Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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

Integrous

By Integrous
in Doctors

Recommended Posts

Integrous Apprentice
Integrous
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


mamaw Community Regular
mamaw
Posted

Chicago or  Boston  with  Dr Fassano...

beth01 Enthusiast
beth01
Posted

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.

user001 Contributor
user001
Posted

I'm going to ny Presbyterian Columbia next month, I think Boston and Chicago are the best of the best though.

LauraTX Rising Star
LauraTX
Posted

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.

GottaSki Mentor
GottaSki
Posted

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 :)

Integrous Apprentice
Integrous
Posted
  • Author

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted

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.

SMRI Collaborator
SMRI
Posted

I'd say Mayo Clinic.  They have a unique practice model and are uniquely set up to receive patients from all over the world.  

beth01 Enthusiast
beth01
Posted

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.

sweetsailing Apprentice
sweetsailing
Posted

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.

beth01 Enthusiast
beth01
Posted

Thank you Sweetsailing.  When I looked on their website it didn't state that any of their GI docs had interests in celiac so I was wondering :)

SMRI Collaborator
SMRI
Posted

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.  

beth01 Enthusiast
beth01
Posted

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.

SMRI Collaborator
SMRI
Posted

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.

beth01 Enthusiast
beth01
Posted

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!

SMRI Collaborator
SMRI
Posted

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.

beth01 Enthusiast
beth01
Posted

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.

  • 3 months later...
crazymurdock Apprentice
crazymurdock
Posted

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.  

  • 2 months later...
jddh Contributor
jddh
Posted

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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.