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Blood Test Positive, Andoscopy Next Please Help


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#16 tarnalberry

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Posted 12 December 2004 - 01:59 PM

No, I have read and studied the symptoms that celiacs can have, and yes, I am fully aware that it can be life-threatening, both physical, mentally, and emotionally. The damage it can put a body through physically and psychologically can have far far reaching consequences. That does not mean, however, that she doesn't have a valid _NEED_ for a diagnosis that a doctor may not be willing to give without a 'scope.

Additionally, what Richard says is true, and I encourage you to further look into it - the genes currently identified do NOT account for all cases of gluten-intolerance or celiac. There are biopsy-confirmed celiacs who have none of the genes identified, and those who are gluten-intolerant have been genetically tested clear as well. They are continuing to work on identifying the full set of genetic markers that predispose people to intestinal damage from gluten.

I am not saying she doesn't have celiac disease, and never did say that. She may well have it, given the symptoms she describes. (Quite likely, I'd say.) But the fact that she's decided to continue with the endoscopy despite knowing that gluten causes her problems is indicative that she has a reason for doing this. There have been a few other threads discussing some very valid reasons for subjecting yourself to the damage in order to get a "definitive" diagnosis from a doctor - which a genetic test is insufficient for in some cases. A lot of this depends on her doctor (or potential doctors).

If you look back over my old posts, you'll see that I'm not biopsy diagnosed myself, and you're right - I don't have nausea and vomitting when I get gluten (though I do feel like crap). I did just go with inconclusive blood tests and a dietary challenge. But that resolution is not for everyone, and this is definitely a case when "one size does not fit all".
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

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#17 tom

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Posted 12 December 2004 - 07:06 PM

That does not mean, however, that she doesn't have a valid _NEED_ for a diagnosis that a doctor may not be willing to give without a 'scope.

I never meant to imply to not get a scope. My position is that she's already said gluten incapacitates her, and under these circumstances it's not necessary to continue daily "bouts of nausea, vomiting, abdominal pain etc" for an endoscopy.

I'd be willing to bet that of the people in line ahead of her, those who are already gluten-free would even gladly trade appts if they'd been through the symptoms she's currently dealing with.

Backing away from Utopia, the next best choice is to stop the poison and feel good throughout this holiday season and have an endoscopy which no1 has yet claimed will be significantly different after a couple weeks gluten-free.

In the past week on thus forum alone i've seen 3 out of 3 newly gluten-free ppl just RAVE at how much better they feel every day.
E-VER-Y DAY!
No more "bouts of nausea, vomiting, abdominal pain etc".
Better.
Every day.
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#18 tom

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Posted 12 December 2004 - 07:22 PM

Additionally, what Richard says is true, and I encourage you to further look into it - the genes currently identified do NOT account for all cases of gluten-intolerance or celiac. There are biopsy-confirmed celiacs who have none of the genes identified, and those who are gluten-intolerant have been genetically tested clear as well. They are continuing to work on identifying the full set of genetic markers that predispose people to intestinal damage from gluten.

Do either of you have a link handy pointing to proven celiacs w/out DQ2 or DQ8 ?
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#19 tom

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Posted 12 December 2004 - 07:35 PM

Ahhh never mind, found PLENTY. hehehe :rolleyes:
Didn't know that the latest was that as high as 5% of celiacs don't have DQ2 or DQ8.
My apologies. I thought it was far lower.

I'll never back off the assertion that our thread-creator should start gluten-free asap. The blood work is done. Still haven't heard of a doc scheduling biopsies 3 wks apart.
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07


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