Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Any Good Docs At University Of Chicago Celiac Center?
0

12 posts in this topic

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 don

0

Share this post


Link to post
Share on other sites


Ads by Google:

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 don

1

Share this post


Link to post
Share on other sites

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).

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.uchicagokidshospital.org/physicians/stefano-guandalini.html

1

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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 don

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,123
    • Total Posts
      919,495
  • Topics

  • Posts

    • I had a negative biopsy and was still diagnosed with Celiac. My GI ran a bunch of tests looking for the cause of my 15+ years of diarrhea and the only thing that came back positive was the entire Celiac panel. All very high. So he performed an endoscopy with biopsy. The biopsy was negative. So he ordered a genetic test. When that came back as "high risk" he decided a trial gluten free diet was in order. After 8 weeks my symptoms resolved and my antibodies were back to normal. Since then, follow up testing had shown I have osteoporosis. I am a 40 year old male.  So yes, you can definitely still have it and have significant damage with a negative biopsy. 
    • Annual celiac antibody testing is, in my opinion (and based on what celiac researchers have published), is critical, especially for a 12 year old.  Life is going to get harder for her.  Peer pressure is huge (I have a 15 year old daughter), and remaining diet compliant can be tough.   In Dr. Fasano's, Gluten Freedom, he discusses a young patient who became ill in high school after being gluten free for years.  His parents were perplexed.  Dr. Fasano took the young man aside and he confessed that while on a date, he didn't want to bring up his celiac disease.  So, he ate pizza.  He was too embarrassed to tell his parents.   My daughter does not have celiac disease.  She was first tested two years ago.  Since she is symptom free, is not anemic and her other lab work is fine, we'll wait to test her in another year.  It all depends on the patient, but every few years, testing is recommended for all undiagnosed first-degree relatives.   It certainly sounds like your younger children should be screened.   I wish you both well!      
    • Perhaps you should consider asking for a GI referral.  You might just skip the blood tests and go directly to an endoscopy/biopsies while you are still consuming gluten.  It is the "gold" standard for a celiac diagnosis anyway!   Here's the deal with going gluten free.  You can do it.  It costs nothing, but you must give it six months or longer.  You'd need to think like a celiac, but it can be done!  I'll tell you my tale.  My hubby went gluten-free 15 years ago per the very poor advice of his GP/PCP and my allergist.  After a year of mistakes and learning, he got well.  It worked!  Thirteen years later, I was formally diagnosed.  (It was a shock as I was only anemic at the time.)  Hubby would be the first to say that I have had way more support from family, friends and medical.  I must say, it's nice to see those lab results.  It really helped me adhere to the diet in the beginning too.   So, you know your medical situation.  You must do what's best for you!   I hope you feel better soon!  
    • I'm sure going to have a long talk with my doctor.  Then I'll find a new one that will support me and make sure that my daughter and I both have the proper testing done yearly.  
    • also:  glutendude - i don't get it.  shouldn't it be glutenfreedude?  lolz i eat out few and far between.  most of the times i've been glutened it's been eating out.  this weekend i'm getting my bacon cheeseburger on at red robin  i always get my 'good' waitress - lucky, i guess, paula takes good care of me   and i will eat at bonefish but they have a limited 'safe' menu.  look for places that have the 'GiG'  training they know their stuff.  mellow mushroom, melting pot, california pizza kitchen, pf changs are all supposed to be trained that way.  they know to avoid cc and change their gloves, etc.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,161
    • Most Online
      1,763

    Newest Member
    Jashan8534
    Joined