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Dr Won't Test Me For Celiac Because I Don't Have "classic" Symptoms

TorontoGal

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TorontoGal Newbie
TorontoGal
Posted

Thanks in advance to anyone who reads or responds to this!

 

I'm hoping that someone will agree with me that I should be tested, because I'm starting to doubt myself. I'm so tired of my doctor flat out refusing to test me because I don't have classic symptoms. I'm always told that it's probably just IBS, and that's the end of it - I just have to live with it. Or that I need to drink more water (which I've upped quite a bit, but still no difference). I've heard that Celiac can cause a whole bunch of symptoms, so I'm just going to list a few things I've experienced during the past 13 years (I'm 26 now):

 

  • Constipation - for at least 3 days every week (this has gotten worse, especially in the past 2 years)
  • Horrible stomach pain - sometimes I can't stand up straight because it hurts not to be curled up in a ball
  • Bloating - sometimes to the point that look pregnant
  • Excessive gas
  • Headaches
  • Very thirsty all the time - I've even been tested for diabetes because of this (came back negative)
  • Dizziness
  • Fatigue - sometimes this is mixed with insomnia though, if that makes sense. I'll be extremely tired, but just can't fall asleep
  • Sometimes I can't think straight - I don't know how to describe it. I'll know what I'm trying to say, but I can't say it properly. I've often worried that my co-workers must think I'm on something because sometimes it's REALLY noticable.
  • Horizontal rippling in my thumb nails - this has only been for the past year. I've also noticed it's started on my toenails.

I'm sure there are more, but I don't want to write a whole novel here lol. For the past couple of months, I've started cooking everything from scratch, and eliminated gluten from my diet most days. On those days, I feel kind of normal, but on the weekends if I go out with friends and have a burger, for example, I know I'll pay for it for days.

 

I'm not saying this is definitely what I have, but I feel like my doctor shouldn't think it's impossible. I just want to figure out what it is so I can stop feeling so miserable all the time. Thanks again for reading!

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kareng Grand Master
kareng
Posted

Open Original Shared Link

Common symptoms of celiac disease may include one or more of the following:

Frequent abdominal bloating and pain

Chronic diarrhea or constipation

Vomiting

Weight loss

Pale, foul-smelling stool

Iron-deficiency anemia that does not respond to iron therapy

Fatigue

Failure to thrive or short stature

Delayed puberty

Pain in the joints

Tingling numbness in the legs

Pale sores inside the mouth

A skin rash called dermatitis herpetiformis

Tooth discoloration or loss of enamel

Unexplained infertility or recurrent miscarriage

Osteopenia (mild) or osteoporosis (more serious bone density problem)

Peripheral neuropathy

Psychiatric disorders such as anxiety or depression

TorontoGal Newbie
TorontoGal
Posted
  • Author

Open Original Shared Link

Common symptoms of celiac disease may include one or more of the following:

Frequent abdominal bloating and pain

Chronic diarrhea or constipation

Vomiting

Weight loss

Pale, foul-smelling stool

Iron-deficiency anemia that does not respond to iron therapy

Fatigue

Failure to thrive or short stature

Delayed puberty

Pain in the joints

Tingling numbness in the legs

Pale sores inside the mouth

A skin rash called dermatitis herpetiformis

Tooth discoloration or loss of enamel

Unexplained infertility or recurrent miscarriage

Osteopenia (mild) or osteoporosis (more serious bone density problem)

Peripheral neuropathy

Psychiatric disorders such as anxiety or depression

Thank you kareng! I feel like I should just print out the information on that website and bring it to my doctor. I don't understand why she's so against testing.

BlessedMommy Rising Star
BlessedMommy
Posted

I really don't get why some doctors put up such a fuss about testing. I'm sorry that you're having difficulty! 

 

If you can't convince your doctor to order it, it's possible to order the test yourself and pay out of pocket if you have to, but it's probably best to convince your doctor to order it. (especially if you have insurance)

HavaneseMom Explorer
HavaneseMom
Posted

I had all of your symptoms, except for the nail problem. My doctor wouldn't test me either because I didn't have diarrhea. When I finally gave up on him and went to a Gastro doctor I was tested right away. I'm guessing you are in Canada based on your name. Can you go to a Gastro doctor easily with your health care system? I really think for the most part Gastro doctors are willing to test and diagnose Celiac, much more so than general doctors.

nvsmom Community Regular
nvsmom
Posted

Those are all pretty common symptoms except D is more common that C, but constipation is by no means rare in celiac disease. I sure saved on toilet paper back before I started eating gluten-free.   ;) LOL

 

Someone around here said that IBS is doctor talk for "I Be Stumped".  I would be willing to bet that a good third of the people around here were told they have IBS or that "it's just the way it is for you".  Your symptoms are not normal, and they certainly could be due to celiac disease, so I would try to get tested if I was you. Keep eating gluten until testing is done.

 

I know it's really hard to get tested for celiac disease in Ontario. Worst case scenario, you could order tests and pay for them yourself.  I personally did the home Biocard test (total serum IgA control test and tTG IgA), and it cost me about $50.

 

Hang in there!

elless Rookie
elless
Posted

I have the horizontal nail ripples as well. Your symptoms sound like a carbon copy of mine. Except I have the D and C alternating. Most recently since I've increased gluten levels while testing, I've started getting the tingling in the fingers as well. Drs just seem to be clueless when it comes to celiac disease and gluten sensitivity.

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TorontoGal Newbie
TorontoGal
Posted
  • Author

Thank you so much everyone for the replies!

Yeah my doctor thinks if no one in my family has it, then I don't...but no one in my family has been tested, so I don't get that theory. Most relatives on my mom's side do have bad stomach problems though, including my mom.

I was in the pharmacy and bought something called Biocard Celiac Test. I'm not sure if I should rely on that or not, but maybe a positive result would push my Dr to test me. Or maybe it will come back negative.

I should probably look into finding a Gastro Dr anyway, because yeah, I think IBS is just BS lol there's a reason why I feel so horrible all the time. Why are doctors so difficult?!?

TorontoGal Newbie
TorontoGal
Posted
  • Author

Those are all pretty common symptoms except D is more common that C, but constipation is by no means rare in celiac disease. I sure saved on toilet paper back before I started eating gluten-free.   ;) LOL

 

Someone around here said that IBS is doctor talk for "I Be Stumped".  I would be willing to bet that a good third of the people around here were told they have IBS or that "it's just the way it is for you".  Your symptoms are not normal, and they certainly could be due to celiac disease, so I would try to get tested if I was you. Keep eating gluten until testing is done.

 

I know it's really hard to get tested for celiac disease in Ontario. Worst case scenario, you could order tests and pay for them yourself.  I personally did the home Biocard test (total serum IgA control test and tTG IgA), and it cost me about $50.

 

Hang in there!

Yes, I just bought that Biocard test! Was it difficult to use?

nvsmom Community Regular
nvsmom
Posted

Yes, I just bought that Biocard test! Was it difficult to use?

 

No, not at all. My only problem was getting enough blood after the skin prick. I recommend running your hand under warm/hot water and then swinging your hand around to get the blood pooled into your fingers.

 

I had a very weak positive with mine, partially due to less than ideal amount of blood in the test. A few weeks later when I retested at the doctor, after really loading up on gluten, my tTG IgA test was extremely positive - Just remember that a positive is a positive on those tests... like a pregnancy test.

 

Let us know how it goes!  :)

elless Rookie
elless
Posted

Just curious,  where did you guys buy the biocard test at?  Do they sell it at cvs or walgreens? 

Georgia-guy Enthusiast
Georgia-guy
Posted

Just curious, where did you guys buy the biocard test at? Do they sell it at cvs or walgreens?

I second this question!

Georgia-guy Enthusiast
Georgia-guy
Posted

Found the test online. Price is currently $55 CANADIAN (About $50 US)

Open Original Shared Link

nvsmom Community Regular
nvsmom
Posted

I bought my at a local health/whole food store called Amaranth. They had it in stock special for celac awareness month a few years back, they don't normally carry it though.

TorontoGal Newbie
TorontoGal
Posted
  • Author

I got mine at Rexall, but I'm in Canada. I saw that you can get it on Amazon.com too though.

psawyer Proficient
psawyer
Posted

The blood tests to screen for celiac disease are not covered by OHIP. Ontario is the only province where they are not. That might be clouding the doctor's judgement.

TorontoGal Newbie
TorontoGal
Posted
  • Author

The blood tests to screen for celiac disease are not covered by OHIP. Ontario is the only province where they are not. That might be clouding the doctor's judgement.

Hello fellow Ontarian :) thank you for your reply. My Dr also told me OHIP doesn't cover the testing. I told her I was willing to pay myself, but she just said it wouldn't be worth it for me :\ soooo frustrating!

BlessedMommy Rising Star
BlessedMommy
Posted

That is very frustrating! Does Ontario have the option of private "direct to consumer" labs where you can order yourself and pay OOP without permission from your doctor? I know that some folks in the states have had good luck with that option if their doctor or insurance company refused to cooperate.

psawyer Proficient
psawyer
Posted

To the best of my understanding, tests in Ontario must be ordered by a doctor. Even if the patient pays for a test that is not covered by OHIP, such as PSA, the results belong to the doctor who ordered them. To gain access, the patient must go through the doctor (or another doctor that the ordering doctor requested be sent a copy).  :angry:

BlessedMommy Rising Star
BlessedMommy
Posted

That is awful!

 

OP, I guess that your best shot is simply be firm with the doctor and insist that it is worth it for you to order out of pocket. And if that doesn't work, shop around for a doctor who will help you.

Georgia-guy Enthusiast
Georgia-guy
Posted

OP, I'm not sure how far you are from the USA border, but it may be worth it to look into coming to a private lab in the USA to get the tests done, then bring the results to your doctor. That would bypass the OHIP requiring doctor ordering the test, and your doctor saying that it's not worth it to pay out of pocket. I know that my insurance didn't want to pay for the tests (I live in the USA) so I ended up going to a private lab myself.

BlessedMommy Rising Star
BlessedMommy
Posted

^Those were my thoughts as well. If you live in Ontario, it may be worth your while to cross the border over to Michigan, New York, Wisconsin, or Minnesota. (depending on whichever one of those is closest to the part of Ontario you live in) 

TorontoGal Newbie
TorontoGal
Posted
  • Author

Thanks so much for your advice BlessedMommy, Georgia_guy,and psawyer. I'm about a 1.5 hour drive from Buffalo, NY, so that's definitely an option I'll keep in mind.

I still haven't done that Biocard test I bought - trying to eat a lot of food containing gluten first. I'm nervous to take it. I don't want to wish for any health problems, but I'll be upset if it comes back negative. I just want to know what's causing my problems so that I can do something about it. I guess even if it's negative, it's something I can cross off the list. If it's positive, I'm hoping that will push my doctor to do testing. I'm planning to do the Biocard test next week. Thank you again for your responses :)

Georgia-guy Enthusiast
Georgia-guy
Posted

Remember, the biocard test is not a full panel for celiac. It is a good place to start (and a positive on it might be enough to get your doctor to listen). If I'm not mistaken, it tests for IgA only. IgA has a higher "false negative" percentage because a lot of celiacs are IgA deficient. That being said, if celiac makes sense, and biocard says it's negative, I would still pursue an IgG test panel, and maybe an IgA total count to see if it's low. I know you are hesitant about "hoping for a positive", so look at it how I did: "looking for an answer"

nvsmom Community Regular
nvsmom
Posted

Remember, the biocard test is not a full panel for celiac. It is a good place to start (and a positive on it might be enough to get your doctor to listen). If I'm not mistaken, it tests for IgA only. IgA has a higher "false negative" percentage because a lot of celiacs are IgA deficient. That being said, if celiac makes sense, and biocard says it's negative, I would still pursue an IgG test panel, and maybe an IgA total count to see if it's low. I know you are hesitant about "hoping for a positive", so look at it how I did: "looking for an answer"

The Biocard test actually tests for the tTG IgA (anti tissue transglutiminase immunoglobulin A) as well as the (total serum) IgA. There are two "windows" on the test stick, sort of like a pregnancy test. The first window will show a line if you have adequate levels of IgA (to prevent false negative) and the second window will show a line if you have abnormally high tTG IgA. It does not give you numbers, but just a positive or a negative.... And like any tTG IgA test, there is a 5-25% chance of a false negative test result. (see page 12 of thsi report Open Original Shared Link

 

That being said, it is good to get IgG based tests (tTG IgG, DGP IgG) as well because some celiacs test negative in the IgA based tests (tTG IgA, DGP IgA, EMA IgA) even if their IgA is not deficient... If you can get access to the tests that is.  My doctors would only give the tTG IgA and then the EMA IgA AFTER the tTG IgA was positive. No other tests were an option so I sort of understand how frustrating denied access to tests can be.

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