Blood Testing While Gluten Free

[Tranquillity]

First off, I know that you need to eat gluten to have accurate results. Thing is, I had NO idea my doctor had ordered celiac tests, until I had a needle in my arm and gazed at the papers! I've been gluten free since 2007-10-30, which is 2 months and a couple of days.

I'm not sure which tests were ordered, but lets give him the benefit of the doubt and suppose it's the full "celiac panel". All I know is that it was quite a few tubes, although other (non-celiac) tests were also ordered. The only test I know for sure was in was the tTG antibodies.

Will the results look good no matter what, or will they still look less-than-perfect IF I'm celiac? I really doubt I am at this point, though.

Thanks in advance

[gfp]

Well it's not so easy..

The difficulties are two fold...

The simplest is that the 'normal' ranges are used and these have a wide range... your antibodies will drop off over time and this is pretty individual, not only for the person but also the time in your life and other health issues etc.

The results will be compared to this norm so a 'slightly elevated' might be significant given the amount of time you are gluten-free but MD's prefer nice categories.

[aikiducky]

Some people who had a high ttg at diagnosis still have a higher than normal ttg when they have follow up testing six months or so into the diet, so I guess there's chance that you still could have some positives now. It's impossible to say of course since we don't know what your numbers would have been when you were still on gluten. I'd say in any case if anything is even a little bit positive it should be taken seriously. What are you planning to do, are you going to stay gluten free no matter what, or are you thinking that you might not need to after all?

Pauliina

[Tranquillity]

Some people who had a high ttg at diagnosis still have a higher than normal ttg when they have follow up testing six months or so into the diet, so I guess there's chance that you still could have some positives now. It's impossible to say of course since we don't know what your numbers would have been when you were still on gluten. I'd say in any case if anything is even a little bit positive it should be taken seriously. What are you planning to do, are you going to stay gluten free no matter what, or are you thinking that you might not need to after all?

Pauliina

I haven't noticed *any* change whatsoever on the trial diet, so if the blood test is ("completely") negative, I'll go back on gluten to check for reactions. If there is none, I'll most likely stay on.

Celiac wasn't very likely in the first place (long story, but lets just say that my symptoms don't really point to a stomach/digestive problem at all), but I figured a trial wouldn't hurt.

[Offthegrid]

My family doctor ordered a blood test that came back positive. The gastro I was referred to ordered a different blood test over a month later that came back negative. The gastro said my family doc's test wasn't used any more.

But, bottom line, I get sick when I eat gluten. I did a gluten test, and it's painfully obvious that I am gluten intolerant. And when I accidentally eat it, I get sick even when I don't *know* I've eaten gluten. Most recent example is that three weeks ago I drank tea that I didn't realize had barley in it.

All my brother's blood tests and an endoscopy came back negative. He also clearly can't eat gluten.

So, I personally wouldn't put too much stock in a negative blood test. Do a gluten trial after you get the results if they are negative.

[Gwen B]

My family doctor ordered a blood test that came back positive. The gastro I was referred to ordered a different blood test over a month later that came back negative. The gastro said my family doc's test wasn't used any more.

But, bottom line, I get sick when I eat gluten. I did a gluten test, and it's painfully obvious that I am gluten intolerant. And when I accidentally eat it, I get sick even when I don't *know* I've eaten gluten. Most recent example is that three weeks ago I drank tea that I didn't realize had barley in it.

All my brother's blood tests and an endoscopy came back negative. He also clearly can't eat gluten.

So, I personally wouldn't put too much stock in a negative blood test. Do a gluten trial after you get the results if they are negative.

My doctor ordered a Tissue Transglutiminase IGA Serum test a year ago (whatever that is) and the result was a low negative. I was told that I might be low on B12 so to take supplements and this eased my dizzyiness and fatigue for a while but after a year of escalating gastric woes I decided I didn't have time to be sick over the holidays and have been gluten free since Nov 1 07 and dairy free about a month. I have been much better with only a couple of bad days usually when I found out I had had something glutinous or cassein.

One time was particularly bad on Dec 24 I had a supposedly gluten free meal in a restaurant which claims to have gluten free menus. I developed severe hives and swelling so bad my chin disappeared into my neck and had to get shots at the emergency room to counter the histamine reaction, not to mention the usual stomache ache I got later that day.

It makes me somewhat apprehensive of trying gluten again to see if I am coeliac. I had skin allergy testing which only tested posative for soy and hayfever related stuff, not wheat. but I was sure I had had a lot of wheat in that meal and I subsequently spoke to the restaurant manager who appologised and conceded it may have been possible that I had been given the regular soy sauce not the gluten free kind.

The allergist doctor also conceded that he didn't know what caused the hives and that although the IGA result made it 'extremely unlikely' that I was coeliac, if I felt better on a gluten-free diet then I may well be reacting to a protein in wheat or some other gluten culprit.

Should I try it again?

[slee]

I subsequently spoke to the restaurant manager who appologised and conceded it may have been possible that I had been given the regular soy sauce not the gluten free kind.

Wouldn't the soy sauce have caused you a problem anyways since you are allergic to soy??

[Gwen B]

I subsequently spoke to the restaurant manager who appologised and conceded it may have been possible that I had been given the regular soy sauce not the gluten free kind.

Wouldn't the soy sauce have caused you a problem anyways since you are allergic to soy??

May be but usually it just furs my mouth up if I drink soy milk. I've had soy yogurt several times since and not had a reaction. I was told that heating/cooking soy milk might destroy the protein to which I react.

May be there was the combination of wheat and soy which triggered soy. I definately felt bad afterward like I have done in the past when I've been glutened.

I've asked my doctor for a (proper) blood allergy test which is supposed to be more accaurate.