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Any Good Docs At University Of Chicago Celiac Center?

Newbee

By Newbee
in Doctors

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Newbee Contributor
Newbee
Posted

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

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Lisa Mentor
Lisa
Posted

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

Newbee Contributor
Newbee
Posted
  • Author

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).

kareng Grand Master
kareng
Posted

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.

Newbee Contributor
Newbee
Posted
  • Author

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.

October3 Explorer
October3
Posted

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.

Newbee Contributor
Newbee
Posted
  • Author

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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Newbee Contributor
Newbee
Posted
  • Author

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!

Lisa Mentor
Lisa
Posted

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. ;)

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October3 Explorer
October3
Posted

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.

Mandy's Mom Newbie
Mandy's Mom
Posted

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

kam43 Newbie
kam43
Posted

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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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
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    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

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      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

      By catnapt · Posted

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