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


Minette

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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.


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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!")


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    • Scott Adams
      If your tTg-IgA was 28 and positive is at 3, you are nearly 10x over the positive marker, so the most likely explanation by far would be celiac disease. I also do not understand why your doctor would not want to run the blood test, which is the normal first step in the diagnosis process.
    • xxnonamexx
      Is there a digestive enzyme that helps build a healthier gut? I see people taking them but not sure what really works
    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
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