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Absolute Frustration Getting Tested In Canada

jvdb

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jvdb Rookie
jvdb
Posted

Does anyone in Canada have tips for streamlining the process to get tested for Celiac in Canada?

 

I have experienced stomach issues for about 10 years and not thought much of it, I assumed diarrhea 4-5 times a week was normal.  It is amazing how you can cope with something for so long that it seems normal.  3 Years ago I told my GP of my stomach troubles including undigested food, incredible urgency, diarrhea nearly every day, stomach inflating like a balloon every single day, painful cramping and spasming, the works.  His response?  "Oh you probably have IBS" and left it at that.  This seems to be a very common thing for doctors to say.

 

Fast forward to this year and I have paid close attention to my diet and the consequences of some of the foods I eat, I realized that lactose causes huge issues for my and eliminated it from my diet, solving about 60% of my tummy troubles.  My sister suggested that I should get tested for celiac considering I still have troubles despite eliminating all dairy ingredients completely and because 2 of our extended family members have been diagnosed with Celiac.

 

At first I brushed off my sister's suggestion but then started looking into celiac disease and realized how many MORE symptoms I have that I never associated with my tummy troubles including incredible fatique despite healthy diet and sleeping patterns, muscle cramps, and adult cystic acne despite eating little to no processed foods.  I realized I had to get tested..... and figured great this should be easy, just a blood test to start.  WAS I EVER WRONG:

 

 

 

 

I went to see my GP, told him I suspected celiac and told him exactly why it was a good idea for me to have a gluten sensitivity test.  He isn't one for words and said "fine, I will refer you to a gastroenterologist".  They do blood tests right in my doctor's office but he did not order one.  I figured a referral to a gastroenterologist was a good idea and decided not to push for the blood test since I had already asked for it and he decided not to do it.

 

Now I find out that I will not even get to see the gastroenterologist for over two months so I asked the Canadian Celiac Society if there was any way to at least get a blood test in the mean time.  They were very helpful and informed me that my province covers the cost of gluten sensitivity tests and that I could go to a quick care clinic and ask for one.  I did as they suggested and specifically stated I WANTED A BLOOD TEST, so the doctor ordered it for me thank goodness.  Fast forward a week and I am waiting for results.  I called the lab to see if my results were in and they informed me that the requesition sent with the sample was incomplete and that the clinic where the blood was drawn needed to contact them, they realized I was the patient and refused to speak to me any more regarding the issue (they do not handle patient inquiries).  I called the clinic where the blood was drawn and they said that they had not received any notice that there was an issue with the requesition (it was sent 7 days ago), so I suggested that maybe they should speak with the lab directly and they refused saying that if there was an issue with the sample the lab would contact them.  HELLO ITS BEEN A WHOLE WEEK since they received your sample, is it that hard to speak with the lab and get the information sorted out?

 

Although a registed nurse myself neither the clinic nor the lab will take me seriously because to them I am "just the patient".  I am getting incredibly frustrated.  The lab has my sample but refuses to run it due to missing information on the req and they refuse to RE -contact the clinic about this.  The clinic refuses to speak with the lab saying "if there is an issue they will contact us".  I have a feeling this test is going to get lost and never get run.

 

I know some pharmacies sell an at home celiac test for $50, but we are strapped for cash right now and it seems silly to spend money on something that is covered by my province anyways.

 

Anyone else have frustrations with Celiac testing in Canada?

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Porcelina Contributor
Porcelina
Posted

I live in Ontario and bought an at home kit from an online store. The blood test at the time (about 1.5 years ago) was not free to get done and I don't believe it is yet. My friend was recently diagnosed and she had to pay $90 for it. 

 

My dr told me my IBS was a parasite, which I knew was wrong, so I kept a food journal and discovered that wheat gave me the runs and whole wheat caused my intense stomach cramps.

 

Im not sure what province you're in, but if Ontario, I would question if they even did the test if you didn't have to pay for it.  Otherwise, keep hounding your doctor and/or the lab or even better, order the kit from online.  Good luck.

Does anyone in Canada have tips for streamlining the process to get tested for Celiac in Canada?

 

I have experienced stomach issues for about 10 years and not thought much of it, I assumed diarrhea 4-5 times a week was normal.  It is amazing how you can cope with something for so long that it seems normal.  3 Years ago I told my GP of my stomach troubles including undigested food, incredible urgency, diarrhea nearly every day, stomach inflating like a balloon every single day, painful cramping and spasming, the works.  His response?  "Oh you probably have IBS" and left it at that.  This seems to be a very common thing for doctors to say.

 

Fast forward to this year and I have paid close attention to my diet and the consequences of some of the foods I eat, I realized that lactose causes huge issues for my and eliminated it from my diet, solving about 60% of my tummy troubles.  My sister suggested that I should get tested for celiac considering I still have troubles despite eliminating all dairy ingredients completely and because 2 of our extended family members have been diagnosed with Celiac.

 

At first I brushed off my sister's suggestion but then started looking into celiac disease and realized how many MORE symptoms I have that I never associated with my tummy troubles including incredible fatique despite healthy diet and sleeping patterns, muscle cramps, and adult cystic acne despite eating little to no processed foods.  I realized I had to get tested..... and figured great this should be easy, just a blood test to start.  WAS I EVER WRONG:

 

 

 

 

I went to see my GP, told him I suspected celiac and told him exactly why it was a good idea for me to have a gluten sensitivity test.  He isn't one for words and said "fine, I will refer you to a gastroenterologist".  They do blood tests right in my doctor's office but he did not order one.  I figured a referral to a gastroenterologist was a good idea and decided not to push for the blood test since I had already asked for it and he decided not to do it.

 

Now I find out that I will not even get to see the gastroenterologist for over two months so I asked the Canadian Celiac Society if there was any way to at least get a blood test in the mean time.  They were very helpful and informed me that my province covers the cost of gluten sensitivity tests and that I could go to a quick care clinic and ask for one.  I did as they suggested and specifically stated I WANTED A BLOOD TEST, so the doctor ordered it for me thank goodness.  Fast forward a week and I am waiting for results.  I called the lab to see if my results were in and they informed me that the requesition sent with the sample was incomplete and that the clinic where the blood was drawn needed to contact them, they realized I was the patient and refused to speak to me any more regarding the issue (they do not handle patient inquiries).  I called the clinic where the blood was drawn and they said that they had not received any notice that there was an issue with the requesition (it was sent 7 days ago), so I suggested that maybe they should speak with the lab directly and they refused saying that if there was an issue with the sample the lab would contact them.  HELLO ITS BEEN A WHOLE WEEK since they received your sample, is it that hard to speak with the lab and get the information sorted out?

 

Although a registed nurse myself neither the clinic nor the lab will take me seriously because to them I am "just the patient".  I am getting incredibly frustrated.  The lab has my sample but refuses to run it due to missing information on the req and they refuse to RE -contact the clinic about this.  The clinic refuses to speak with the lab saying "if there is an issue they will contact us".  I have a feeling this test is going to get lost and never get run.

 

I know some pharmacies sell an at home celiac test for $50, but we are strapped for cash right now and it seems silly to spend money on something that is covered by my province anyways.

 

Anyone else have frustrations with Celiac testing in Canada?

jvdb Rookie
jvdb
Posted
  • Author

Thanks Porcelina,  its too bad people have to pay out of pocket even when technically Canadian healthcare should cover it.  I know it IS covered in Manitoba and I delivered the requisition to the lab myself and clearly read that "Gluten Sensitivity". 

 

It is so frustrating that doctors don't seem to care at all.  Do you think I am asking for a blood test that will likely lead to an endocospy because it sounds like FUN?  Do you think I WANT to stop eating bread, pasta, pizza and countless other things just because I FEEL like it?  The only reason I have been pushing so hard for this test is because I know what I am experiencing is not normal and I'd prefer Celiac over Crohns, Colitis, Colon Cancer or anything else and I know that it is a smart first step in figuring out the cause of all this suffering.  "Oh It's probably just IBS" has got to be the laziest excuse ever, sorry I just told you I have gotten diarrhea (among other symptoms) nearly every day for 10 years... thanks a lot.

 

Sorry for the vent but I am actually that the very system I work in is so inefficient, it is the frustration talking now.

kareng Grand Master
kareng
Posted

Thanks Porcelina,  its too bad people have to pay out of pocket even when technically Canadian healthcare should cover it.  I know it IS covered in Manitoba and I delivered the requisition to the lab myself and clearly read that "Glucose Sensitivity". 

 

It is so frustrating that doctors don't seem to care at all.  Do you think I am asking for a blood test that will likely lead to an endocospy because it sounds like FUN?  Do you think I WANT to stop eating bread, pasta, pizza and countless other things just because I FEEL like it?  The only reason I have been pushing so hard for this test is because I know what I am experiencing is not normal and I'd prefer Celiac over Crohns, Colitis, Colon Cancer or anything else and I know that it is a smart first step in figuring out the cause of all this suffering.  "Oh It's probably just IBS" has got to be the laziest excuse ever, sorry I just told you I have gotten diarrhea (among other symptoms) nearly every day for 10 years... thanks a lot.

 

Sorry for the vent but I am actually that the very system I work in is so inefficient, it is the frustration talking now.

Glucose test is not for Celiac! It's has to do with blood sugar. I'm sorry.

jvdb Rookie
jvdb
Posted
  • Author

Glucose test is not for Celiac! It's has to do with blood sugar. I'm sorry.

Sorry BAD TYPO, definitely did not mean glucose.  It said (Celiac) in brackets too:)

 

 

....Wow.  I'm a registered nurse, I definitely know the difference but feel pretty stupid that I can't spell properly tonight.

Porcelina Contributor
Porcelina
Posted

Just blame a glutenized brain ;D We'll forgive ya!  I'll also add that its not fair that men have to pay for a PSA test. Theres a lot of dumb things, but at least we have most health care covered unlike our neighbours south of us.

nvsmom Community Regular
nvsmom
Posted

(hugs) What a mess. I'm in Alberta, and it's a hassle to get tested here, and they only do one "preliminary" test, but I didn't experience a mess like that!  :( Can you get another lab requisition?

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Rucko Apprentice
Rucko
Posted

Now you know which clinic not to go back to...  It might be faster just to go to another clinic if your complaints are falling on deaf ears.  

 

I also experienced a lot of incorrect diagnoses over the years.  I didn't have the classic symptoms so they always thought it was something else.  Once I had a diagnosis though, my adult daughter couldn't get a blood test because she supposedly didn't have any symptoms.  It's protocol though if you're a first degree relative!  I told my doctor that she couldn't get a test and he said to send her to him and he'd request one.  And she is celiac as it turns out.  But my point is, you shouldn't have to rely on chance circumstance just to get tested.

 

However, from your doctor's point-of-view, since he suspects you of IBS, he may think he's doing you a favor sending you to the gastroenterologist right away.  And a two month wait isn't bad.  You would think he'd want to rule out celiac first though, just to save the specialist time.  Especially since testing extended family is recommended and you do have that happening in yours.

Porcelina Contributor
Porcelina
Posted

I hear you. I feel like I have to lie to my doctor to get her to listen to me sometimes. If I don't have enough 'symptoms' for her to believe me, I have to exaggerate to tell her what she WANTS to hear. If only drs would listen to their patients. We know our bodies best.

jvdb Rookie
jvdb
Posted
  • Author

I agree Porcelina, I will be especially grateful for the gastroenterologist referral if this does not end up being celiac since at least he will know the next step in figuring this out. What frustrates me is that three years ago when I told him about all of my symptoms he just said "probably just ibs" and didn't even ask if I wanted to look into it. Because I have experiences these symptoms for so long they seems normal to me, however looking back on it if a 22 year old girl tells you she gets abdominal pain, extreme fatigue and 80% of her bowel movements are diarrhea that is NOT normal or something to be brushed off.

Porcelina Contributor
Porcelina
Posted

I agree Porcelina, I will be especially grateful for the gastroenterologist referral if this does not end up being celiac since at least he will know the next step in figuring this out. What frustrates me is that three years ago when I told him about all of my symptoms he just said "probably just ibs" and didn't even ask if I wanted to look into it. Because I have experiences these symptoms for so long they seems normal to me, however looking back on it if a 22 year old girl tells you she gets abdominal pain, extreme fatigue and 80% of her bowel movements are diarrhea that is NOT normal or something to be brushed off.

Oh I know all about the 'ibs' thing. My doctor told me my IBS was a parasite. This was over 7 years ago. Its only been ONE year ago that I pinpointed wheat as a problem.

0range Apprentice
0range
Posted

Hi! I'm so sorry to hear that you are going through this. Not knowing what is wrong (but that something is wrong!) is frustrating. I, too, live in Canada and have been diagnosed with IBS. My "IBS" really might just be an extension of my autoimmune thyroid disease and hypothyroidism (which can cause constipation/diarrhea) - but I find that medicine rarely connects the dots, and just focuses on symptoms in a specific organ or system on an individual basis. I had my doctor tell me, when I kept coming back to her about my stool looking odd, that "your stool is affected by your family members. We have like, a million gut bacteria or something! We can have all sorts of weird stool!". I was at a loss for words actually, haha. They just assume that that is what it is, unless you have bloody stool or mucus in it. I had the former, so they eventually let me have a colonoscopy which showed mild colitis. I hope you get some answers soon! 

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