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Suggestions On The Best Celiac Doctor/program In The U.s.?

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I have been fanatically gluten free for over 7 months, yet my tTG IgA antibodies still score literally off the charts (i.e., the value always comes back "greater than 100").  My current celiac doctor admitted that he can't explain my results and has no suggestions on how to proceed other than to remain gluten free.  I'd like to get a second opinion from a preeminent celiac doctor, and I'm willing to travel anywhere in the U.S. to do so.  If there is any consensus in the celiac community as to the best celiac doctor or program, please share.  Thanks

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Before you get into a tizzy( I am not trying to downplay your frustrations, just giving you another way to look at it) take this into account; you have been gluten free for seven months and your antibody level was >100 at diagnosis.  You don't know how high above a hundred it started - it could have been 100,000, they just don't titrate up the test that far.  My daughter was diagnosed two months ago and also had a tTg of >100.  Her ped's GI ( from Mayo) told me not to be  surprised if her levels don't drop fast.  He told me it can sometimes take years.  They are going to check her every six months.

 

Are you having symptoms and that is why you are worried?  If your previous symptoms have abated and your are feeling healthier, I wouldn't worry.

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I agree with the above that University of Chicago, or Dr. Fasano in Boston.

 

As said above, seven months is not going to be enough time for such high antibodies to go down.  I highly recommend giving it more time if you are 100% sure you are not getting gluten from somewhere.  There are a few people here on the board, hopefully one will chime in here, who had numbers above the detectable range for quite a while that took longer than a year to start going down.  If you are still having problems and feel your villi haven't yet healed, it is time for a second look at what you are putting in your mouth to double check for CC, and after some more time has passed, if you still have problems, then go see another specialist.  There are some Celiacs who don't seem to respond well enough to a gluten-free diet, but seven months is not enough time passed to make that determination.

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I have been fanatically gluten free for over 7 months, yet my tTG IgA antibodies still score literally off the charts (i.e., the value always comes back "greater than 100").  My current celiac doctor admitted that he can't explain my results and has no suggestions on how to proceed other than to remain gluten free.  I'd like to get a second opinion from a preeminent celiac doctor, and I'm willing to travel anywhere in the U.S. to do so.  If there is any consensus in the celiac community as to the best celiac doctor or program, please share.  Thanks

Welcome!

Did you have any other celiac antibody tests at diagnosis or as follow up?

As others have stated...when tTG-IgA numbers are extremely high it can take time to get them down.

Specifically the Deamidated Gliadin Peptide tests are the first to rise and fall in conjunction with gluten ingestion/removal.

If they have not been run, request both DGP-IgA and DGP-IgG.

Testing for nutrients can also provide information regarding progress as your time gluten-free increases.

Hang in there :)

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Welcome!

Did you have any other celiac antibody tests at diagnosis or as follow up?

As others have stated...when tTG-IgA numbers are extremely high it can take time to get them down.

Specifically the Deamidated Gliadin Peptide tests are the first to rise and fall in conjunction with gluten ingestion/removal.

If they have not been run, request both DGP-IgA and DGP-IgG.

Testing for nutrients can also provide information regarding progress as your time gluten-free increases.

Hang in there :)

 

Thanks everyone for the above replies.

 

Lisa - Just before I went gluten-free in December 2013, my Anti Gliadin IgA was >250 and Anti-Gliadin IgG was 54.8.  When tested last week, my Deamidated Gliadin IgA was 86 and Deamidated Gliadin IgG was 38.  I'm not sure if they are the same tests or not.  EMA test was positive in December and last week.

 

With the exception of a slight vit. D insufficiency, all my nutrients were within acceptable range at the time of my diagnosis in December 2013.  As of last week, all nutrients were within acceptable range, including vit. D (just barely).

 

Thanks for listening.

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Thanks everyone for the above replies.

 

Lisa - Just before I went gluten-free in December 2013, my Anti Gliadin IgA was >250 and Anti-Gliadin IgG was 54.8.  When tested last week, my Deamidated Gliadin IgA was 86 and Deamidated Gliadin IgG was 38.  I'm not sure if they are the same tests or not.  EMA test was positive in December and last week.

 

With the exception of a slight vit. D insufficiency, all my nutrients were within acceptable range at the time of my diagnosis in December 2013.  As of last week, all nutrients were within acceptable range, including vit. D (just barely).

 

Thanks for listening.

While the AGA and DGP are similar ... They are not the same test. Make sure the run the DGPs again on your next round of testing. As long as the numbers are coming down and you are certain you've removed all sources of gluten -- it really is simply a waiting game.

Fantastic that your nutrient levels are good...when those get low all sorts of things go wonky.

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At Mayo clinic, I have been there, Dr Joseph Murray is the head of the celiac department there.  I did not seem his specifically when I was there since I was there for another issue (blood clot) and then saw another GI to get tested for celiac.

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SMRI, can I ask you who you see in Rochester?  I have been up there to see some doctors but I was there for cardiothoracic surgery and pulmonology.

 

 

At Mayo clinic, I have been there, Dr Joseph Murray is the head of the celiac department there.  I did not seem his specifically when I was there since I was there for another issue (blood clot) and then saw another GI to get tested for celiac.

 

 

What Sweetsailing said. :D.  I haven't actually seen him yet, I go back this coming week.  He is doing a big study from what I understand but that is all I know about that.  I was also there for other issues and they tested me for Celiacs as part of that ordered by my endocrinologist.  

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You will have to let me know how it goes!  I read about some of their trials but I don't think I would apply for one since I don't have my diet under control.

 

I will let you know. I have no idea what they want.  My diet isn't under control either since I haven't been told to go gluten-free yet.  My endo said to wait until I saw the GI team in case they needed more tests.  My daughter is getting tested as well and we both have appointments for a "study visit" whatever that entails.  My sister sees him as well so it might be a genetic study???  We have so many autoimmune stuff in our family we are just ticking timebombs :D.

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My family is like that also.  My biological dad has MS, and I have quite a few cousins on that side with multiple AI issues.  I have encouraged a lot of them to get tested for celiac and I know one has but she was negative.  They also didn't do much for testing on her.  I told her to start an elimination diet so I am going to help her with that.  My mother also has AI issues so my genes doubly suck.  She has Sjogren's and lupus.  I have an appointment with the Mayo doc here in town next month and I am going to ask her about going to Rochester to see a specialist. 

 

Good luck!

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Rochester Mayo is certainly an experience.  They have medical care down to a well oiled machine.  Everyone is so friendly, nice and professional.  If you do go, plan on staying for a week for your initial appointments.  It might not be that long but generally you will have appointments scheduled over several days.  They check every nook and cranny!  They also take the time to really talk to you.  I think my initial appointment with my endo took an hour just going over my medical history, etc., then she did the exam.

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Yes, when I had the mass in my chest I was there quite a few times.  Luckily I saw the head of Pulmonology and the head of the Cardiothoracic surgery department.  I was very pleased when I went there.  What was supposed to be a month long stay in the hospital turned into a day surgery ( I disappointed a lot of people that day, I think I was the only one that was happy lol).  I have an appointment with my GI later next month and am going to ask to go to Rochester for a consult.  I was going to go to Chicago but a 2 hour drive is better than a 4 hour drive.

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I know it has been awhile since anyone posted on this topic but thought I would add my two cents. First off, Integrous, I hope you have found some answers by now. Like some of the others, to anyone looking for a great celiac disease doctor, I would also suggest Mayo Clinic and Dr. Murray based off personal experience. I was referred to him from a GI doctor in Asheville, NC. After experiencing some concerning health issues, and after many tests my diagnosis of 11 years of celiac disease was upgraded to refractory celiac disease with clonal t-cells, something the Asheville doctor hadn't seen but once in 20 years and said I needed to be treated by a celiac center and felt Dr. Murray was the best option and he hoped that I would qualify for a study that they are running to treat rcd. If you google or youtube search for Dr. Murray, there are several informative videos that he has posted on celiac disease, rcd, and gluten issues.  

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In agreement (and support!) of @crazymurdock — not only is Dr. Murray one of the leading experts and clinicians of celiac disease, he is thorough, conscientious and generally a wonderful guy. I needed special consultation for a runaway diagnosis from a GI with relatively little experience in complicated celiac disease, and the expenses and sacrifices paid/made to get the Mayo were unquestionably worth it.

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