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To Biopsy,or Not To Biopsy

mbledtke

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mbledtke Newbie
mbledtke
Posted

Hello!  Need some help/advice from those of you who have been through this....

 

Since January 2014, I have suffered with moderate abdominal pain and diarrhea.  After "waiting it out" for a few months, I finally went to the doctor.  After several tests, he did a Celiac blood panel, which was positive.  

 

Looking back, it looks like a Celiac diagnosis fits me pretty well.  From the research I've done, it looks like a lot of my "oddities" can be explained by Celiac Disease: late onset of puberty, infertility (found to be due to antibodies and uterine lining abnormalities), some anxiety/depression.  As I had travel plans (a cruise) coming up, he told me to go ahead and quit the gluten, so I could at least travel and enjoy my vacation.

 

Within about 3 days of going gluten free, I feel DRAMATICALLY better.  Abdominal pain is done.  Diarrhea is gone.  But most significantly, I feel mentally MUCH clearer, and my anxiety is totally gone.  I feel so good, that going gluten free has been pretty easy - no donut, beer, bread, is going to be worth feeling so crummy.

 

I went to the GI doc today, and he said that though it sounds "very likely" that I have Celiac Disease, the standard of care is a biopsy.  I have no problem at all with having it done.  My only problem is financial.  I am self employed, and therefore have VERY expensive but VERY pathetic health insurance ($8000 deductible).  I have no idea what a biopsy might cost, but I have read online around $2-3k.  Since it will ALL be coming out of pocket, I just can't justify spending that kind of money for something that I feel I already have the answer to.   It't not that we can't afford it, but If I feel that much better, and my symptoms have vanished by going gluten free, what more will this expensive test do for me?

 

If this gives any more information, here were my blood panel results (not sure if I wrote down all the test names accurately)

 

Gliadin Antibodies IGA   58

IGG  23

TTG IGA  55

TTG IGG  8 (normal, I think)

 

Thank you for your advice!!

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GottaSki Mentor
GottaSki
Posted

Welcome!

 

I am a proponent of the endoscopy/biopsy - except when the current state of our medical/health insurance system puts the test out of reach financially.

 

A biopsy is a good idea, but not essential.  Your tests do indeed indicate Celiac Disease.  Do you have the reference ranges provided for each test -- these are helpful to us as the reference ranges vary from lab to lab.

 

Unfortunately I too have experience in the changing costs of health care - in particular the endoscopy with biopsy.  My first was covered completely...our insurance has continually covered less and less each year.  I can no long afford the repeated medical tests needed because of the damage caused by undiagnosed celiac.

 

The MOST important part of your post is that your symptoms are new (relatively speaking).  With positive celiac antibodies and positive response to diet -- I see no reason to spend the money to confirm the damage occurring in your small intestine.

 

Let us know if you have more questions and try to update with ranges if possible.

 

Good luck to you :)

mbledtke Newbie
mbledtke
Posted
  • Author

Welcome!

 

I am a proponent of the endoscopy/biopsy - except when the current state of our medical/health insurance system puts the test out of reach financially.

 

A biopsy is a good idea, but not essential.  Your tests do indeed indicate Celiac Disease.  Do you have the reference ranges provided for each test -- these are helpful to us as the reference ranges vary from lab to lab.

 

Unfortunately I too have experience in the changing costs of health care - in particular the endoscopy with biopsy.  My first was covered completely...our insurance has continually covered less and less each year.  I can no long afford the repeated medical tests needed because of the damage caused by undiagnosed celiac.

 

The MOST important part of your post is that your symptoms are new (relatively speaking).  With positive celiac antibodies and positive response to diet -- I see no reason to spend the money to confirm the damage occurring in your small intestine.

 

Let us know if you have more questions and try to update with ranges if possible.

 

Good luck to you :)

Hi Lisa, 

 

Thank you for your quick reply!!

 

Here are my official results:

 

Open Original Shared Link 58 <20 - <20 UNITS H Open Original Shared Link         Open Original Shared Link 23 <20 - <20 UNITS H Open Original Shared Link 55 <20 - <20 UNITS H Open Original Shared Link 8 <20 - <20 UNITS

I really do appreciate your help!!  I, too, would sort of like to have the biopsy done, but again, my big thing is, is it worth a few thousand bucks, when I feel I already have my answer?  Hmmm....

 

Thanks!

moni

GottaSki Mentor
GottaSki
Posted

You have celiac.  The biopsy is still a very good idea...only you can decide if the cost is worth the information that it may provide -- tough call IMO.

 

We are here for you...either way.

 

Let us know how we can help...and if you haven't seen it yet...check out this thread - you will be glad you did:

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

cyclinglady Grand Master
cyclinglady
Posted

I was officially diagnosed last year. My husband went gluten free 13 years ago at the advice of my allergist and his GP. The bad news is that he does not have a formal diagnosis, but the better news is that he is well! You have your blood test results. I would go with that. Save your cash to purchase gluten free items for your kitchen.

Welcome!

NoGlutenCooties Contributor
NoGlutenCooties
Posted

Welcome!

 

IMO, there would be two potential benefits to having the biopsy done.  1) you could potentially get an "official" diagnosis, and 2) they would most likely run a couple of other tests on the biopsied tissue to rule out other possible issues.

 

However... you need to be eating gluten for the biopsy to be valid.  Also, they could do the biopsy and the biopsy could come back negative even though you have Celiac.  Which would mean you still wouldn't have your "official" diagnosis from your doctor... but rest assured that based on your blood tests you absolutely have Celiac.

Also, if you continue with the gluten free diet and your symtoms all go away then the chances that there is something else going on is fairly minimal.  As mentioned above, your symptoms are pretty new.  I'd be more concerned if you had been having symptoms for several years.  (Disclaimer here... I'm not a doctor.  This is just my .02 cents based on my own diagnosis and everything I've read about this disease.)

mbledtke Newbie
mbledtke
Posted
  • Author

Woah, just talked to the billing folks at the hospital.  They said that the doctor's fees alone were close to $3000, and that they expected hospital/anesthesiology fees to be at least that much if not more.  SO.....at the price of $6000+ out of pocket, I won't be having the biopsy done.

 

I have done some research and have read that some physicians use the antibody blood work along with genetic marker bloodwork, to make a definitive diagnosis.  I have read that this combination is as accurate as the biopsy.  Anyone have an experience with this?  Any opinions?

 

Thanks again for your help!!

 

moni

 

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GottaSki Mentor
GottaSki
Posted

Yep...my last one was 8K before insurance contracted price lowered it a bit.

 

Plenty of people are diagnosed without endoscopic biopsy.

 

The criteria is to have three or four out of five:

 

Antibodies

Genetic Markers

Biopsy

Resolution of symptoms with complete removal of gluten

I'm forgetting one...will add later if I have time to look it up.

 

Some doctors will diagnose based on familial history and resolution of symptoms -- one of my sons and a grand was diagnosed this way.  I hit all the markers, my daughter hit many and I have one other son that is hanging with the NCGS (Non-Celiac Gluten Sensitivity) tag for now.

cmc811 Apprentice
cmc811
Posted

WOW, that's expensive. Can you have it done at an ambulatory surgery center instead of a hospital? My fees were $1825.75 which included everything - facility fee, physician fee and pathology fee.

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