Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

How Do I Know If Our Pediatric Gi Is A "good" One?

Minette

Recommended Posts

Minette Contributor
Minette
Posted

The allergist who did the celiac panel on my daughter (who seems to know what she's doing, based on what I've read here) recommended a couple of pediatric GIs for us to see for follow-up. We chose Rocky Mountain Pediatric Gastroenterology largely because they have an office close to us (the other one she suggested was in Denver, about an hour away).

They have 8 locations and seem like a very professional operation, but I have no way of knowing whether they are celiac specialists or not -- they list it as one of about a dozen "most common medical problems" they treat. I haven't had any luck finding a national database of "celiac-approved" doctors.

We haven't even had the appointment yet, so maybe I'm borrowing trouble, but I'm just wondering how you actually know whether your kid's doctor is the right fit.

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

Celiac.com Sponsor (A8-M):


mommida Enthusiast
mommida
Posted

You and your child are going to have to meet the doctor in person. Make sure the doctor listens and has a decent bedside manner.

Cara in Boston Enthusiast
Cara in Boston
Posted

Also find out about how many patients with Celiac does he/she treat? How many did he/she diagnose?

Our first (bad) doctor said he rarely finds kids who have celiac - this is at a major hospital in Boston. (really?) He said my son did not have it based on his conflicting blood tests (some were negative, some were positive), lack of symptoms (almost none, just behavior change) and his genetic test. I knew he was bad when he continued to be very condescending to me . . ."slow down, you've read one too many magazine articles . . ."

He seemed to only be interested in GI symptoms and slow growth - my son had neither of these.

Next doctor (at Children's Hospital Boston) said blood tests and behavior change was a concern and did a biopsy. Found extensive damage. She has been wonderful to work with this past year.

I would also assume if the doctor you like has referred these people, they should be pretty good.

mamaupupup Contributor
mamaupupup
Posted

I'll ask our Ped GI from Children's Hospital LA (Dr. Michelle Pietzak -- she's a researcher, on the board of Celiac Disease Foundation, etc.). She has mentioned that there is a higher incidence of Celiac in Colorado than in Southern California, so she has some connection.

If there is a R.O.C.K. group in the area, that might help in identifying, also calling or looking at the Boards of the Celiac awareness groups helps.

I'll get back to you as soon as I hear.

mamaupupup Contributor
mamaupupup
Posted

And, here we go...talk about a responsive doctor...ours is excellent

From a VERY good source:

One of the main celiac disease centers is in Denver, Co.

The best physicians to see are either Dr. Ed Hoffenburg or Dr. Edwin Lui.

Here is the info:

Open Original Shared Link

Open Original Shared Link

Given the excellence in care we've received, I'd go with either of these doctors in a heartbeat.

All my best!

mamaupupup Contributor
mamaupupup
Posted

To add a little: I like having a Ped GI who is a Celiac researcher--Dr. Pietzak listens to every crumb of input we give her. She's like a detective. We drive 2 hrs+ each way to see her.

Dr. Hoffenburg in Denver is a researcher. Here are some of his publications--he's on it! I'd choose him in a second!

2.Screening-identified celiac disease: who needs treatment and when?

Hoffenberg EJ, Liu E.

Clin Gastroenterol Hepatol. 2011 Apr;9(4):284-5. Epub 2011 Jan 14. No abstract available.

PMID: 21238607 [PubMed - indexed for MEDLINE]

Related citations

3.Antibodies to the wheat storage globulin Glo-3A in children before and at diagnosis of celiac disease.

Taplin CE, Mojibian M, Simpson M, Taki I, Liu E, Hoffenberg EJ, Norris JM, Scott FW, Rewers M.

J Pediatr Gastroenterol Nutr. 2011 Jan;52(1):21-5.

PMID: 21119542 [PubMed - indexed for MEDLINE] Free PMC Article

Related citations

4.Celiac autoimmunity in children with type 1 diabetes: a two-year follow-up.

Simmons JH, Klingensmith GJ, McFann K, Rewers M, Ide LM, Taki I, Liu E, Hoffenberg EJ.

J Pediatr. 2011 Feb;158(2):276-81.e1.

PMID: 20817171 [PubMed - indexed for MEDLINE] Free PMC Article

Related citations

Minette Contributor
Minette
Posted
  • Author

Thanks -- if I'm not completely happy with the doctor we're seeing next Friday, I'll definitely try to get in with Dr. Hoffenburg or Dr. Lui!

(We don't have a R.O.C.K. group as far as I can tell -- there's a local celiac group and their website says something like, "If you're interested in starting a R.O.C.K. group, that would be great!")

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,161
    • Most Online (within 30 mins)
      7,748
    DAR girl
    Newest Member
    DAR girl
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Disregarded

      By Scott Adams · Posted

      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By Oldturdle · Posted

      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By plumbago · Posted

      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Scott Adams · Posted

      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • trents
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By trents · Posted

      A lot to think about here. Does anyone have any recommendations for third party laboratories that will do full panel celiac screens private pay in the U.S.?
×
×
  • Create New...