SoCal Ped GI's
Posted 13 June 2012 - 05:05 PM
We were assigned (HMO) to a Dr. Bahar in Encino. He gets good reviews on healthgrades but he's far away from us. He also told me in no uncertain terms that no matter what my daughter's lab results (she has very high #'s) that false positives exist, and we'd have to do an endoscopy.
I know there is another doctor closer to us -- Dr. Laurance. But I don't know anything about him. The pediatricians office likes the first doctor better, but they can't really say why (they can't even REALLY say they like the first one better).
It's for my 5 yr old and I'm just wondering if anyone has been to or heard anything about either of these doctors.
Thanks so much.
Posted 13 June 2012 - 07:55 PM
First, welcome! And, if your dauhter has a high TTG lab result, it is unlikely it is a false positive.
Personally, I would RUN, not walk away from Dr. Bahar if he insists you HAVE to do a biopsy. All the medical journal studies I have read indicate that TTG is highly specific and highly sensitive for Celiac Disease. Even wikipedia gets that right. In addition, there are new guidelines from the University of Chicago Pediatric GI group (announced at this year's Celiac Disease Foundation Conference in April) that serology (bloodwork), symptoms, and a few other factors may be enough to diagnose Celiac without a biopsy. It does not seem to me that Dr. Bahar is up to date on Celiac.
I have no personal feedback on either doctor.
I do however have a STRONG recommendation for Dr. Michelle Pietzak at Children's Hospital LA. Dr. Michelle Pietzak, Children’s Hospital Los Angeles (323) 361-2181. We live 100+ miles away and have our twin 5 year olds under her care. She is simply excellent. She is an extremely experienced pediatric GI who is also a Celiac Researcher. She understands the disease exceptionally well.
I was anti-biopsy until I met her--she performs in excess of 100 endoscopies on little littles a year. She did not force us to do endoscopies, she let it be our choice. I'm glad we did biopsies because she identified a stomach ulcer and low digestive enzymes in one of our girls we otherwise would not have known of.
She has a great bedside manner both with parents and kids. She is great to work with and understands the LONG TERM impacts the disease can have and is guiding us forward to PREVENT additional diseases/issues from developing (like osteoperosis!).
Feel free to ask me any questions at all! Since so many friends/relatives have asked me, here's my quick info list on Celiac:
Best Two Page Overview: http://www.celiac.or...ild-the-one.pdf or for adults: http://www.celiac.or...you-the-one.pdf
Best Book: Celiac Disease: A Hidden Epidemic by Dr. Peter Green
Best Forum: http://www.celiac.com/gluten-free/
Best Online Checklist: http://www.celiaccen...toms-checklist/
Best Pediatric Gastroenterologist/Celiac Researcher: Dr. Michelle Pietzak, Children’s Hospital Los Angeles (323) 361-2181
Best Adult Gastroenterologist/Celiac Researcher: Dr. Greg Harmon, UCLA (310)267-2571
Posted 13 June 2012 - 08:02 PM
Posted 14 June 2012 - 01:18 PM
Posted 14 June 2012 - 04:02 PM
They couldn't guarantee that we'd be able to see Pietzak -- but we can try. Thanks so much for the recommendation -- hopefully we'll be able to get in with her -- but if not I REALLY hope the other people are good too!
Posted 14 June 2012 - 04:12 PM
Are you familiar with any of these docs at CHLA? (Arcadia extension)
Chuan-Hao Lin, MD
Quin Liu, MD
Jaya Punati, MD
Ardath Yamaga, MD
Posted 14 June 2012 - 07:13 PM
We would fly, drive, paddle, scooter to see Dr. Pietzak. I can't imagine any other So. Cal doctor being as good. She is a Celiac nerd and knows the disease better than anyone really I've come across. Plus, she is a Mom. Plus, she is in charge of the CHLA nutrition program (which means the nutritionists are REALLY in tune with Celiac). Plus the facility is really nice and kid-friendly. I would do the drive.
Dr. Pietzak is on the board of the Celiac Disease Foundation...teaches at USC and has access to literally the best pathologist in the world (she is on our behalf having him look at one of our girls' biopsies).
We called and called and called and called. It took me about six weeks to get an appointment with her.
We drive a further distance than you'd have to
To give you a sense of what you're in for in terms of number of visits:
1st appt Consultation/review (she spends a LOT of time -- like an hour+)
2nd appt--IF you decide to have an endoscopy--that'll be the endoscopy
3rd appt Endoscopy results and meeting nutritionist (although she told us most of what we needed to know immediately after the surgery...along with pics, etc).
Then about 3-6 months she'll have you do a checkup.
She shares research papers with me, answers all my questions, does lots of hard legwork (our cases were not textbook presentations of Celiac Diseae). I would see her myself if I could turn back time...
And she is just plain nice...she pretends to smell the kids feet...jokes with them, puts them at ease...
Have I convinced you yet???
BTW she was our 6th doctor
1. Pediatrician #1 "that gluten thing is a phase"
2. Pediatrician #2 "those are growing pains--don't give her Motrin though"
3. Allergist (a friend from childhood) "Celiac is really rare, but I'll request the labs you want"
4. Pediatrician #3 based on allergist report "DD2 is fine but go see GI x, DD1 tested positive for Celiac"
5. GI x "Yep, DD1 is positive. You don't need to do an endoscopy. Would you like to talk to our nutritionist about going gluten free?"
6. Dr. Pietzak..."How did you think to test DD1?" Us: "We suspected DD2"...and Dr. Pietzak dug into every detail about each child and hasn't left our sides, so to speak. I am eternally greatful.
Posted 15 June 2012 - 02:13 PM
Take care and I'll update here with my first impressions of Dr. Liu.
Posted 15 June 2012 - 03:40 PM
Posted 15 June 2012 - 05:24 PM
Interesting -- maybe they've changed things? I told her that Emma was positive on her celiac panel from her bloodwork. I told her I could give her the #'s over the phone if she wanted. She said to bring that in, but that the GI would be the one to officially diagnosis. So it seemed that as far as CHLA was concerned we were not yet confirmed Celiac.
Yes, that is right. You ARE a confirmed Celiac case!!! All we had was positive bloodwork for one child!
Posted 15 June 2012 - 07:43 PM
Here's what I ended up saying:
- My daughter has tested positive for Celiac Disese.
- We would like to see Dr. Pietzak.
- Our daughter is symptomatic and we are keeping her on gluten so Dr. Pietzak can have a chance to do an accurate endoscopy if necessary. Being on gluten is making our daughter sicker
- When is Dr. Pietzak's next available appointment?
Somehow that seemed to work...
How badly do you want to see Dr. Pietzak? You could try leaving her a message at USC also!
Posted 20 June 2012 - 01:52 PM
Posted 20 June 2012 - 03:37 PM
A little more for you to digest...maybe Dr. Liu covered this...I can't remember what you've done for the rest of the family:
since Celiac is genetic, every first degree relative (and possibly second degree relative) should be tested. I tested negative on bloodwork, but figured out I'm symptomatic and decided to have an endoscopy done. I also agreed to a colonoscopy. Bingo: I have Celiac Disease! Dr. Harmon at UCLA is great, not the simplest bedside manner but wicked smart and very good at what he does.
Thinking of you!
Posted 02 September 2012 - 07:47 PM
My son tested weakly positive on the TTG part of the labs and based on some symptoms for him (not as clear as Em) and the fact that Em is positive Ian will get biopsied soon. My labs were negative and I don't really have any symptoms. My husband has some regular acid/heartburn symptoms and I've been begging him to contact his doctor to get labwork done. If he turns out positive we will definitely try and see Dr. Harmon.
Thank you for your care and concern. It feels like a steep learning curve -- but we are getting there -- and trying to avoid cc. (we are getting better at that)
Posted 12 September 2012 - 09:43 PM
P.S. Since you are in So Cal, try to go to the Celiac Disease Foundation conference next April or May -ish. It was EXCELLENT for us! We will be there again next year!
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