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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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stacytr

SoCal Ped GI's

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I'm wondering if anyone has any experience with 2 different pediatric GI's in southern California.

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.

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Hi there,

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

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Thank you mamaupupup. Do you know if the doc you are recommending takes Blue Cross HMO? We have to go through our pediatrician for services to be covered. I would love to see her though!

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Ok new question. Would you recommend any of the CHLA ped GI's? I spent an hour on the phone this morning just trying to find out if she was a contracted specialist with our medical group. So far, the most I've gotten is that we can petition to get her, but usually the way these things go is that they turn it down if there's someone else in network. I was thinking to ask if I could just be referred to the CHLA ped GI office right here in Pasadena so we don't have to drive so far.

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Mamaupupup! I was on the phone a lot today -- with CHLA and then our medical group trying to determine if Dr Pietzak was a covered specialist. Finally I just called our pediatrician's office and asked if we could be referred to the CHLA extension right here. They said YES!

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!

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Ok -- sorry -- last one I swear! :o I just don't know anyone else who knows anything about GI docs!

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

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Hi Stacy! :) Long day! No, I don't know the others...

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.

Then annually.

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.

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Thanks so much for letting me bombard you with questions. We have a CHLA authorization and when I called they said that Dr Pietzak would only see us if we were confirmed celiac. The receptionist booked us with Dr. Liu and said a lot of positive things about him when I grilled her about him. Hopefully Emma's case will be more straightforward than your daughters' and we won't have to go through so much. I'm so glad you are on the other side of it all -- It must have been maddening in the middle of things.

Take care and I'll update here with my first impressions of Dr. Liu.

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Yes, that is right. You ARE a confirmed Celiac case!!! All we had was positive bloodwork for one child!

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Yes, that is right. You ARE a confirmed Celiac case!!! All we had was positive bloodwork for one child!

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.

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I had a really difficult time getting an appointment. I probably called a dozen times. I pointed out to them that I was feeling like I was poisoning my child and making her sicker keeping her on gluten while I waited for an appointment. I ended up talking to a supervisor, which isn't how I got the appointment...but at least I felt heard!

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!

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Ok we had our appointment with Dr Liu at the Arcadia extension of Childrens Hospital Los Angeles. First impressions: I REALLY liked him. He was kind, good presence, gentle with Em. He really listened and really answered our questions. I had printed off the stuff about the new guidelines -- he read them through and gave a thoughtful response. He talked about why he still wanted to do an endoscopy. He said that he wouldn't be surprised to see those standards become common practice in a few years -- but it's not there yet -- not all the celiac organizations have embraced and said yes this should be/will be our new standard of diagnosis. He also said that since one of the lab tests must be read by a tech, that it too can show false positives/negatives. He wasn't at all dismissive of them (like the first doctor I talked with on the phone). Endoscopy is one of his fields of expertise -- which was reassuring -- he's done a LOT. He said he would do at least 6 biopsies and do the duodenal bulb. He also referenced Dr Pietzak, and it was clear that he respected her. He also said she was a resource if a case wasn't clear. All of it really made me feel MUCH better. I feel like we are in good hands. I liked him, but more importantly I trusted him.

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Awesome!!! That is great news!!! Ask him about the digestive enzymes test he can also biopsy for--Dr. Pietzak did it for our girls and it is helping us figure out the whole puzzle. (One of our girls has low digestive enzymes for fats, lactose, and fructose). I don't know what the test is called, so he will probably need to touch base with Dr. Pietzak.

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!

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I realized that I hadn't updated here. Emma had her endoscopy in late July. The results came back less than a week later -- she is definitely celiac. She has gained 3 pounds this last month+!! (This is after not gaining anything this last year) She has also measurably grown too (but I can't remember by how much). I am so thrilled for her (though she's heavier now and harder to carry -- didn't expect so much growth so fast!) I feel badly that we were giving her food that was hurting her :(

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)

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:) Yay! Making progress! So excited for you all! :) The CC thoughts never end :) Thinking of you all!

Cheers!

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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