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superfob

Help With Dilemma - Wait For Endoscopy?

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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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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' ;)


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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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?


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

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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.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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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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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.


Sylvia

Positive Celiac Blood Panel - Dec., 2009

Endoscopy with Positive Biopsy - April 9, 2010

Gluten Free - April 9, 2010

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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.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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