Newbie And Questions

[*Donna*]

Hi All!

This is my first post so if I am not doing this right then sorry! I just have a question about testing. I had the celiac blood test over 2 weeks ago--not sure which (the dr. had antigliadin or something similar written on the paper and the blood lady took 1 vile of blood) and I am wondering how long does it take to receive the results? I am a very impatient person when it comes to results! I called after 1 week, then 2 weeks (no results yet) and then again yesterday and the dr. is on vacation until the 10th of October! Does anyone know if I can call the place that took the blood and find out? (I am in Canada and had the blood taken through MDS). Also, would 1 vile of blood be enough for the celiac tests needed?

I have been through a living nightmare with these symptoms (nausea, dizziness after eating, EXTREME fatigue, chronic gastritis, brain fog and many more) and testing to figure out what is wrong and would just like to be back to normal again--whatever that is?!

Anywho, thanks for listening and sorry if this is too long!

~Donna

[Carriefaith]

Welcome

Your tests should be done by now. My previous doctors medical secretary gave me my results over the phone, but I know that this is not normal. If you know the lab that did the testing, you could call and ask them.

I am assuming that they did a Tissue Transglutamase (tTg) blood test, which is highly specific for celiac disease. You can get false negatives with this test if you were on a gluten-free diet and if you are IGA deficient.

[CarlaB]

I have nothing to add, but welcome to the board!

[jerseyangel]

Hi Donna--welcome to the board!

I don't know how things work in Canada. Here, it takes about 2 weeks--give or take.

I hope you get your results soon--and your post was just fine!

[happygirl]

Hey Donna,

Isn't this frustrating?! Anyways, we are happy you found us and hope that we can help you out with any questions, that will help lead you to better health.

I would try calling again next week (Tuesday?) ... if the results are in, the nurse should be able to give you the results.

When she does, make sure you write down each test, your score, and the reference range.

Here is the full panel they should have run:

Dr. Fassano (a leading researcher at the U of Maryland, Baltimore) says that you should have tested:

There is a particular series of blood tests called the ‘Celiac Panel”. These tests measure your immune system’s response to gluten in the food you eat.

tTG-IgA or tissue transglutaminase-IgA

AGA-IgG or Antigliadin IgG

AGA-IgA or Antigliadin IGA

Total IGA

Hope this helps--and let us know ASAP when you get the results.

Also, you might want to read this thread about testing....www.glutenfreeforum.com/index.php?showtopic=24451. It talks a lot about testing...and that just because you have negative bloodwork, doesn't mean that you don't have a potential problem with gluten.

Laura

[Terch]

Hi,

I think things in Canada are very different than in the United States. We have to wait a lot longer for results. Funny thing is that for ultrasounds and such it's 3 days. I know for most blood tests it's around two weeks. I think it's very good that your doctor even tested you for that. I waited 6 months to get into a GI specialist and he didn't do any of the blood work for celiacs just scheduled me for an endoscopy and that was 3 weeks ago with two more weeks until I see him for my appt. I have been glute free for two weeks and so if he wants to do the bloodwork after the fact I would have to go back on glute and although I don't feel better yet I am not sure I want to go back on the gluten.

Anyway, I think that things are different in Canada and especially in Ontario where we have a doctor shortage as it is.

Does anyone know why enterolab is not held in good regard by most physicians in the States?

Thank you.

[Guest Kathy Ann]

Since Dr. Fine has not published his research findings yet and allowed for official "peer review" to take place, the medical profession can't endorse him.

Enterolab has a great reputation on this board, it seems. And we are where the rubber meets the road, after all. New ideas always take time to take ahold. They are usually ridiculed and hated before they are accepted and embraced.

[Michi8]

Hi All!

This is my first post so if I am not doing this right then sorry! I just have a question about testing. I had the celiac blood test over 2 weeks ago--not sure which (the dr. had antigliadin or something similar written on the paper and the blood lady took 1 vile of blood) and I am wondering how long does it take to receive the results? I am a very impatient person when it comes to results! I called after 1 week, then 2 weeks (no results yet) and then again yesterday and the dr. is on vacation until the 10th of October! Does anyone know if I can call the place that took the blood and find out? (I am in Canada and had the blood taken through MDS). Also, would 1 vile of blood be enough for the celiac tests needed?

I have been through a living nightmare with these symptoms (nausea, dizziness after eating, EXTREME fatigue, chronic gastritis, brain fog and many more) and testing to figure out what is wrong and would just like to be back to normal again--whatever that is?!

Anywho, thanks for listening and sorry if this is too long!

~Donna

I'm sure the length of time it takes to get results differs from province to province. And I'm sure that office policies vary too.

I know that my doctor's practice will only call with a positive test...if I really want to know more info, I can call the receptionist and get some basic info on whether the tests have come back, and whether it was a positive or negative result. Otherwise, I know I can also get info through another doctor. For example, when my son had been tested for mono (test requested by our family doctor) earlier this year, the doctor in emergency (we were there for severe tonsilitis) was able to check the results through the Capital Health computer network and confirm it was actually mono.

Michelle

[*Donna*]

Thanks for all the replies. I guess I will just have to be patient until my dr. gets back from vacation. He seems to take more vacations than I change my underwear!! Sheesh!

No I am not on the gluten free diet--although very tempted to start as something is making me horribly sick after eating it, just can't figure out what--either dairy or gluten.

Terch--I am in Ontario and I hear ya about the endoscopy--took months to have mine done and the GI who did it--well lets just say, he was a bit of a moron. He took 1 biopsy of my stomach and that was it. I was told I had non-specific chronic gastritis. From what? Haven't a clue and he didn't know either. Still dealing with that. The same GI told me it was my Gallbladder causing my symptoms and removed it and well that was a mistake the symptoms are still here and worse than ever.

I am almost hoping the celiac results come back positive--you all seem VERY knowledgable and kind and would be a great source of information! Been reading a bunch on this site--wow, the best site yet!

I will try and post the results when I get them, and if positive will definately be back with a ton more questions LOL!

Thanks again guys,

~Donna

[Terch]

Since I had my endoscopy 3 weeks ago and no call from the doctor should I presume that he found nothing wrong with me?

[tiffjake]

Since I had my endoscopy 3 weeks ago and no call from the doctor should I presume that he found nothing wrong with me?

No, call. Never assume. They get busy and papers get mis-placed. I would call! That is just me.....

[Terch]

No, call. Never assume. They get busy and papers get mis-placed. I would call! That is just me.....

It's true never assume! I was just hoping that at least he didn't find anything horribly sinister.

I have an appt with him 2 weeks and I am arming myself with a lot information from this site.

Thanks

[tarnalberry]

Welcome! I'm sorry you haven't heard yet. I think it took 3 weeks for my results (in the US), but there's no reason not to call and ask.

[lorka150]

Heya Donna,

I'm also in Ontario and the results took four weeks - they had to send them to McMaster.

[*Donna*]

Heya Donna,

I'm also in Ontario and the results took four weeks - they had to send them to McMaster.

Would you happen to know the normal range for the bloodwork? My dr. said mine was normal at 17 and he said anything below 20 was normal (I keep reading anything below 10 is normal though)--I had the antigliadin test done.

~Donna

[lorka150]

Hi Donna,

I am not positive, so I don't want to lead you in the wrong direction. Someone, I'm sure, can post the correct answer.

Mind if I ask where you are in Ontario?

Think about it this way: if you FEEL better gluten-free, then GO gluten-free. You know your body better than any tests, doctors, anything. Regardless, if your symptoms subside, then you have an intolerance to gluten. You can always give it up for a few months, then do a self-test, and see how you react. Celiac or no celiac.

I hope you get your answers soon!

[*Donna*]

I am in a little town called Picton--it's close to Belleville and Trenton or about 2 hours from Ottawa and Toronto.

I think I have had the worst couple of nights of my life the last 2 days. I wake up nauseous, hot and cold sweats, stomach cramps/pain, burning across whole abdomen, dizzy and the only things I ate were handful of cereal, grilled cheese, a piece of plain bread and some chocolate chip mini cookies and drank gatorade yesterday. So that is why I think it is gluten related because everything I ate has some sort of gluten in it!

It can't be gallbladder related because I had that removed a while ago. Has got me, my husband and the dr. puzzled! And is really making me depressed because I can barely function I am soooooooo darn tired. My kids are probably tired of seeing me lay on the couch sick all the time.

I am thinking of having the full test done in Kingston when I take my daughter for her appointment in Nov. as they do it for free (I find this out after I paid $90 to be tested here--and not even the full panel!)

~Donna

[happygirl]

Donna, Please call about your ranges. Seriously, every lab is different, because they all use different to slightly different testing measures. The ones you are seeing (below 10) is from Enterolab, and he uses a MUCH different measure. Also, even if they are done the same, it might depend on the units...so a 100 on one test would be the same as 1 on another (think micro grams, grams, kilograms, etc)

[Terch]

Hi Donna,

I would definitely get in to see another doctor if you can. I don't know about the results but I do know that if you only had one biopsy taken of your stomach it's not enough. You need approx 7 samples to get accurate results. I started on the gluten free 4 weeks ago because i was like you and couldn't take feeling the way i was any longer. So far it hasn't helped but I feel better because at least I am taking care of my body by giving it a diet that is healthy and anti-inflamitory. I don't care what my doctor wants to test next i need to make myself as healthy as possible for whatever is going on with me. I hope you don't take offense but if I ate only two of the food items you mentioned in your diet that day I would be sick as well. It is up to you whether or not you want to start gluten free right now or wait to get into another doctor to do more bloodwork. I am going to go the enterolab way if my appt tomorrow is negative for celiacs. That way it doesnn't matter whether or not I am gluten free. I also went soy and dairy free as well. I have done all this on advice of my naturopath and all i can say is I have nothing to lose by doing it. I hope that you find some answers and I will be talking to my GI tomorrow and I will ask him if he did any bloodwork and how they sore it if he did and I can get back to you on that.

Hope you feel better soon.

[LKelly8]

It can't be gallbladder related because I had that removed a while ago.

You could have problems with scaring from the surgery or Open Original Shared Link.

I kid you not.

[alyNYC]

Hi Donna,

I would definitely get in to see another doctor if you can. I don't know about the results but I do know that if you only had one biopsy taken of your stomach it's not enough. You need approx 7 samples to get accurate results. I started on the gluten free 4 weeks ago because i was like you and couldn't take feeling the way i was any longer. So far it hasn't helped but I feel better because at least I am taking care of my body by giving it a diet that is healthy and anti-inflamitory. I don't care what my doctor wants to test next i need to make myself as healthy as possible for whatever is going on with me. I hope you don't take offense but if I ate only two of the food items you mentioned in your diet that day I would be sick as well. It is up to you whether or not you want to start gluten free right now or wait to get into another doctor to do more bloodwork. I am going to go the enterolab way if my appt tomorrow is negative for celiacs. That way it doesnn't matter whether or not I am gluten free. I also went soy and dairy free as well. I have done all this on advice of my naturopath and all i can say is I have nothing to lose by doing it. I hope that you find some answers and I will be talking to my GI tomorrow and I will ask him if he did any bloodwork and how they sore it if he did and I can get back to you on that.

Hope you feel better soon.

Hi,

I am brand new to this.....any suggestion for what to eat over the next days/weeks until I can get to a doctor?

[Helena]

Donna, I had missed this thread . . . so now you can ignore my question in my response to your other thread.

I'm surprised your doctor ordered the gliadin tests only. Those are *not* the best tests available these days . .. sounds like your doctor hasn't consulted the recent medical literature! It would definitely be worth trying to see another doctor. . . .and I'd suggest going armed with medical literature which explain which tests need to be done just in case the doctor isn't up on it. But, hey, they can't argue with the NIH or with Dr. Green at Columbia!

Here are two websites that doctors would view as authoritative (and they are extremely useful!):

Open Original Shared Link

you can get a pdf of that file too.

Open Original Shared Link

Also see:

Open Original Shared Link

Good luck with all this! The problem with going on a gluten free diet before doing the test is that it messes up the test . . . you need to be on gluten for the blood test or the biopsy to be accurate. But you need to decide for yourself how important the tests are to you.

I don't know if it works the same at other hospitals in Ontario, but I didn't have to pay to see a dietician or to get any of the tests since my GI doctor is at a clinic in that hospital.