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

Minette

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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.

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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!")

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
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      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
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      By trents · Posted

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