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squirmingitch

Member Since 01 Nov 2011
Offline Last Active Private
*****

Posts I've Made

In Topic: Is The Endoscopy Even Worth It?

Yesterday, 06:57 PM

kabons, here is another reason to get a dyed in the wool dx from a GP or GI. You are 20, likely you will have kids some day & since celiac is a genetic disease it's more than possible one or more of your kids could have it. If you have an official dx then it's MUCH easier to get pediatric docs to take the disease seriously & test your kids every couple years b/c of the genetic connection. Your kids, if they end up with celiac, will need an official dx in order to make sure their schools &/or the military take their dietary needs seriously.

Now, if you can get a doc to dx you based in your blood panel then GREAT! That will work. if not, then you will need to consider how this will affect your kids if you don't have an official dx.


In Topic: Best Burgers In America

27 February 2015 - 07:10 PM

Boy I sure wish I could go with you! Enjoy one for me!!!


In Topic: 10 Year Old With Osteoporosis

19 February 2015 - 04:39 PM

Here is what the U of Chicago Celiac Disease Center (1 of the leading celiac centers) says about the gluten challenge for endoscopy:

http://www.curecelia...luten-challenge

 

"Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten."


In Topic: Diagnosed With Gluten Rash By 3 Doctors Without Biopsy But Bloodwork, Endosco...

18 February 2015 - 05:14 PM

I am curious to know why you were given the celiac blood panel & endoscopy 3 years ago. What led anyone & whom to suspect you had celiac disease? 

You should get copies of the lab results of both the blood & endoscopy & if you would please post them here. We have people who are very experienced in reading those. It's possible you were not given the complete blood panel -- it happens all too often. Also, on the endoscopy they may not have taken a proper # of samples -- that happens all too often too. At the time of the bloods & endoscopy had you been on oral steroids or received a shot of steroids within the 2 months preceding? If so, that can make the tests give a false negative. Lastly, there is the factor that those of us with dh test negative on the celiac blood panel 60% of the time. We also have a lot of negatives on the endoscopy. So to answer your original question ~~~ it is entirely possible to test negative on both blood & endoscopy and still have dh. Just about the only way to have a definitive "official" "doctorified" never doubt it dx of dh is to have a positive dh biopsy. As Bartful stated; you would have to be eating gluten for 2 months prior to the biopsy. If you really feel you need to do that to remain strict on a gluten free diet then you need to convey such to your derm & insist he/she do a dh biopsy. Make sure it's done on clear skin adjacent to an active, fresh lesion. 

 

I will warn you though that if you have dh then every time you eat gluten you put more & more antibodies under your skin which is what causes the dh. It can go haywire at anytime. Just because it's not making you insane at present doesn't mean it won't flare up tomorrow or the next day in the mother of all outbreaks that makes you want to take a fillet knife & peel all your skin off. I'm not trying to scare you -- just giving you the flat out truth so you will have the information you need to make an informed decision. DH can & does come & go at will whether eating gluten or not. Once you quit eating gluten it can still come & go or it can set in & remain until all the antibodies have worked their way out of your skin. For some people it only takes a few weeks to a few months before they are free of the rash. For some, it can take years.


In Topic: Questions: Skin Biopsy Of Dh

16 February 2015 - 03:54 PM

I was never on Prednisone so your experience with it takes precedence. I was on very strong steroids that did not have tapering doses. One of them was Dexamethasone & I would have to look up the name of the other one. They had devastating consequences when they were withdrawn.