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Help Me De-Code These Results


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17 replies to this topic

#1 user001

 
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Posted 30 May 2014 - 12:20 PM

So as i posted earlier, I have been gluten-free for 4 months and the doc ran the celiac blood tests without me first doing a gluten challenge. I dont understand the results, so someone help me de code them.

 

Tissue tansglutam ab IGA- >100

IGA- 202

endomysial antibody SCR (iga)- postive A

endomysial antibody titer- 1:160

 

No clue what any of it means. also it looks like IGA is just on there 3 times?


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Beef and pork free due to intolerance since 2005, Gluten free since March 2014, Coffee free due to a developed intolerance June 2014, Egg free due to a developed intolerance August 2014
Misdiagnosed since 2000 with chronic fatigue syndrome, major depression and anxiety disorder.
Requested doc test for Celiac disease in April 2014.
Blood test positive for  Celiac disease May 2014.

Celiac Dx confirmed via small intestine biopsy 6/26/14
Fatigue,.depression, anxiety, daily headaches, and a laundry list of other symptoms have diminished slowly since I stopped eating gluten.

Who knows how much longer I would have suffered if I continued to rely on doctors to think of testing me for celiac disease.

BE AN ADVOCATE FOR YOUR OWN HEALTH!


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#2 RMJ

 
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Posted 30 May 2014 - 03:56 PM

IgA is a type of antibody, but just saying IgA doesn't say what "antigen" the antibody recognizes.

IgA 202 is your total IgA level. This is checked because some people with celiac don't make much IgA - if that had been the case and the other IgA tests were negative, one couldn't say yes or no to celiac and then would have to test IgG antibodies. But yours is in a normal range so the other tests are valid.

Tissue Transglutaminase IgA and endomysial antibody IgA are both tests for celiac disease. They are performed in quite different ways. Yours are both definitely positive. I don't know how much more detail you want - I am a scientist so might overdo the explanation if I don't stop now!
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#3 user001

 
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Posted 30 May 2014 - 04:02 PM

Thanks for the details. If anyone could dumb that down into lay people language, it would be great! All I know is, the doctor called me to tell me that I probably have Celiac disease, but I have no clue how accurate she is presenting those details. Especially because I haven't eaten gluten in 4 months.


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Beef and pork free due to intolerance since 2005, Gluten free since March 2014, Coffee free due to a developed intolerance June 2014, Egg free due to a developed intolerance August 2014
Misdiagnosed since 2000 with chronic fatigue syndrome, major depression and anxiety disorder.
Requested doc test for Celiac disease in April 2014.
Blood test positive for  Celiac disease May 2014.

Celiac Dx confirmed via small intestine biopsy 6/26/14
Fatigue,.depression, anxiety, daily headaches, and a laundry list of other symptoms have diminished slowly since I stopped eating gluten.

Who knows how much longer I would have suffered if I continued to rely on doctors to think of testing me for celiac disease.

BE AN ADVOCATE FOR YOUR OWN HEALTH!


#4 nvsmom

 
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Posted 30 May 2014 - 04:54 PM

The Tissue transglutam Ab IgA is the anti-tissue transglutaminase immunoglobulin A (tTG IgA) and indicates there is an attack going on in your endomysial linings of your intestines. Over 100 could be very high (like 200 or 500) or it could be 101. That does seem high to me for being gluten-free - I would suspect some cross-contamination with a number that high.

 

IgA is your total serum immunoglobulin A, which just shows how active the immune system that works in your mucosal linings are.  They test it because 5% of celiacs are deficient in IgA which would cause all IgA based tests (like the tTG IgA) to result in a false negative.

 

Your endomysial antibody titre (EMA IgA) is quite high at 1:160. I believe normally is usually 1:10 or lower. The titres are doubled each time they are run so it would go up like 1:20, 1:40, 1:80, 1:160. 1:160 is about the highest I ever see that test.  After being an untreated celiac for many decades, mine was 1:40.  The EMA IgA tends to come down faster than the tTG IgA.  You get EMA IgA testing positive when your body already has significant intestinal damage caused by tissue transglutaminase antibodies (tTG). Basically, your body senses gluten, and that the intestines are damaged, so it sends in the EMA to basically wipe out the top layer of your villi to get rid of the problem. The EMA IgA is rarely positive in early celiac disease.... or in those who eat gluten-free.

 

You definitely have celiac disease. The EMA IgA is 98-100% specific to celiac disease, meaning that 98-100% of the time, a positive test is caused by celiac disease. The tTG IgA is also highly specific to celiac disease and tends to only give (rare) false positives for those individuals with a weak positive test result... which is not you.  See this report (page 12) for more details: http://www.worldgast..._long_FINAL.pdf

 

If those are your results after 4 months gluten-free, I would check your diet carefully for gluten.  I would guess that you are getting small amounts of gluten somewhere. Check soy sauce, worchestershire sauce, teriyaki and BBQ sauces, all seasonings, boullions, old baking supplies (like sugar that has had flour coated measuring cups dipped into it), medications, vitamins, lotions, soaps and shampoos (which could get into your mouth), snacks, and be extra careful eating out. You will need a new toaster, some new wooden spoons, and maybe a new collander or pans if they are damaged and could have gluten in the cracks.

 

Best wishes and welcome to the board.  :)


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#5 kareng

 
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Posted 30 May 2014 - 05:21 PM

My TTG IGA was very positive after a year. I was extremely gluten-free. My original was like yours - >100 . Who knows how over! It might have been fifty million trillion zillion. I put a link on your other thread from Celiac experts. The thing to do is to see how it goes down in 6-8 months of serious gluten-free.

And, since you were gluten-free for reasons other than Celiac, you may not have been as strict as a Celiac - took the burger off the bun, ate fries from a shared fryer, used soy sauce, ate cornflakes, etc.
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Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#6 user001

 
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Posted 31 May 2014 - 04:16 AM

That's crazy. I already have ocd and now im feeling like im going to go insane over this!


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Beef and pork free due to intolerance since 2005, Gluten free since March 2014, Coffee free due to a developed intolerance June 2014, Egg free due to a developed intolerance August 2014
Misdiagnosed since 2000 with chronic fatigue syndrome, major depression and anxiety disorder.
Requested doc test for Celiac disease in April 2014.
Blood test positive for  Celiac disease May 2014.

Celiac Dx confirmed via small intestine biopsy 6/26/14
Fatigue,.depression, anxiety, daily headaches, and a laundry list of other symptoms have diminished slowly since I stopped eating gluten.

Who knows how much longer I would have suffered if I continued to rely on doctors to think of testing me for celiac disease.

BE AN ADVOCATE FOR YOUR OWN HEALTH!


#7 1desperateladysaved

 
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Posted 31 May 2014 - 04:34 AM

I am so glad for you that you made this discovery even after being gluten free for 4 months!

 

Dee


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#8 nvsmom

 
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Posted 31 May 2014 - 06:43 AM

That's crazy. I already have ocd and now im feeling like im going to go insane over this!

The first few months going 100% gluten-free are a bit stressful but once you get in your groove, it gets much easier.


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"Acceptance is the key to happiness."

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Celiac - June, 2012
Hypothyroid - August, 2012

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#9 user001

 
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Posted 02 June 2014 - 12:31 PM

Most of my cookware is expensive calphalon cookware, fairly new! Is there anyway to clean it so that I can rid it on these freaking gluten particles I cannot even see?! So nerve wracking!


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Beef and pork free due to intolerance since 2005, Gluten free since March 2014, Coffee free due to a developed intolerance June 2014, Egg free due to a developed intolerance August 2014
Misdiagnosed since 2000 with chronic fatigue syndrome, major depression and anxiety disorder.
Requested doc test for Celiac disease in April 2014.
Blood test positive for  Celiac disease May 2014.

Celiac Dx confirmed via small intestine biopsy 6/26/14
Fatigue,.depression, anxiety, daily headaches, and a laundry list of other symptoms have diminished slowly since I stopped eating gluten.

Who knows how much longer I would have suffered if I continued to rely on doctors to think of testing me for celiac disease.

BE AN ADVOCATE FOR YOUR OWN HEALTH!


#10 kareng

 
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Posted 02 June 2014 - 01:27 PM

Most of my cookware is expensive calphalon cookware, fairly new! Is there anyway to clean it so that I can rid it on these freaking gluten particles I cannot even see?! So nerve wracking!


Just wash it good. No big deal.
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santa-dance.gif

 

Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#11 user001

 
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Posted 02 June 2014 - 04:27 PM

That's all? And i shouldnt be using the wooden spoons i used for pasta? and the non stick i used to use for pancakes? trash them?


  • 0

Beef and pork free due to intolerance since 2005, Gluten free since March 2014, Coffee free due to a developed intolerance June 2014, Egg free due to a developed intolerance August 2014
Misdiagnosed since 2000 with chronic fatigue syndrome, major depression and anxiety disorder.
Requested doc test for Celiac disease in April 2014.
Blood test positive for  Celiac disease May 2014.

Celiac Dx confirmed via small intestine biopsy 6/26/14
Fatigue,.depression, anxiety, daily headaches, and a laundry list of other symptoms have diminished slowly since I stopped eating gluten.

Who knows how much longer I would have suffered if I continued to rely on doctors to think of testing me for celiac disease.

BE AN ADVOCATE FOR YOUR OWN HEALTH!


#12 kareng

 
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Posted 02 June 2014 - 04:45 PM

Use some common sense - can you wash it well? Get into the little cracks and clean them out? Kind of hard to do with wooden spoons and colanders - but good pans should be cleanable.
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santa-dance.gif

 

Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#13 notme!

 
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Posted 03 June 2014 - 08:43 AM

check out the newbie 101 thread in the coping section of the forum.  lots of great advice and some tricks of the trade :)  welcome to the best club you never wanted to join  -_-


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arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

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have a nice day :)

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#14 Fenrir

 
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Posted 03 June 2014 - 01:03 PM

I'm relatively new to living gluten-free but it is already part of the routine now. I've found there are a lot more foods I can have than I first thought, just learn to read labels well and go to the store and spend a few hours walking around reading labels. You'll find it isn't as hard as you first thought.


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Abdominal Pain/GI symptoms started= ~01/02/2014

Gallbladder out= 02/20/14

tTG IgA Postive= 03/21/14

DX via Biopsy (Marsh 3b)= 04/21/14

Celiac Antibodies within Normal range(Gluten free diet)= 10/23/2014


#15 IrishHeart

 
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Posted 05 June 2014 - 04:04 AM

I strongly suggest you get the book Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler.

Tons of great advice and excellent information in there by over 50 leading celiac experts and celiac nutritionists. 

 

Read this thread:

 

http://www.celiac.co...ewbie-info-101/

 

What doctor just called and said "you may have celiac" like that and did not schedule a follow up or a visit with a nutritionist or other testing?

That's not very helpful at all. It's also not very definitive. 

Sounds like you need a good GI doctor to me. 

 

Do not stress out over this, okay. That does not help you heal at all. Stress creates inflammation, insomnia, all sorts of muscle pain.

Relax. breathe and know this: we all learned to adapt and so will you. In time, you may even find your "OCD" is gone.

Best wishes. 


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