Where in San Francisco area should I get an Endoscopy? (Anthem Blue Cross, for < $10,000!)

[SFmaybeCeliac]

I'm trying to find a decent place to get an endoscopy for celiac -- I had a highly recommended doctor at Kaiser, but am now on Anthem Blue Cross, and an endoscopy is very expensive at UCSF where my GI doctor recommended it.  It can be 10,000$ without insurance, would still be $2000 with my great no-deductible EPO plan!

Other places seem to be much cheaper (as low as $1000, which would end up costing me $200). But I have no idea if they are reputable and competent at celiac diagnosis (all I have is the the occasional yelp review, usually for a colonoscopy...).

Do you have any recommendations? Or know someone who might, who I can private message? I can check to see if they are covered by my insurance. 

 

For reference, it's important that the doctors be pretty competent -- my previous endoscopy was negative, but my ttg tests are 4x normal and going up every time I'm tested -- so I want to have confidence that I won't get a false negative!

[Scott Adams]

You might get some of the names of doctors who do the least expensive procedures and check them here:

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[SFmaybeCeliac]

Thanks, that's helpful as a bare minimum 

Though I I'm hoping to find someone who not only is not bad, but someone who is explicitly recommended for Celiac diagnoses, given that I've already had one potential false negative (from a highly regarded doctor). Perhaps there is some directory for this too?

[Scott Adams]

This might help:

https://www.celiac.com/articles/277/1/United-States---Doctors/Page1.html

[cyclinglady]

Will your insurance run the rest of the celiac panel or was that already done?   The TTg is often used for initial screening.  A positive result usually requires a full celiac panel as the next diagnostic procedure before  biopsies.  

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[SFmaybeCeliac]

Hmm. These are my results: 

• Tissue Transglutaminase Antibody, IgA: 77.6 (standard:  <20.0 CU)
• Gliadin Ab IgA, Deamidated: 15.5  (standard: <20.0 CU)
• Gliadin Ab IgG, Deamidated: 57.5 (standard:  <20.0 CU)
• IgM, serum:  80 (standard: 39 - 333 mg/dL)
• IgG, serum: 867 (standard: 672 - 1760 mg/dL)
• IgA, serum:  169 (standard: 89 - 581 mg/dL) 

Is that considered a full celiac assay and expected results? 

[cyclinglady]

Just the EMA is missing.  That test, if I recall, is very specific to celiac disease but is expensive to run.  You have a positive on the DGP IGG though.  Two positives, I would say that you mostly likely have celiac disease but I am not a doctor!  

It is recommended that more that four biopsies are taken.  This will help insure that they catch damaged areas.  The small intestine is vast (stretched out the size of a tennis court).  It is 22 or so feet long. Even Dr. Joseph Murray, GI at Mayo Clinic and one of the leading celiac disease experts in the US, has said that it is easy to miss damaged areas (heard that on a video recently).  So celiac disease tests are not perfect.

Do you have a copy of your previous biopsy and endo reports?  

Do you mind if I ask what were your initial symptoms?  

Here is more reading:

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[SFmaybeCeliac]

Thanks so much for your detailed reply.  Unfortunately I missed the email about it or I would have responded sooner. 

I had 10-12 biopsies taken.

This is the report summary and symptoms:
FINAL PATHOLOGIC DIAGNOSIS SMALL INTESTINE, DUODENUM, BIOPSY: - NO SIGNIFICANT PATHOLOGIC ABNORMALITY. STOMACH, BIOPSY: - NO SIGNIFICANT PATHOLOGIC ABNORMALITY. NO H. PYLORI-LIKE ORGANISMS IDENTIFIED. 3/2014 DQ2+, DQ8 negative
Currently gets colds periodically, no other GI symptoms. Has 2-3 BM/day, no pain. Stool is formed to soft. Good appetite though not very high calorie diet. Usually 2-3 meals/day. 
 

Do you know if there is a way to find the EMA test / get my insurance to do it? According to my doctor "My system won't let me order the endomysial antibody for some reason"

I'm still looking for a place to do an endoscopy too, though I'm running out of time before the end of the year. :/

[cyclinglady]

Aren't any of your doctors able to recommend a GI doctor?  I know you are trying to find a cheaper endoscopy, but if it were me, I would pay the $2k even if I had to get a second job or borrow from family and friends.  But only you can make that decision since you know your financial circumstances.  You had two positives on the celiac panel.  Getting the EMA test.  How is that going to help?  Will you go gluten-free if that is positive or what?  I do not understand.  Your insurance will cover an endoscopy, right?  

I do not mean to be harsh, but we are talking about your health.

[SFmaybeCeliac]

I appreciate your concern! 

The reason I am hesitant to get a second endoscopy is that I don't have any real reason to expect it to be positive. It was negative before, not much has changed, and it costs much more at UCSF than anywhere else almost, but I'm just not sure where else I should trust. 

So it seems dumb to spend so much money in it, if I can find a better option. (either another highly specific test, or an alternate less expensive trusted location)