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Should I Bother With This Test?

L-C

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L-C Rookie
L-C
Posted

Hi,

I took gluten out of a couple years ago just because I thought I would be better off without it -- I didn't have any major digestive problems, but I had some other problems that I thought might improve. And I found that I did better without it, so I kept it out of my diet. After not eating it for 8 months, I decided to try it again. I got diarrhea the next day. So I went back to not eating it, and every time (a few times) that I have accidently ingested gluten since then (over a year ago), I've gotten diarrhea.

So I was never tested for celiac disease, but I think it's pretty safe to assume that I have either celiac disease or at least a major gluten intolerance (if there's any difference).

A few months ago, I developed what I think is IBS... I get alternating diarrhea/constipation from foods like raw vegetables and fruits, anything fatty, etc. I mentioned this to my doctor and he said he wanted to test me for celiac disease. So I told him that I already had discovered that gluten was a problem for me and had eliminated it a long time ago. But he still thought I should get tested because, he said, "most people who think they're on a gluten-free diet aren't really". I make all my food at home, so I know I am on a gluten-free diet. And I'm not willing to start eating gluten again, so I don't think the test is worth getting.

The only thing is... I do eat oats that are certified wheat-free. I've read that most people with celiac disease do okay with wheat-free oats, but some do not. I think they are okay for me, because I have eaten them everyday for a long time, and I don't have digestive problems every day... and I was fine for a long time before I developed IBS. But I was thinking maybe I should get tested just for the slight chance that oats are not okay for me. If they're not, if they are damaging my intestines, the test should show positive right? The test my doctor wants me to get is for Anti-tissue Transglutaminase Antibodies. So does anyone think it's worth it to get this test? The downsides are that I would probably have to pay a small amount ($15-20 or so), and I hate getting blood drawn!

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leadmeastray88 Contributor
leadmeastray88
Posted

I would say it's worth it.

However, that one test is not enough. It's only one of many tests included in the complete Celiac panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

It's better to get all of these tests together so they can see the big picture.

But you also know you have a problem with gluten because you had problems again as soon as you started eating it again - I think that's evidence of a gluten intolerance, not IBS...

If you feel better off of it, you should go completely gluten free and see if your other problems clear up - but only after you finish testing (if you wish to do so!) :)

Good luck!

MissyMayhem Newbie
MissyMayhem
Posted

Without a doubt you should get the test, stuff yourself full of gluten for 6 weeks beforehand (4 slices of bread a day) if you haven't already or will give a false negative and your money will be wasted.

If it's a long term issue and/or if your result comes negative maybe ask if you can see a gastroenterologist (stomach specialist), if they can't bulk bill it may cost around $100. Not much money at the end of the day if your have crohns, celiac or something of the like it will lead to depression, fatigue, pain, nausa, osteoperosis and general suffering.

Celiac is as common as diabeties1 and breast cancer put together, that's a lot of people. That's why so many products are available now, because there is demand. People are starting to realise it's not a fad diet it's a serious condition like diabeties. I'm in the corporate world and there is 6 ladies on a gluten-free diet just on my floor, we share receipes. Eating gluten-free is much healther anyways, I love it and don't worry about what other people think you learn how to word things pretty quickly so people don't think u r a freak, I did.

gfb1 Rookie
gfb1
Posted
[snip] If they're not, if they are damaging my intestines, the test should show positive right? The test my doctor wants me to get is for Anti-tissue Transglutaminase Antibodies. So does anyone think it's worth it to get this test? The downsides are that I would probably have to pay a small amount ($15-20 or so), and I hate getting blood drawn!

i'm not sure i understand your question. if you are on a gluten-free diet, the tests are pretty much worthless from a diagnostic point of view. back in the day (around 9 yrs ago), my wife (one of our celiacs) would periodically get tested for gliadin, just to be sure she was gluten free. we rapidly found that her 'health-sense' was much more acute than any blood test. she would react to a gluten containing food much more rapidly than gliadin-ab's (or any other ab) would appear in her blood.

i understand your doc's thoughts on maintaining a gluten-free diet. when i taught nutrition, i would ask the students 'how many of you are vegetarians?'. invariably, around 5-10% would raise their hands. later i would ask how many people had eaten 2 big macs in one day over the last 30 days. invariably, some of the same people would also raise their hand.... :)

however, with respect to gluten.... in todays world, food labeling and preparation is so much better than it used to be -- and it is easier to be sure you are as gluten-free as possible.

if you want to get the blood tests, you would have to be eating gluten on a regular basis -- and of sufficient quantity -- to cause the damage so that antibodies are at detectable levels in your blood. there are many 'threads' on this, but, estimates vary, and there are certainly individual differences. suffice it to say, that if you ARE celiac, then it will also be of a sufficiently long period of time to make you pretty miserable....

L-C Rookie
L-C
Posted
  • Author
I would say it's worth it.

However, that one test is not enough. It's only one of many tests included in the complete Celiac panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

It's better to get all of these tests together so they can see the big picture.

Yeah, I was afraid of that. My doctor is never very thorough. If I told him I needed all those tests, he probably wouldn't believe me.

But you also know you have a problem with gluten because you had problems again as soon as you started eating it again - I think that's evidence of a gluten intolerance, not IBS...

If you feel better off of it, you should go completely gluten free and see if your other problems clear up - but only after you finish testing (if you wish to do so!) :)

Good luck!

I am completely gluten-free though (other than the few times I accidentally ate some)... unless you consider wheat-free oats as a gluten food. I do know that other foods bother me as well, like raw fruits and veg, etc. so that's why I think I have IBS as well as celiac disease.

L-C Rookie
L-C
Posted
  • Author
Without a doubt you should get the test, stuff yourself full of gluten for 6 weeks beforehand (4 slices of bread a day) if you haven't already or will give a false negative and your money will be wasted.

I'm sooo not willing to do that though! I get so sick from just a tiny bit of gluten! And I'm already way underweight, and that would make me lose more weight...

L-C Rookie
L-C
Posted
  • Author
i'm not sure i understand your question. if you are on a gluten-free diet, the tests are pretty much worthless from a diagnostic point of view.

Okay, here's what I'm trying to say... I am on a gluten-free diet, BUT I eat wheat-free oats, which do bother SOME people with celiac disease. So if the oats are bothering me, then the test could show something, right? If it's positive, that probably means the oats are not okay for me, and if it's negative, that probably means they are okay for me. Am I wrong in thinking that?

I already know that I react severely to gluten, so I don't really need a test to tell me that. I just want to make sure the oats aren't bothering me.

i understand your doc's thoughts on maintaining a gluten-free diet. when i taught nutrition, i would ask the students 'how many of you are vegetarians?'. invariably, around 5-10% would raise their hands. later i would ask how many people had eaten 2 big macs in one day over the last 30 days. invariably, some of the same people would also raise their hand.... :)

however, with respect to gluten.... in todays world, food labeling and preparation is so much better than it used to be -- and it is easier to be sure you are as gluten-free as possible.

Yeah, I understand where he's coming from too, but I'm not most people! I have tons of other food allergies too, so I prepare ALL my own food. And I rarely even eat things that come in packages... I just eat whole foods that are naturally gluten-free.

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ravenwoodglass Mentor
ravenwoodglass
Posted

My advice is most likely going to sound over simplistic but how about you stop eating the oats for a while and see if things improve. If they do then add oats back in and see if the symptoms return. IMHO the folks with problems with gluten that are able to eat certified gluten-free oats are the minority not the majority.

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