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Doc Tomorrow - Which Tests To Request?


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28 replies to this topic

#16 psawyer

 
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Posted 12 June 2010 - 08:26 AM

This is, if I understand correctly, the total serum IGA result. This is a control which must be normal for the other test results to be valid. It says your immune system, overall, is working and producing antibodies.

The other tests are for specific antibodies which indicate celiac.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#17 Chirpy

 
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Posted 12 June 2010 - 08:43 AM

Thank you. So in this case, it doesn't matter that I was on the high end of normal - but the fact that it is within normal at all is a good thing.

Will wait and see on the rest of the tests.
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#18 RoseTapper

 
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Posted 12 June 2010 - 10:50 AM

Oh, you're having a terrible ordeal! Many, if not most, of us have been through similar experiences, and they can be disheartening. I swear--dermatologists become dermatologists because they are not competent to be any other kind of doctor (sorry--I know that sounds bitter, but I went to probably a dozen dermatologists to get to the bottom of my DH....and they all failed me by telling me I simply had persistent acne). I get the impression that dermatologists don't continue to study skin issues once they receive their MD; otherwise, they would understand how to test for DH. Very sad.

In a case like yours, being faced with incompetency in all directions, you may very well have to take matters into your own hands. You're fortunate that if you have celiac or gluten intolerance, you really don't have much need for doctor. All you need to do is follow a strict, gluten-free diet. Of course, if you suffer from nutritional deficiencies, you may wish to get lab tests; otherwise, what's the point in discussing this matter with professionals who don't understand and don't care to learn more about the condition? I wish you luck in being gluten free, and I'm confident that you'll feel better shortly. However, with regard to your suspected DH, do know that iodine is also part of the formula that causes it. Until your DH resolves, you should avoid iodine (found in shellfish, iodized salt, asparagus, and dairy products that aren't organic). After it resolves, you can try to reintroduce iodine back into your diet; however, if you should accidentally ingest even a small amount of gluten and have also ingested iodine at the same time, you may break out again in DH.
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#19 mushroom

 
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Posted 12 June 2010 - 12:30 PM

This looks like the total serum IGA test, which is run as a control for the other tests to see if you are an antibody maker (some people have very low antibody levels). Yours are in the normal range, so it means that the results of the other tests when they come back should be valid. If the total serum IGA is low, then it invalidates the other results.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#20 Chirpy

 
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Posted 12 June 2010 - 01:37 PM

Thanks for helping me feel less unique about this ordeal, RoseTapper. You may be on to something with your theory on dermatologists, sadly. Imagine, I had chosen her because she was educated at Yale. I'd chosen my allergist because he was educated at Harvard. Clearly, that isn't the end-all method for choosing a doctor.

When she looked at the problem I was having that extended to my scalp, she said, "oh my gosh, that's acne! Not that you can't have acne on your scalp of course, but I'm surprised." (not verbatim - but close enough). *sigh* Wish she'd have just looked harder, or thought about it. Wish too she'd have asked to see the dang canker sores, as I had a couple that day.

She didn't look at the lesions on my legs carefully - she didn't even get a scope, or light - just eyeballed them from her chair. Didn't bother looking at all at the ones on my elbow that are now just little bumps and won't go away.

Duly noted about the iodine and gluten. Thanks for letting me know. My family buys iodized salt exclusively ...

Thank you again for your support.

Mushroom - thanks for the further thoughts on the test. It sounds like since this test came through the way it did - my other tests should be a true indicator of whether I have gluten intolerance then?

It is possible that I don't have this disease. I could be all wrong. It just would be nice if the evaluation and tests could be conducted properly to make sure I'm right or wrong.
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#21 mushroom

 
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Posted 12 June 2010 - 02:02 PM

Mushroom - thanks for the further thoughts on the test. It sounds like since this test came through the way it did - my other tests should be a true indicator of whether I have gluten intolerance then?

It is possible that I don't have this disease. I could be all wrong. It just would be nice if the evaluation and tests could be conducted properly to make sure I'm right or wrong.


You can count yourself lucky that your doctor actually ran the control test; :) many of them don't :(

Just a slight correction to your wording - your other tests should be a true indicator of whether or not you have diagnosable celiac disease. It is still possible to test negative on the tests and be intolerant of gluten, unfortunately; even to be celiac. Some people with negative blood work test positive on biopsy. I would estimate that most people who test negative on both blood work and biopsy feel better if they stop eating gluten. That is why it is suggested that after all testing (including potential biopsy) is completed, that you give the gluten free diet a good trial. Doctors generally are not aware of non-celiac gluten intolerance and will tell you, upon negative testing, that it's okay for you to eat gluten since you are not celiac. But if you are a non-celiac gluten intolerant you can do yourself as much harm eating gluten as if you were celiac :o

I know you probably didn't want to hear this, but the testing is not that accurate, and not necessarily indicative of what gluten is doing to your body. So I hope your results give you a diagnosis on which to "hang your hat".
  • 1
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#22 Chirpy

 
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Posted 13 June 2010 - 10:12 AM

Just received additional results via email.

Component Your Value Standard Range Units Flag
IGA UNITS: 12 UNITS
Reference range: <20


IGG UNITS: 5 UNITS
Reference range: <20


TTG AB,IGA 13 Units
Reference range: <20


TTG AB, IGG 4 UNITS
Reference range: <20


It looks like my results are all way below the reference range. I assume getting close to, or above 20 would have been a bad sign. Mine are all well below. So this is a good thing, right?
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#23 Chirpy

 
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Posted 14 June 2010 - 06:40 AM

I think this must be the biopsy result? This might be the last of my test results.

ENDOMYSIAL AB,IGA <10
Reference range: <10
(NOTE)
TEST PERFORMED AT SPECIALTY LABORATORIES INC
27027 TOURNEY ROAD
VALENCIA, CA 91355

Does anyone know if I've interpreted what these results mean correctly? When it says reference range <20 and <10 and I'm well below those, is that a good thing - meaning that according to this test I'm testing negative for celiacs and gluten intolerance?
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#24 mushroom

 
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Posted 14 June 2010 - 01:30 PM

Does anyone know if I've interpreted what these results mean correctly? When it says reference range <20 and <10 and I'm well below those, is that a good thing - meaning that according to this test I'm testing negative for celiacs and gluten intolerance?


Well, you got it half right :D . It does mean that you have tested negative for celiac disease. It says nothing, however, about gluten intolerance, which is most probably what you have. There is really no test for gluten intolerance except trying the diet and seeing if it works for you. The only hint of a test for gluten intolerance is one of exclusion, not inclusion, and even that is very questionable - the genetic marker test to see if you carry genes predisposing you to gluten intolerance. Even if you do, that does not mean that you will have it, but with your symptoms and the negative celiac test I would guess that you do.

So now the fun part starts, where you play detective and discover where the food processors hide their gluten :lol:
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#25 Chirpy

 
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Posted 14 June 2010 - 02:30 PM

I'm confused. I was reading the main part of the site, parts written by this site's owner, Scott Adams. Here: http://www.celiac.co...ning/Page1.html

He doesn't mention that test coming back negative might be wrong. Does he feel gluten intolerance and celiacs are not always found by the blood tests? Does he write about that somewhere on his site? Would really like to know more about his views.
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#26 mushroom

 
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Posted 14 June 2010 - 02:53 PM

Chirpy, sometimes people use the terms gluten intolerance and celiac disease interchangeably. While celiac is a disease caused by gluten intolelrance, there are very specific tests and requirements in order to be diagnosed specifically with celiac disease. These include a positive blood test, and visual damage to the small intestine, sometimes to the naked eye through the endoscope and sometimes only by microscopic examination of the biopsy samples. If you have neither of these findings (and most doctors won't do the endoscopy if you have negative blood work, then by definition you do not have what is called celiac disease. That is why they have the ranges on the blood tests; many people will have some antibodies, but you have to reach more than 10 (or 20) in the sample ranges you gave to be labelled celiac.

So that is where the gluten intolerance comes in. If you have all the same symptoms as those who have celiac disease, but do not test positive for it, then you most probably have non-celiac gluten intolerance, which is just is real and causes the same kinds of problems as celiac disease and needs to be also treated with a gluten free diet. It is just that it is always a much neater package if you can tie it up with string and say, yep, this is celiac disease, rather than the somewhat fuzzy gluten intolerance. And many doctors do not acknowledge gluten intolerance as a condition. They are the less well informed :P

I hope this clarifies it a little for you. Keep asking questions about what you don't understand.
  • 0
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#27 Chirpy

 
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Posted 14 June 2010 - 04:03 PM

Thanks for the additional info, Mushroom.

I just wish I could feel more certain about it. With my lactose intolerance problem, it can't be measured with a test.

I'm going to have to really think this all over carefully and keep reading.
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#28 mushroom

 
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Posted 14 June 2010 - 04:28 PM

Thanks for the additional info, Mushroom.

I just wish I could feel more certain about it. With my lactose intolerance problem, it can't be measured with a test.

I'm going to have to really think this all over carefully and keep reading.


Well, the lactose intolerance, if it is reasonably recent (i.e., not lifetime) is a sign that your villi in the small intestine have been damaged because the enzyme that digests lactose is produced at the tips of the villi which are the parts that are damaged first. I was lactose intolerant for years before I recognized I was gluten intolerant. And no, I never bothered with any testing because I was not going to eat gluten anyway. You are sounding like the doctors :lol: - if it can't be measured with one of their tests it doesn't exist - NOT!! Gluten intolerance is very real and most of us find we are able to live within that gray area of knowing something that we can't prove.

One thing you could do would be to order the Enteriab stool/saliva testing online. This will measure IGA, casein and soy intolerances, give you a fecal fat score as a measure of how well your digestive system is working, and test for genetic markers for celiac and gluten intolerance. It will not, however, tell you whether or not you have either :(
  • 1
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#29 Skylark

 
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Posted 14 June 2010 - 11:06 PM

Ugh. Your doctor story is so familiar. I finally found a good osteopath who listens to me and doesn't do stupid stuff.

The tests are good news. It means you do not have celiac issues with your intestine that are severe enough for the antibodies to make it to your blood.

You mentioned giving the gluten free diet a try. I'd still encourage you to do so, especially with an itchy rash that looks like dermatitis herpetiformis. If the rash goes away in a few weeks, you have your answer and you will be SO much more comfortable. The canker sores will also go away if they're caused by gluten. I can bite the inside of my mouth now and I don't get a canker sore there. It's like magic. If I get glutened, they come right back.
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