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Help With Dilemma - Wait For Endoscopy?

superfob

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superfob Contributor
superfob
Posted

Hi,

I was finally able to book an appointment with a gastrointestinal doctor after explaining my symptoms to my primary care doctor. With my current insurance plan, they are not allowing me to see doctors outside my university health center unless I am referred and the procedure cannot be done there. So, currently I am stuck with an appointment which is at least 1 month away with a gastro who unlikely has a good knowledge of Celiac. I have already ran a Celiac panel with Quest testing for IgA AGA and tTG IgA, and the AGA came up positive.

So my current options are:

1. wait for the appointment in March so that insurance can cover my costs for testing, while still consuming gluten all this time - I may possibly get put off by the gastro since my tTG is negative, and even if he does allow me to do the biopsy, it seems like I won't be able to go gluten free until April/May (depending on how long biopsy would take to schedule)

2. go gluten free now, and pursue the diagnosis months later with a gluten challenge: the reason I would consider this is because I am currently in school, and my concentration is so horrible I can just foresee my grades dropping significantly

3. directly see a doctor who is knowledgeable in Celiac and pay out of pocket

So one question I have is: does anyone know how much a biopsy would cost out of pocket?

I really can't see what my list of symptoms would be attributed to other than some sort of sensitivity to gluten/other foods. Its so hard though, especially with most doctors not knowing too much about it, and also I feel like my brain is going haywire and I continually doubt myself. I feel like I have so little control over my mind right now...=(.

Thanks

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Lisa Mentor
Lisa
Posted

Positive blood work is considered a diagnosis. AGA is a relatively new test and is pretty accurate. If I were you, I would consider myself diagnosed and would continue with the gluten free diet.

And endo at this point could indicate the the level of damage. But, it might not be a bad idea to have a base line exam. For those of us with intestinal distress, it's not a bad thing, at the least, to rule out other more serious issues......just sayin' ;)

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Jestgar Rising Star
Jestgar
Posted

Option 4. Stop eating gluten and if you feel better, never do a challenge. Why do you need a doctor's permission to choose your food?

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ravenwoodglass Mentor
ravenwoodglass
Posted

You have had positive blood tests. I would just go gluten free and not look back. There are doctors who will skip the biopsy with positive bloodwork as the biopsy has a fairly high chance of a false negative anyway. The TTG being negative is a good thing as it shows (I think) that as of right now you don't have a lot of autoimmune damage going on. If you stay on gluten long enough that likely will change but that is not a change you would want.

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superfob Contributor
superfob
  • Author
Posted

Hmmm...I thought that AGA can be elevated by other circumstances, which is why I thought about additional testing. But I see what you guys are saying. I guess a large part of me just wants a better confirmation so I'll be strict about the diet - and also for social situations with friends and family. I guess another option I have is to get tested with Prometheus labs - I hear that they are much more accurate than Quest from posts on this forum. And then go gluten free afterwards regardless.

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sa1937 Community Regular
sa1937
Posted

Hi,

So one question I have is: does anyone know how much a biopsy would cost out of pocket?

I'm guessing an EGD/biopsy would cost several thousand dollars.

My lab work was done through Quest (they are who my local hospital uses for lab work that is not done in-house). My daughter, who lives in Denver, had hers done through LabCorp. We both came up highly positive...I had the biopsy and she just went gluten-free after getting the results of her labs.

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ravenwoodglass Mentor
ravenwoodglass
Posted

Hmmm...I thought that AGA can be elevated by other circumstances, which is why I thought about additional testing. But I see what you guys are saying. I guess a large part of me just wants a better confirmation so I'll be strict about the diet - and also for social situations with friends and family. I guess another option I have is to get tested with Prometheus labs - I hear that they are much more accurate than Quest from posts on this forum. And then go gluten free afterwards regardless.

Good plan.

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