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rez

Dr. Guandalini?

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I'm anxiously awaiting an appointment with Dr. Guandalini at the end of this month for my two children? His credentials are amazing and I'm excited to meet with him. Has anyone had any experience with him? I know he is a well known expert and I've got my hopes set high. :)

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My son has been seeing Dr. Guandalini for the last year. We really, really like him and feel so fortunate to have access to him and the U of C celiac center. He is very personable and relates well to my son (he's almost 6 years old). The nurses are very kind and caring, and the phlebotomists are really good. My dad and I went for the free celiac screening last fall; they tested over 300 people in one day. It was run very efficiently--we were in and out in 20 minutes. I hope this helps. By the way, we are in the western suburbs, and you?

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Woah... Free celiac screening?!?!?! What state was this in? Are they planning on doing it again?

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I'm so glad to hear about Dr. Guandalini. We actually are in the very Western suburb.....in fact three hours West. :) We live in Bettendorf, IA. We have been living a nightmare this past year trying to find a good, competent doctor. We have probably seen around 5 different doctors. It's a long story, but our local doctor ran the wrong blood test and told us Thomas was negative. He still wasn't getting better so we tried the gluten-free diet, thinking of course the Celiac Screen was negative. He got better, but still had some problems. We finally found a good family practice doctor an hour and a half away whom had Celiac himself. He is wonderful!! He ran the correct test and Thomas' tTG was positive, only slightly, but he had been on a gluten-free diet for 3 months. Now, we're on to the peds GI for the biopsy and we had to put Thomas back on gluten. He's 8. Yesterday was a really bad day for him and I just want to get all of this over with and put it behind us. Thomas' symptoms really started at birth, but things got really bad last February. Now, we're back to stomach aches and constant, multiple canker sores. We saw a peds GI in DesMoines Iowa last Monday and our appointment w/ Dr. Guandalini is the 31st of this month. My daughter, 10, and son both are seeing him. My daughter was just diagnosed with hypothyroid. The told us this is a condition that is linked w/ Celiac. We are just ready to get on with the final diagnosis, whether it be positive or negative, and move on. I will PM you. I would love to hear your story. Thanks for replying. Kandi

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Dr. Guandalini is amazing! He knows soo much about celiac, last time I was there he told me that there should be something to digest gluten in 3-5 years! I am very excited! Good luck with your son! I'm sure you will both will like him!

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Woah... Free celiac screening?!?!?! What state was this in? Are they planning on doing it again?

Chicago, Illinios yes they are planning on doing it again. I don't know when but they do every year, you can only get tested if you are likely to have. Such as, a family member with it, an other autoimmune disease, symptoms of celiac, etc.

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Chicago, Illinios yes they are planning on doing it again. I don't know when but they do every year, you can only get tested if you are likely to have. Such as, a family member with it, an other autoimmune disease, symptoms of celiac, etc.

Thanks so much for your response. Our appointment is the 31st and I'm so anxious to talk with him because he's such an expert. Sadly, I've been more up on the latest findings than our doctors here. I can't wait to hear all his perspectives on Celiac. Thanks again.

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After seeing a dirtbag gastro doctor in Geneva who strung me along for 4 months and clearly didn't know what he was doing, I WAS going to go and see Dr. Guandalini since he comes HIGHLY recommended. My only hesitation was that he specializes in pediatrics and while he will do a 2nd opinion for adults, I didn't know if I would be able to continue seeing him and I wanted a doc that I could continue to go to. My first choice was Dr. Mark DeMeo at the other university hospital in Chicago who also comes VERY highly recommended and is on the forefront of research but Dr. DeMeo is not on my insurance plan (United Healthcare) and Dr. Guandalini is. All along this past year I have been in frequent contact with a wonderful woman named Ruth with the Celiac Association and we discussed my going to visit Dr. Guandalini. Before I could make an appt with him tho, she got a great recommendation to another gastro doc familiar with Celiac (and willing to work with you!) in the western suburbs of Chicago and I went to him instead, because it would be easier for me to travel to see him, what with having to have potty stops along the way, lol. I highly recommend this doc if someone has difficulty making it to downtown Chicago. His name is Dr. Eli Ehrenpreis and he is in Arlington Heights, IL. He is in a practice with other docs titled "Adult Care Specialists" so I don't know if he would treat children or not, but for all of you adults who need someone, I highly recommend him. He knows what he's doing and has a great chairside manner and is open to all kinds of ideas. He is also interested in running studies etc and working with the Celiac Assocication. He can be reached at 847+253-6464 and is located at 1538 Arlington Heights Road in Arlington Heights, IL. I know that the discussion on this thread was about Dr. Guandalini and I am rather new to this posting forum, so I hope it was okay to include this info for those who might need another doc in the area. If anyone DOES go to see him, I'd be interested in knowing how it goes for him/her. Meanwhile, have a great week!..........Angel

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Sorry to hijack the thread, Rez, but I wanted to let Angel know that Dr. Steve Holland in Naperville is also highly recommended. He is active in the local celiac support group (which, by the way, meets the 3rd Thursday of the month at the Whole Foods in Wheaton) and is very responsive. His website has some helpful links for celiac patients. It's www.napervillegi.com I've not seen him, but I did send him a question via email. He responded the same day.

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No problem!!!!! I'm glad to assist all on this board in a positive way, any time, any day!!!! :):):):):)

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Angel, can you tell me more about Dr. Eli Ehrenpreis? My parents live in the Northern suburbs, and their doctor doesn't listen to them and writes prescriptions like he's giving out Hallowe'en candy ("here, have another one!"). My mom may very well have some kind of gluten issue, but would probably not consider it to be a possibility. Anyway, is the "Adult Care Specialist" practice one that deals only with celiac issues, or do they take any adult who has the appropriate insurance coverage?

Thanks so much. This thread is full of great info!

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Chicago, Illinios yes they are planning on doing it again. I don't know when but they do every year, you can only get tested if you are likely to have. Such as, a family member with it, an other autoimmune disease, symptoms of celiac, etc.

Maggie,

Will you post Dr. Guandalini's information; phone number and address? I would climb to the moon with raw bleeding fingers to get my 2 1/2 year old daughter to someone competent and trustworthy. If not him maybe he will know someone closer to Oklahoma.

Gloria

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Hi Fiddle-Faddle!

I'm not sure what else to tell you about Dr. Ehrenpreis. I believe that he is a gastroenterologist but he is VERY informed about Celiac and appears interested in learning new stuff, doing research/studies and really taking care of the patient. He did NOT run any of my tests. I had those done by a prior doc, the one that was a disaster. Dr. Ehrenpreis requested that I have my biopsy slides and lower bowel x-ray sent to him. He said that not every gastro knows what to look for when doing the biopsy and mentioned the epithelial cells etc. I know a bit of what he was talking about but don't know how to say it. I am still not totally confirmed yet, but he is fairly sure that I have Celiac based on my combo of tests, including blood tests, genetic testing (I have one of the HQ genes), terrible symptoms (and improvement on a gluten free diet), lower bowel x-ray (with EXTREMELY fast transit time I might add, lol) and is doing a review of my biopsy slides. He is part of a practise titled "Adult Care Specialists." My assumption is that they only treat adults there. I just checked his business card and I hadn't realized that they have a website www.adultcarespecialists.com I imagine that the other doctors in the practise have other specialities. On one occasion when I was there, they were giving flu shots. Usually I am the youngest one there and I am fffffffffffforty-plus. Dr. Ehrenpreis is cheerful, has a sense of humour (works nicely when one is talking about D etc), patiently listens to all of my questions and thoughtfully answers them, including the, ah, funny ones.......like does he know what speed my by-product is moving when I get no warning and can barely make it to the bathroom in time, even when at home and not located far away. His nurse (yes, assigned to him) Kimberly is very nice too. She is the one that calls you back and sets up your appointment. Just one note: try to be on time and they will tell you 1/2 hour early for that first appt. The only reason I mention this is because I WAS late the first time due to poor directions and bad flooding in the area....... I was 15-20 minutes late the first time and they had to reschedule my appt as he was due back at the hospital. I think that his nurse mentioned something about him not keeping an actual office their everyday but only as scheduled for appts. I hope that this info helps you out some more. He was a real treat after being treated cavalierly by my prior gastro doc, whom I think is really in the profession for the regular colonoscopies and that type of thing, just regular stuff. My first doc wouldn't write a note for my work-related disability regarding how extreme D CAN keep a person from making it to work etc.......Dr. Ehrenpreis UNDERSTANDS how extreme D can affect one's life. Phew!

Hi FinsUp.....thanks for telling me about Dr. Steve Holland. I WAS aware of Naperville gi's and had indeed at one point, at least briefly looked at his website but don't remember much. I had been looking for a personal GLOWING referral to a doc after the one I had seen. And thank you for reminding me that I forgot to mention the support group. I've been going there over the last 10 months........do you go too? Funny, we might recognise each other if you do! I didn't know that

Dr. Holland was active in the group. I must've been sleeping thru that one. Thanks again for the info. Right now I think I will stay with Dr. Ehrenpreis, but it's nice to know about Dr. Holland for the future for a closer visit.

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Hello All. I am really anxious for our appointment tomorrow in Chicago. We are seeing a world reknown Celiac expert at the University of Chicago, Dr. Guandalini. I'm hoping he can answer our many questions. I'll let you all know how the appointment goes. Thanks!

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Dr. Guandalini was FABULOUS!!!!!! He was so smart and informed!! He had an even better personality and bed side manner. He was truly incredible. If you are anywhere near Chicago or willing to travel, I would HIGHLY recommend Dr. Guandalini. He is doing a biopsy on Thomas in a few weeks. He noticed Thomas' iron was low, very common for Celiac, and that he was starting to show signs of dental enamel defects. I'm so glad that our journey, even though very long, has led us to such an expert! I think it's a breath of fresh air to encounter such a wonderful physician. Like every profession, there are good and bad, and it's nice to be praising Dr. Guandalini since there are so many docs out there who are misinformed. He even offered to come speak to a group for us. He was bar none, THE BEST!!!!!!!!!!!!!!!!!!!!!!!!

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Dr. Guandalini was FABULOUS!!!!!! He was so smart and informed!! He had an even better personality and bed side manner. He was truly incredible. If you are anywhere near Chicago or willing to travel, I would HIGHLY recommend Dr. Guandalini. He is doing a biopsy on Thomas in a few weeks. He noticed Thomas' iron was low, very common for Celiac, and that he was starting to show signs of dental enamel defects. I'm so glad that our journey, even though very long, has led us to such an expert! I think it's a breath of fresh air to encounter such a wonderful physician. Like every profession, there are good and bad, and it's nice to be praising Dr. Guandalini since there are so many docs out there who are misinformed. He even offered to come speak to a group for us. He was bar none, THE BEST!!!!!!!!!!!!!!!!!!!!!!!!

Kandi,

That is exhilarating news!!! I am so happy it was a great visit. How is Thomas doing? Didn't Dr. Guandalini also see your daughter?

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My last email was really a praise to the AWESOME DOCS out there! Again, every profession has good and bad, and it's hard not to generalize, but I have come across two WONDERFUL, OUTSTANDING physicians in this journey. The key is to keep trying and searching and you will find them. Anne, great to hear from you. Yes, Dr. G also saw Haley and recommended us to a peds Endocrinologist to treat her hypothyroid. He also recommended that Haley not be scoped w/ a negative tTG. If THomas' biopsy is positive, we will just keep on eye on her, screening her yearly. The appointment today was a God send. I'm so glad I found this board and found out about Dr. Guandalini. He's worth the drive. Dr. G will scope Thomas very soon, within a few weeks and then hopefully we can move forward one way or another. Thanks for your awesome support and I will keep you posted. Have a great night everyone! Kandi

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First of all, Guandalini is awesome. He sees my 6 1/2 year old son Nicholas and my cousin's daughter, Elissa who is 16 years old. Kandi- how did the appointment go? Angel, thank you for posting the information on the doctor in Arlington Heights. I am in Palatine so this is perfect for me! I will travel anywhere, though. We brought Nicholas to Massachussets General Hospital (they are on the forefront of Celiac research, too- also in British Columbia, CANADA). This is my first post so thanks for reading my rambling...

Take care all!

Gayle

Palatine, IL

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Hi Gayle, The appointment went great! He said he thinks Thomas DOES have Celiac, but it's not a clear cut case. If this is your first post, you probably don't know our history. We have been doctoring for a year and have been through many ill informed docs. Thomas had the wrong blood test done and we were told he was negative. Long story short. We figured it out, put him on a gluten-free diet for 3 months, switched docs and by the grace of God the new doc ran the right test and Thomas came back positive. It was only slightly postive though. They believe this was, of course, due to the fact that Thomas was on a gluten-free diet. Still there is a slight chance that it could be something else. All the genetics, signs, tests, and symptoms point to Celiac, but Dr. G wants to rule out H. Pylori, milk allergy, EE, and Crohn's to be sure. I agree completely with him. I want Thomas to have the correct course of treatment. I also think this is a very serious disease that requires medical assistance. We have been researching our family tree and very interesting things have popped up. My husband's brother died at age 33 from an aggressive form of T-cell non-Hodgkins lymphoma. This is very associated w/ untreated Celiac. This is why I think it is important to seek medical care and know for sure, at least in our case. There are several conditions that can improve on a gluten-free diet and I'm glad we finally found a true expert.

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Rez, I am so glad you had a good experience.

By any chance, to you have any links about non-Hodgkins associated with celiac? A friend of mine just had his 3rd bone marrow transplant, and when I suggested that he look into gluten intolerance being linked to hisnon-Hodgkins lymphoma, he said he didn't have a wheat allergy. I tried to explain that it's not an allergy, yadda yadda yadda, but he didn't want to hear it.

He's in the hospital now with severe pneumonia (the immunosuppressive drugs aren't letting him fight anything off). If he survives this, I want to make sure I have some hard info for him.

If he doesn't, then at some point I need to get some hard info to his wife and kids, or they may have to go through this again.

In the meantime, any prayers you might have for him would be greatly appreciated.

Thanks. (And sorry--I didn't mean to hijack the thread!)

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The info I found on the T-cell Non-Hodgkins lymphoma was in Dr. Peter Green's book. It's called Celiac Disease, A Hidden Epidemic. This is a great book that focuses strictly on facts. It's not fluff. Also, I just typed in Celiac and Non-Hodgkins lymphoma and a ton of info came up. Of course, it's like anything, just because you have it doesn't necessarily mean you have Celiac, but screening for it definitely is a smart thing to do. Good luck and I'll say a prayer for your friend.

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