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

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


Minette

Recommended Posts

Minette Contributor

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

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

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

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

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

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

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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Florence Lillian replied to Jay Heying's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Celiac friendly probiotics

    2. - slkrav posted a topic in Introduce Yourself / Share Stuff
      0

      Gluten free beer ?

    3. - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

    4. - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

    5. - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,879
    • Most Online (within 30 mins)
      7,748

    Peta Dunn
    Newest Member
    Peta Dunn
    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

    • Florence Lillian
      In response to your questions regarding probiotics.  I have had Celiac for 40 years.  Stomach issues: digestion, IBS to chronic constipation, bloat after eating anything.  I was unable to eat a healthy variety of foods, tried probiotics supplements - some made me worse, others made no difference.  After reading about people with Crones, IBS, etc, who made their own probiotics I started making Milk Kefir: not water Kefir. There are 10 probiotics in milk KEFIR. After 3 weeks I was able to eat more, no gas, no IBS.  If you have a computer just ask for videos on making milk Kefir. I branched out and make my own Kombucha for even more probiotics. I do not make my yogurt because there are only about four probiotics in that. I started this when I was 82 and I still make my own Kefir and Kombucha. My stomach issues were fixed with the Milk Kefir alone. If you decide to try making it, make certain you order MILK GRAINS. The finished product tastes a bit like Buttermilk. I hope this helps in your journey to good health.
    • slkrav
      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    • cristiana
      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
×
×
  • 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.