gotten into any of that with him so I don't know how far his expertise goes. I also think a lot of the dietary and other food intolerance things are not supported well by research yet and so MD's maybe aren't the best to help with some of those things no matter how good they are. We have had success working with a Naturopath in addition to MD's with my and my kids multiple food intolerances. I know people who have had fantastic success with the SCD but I don't think I've ever seen a doc who would recommend it because it is so restrictive.

The one complaint I would say I have about the clinic is that it can be difficult to get answers from the doc because he isn't in the office often and is a busy guy. The clinic staff are wonderful and as helpful as they can be but if you have a question for the doc outside of an appointment be prepared to wait a bit to get the answer.
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#7 Newbee

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Posted 18 July 2012 - 03:50 PM

I drive 5 hrs to take my son to the University of Chicago Celiac Disease Center. For us it is well worth the drive. The GI we were seeing had basically given up on diagnosing my son and had said essentially just wait for things to get a lot worse and then we'll figure it out. We see Dr. Guandalini there. He took a long time with us, ran a lot of tests, sends me lab reqs so I can follow up with lab work without going back to see him. He did say he wants to see us once a year which is completely doable. Also he did run a lot of tests looking at nutritional deficits and thyroid issues, etc. And they have a nutritionist on staff who we met with (had to make another trip for that unfortunately but you may be able to schedule them together if you wanted to).

As for other diets etc, we haven't gotten into any of that with him so I don't know how far his expertise goes. I also think a lot of the dietary and other food intolerance things are not supported well by research yet and so MD's maybe aren't the best to help with some of those things no matter how good they are. We have had success working with a Naturopath in addition to MD's with my and my kids multiple food intolerances. I know people who have had fantastic success with the SCD but I don't think I've ever seen a doc who would recommend it because it is so restrictive.

The one complaint I would say I have about the clinic is that it can be difficult to get answers from the doc because he isn't in the office often and is a busy guy. The clinic staff are wonderful and as helpful as they can be but if you have a question for the doc outside of an appointment be prepared to wait a bit to get the answer.


Thank you so much for your response! Great info! Did the doctor determine what vitamin deficiencies/tests to run or was that recommended by the dietician? And what exactly did the dietician do? I've never been to a dietician so not sure what all they cover. Thanks!
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#8 Newbee

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Posted 19 July 2012 - 03:54 PM

Any other recommendations (or people to stay away from) that have went to University of Chicago for treatment? I was hoping for a few more responses. Thanks!
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#9 Lisa

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Posted 19 July 2012 - 04:35 PM

Any other recommendations (or people to stay away from) that have went to University of Chicago for treatment? I was hoping for a few more responses. Thanks!

Not everyone is so fortunate to have such a great facility nearby, with the most knowledgeable experts in the field of Celiac Disease. ;)

http://www.uchicagok...guandalini.html
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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#10 October3

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Posted 19 July 2012 - 07:44 PM

Thank you so much for your response! Great info! Did the doctor determine what vitamin deficiencies/tests to run or was that recommended by the dietician? And what exactly did the dietician do? I've never been to a dietician so not sure what all they cover. Thanks!


The doctor decided what to test for. We didn't see the dietician until later after it was determined we should go back on a gluten-free diet. She mostly answered all the questions about management of the diet itself and how to make sure you are getting the right nutrients, etc. She also worked with us on foods to promote iron absorption since that was our main issue.
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#11 Mandy's Mom

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Posted 23 July 2012 - 01:20 PM

Tomorrow is my 1 year anniversary being gluten free. I was diagnosed with celiac with quite a bit of damage to my system (Marsh stage 3B). I donít have D anymore but I often donít have formed stools either. My GI doc said thereís not much else he can do for me. It was suggested perhaps I should try going to the University of Chicagoís celiac center. Iím curious if anyone can recommend a doctor there that has helped them with this type of issue. Also as this will be a 2 Ĺ hour drive for me Iím interested in getting as much done in an appointment as possible so I donít continually have to go back for tests and results. I would be interested to know if the doctor was willing to give test results over the phone or do other things to help limit the number of appointments. Also any docs you think are good at diagnosing other issues (vitamin deficiencies, thyroid issues, etc.) or trying alternate diets like specific carbohydrate diet or other adjustments would be great to hear. Thanks so much!!



My daughter has seen Dr Guandalini at Univ of Chicago for 8 years since being diagnosed by him. She is now 10 years old. Our family can't say enough positive things about him and the hospital. Upon initial diagnosis of celiac disease in my daughter, Dr. Guandalini and the nutritionist met with our family. We didn't have to make a separate appt to see the nutritionist. She just visited with us in conjunction to our visits with the dr. Since celiac disease is genetic they did test us as well. My husband tested positive for the gene so underwent the biopsy since he is deficient in IgA. His biopsy was performed by Dr Semrad also from Univ of Chicago. We live about an hour away from Chicago in Indiana. Dr. Guandalini and his nurse Kitty have always been very kind and have called and spoken to us by phone with results if needed. They also have sent us lab forms so we can have the bloodwork done in our hometown and then faxed to Chicago. So that saves us a trip. We only have to take our daughter into Chicago once a year. Also, Dr. Guandalini has promptly answered any emails we have sent him, even in the last few months.
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#12 kam43

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Posted 23 July 2012 - 01:50 PM

Hi! I started seeing Dr. Sonia Kupfer shortly after my diagnosis as I was disappointed with my diagnosing GI, too. She has a very warm demeanor and was willing to communicate via phone and email. She was also on top of sharing information with my MD. Unfortunately, I have since moved too far to continue going there for treatment but in the visits I did have, she took her time and was incredibly thorough. I will say that scheduling procedures, depending on what you need, can be a little tricky as some things are coordinated with other departments and so you may have to make multiple trips but probably worth it if you get results.

I would say, if you are concerned that you have issues beyond Celiac, like thyroid, that you might want to consider an MD that works in an Integrative Medicine practice. I was lucky to find an amazing doc in Chicago and he was actually the one to even think to test me for Celiac after 7 years of suffering and wrong diagnoses. In my experience, an integrative doc goes beyond what a GI generally would to consider the big picture.

That said, I would highly recommend Dr. Kupfer. The entire center really is an amazing thing and you're lucky to be able to take advantage of it, drive and all.

If you'd like the name of the MD I mentioned, feel free to PM me and I will give you his info.
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