new member - testing

[lesley42]

My first post. Have just had blood tests for celiac (family history and symptoms). My query is every website mentioning the tests say you should have some gluten in your diet beforehand. My doctor ordered the test for next day, though I pointed out I'd been avoiding gluten for two months (and felt much better and had seen improvements in blood tests since then). GP says it isn't important and won't affect results. I had an endoscopy (?) about ten years ago - I was also gluten free then, and the results showed gastritis and reflux, an SeHCAT test showed malabsorption but no celiac. Am worried that another clear test will cause false negative. Can anyone advise please\/

[Ennis-TX]

6 hours ago, lesley42 said:

My first post. Have just had blood tests for celiac (family history and symptoms). My query is every website mentioning the tests say you should have some gluten in your diet beforehand. My doctor ordered the test for next day, though I pointed out I'd been avoiding gluten for two months (and felt much better and had seen improvements in blood tests since then). GP says it isn't important and won't affect results. I had an endoscopy (?) about ten years ago - I was also gluten free then, and the results showed gastritis and reflux, an SeHCAT test showed malabsorption but no celiac. Am worried that another clear test will cause false negative. Can anyone advise please\/

You have to be consuming gluten at least half a slice of bread or a few crackers a day 12 weeks prior to the blood test, at least up to 2 weeks before the endoscope. We refer to this as a gluten challenge. I think I have a few links with relevant screening info someone else will give some others if mine or iffy, But a word of advice many find for the gluten challenge trying to take it right before bad and sleeping off the symptoms and taking OTC medicine to deal with the symptoms helps. Others can not deal with the symptoms and give it up. I have heard of people just getting by with 6-8 weeks of consuming gluten and getting a positive test.
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[cyclinglady]

Your GP does not sound like he is celiac-savvy.  Too bad  he did not take the time to pull out his phone and google Celiac disease testing protocol.  Odds are your result will be negative, leaving you in diagnostic limboland, but you might be the type to have long-lasting elevated antibodies.    You will just need wait for the lab results.  You can do a gluten challenge as Ennis suggested, but I would find another doctor if possible if you want a firm diagnosis.  Otherwise, just remain gluten free for life.  

Oh, what else could this GP be missing?  No doctor knows everything.  My neighbor, who is an  Emergency Room doctor, tells me that even with his medical training, consulting Dr. Google can be invaluable!  

[lesley42]

Thank u both for your replies. Have loads of questions but fear u are right & this test will be inconclusive. Changing docs isn’t easy in U.K. small town. Think doc is more concerned re my rapid/ dramatic weight loss. He’s booked me in for colonoscopy. Not sure why. Do I need to eat gluten for that? Test is 28 December (great Christmas!) so not much time for that either. Good to know there are others who can share my worries. I’ll let u know how it goes. Thanx agn.

 

[Jmg]

11 hours ago, lesley42 said:

My first post. Have just had blood tests for celiac (family history and symptoms). My query is every website mentioning the tests say you should have some gluten in your diet beforehand. My doctor ordered the test for next day, though I pointed out I'd been avoiding gluten for two months (and felt much better and had seen improvements in blood tests since then). GP says it isn't important and won't affect results. I had an endoscopy (?) about ten years ago - I was also gluten free then, and the results showed gastritis and reflux, an SeHCAT test showed malabsorption but no celiac. Am worried that another clear test will cause false negative. Can anyone advise please\/

Hi Lesley,

Also from UK, my doctor also told me incorrect info leading up to my test.  A lot of GP's don't understand this. My endoscopy also showed gastritis but not celiac. However I had full relief on the gluten free diet and am on it for life. 

1 hour ago, lesley42 said:

Thank u both for your replies. Have loads of questions but fear u are right & this test will be inconclusive. Changing docs isn’t easy in U.K. small town. Think doc is more concerned re my rapid/ dramatic weight loss. He’s booked me in for colonoscopy. Not sure why. Do I need to eat gluten for that? Test is 28 December (great Christmas!) so not much time for that either. Good to know there are others who can share my worries. I’ll let u know how it goes. Thanx agn.

 

Will you be having endoscopy at same time? You need to be eating gluten for that. I would stay on it till the test, at least you can eat Christmas stuff and you may be able to request a further blood test once you've been on it for some weeks? 

Once testing is complete give thought to staying gluten-free if you get relief. Some people don't test positive but still react to it. I'm one, maybe you are too?

Best of luck!

 

[lesley42]

As I suspected the surgery said 'the doctor wasn't concerned with any of the blood results'. I'm now booked for a gastroscopy (so no Christmas dinner!) I'm not sure why - but I guess it's for crohn's - I know this is a celiac site but you all seem to know a great deal. Are the 2 disorders linked in any way? My past history is a heart attack and type 2 diabetes. Also malabsorption, arthralgia and rapid weight loss. I'm very confused, but will report any results. Thanks for your support/