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Possible to get a FULL Celiac serum panel in CANADA?

winjer

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winjer Newbie
winjer
Posted

It seems the only blood test I have access to here in British Columbia (beyond privately ordering genetic testing) is the TTG. I'm dealing with one negative biopsy despite 4 (geez) positive TTG tests. (firs three "low-positive", now just "positive" since I've been on more gluten & more plagued with symptoms).

Would really love some more bloodwork to help confirm here as I don't have the time to wait/fight for another endoscopy. Is it possible to get the EMA or anything else in BC/Canada? I'm severely underweight and need to gain immediately, thinking a strict gluten-free (casein free too?) diet change is essential ASAP... hence unwilling to play the Canadian-waiting-game for another scope. Doctors have so far labeled me as anorexic and are now willing to consider me celiac, but I of course would like some kind of confirmation before I make the lifelong hardcore-gluten-free commitment. Financial support would be nice as well, sigh.

  • 2 weeks later...
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SiandAshs Mom Apprentice
SiandAshs Mom
Posted

Hi winjer. I am far from an expert but can maybe help a little... Do you have the results of the biopsy? Could you get them? Do you know how many samples were taken and from where? If the gastro is not really educated on celiac they may have missed the damage or not taken enough samples to get an accurate picture of your intestinal health. I would think that 4 positive Ttg tests is a pretty strong indicator that you have celiac but I can understand wanting confirmation on that. I am in Alberta and here they run the EMA test if you're tTg is positive. Could you come here for bloodwork?

Are you in the Vancouver area? If you're close to the U.S. border you could drive into the US and order your own celiac blood tests there. Open Original Shared Link. That is what I plan on doing in a couple of weeks. You would have to pay for them out of pocket but it is an option. Oh, you have to be eating gluten for the results of any blood test to be accurate so don't go gluten-free until you are satisfied with your diagnosis and testing is complete. 

I totally understand how frustrating our health care system is. There are so many uneducated doctors out there that it makes it really hard to get an appropriate diagnosis. Good luck to you :)

winjer Newbie
winjer
Posted
  • Author

Gee, thanks a ton for replying!! You've given me some great ideas to work with, but after being gluten free for about the past month... I think I'm willing to accept the celiac diagnosis at this point, at least for the time being. My health is simply too compromised to persist in eating wheat right now (I'm majorly underweight and having difficulty recovering from major colorectal surgery 1 year ago... that colorectal damage may have been driven by the undiagnosed celiac [or whatever else is making my TTG response so high... most of my history can be seen here: https://www.celiac.com/forums/topic/113356-positive-increasing-ttg-questions-re-testing-history/]). Considering my health history & TTG results, I've had a number of specialists now tell me to consider myself as celiac from here on out, rather than going through the physical/mental stress of trying to find "confirmation" that may be tricky to get, as... Canadian wait times, but above all... endoscopies often missing the damage. *shrug* -- thanks so much for your ideas (and I'm actually originally from Calgary), which I may pursue in the future... but gluten has been out of the diet for a month, I'm feeling a bit better, have gained some weight, and am just in such dire need of gaining more weight & restoring better bowel function. Tough decisions! Best of luck with your journey stateside; I'd love to hear how it goes. Also best of luck with your continued struggles in the Canadian medical system... I deffffinitely get ya! <_<

Positron Newbie
Positron
Posted
5 hours ago, winjer said:

Gee, thanks a ton for replying!! You've given me some great ideas to work with, but after being gluten free for about the past month... I think I'm willing to accept the celiac diagnosis at this point, at least for the time being. My health is simply too compromised to persist in eating wheat right now (I'm majorly underweight and having difficulty recovering from major colorectal surgery 1 year ago... that colorectal damage may have been driven by the undiagnosed celiac [or whatever else is making my TTG response so high... most of my history can be seen here: https://www.celiac.com/forums/topic/113356-positive-increasing-ttg-questions-re-testing-history/]). Considering my health history & TTG results, I've had a number of specialists now tell me to consider myself as celiac from here on out, rather than going through the physical/mental stress of trying to find "confirmation" that may be tricky to get, as... Canadian wait times, but above all... endoscopies often missing the damage. *shrug* -- thanks so much for your ideas (and I'm actually originally from Calgary), which I may pursue in the future... but gluten has been out of the diet for a month, I'm feeling a bit better, have gained some weight, and am just in such dire need of gaining more weight & restoring better bowel function. Tough decisions! Best of luck with your journey stateside; I'd love to hear how it goes. Also best of luck with your continued struggles in the Canadian medical system... I deffffinitely get ya! <_<

Or you may have had celiac disease, and your doctors prescribed surgery, thus they are guilty of malpractice and you need a lawyer.   This has happened before.  I hope that is not the case here, but with 4 positive test it seems that the doctors may see that something is wrong, and that thing might well be THEM. Good luck

squirmingitch Veteran
squirmingitch
Posted
2 hours ago, Kashmir said:

Or you may have had celiac disease, and your doctors prescribed surgery, thus they are guilty of malpractice and you need a lawyer.   This has happened before.  I hope that is not the case here, but with 4 positive test it seems that the doctors may see that something is wrong, and that thing might well be THEM. Good luck

Okay Positron.. uh, er, Kashmir, you're pushing it AGAIN! The OP is in Canada and their health system is different than the US. You need to QUIT  harassing  posters about hiring lawyers & suing doctors. 

I've had enough of you. You didn't learn the first time. I'm reporting you.

winjer Newbie
winjer
Posted
  • Author

:| ... I have been very frustrated with my medical system (and doctors, somewhat), but I *did* have clear colorectal dysfunciton for which surgery is often reccomended (although these colorectal surgeries for obstructed defectation do have  rather spotty outcomes, and it seems many people choose to live with the dysfunction-- I wish I had). I agree I was rushed into surgery without a thorough enough workup/diagnosis (and that I shouldn't have been operated on at such a low weight), although I must take the blame for that at the time, as I was anxious for resolution to my issues and had finally found "the problem", so I thought. I was told my negative endoscopy (I believe with only one biopsy; after a weakly-followed gluten challenge) ruled out celiac disease and that the colorectal issue must be primary. I now see that was wrong, but as I'm in Canada I don't believe legal action is even possible, regardless of whether I truly feel it would be demanded in this situation.

squirmingitch Veteran
squirmingitch
Posted

We do what we have to do at the time based upon the information given us and considering how we are feeling & what we are going through at the time winjer. Hindsight is 20/20. We do the best we can. After that, the best we can do is move forward.

{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}

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1desperateladysaved Proficient
1desperateladysaved
Posted

Currently I am looking for the full  list of celiac tests.

Dee

Nolev Newbie
Nolev
Posted

Open Original Shared Link

this is my favourite document showing how to test and diagnose celiac

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      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
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