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12 replies to this topic

#1 AmberRS

 
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Posted 21 November 2012 - 05:26 PM

Hi,

I am new here. A month ago my blood test came back positive for gluten anti-bodies. I have an endoscopy next week, but am wondering if anyone knows what percentage of people who have the endoscopy actually test positive for celiac?? I really want to start going gluten free, to see if I feel better but I know I can't until after the endo. I'm also having doubts about the endoscopy and will be disappointed for putting myself through that if I end up not having celiac. Any thoughts or statistics?

Thanks!
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#2 Lisa

 
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Posted 21 November 2012 - 05:50 PM

Hi,

I am new here. A month ago my blood test came back positive for gluten anti-bodies. I have an endoscopy next week, but am wondering if anyone knows what percentage of people who have the endoscopy actually test positive for celiac?? I really want to start going gluten free, to see if I feel better but I know I can't until after the endo. I'm also having doubts about the endoscopy and will be disappointed for putting myself through that if I end up not having celiac. Any thoughts or statistics?

Thanks!


Hi Amber and welcome! Could you post your blood test results here. We have some great peeps who can interpret them for you.

I did everything backwards. I was really sick and my GP sent me to a GI who confirmed my diagnosis as Celiac via Biopsy. I had a blood test several months after being gluten free, which was negative.

If possitive, that alone can be diagnostic. An Endo Exam can confirm the diagnosis, but it can also check for the level of damage due to Celiac, or look for other associated issues, with digestive distress. Ask the GI to take 8-10 samples, as the intestines are long and affectived areas may be missed. If you biopsy is negative, it could be that you were tested prior to significant damage could be identified. A negative test does not necessarily mean that you do not have Celiac. As well, Non Celiac Gluten Sensitivity can be RX's by a gluten free diet.

You're only a week away...take this time to get organized, and read here as much as you are able. As soon as you get tested, you can begin the diet. A positive dietary result is also a piece of the diagnostic puzzle.

What are your symtoms?
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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#3 guest134

 
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Posted 22 November 2012 - 05:29 AM

You should never feel bad for putting your health as priority. As Lisa said please post up your test results, some are highly unreliable where as others are going to be much more specific in your clinical setting. Also a list of symptoms and what led you to believe celiac, any other medical conditions?
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#4 kareng

 
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Posted 22 November 2012 - 06:18 AM

This site has more info on blood tests, etc so you might want to check it out


http://www.curecelia...-celiac-disease
Is it possible to have a positive blood test, but not have celiac disease?

Yes, blood work can be falsely positive, as can any test in medicine, especially at low titers. However, it may be that the biopsy was done or read incorrectly or that there’s not yet enough damage in the small intestine to diagnose celiac disease. A second opinion at a celiac center can help clarify a diagnosis.
False positives vary between the tests and also between the populations considered. For instance, tTG is falsely positive in about 2-3% of people in general, but in about 20% of those with Type 1 Diabetes or other autoimmune conditions. EMA, on the other hand, has basically no false positives.
You could consider a genetic and EMA test to assist with your diagnosis. In certain cases these can provide a strong enough indication to diagnose the disease when in conjunction with a positive response to a gluten-free diet.
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#5 kareng

 
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Posted 22 November 2012 - 06:21 AM

MOre info on testing

http://www.celiacdis...C05-Testing.htm
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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
 
 
 
 
 

 


#6 AmberRS

 
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Posted 22 November 2012 - 09:28 AM

My pcp didn't tell me anything except that I tested positive for the antibodies. I'll have to call them. I've had stomach problems for years, was diagnosed with ibs and have been lactose intolerant since birth. The ibs meds never worked so i stopped taking them. My mom was diagnosed with celiac 3 years ago so when I had my physical this year i asked my doc to check for celiac when he did my blood work just to see. And here I am now ;)
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#7 AmberRS

 
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Posted 23 November 2012 - 11:32 AM

Ok i have my results:
Endomysial Antibody IGA - Positive Abnormal
(tTG) IgA - 10
Immunoglobulin A, Qn, Serum - 74 low
(tTg) IgG - <2

And now i have to postpone my endo because of my asthma, can't get another appointment until late December.

Edited by AmberRS, 23 November 2012 - 11:48 AM.

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#8 shadowicewolf

 
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Posted 23 November 2012 - 11:47 AM

out of what?

mine was 1-19 was normal, anything above was positive. I scored a 37 I believe and got a positive for both genes, yet a negative on the endoscopy and the rest of the blood tests outside of the IGA ttg.
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#9 AmberRS

 
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Posted 23 November 2012 - 01:14 PM

Oh I didn't realize it could be different... Here is exactly what mine says:

Test Result - Flag Units Reference Interval
Celiac Disease Panel

Endomysial Antibody (IgA) - Positive - Abnormal
t-Transglutaminase (tTG) IgA - 10 - High

Units - Reference Interval
U/mL 0-3
Negative 0-3
Weak Positive 4-10
Positive >10



Immunoglobulin A, Qn, Serum - 74 - Low
t-Transglutaminase (tTG) IgC - <2

Units - Reference Interval
mg/dl 91-414
U/mL 0-5
Negative 0-5
Weak Positive 6-9
Positive >9

Edited by AmberRS, 23 November 2012 - 01:29 PM.

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#10 shadowicewolf

 
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Posted 23 November 2012 - 08:30 PM

My serum came out in the high normal.

Get the genetic test done, as it can't hurt at this point. Of course, feel free to go gluten free regardless of the results.
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#11 GottaSki

 
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Posted 23 November 2012 - 08:43 PM

Hi Amber-

With low Total IgA it is tough to have a positive/abnormal tTG-IgA -- this information together equals a strong positive for Celiac Disease.

The positive/abnormal EMA means there is measurable damage to the endomysial layer of the small intestine.

You have Celiac Disease. I'm not clear which IgG based tests were run, so check that you have had the following tTG-IgG, DGP-IgA and DGP-IgG.

Nutrient testing is important as well - most of us need supplementation of one or more vitamins/minerals until the damage in the small intestine is healed.

An endoscopy is useful to confirm diagnosis and measure the amount of damage to your small intestine. It also takes a look at other parts of your digestive track, so IMO it is very good to have this done. If you and your doctor decide to proceed it is advised to keep gluten in your diet. This will be for you to decide since you have already tested positive. If you decide to keep gluten in - there is no need to overdo it - a slice or two of gluten containing bread per day is sufficient.

Good luck to you :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#12 DonnaMM

 
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Posted 24 November 2012 - 08:33 AM

I don't know why you are doubting the diagnosis, if your mother has it and the blood showed positive then take it and run. You are one of the lucky ones that actually has a doctor that appears to be willing to give you to accurate diagnosis. The blood test has a 95%-99% sensitivity and specificity.
I wish I could only be so lucky and finally get an answer to my problem.
I wrote somewhere else about my years of stomach problems, anemia, blunted villi (in distal duodenum and proximal jejunum) right where celiac hits. But I am seronegative and my biopsy was negative.
I am in ARNP school and have realized how many people are not textbook presentation you appear to be which I assure you will make life much easier for you!
Honestly you don't HAVE to get the biopsy you have the diagnosis but its quick, painless and nice to know how much damage is done some after a few years you can do it again and compare the two
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Hodgkins Lymphoma-2006 at age 18, now 25
Disagnosed with IBS and anxiety (related to my treatment they say)-2007
Allergies to corn, tree nuts, shellfish, bees- 2010
Positive Lupus Anticoagulant-2011
Erosive esophagitis-2011
Severe iron deficiency anemia- 2012
Inappropriate sinus tachycardia-2013
Tested for celiac three times, blood and biopsies all negative
Now encouraged to undergo testing again due to malabsorption

#13 AmberRS

 
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Posted 10 December 2012 - 06:08 PM

Well my endo came back negative for Celiac. I'm gonna go gluten free anyway and see if I feel better.
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