What Are The Different Types Of Testing?

[zemira]

Hello, I'm a brand spanking new user. Yep, just joined as of like, an hour ago. I'm trying to find out as much as I can about gluten intolerance and celiac disease. 

 

First, a little background. I'm a 19 year old female from rural central Alberta. I'm a small woman, 5'2 weighing in at around 110 Lbs, so I'm not overweight for sure. However, i will admit that my diet is not by any means the healthiest- you know how us young'uns are. A few years ago, my diet started becoming a little healthier when my father's doctor decided to test him for gluten intolerance, and it came back positive. Then, more testing and he was diagnosed with Celiac Disease. Then my aunties (3 of them), uncle and grandpa (all on my dad's side) got themselves tested and yes, they came back positive. So it runs in my family, and I have veritable cause for alarm. At first I was a little reluctant to even try going along with eating gluten free for my dad, but I guess I kinda got used to it. Now, I've noticed something; for his job, my dad's away 3-6 months at a time (he works overseas) and is home for maybe a month at a time. We slip off with the gluten free diet when he leaves, and we pick it back up when he gets home. (A really bad habit, I know) I'v noticed recently that while my dad's away, I sometimes get this feeling in my stomach, like acid is bubbling up into my throat or something. I get some pretty bad mood swings since I was about 13, although I suppose that's normal for a teenager. One thing I have noticed, even more recently, is that I seem to be having a harder time waking up in the morning. Usually I'm the kind of person that when the alarm goes, I'm up and about in under 2 minutes, but yeah.. that's not the case recently.

But when my dad's home and we're all eating gluten free, I feel a lot better, which leads me to believe that I must have some kind of gluten sensitivity. When my father and my aunts got themselves tested, they said that the doctor had inserted a probe or something down their throats so that the doctor could see what the gluten was doing to the inside of their bodies. (forgive me, I'm not sure of the technical terms or anything An endoscopy, I believe it's called? Correct me if I'm wrong. ) So, I went to the doctor out of concern for my own health and asked that I get tested for any kind of gluten sensitivity because of my family's medical history and such, and the doctor told me they were gonna just take blood and run tests on it. Knowing from what my father told me, his blood results came back negative as well, I asked the doctor if he could do the test that my dad's doctor did on him, and my doctor looked at me like I was some kind of alien for even suggesting that.. like, he had no clue what I was even talking about?? Anyways, so my blood results came back negative but I know I'm not out of the woods yet.

 

So, I figured I would come here for advice from people who have likely gone through all of this before- what should I do next? Should I just go back to the doctor and ask for another test? I mean, I'll feel like an idot, because I had negative results with the bloodwork and he clearly had no clue what I was talking about and said I had nothing to worry about at all and just.. ugh. I guess I don't even know what I'm trying to say other than I don't know what to do :/

[kareng]

What test did they do on your dad that your doc thought was odd?

[zemira]

 

the doctor had inserted a probe or something down their throats so that the doctor could see what the gluten was doing to the inside of their bodies. (forgive me, I'm not sure of the technical terms or anything   An endoscopy, I believe it's called? Correct me if I'm wrong. )

[nvsmom]

In Calgary, they only run the tTG IgA and total serum IgA blood tests, and then the EMA IgA if the tTG IgA  were abnormal. they call it their celiac panel but it is NOT a full celiac panel. This is:

 

• (anti-tissue transglutiminase) tTG IgA and tTG IgG - this is the doctors' favourite
• (deaminated gliadin peptides)  DGP IgA and DGP IgG - these are newer and VERY good tests
• total serum IgA - a conrol test to make sure you make enough IgA for tests to be valid (5% of celiacs don't)
• (antiendomysial) EMA IgA
• (antigliadin antibodies) AGA IgA and AGA IgG - these are older tests and not as reliable

Take a look at this report for more information on the tests: Open Original Shared Link

 

In the past it was said that up tp 25% of celiacs had negative blood tests, but I think that number is falling with the newer DGP tests. Anyway, it is very possible to have negative blood tests and a positive endoscopic biopsy. The endoscopy is when they go in through the mouth with a tube and the biopsy is when they take samples (ideally 6 or more) to look at microscopically.

 

If you are having more tests done, make sure you are eating gluten prior to testing. The recommendations are usually 1-4 servings of gluten (ie. bread slices) per day for 4-12 weeks prio to testing - for blood tests, it is usually recommended to eat 2+ slices of bread per day for around 12 weeks.

 

It is possible that you have a non-celiac gluten intolerance/sensitivity (NCGI) which is MUCH more common than celiac disease and is thought to be linked (or even early celiac disease by some).  If all tests come out negative, you might want to try the gluten-free diet (100%) for 3-6 months to confrim it's helping.... and then stick with it for life. who wants' to feel bad, right?

 

Good luck dealing with our Alberta Heath Care....

[zemira]

Thank you so much, nvsmom!