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Sharonmknze

Canadian Celiac diagnosis

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Hi everyone, I had stomach and anxiety issues for a while now and doctor suggested I get the blood test for Celiac disease. A positive is from 2.9-160 and my result came back as 160!

I immediately went gluten free and recently dairy free and noticed a difference in both my stomach and anxiety. The specialist suggested a endoscopy for a standard of practice diagnosis. I don't plan to ever eat gluten again (I actually did last week to see what would happen and my nausea and anxiety was very bad) 

What are your thoughts on skipping the endoscopy? Any feedback is much appreciated. 

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2 minutes ago, Sharonmknze said:

Hi everyone, I had stomach and anxiety issues for a while now and doctor suggested I get the blood test for Celiac disease. A positive is from 2.9-160 and my result came back as 160!

I immediately went gluten free and recently dairy free and noticed a difference in both my stomach and anxiety. The specialist suggested a endoscopy for a standard of practice diagnosis. I don't plan to ever eat gluten again (I actually did last week to see what would happen and my nausea and anxiety was very bad) 

What are your thoughts on skipping the endoscopy? Any feedback is much appreciated. 

You need to be eating gluten to get  the endoscopy


 

 

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Some doctors will give a formal diagnosis if retesting 6 months or so down the line your antibodies have dropped and your symptoms have been relieved.  Worth checking if you don't want or can't go back on gluten for the endo.


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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1 hour ago, ravenwoodglass said:

Some doctors will give a formal diagnosis if retesting 6 months or so down the line your antibodies have dropped and your symptoms have been relieved.  Worth checking if you don't want or can't go back on gluten for the endo.

I was thinking of getting my blood test done again to see what the results would be. I definitely do not plan on going back on gluten! 

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1 hour ago, Victoria1234 said:

Skip it if you don't ever want to eat gluten again. It will be a waste of time and money.

Luckily it is covered here in Canada with our health care, but I definitely do not plan on eat gluten again! I'm sure I've done enough damage... Time to reverse it. 

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I'm Canadian and don't have a endoscopy diagnosis... yet (had a scope done a few weeks ago, waiting on the lab results). The missing piece of info here for non-Canadians might be that specialist wait times can be quite lengthy depending on where you live, and cannot necessarily be transferred easily between provinces. Not sure what OP's timeframe is looking like, but GI appointments can run in the 6-12mo wait range and that's in a large city. And if like me, you moved between provinces while waiting for an appointment, you have to start over (great fun).

I recently saw a GI who was willing to do one despite the fact that I have been gluten-free for quite a while. So you can get an endoscopy done, it's just that a negative result may not mean much. Our discussion was that although a negative result would not make a difference to my treatment, I would find it valuable to know to what extent my intestines might be damaged and to have some validation if I did test positive.

While validation was important to me personally, I've not found it to matter tremendously from an external perspective in Canada. Since we have public healthcare, you will not be denied coverage for investigations/interventions relating to celiac disease as long as they are requested by an MD through the proper channels. I've never seen an institution here ask for formal documentation of celiac disease for alternate accommodations either. So with a mega positive blood test, I think you would be totally fine.

For me, the validation thing comes from the frustration of having to tell a 5 minute story explaining my medical history and how I came to be in diagnostic purgatory every time I see a new doctor. It's a pain, and I always worry I'll meet someone who doesn't take me seriously.

So... tl;dr - blood test should be enough in Canada, and if you have a good GI they'll do an endoscopy on you even if you're gluten-free (though you risk a false negative, as others have pointed out).

 

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