Author: Sorting Last Post on Top ↓ Message:
JANISSUE Posts: 20
12/12/08 3:41 P

Send Private Message
Reply
Hi. I just got a recheck on my tTG blood test. Last one was 4-1/2 months ago and my number was 22. The number this time was 6 so I'm making progress. I was 178 at diagnosis about a year ago. My gastroentologist said this number was great and I should be happy with it. Just wanted to share my good numbers. I've done my best to remain gluten free since diagnosis and I do feel much better. I appreciate these posts. They have all been a great help. I've learned a lot from everyone's comments and information shared.

MARGIE100%PURE's Photo MARGIE100%PURE Posts: 1,514
8/19/08 12:26 P

My SparkPage
Send Private Message
Reply

OH YES Dotslady, I totally agree with the data from Dr. Green’s book being current and reliable. I also recommended it on the book thread along with three other books. The doctors here in Mississippi are few and far between especially the good ones. They will not take a “new” patient w/o some sort of cash up front a minimum of the total bill. This ruling locks me out of most care as I can not come up with the pathetic bottom amount to even be seen or get tested independent of doctor appointments. So when Dr Fox ( a retail store owner, no fee to see) last saw me in dire pain; She believed that less pain today may help me think and stay active in thought and deed, to succeed in getting better. I only had the one test taken as that is all I can afford starting with $20 down. The results for the anti-gliadin anti-bodies test may take another 5-7 working days from this discount lab, about Aug 27th for results. My care is involved beyond Celiac, like some other Celiacs I know that most man-made preservatives cause harm also.

Here is another example of poor doctor the patient ratio down here: I broke a tooth. The filling came out and the edge broke off. It took a week of calling (like a radio telephone contest to win concert tickets) at 8 am to even get seen. I did get in after one week. The dentist looked at the tooth, took a bite-wing x-ray ($150, $20 up front) then set up an appointment A.S.A.P. The next available is October 7th 2008. So I sit with an open hole in my mouth and no recourse w/o $$$. The generous clinic is sponsored by Qatar the Middle East country beside Saudi Arabia. But much of the Katrina Evacuee population from New Orleans, Louisiana area have moved in to flood our community resources. I got mad and did call the management who stepped in and sent me to a different clinic in the county within two days. Total bill to drill and fill (only $32.50)! So my assertive action of calling was the only way to secure faster results. Imagine the internal-possible- heart trouble should I have played meek and did not call!



emoticon

The greatest love story is your own.
If you miss out of life to the fullest; they win.
You are the happiness master of your own mind.
Thought is an active dynamic energy to harmonize and corrolate good.
Clear all paths to love thru forgiveness.
I may not recognize the significance until some time later.
Is my resistance to change really that strong?
Impatience does not provide the time to learn the lesson;
Awaken new ways to approach the dissolving of a problem;
DOTSLADY's Photo DOTSLADY Posts: 10,019
8/18/08 6:02 P

My SparkPage
Send Private Message
Reply
Margie - I'm surprised your nutritionists would say that after "flirting" with gf diet that your test would be POSITIVE - I'd have thought the other way around because you'd lessened the offending agent.

Here's an explanation of some test results per Dr. Green in his book, Celiac Disease: The Hidden Epidemic:

IgA Endomysial Antibodies (EMA)
Testing for EMA ishighly specific, virtually 100 percent so, and about 90 percent sensitive. If this test is positive, it means that virtually 100 percent will have celiac disease, though some patients with celiac disease may not be positive for EMA. Nevertheless, these antibodies correlate to the degree of villous atrophy. (See Selective IgA Deficiency, below.)

This is a test done using immunofluorescence technique. It's expensive and is read manually by a technician using a microscope. Therefore, it is observer dependent, which introduces an element of potential technician error.

There are some physicians who beieve that the EMA test, when properly conducted, is as good as an intestinal biopsy for the diagnosis of CD. There is not the same degree of trustin the tTG.

Unfortunately, there may be a stage when the IgA EMA test is negative in a patient, only to appear and test positively two or three years later. (See Latent Celiac Disease.) This is often seen in clinical practice. These people probably had celiac disease but were not diagnosed because those antibodies were negative. EMA may also be absent in patients younger than two yrs of age.

Doctors must rely on tests to give them an indication of a problem, and often it is necessary to retest if patients' symptoms continue. ALSO, SEROLOGICAL TESTS, IN CLINICAL PRACTICE, OFTEN LACK THE SENSITIVITY REPORTED IN THE MEDICAL LITERATURE.

IgA Tissue Transglutaminase (tTG)
tTG is the enzyme that converts gliadin into a more toxic molecule. At the NIH Consensus Dev. Conference in 2004, it was generally agreed to be one of the key serologic markers for celiac disease.

Yet, the tTG antibody is not 100 percent specific - there are other causes of its being positive, and they include diabetes, heart failure, and liver disease. Also, people who have CD can have a negative tTG test.

This is an automated test. It is an ELISA - an enzyme linked immunosorbent assay - that is machine read from a kit that the lab buys. The kit contains the "substrate" to which the blood sample is added - in this case usually human tissue transglutaminase. This process sets off a reaction that is interpreted by a machine as a number that falls into a postive or negative range.

The test is done with different kits at different labs, and results may vary. (See Laboratory Differences, below.)

IgA and IgG Antigliadin Antibodies (AGA)
IgA and IgG antigliadin antibodies arise in the intestine and circulate in the blood. They are seen as a reaction to the ingestion of gluten. THEY MAY BE SEEN IN CONDITIONS APART FROM CELIAC DISEASE AND ARE, THEREFORE, NOT HIGHLY SPECIFIC FOR CD. They may also be seen in people with NO detectable diseases. You can have positive results for these two tests and not have CD.

The antigliadin antibody tests were the first serology tests for CD and have outlived their usefulness. Their major role is following compliance to the diet. They will disappear from the bloodstream more rapidly than EMA or tTG after starting a gf diet. New generation antigliadin antibody tests may be available in the future and show good results for the diagnosis of CD.

Selective IgA Deficiency
There is a genetically determined condition called selective IgA deficiency that occurs in about 0.2 percent of the population and in about 3 percent of patients with CD. These people do not make IgA antibodies, whether or not they have CD.

Since most of the highly specific and sensitive blood tests for CD measure IgA, the tests are measuring a class of antibody that some people cannot ever make. Therefore, if a patient's total IgA is 0 or extremely low, running an IgG tissue transglutaminase antibody is recommended in order to determine if IgG celiac antibodies are present. These tests are important if you are IgA deficient since you may not be otherwise be diagnosed.

I'll type up what Sensitivity and Specificity, Lab Differences and False/Negatives/False Positives later.


KNOWLEDGE = POWER. BODY = TEMPLE. FOOD = MEDICINE. PREVENTION IS THE CURE. YOU ARE WHAT YOU ABSORB!
One person's food is another person's poison.
__________
Celiac Disease: An autoimmune reaction from eating gluten grains: wheat, rye, barley and contaminated oats=nutrient deficiency=cancer. Have 1 of 300 symptoms? bit.ly/cdsymptoms
CD stories: bit.ly/cdstories
Nutrition/Cancer: bit.ly/Quillinnutrition


3,156 Days since:  gluten
 
0
800
1600
2400
3200
MARGIE100%PURE's Photo MARGIE100%PURE Posts: 1,514
8/17/08 11:38 P

My SparkPage
Send Private Message
Reply
Thank lots and lots Dots,
The range in detail will help me understand my future results. After working with me for the last 3 years, my Nutritionists, Doctors Jim and Janine Fox. Dr. Jim Fox told me, "Don’t be surprised if the test comes out positive. Even though you have been flirting with the GF diet to test for headache causes."! They have worked diligently to get me well and they are the ones that discovered my Systemic Candida.
. emoticon


Edited by: MARGIE100%PURE at: 8/17/2008 (23:59)
The greatest love story is your own.
If you miss out of life to the fullest; they win.
You are the happiness master of your own mind.
Thought is an active dynamic energy to harmonize and corrolate good.
Clear all paths to love thru forgiveness.
I may not recognize the significance until some time later.
Is my resistance to change really that strong?
Impatience does not provide the time to learn the lesson;
Awaken new ways to approach the dissolving of a problem;
DOTSLADY's Photo DOTSLADY Posts: 10,019
8/17/08 2:10 A

My SparkPage
Send Private Message
Reply
I know what you mean Martha. I just took those off my results from the doc. Here's a little primer from glutensyndrome.net about tTG and antibodies to start off. I'll try to find another link with better explanations later. I hope this helps:

Quote:
"tTG test - tTG is a normal enzyme in the body that becomes elevated in SOME BUT NOT ALL gluten syndrome reactions according to some researchers. (Aristo Vojdani, Immunosciences Laboratories, et al). The Enterolab and Neuroimmunology Laboratories tests check tTG, but if the person has another gluten syndrome reaction that does NOT include elevated tTG, this test will be negative. Therefore a positive test is meaningful, but a negative test is inconclusive. Unfortunately, the tTG test is used widely as a screener for the gluten syndrome (actually for celiac disease, one small subset of the gluten syndrome). Persons with other serious gluten syndrome reactions that don't elevate tTG will be negative for this screener and may erroneously be told to eat gluten.

Overall low antibody counts - If antibody counts are unexpectedly low, a person may have endured years of the effects of the gluten syndrome and/or other illness, and it is conjectured that the body may be simply too "tired" to make large amounts of the antibodies these tests measure. Antibodies are made of protein and it is thought that if protein synthesis does not work well, antibody count may be low. Or they may be IGA deficient, and do not make IGA antibodies at all. In that case the test results are meaningless."
end quote.


KNOWLEDGE = POWER. BODY = TEMPLE. FOOD = MEDICINE. PREVENTION IS THE CURE. YOU ARE WHAT YOU ABSORB!
One person's food is another person's poison.
__________
Celiac Disease: An autoimmune reaction from eating gluten grains: wheat, rye, barley and contaminated oats=nutrient deficiency=cancer. Have 1 of 300 symptoms? bit.ly/cdsymptoms
CD stories: bit.ly/cdstories
Nutrition/Cancer: bit.ly/Quillinnutrition


3,156 Days since:  gluten
 
0
800
1600
2400
3200
MARTHAJOY's Photo MARTHAJOY Posts: 913
8/17/08 1:04 A

My SparkPage
Send Private Message
Reply
guess i'm confused; all these abbreviations. sorry.

 
0
800
1600
2400
3200
DOTSLADY's Photo DOTSLADY Posts: 10,019
8/16/08 8:13 P

My SparkPage
Send Private Message
Reply
At diagnosis, my tTG antibody, IGA: 19 High (anything under 5 being negative, over 8 being positive).
Endomysial AB IGA: positive
Gliadin Antibody (IGA): 50 High (neg=less than 11, positive over 17).
IGA, serum: 212

My 6 month followup:
tTG, under 3=negative.
Endomysial AB IGA: test not performed
Gliadin Antibody (IGA): 5 (neg=less than 11)
IGA, serum: 207

My 1 yr followup:
tTG, under 3=negative.
Endomysial AB IGA: negative
Gliadin Antibody (IGA): less than 3 (neg=less than 11)
IGA, serum: 211

I hope vigilance will pay off and you'll hopefully be negative by next test - keep up the good work!

(FYI: My house didn't start out gf, then became gf, now has sprouted grain bread which I handle at times. We share a toaster, but it's a toaster oven, and I clean it thoroughly after Ezekial use; if that helps at all.)

Edited by: DOTSLADY at: 8/16/2008 (20:13)
KNOWLEDGE = POWER. BODY = TEMPLE. FOOD = MEDICINE. PREVENTION IS THE CURE. YOU ARE WHAT YOU ABSORB!
One person's food is another person's poison.
__________
Celiac Disease: An autoimmune reaction from eating gluten grains: wheat, rye, barley and contaminated oats=nutrient deficiency=cancer. Have 1 of 300 symptoms? bit.ly/cdsymptoms
CD stories: bit.ly/cdstories
Nutrition/Cancer: bit.ly/Quillinnutrition


3,156 Days since:  gluten
 
0
800
1600
2400
3200
MARTHAJOY's Photo MARTHAJOY Posts: 913
8/16/08 1:59 A

My SparkPage
Send Private Message
Reply
When I was first identified with Celiac, my numbers on the tTG test were over 200. Now, avoiding glutens, I'm down to 98. My doctor said that if I'm around someone eating bread or breaded things (like my husband eats), that could raise my numbers, too. Need to check my pills again; the last 3 yrs, have seen changes and increases in pills, and I haven't checked the new ones yet.
GOOD LUCK to us all!



Edited by: MARTHAJOY at: 8/16/2008 (01:57)
 
0
800
1600
2400
3200
GFNOMAD's Photo GFNOMAD Posts: 1,508
8/15/08 2:07 P

My SparkPage
Send Private Message
Reply
From everything said on the Celiac listserve, if you are still getting above the normal range, you are getting gluten into your diet somehow. It may be cross contamination or hidden glutens such as floured coatings to make things shake better etc.
Read some of the recommended books for more detailed explanations. Try and get them from your local library if possible.
Yosolinda - if you are not consuming gluten, blood tests may show negative depending on successful you have been on a gf diet.

Edited by: GFNOMAD at: 8/15/2008 (14:05)
Been to Tombouctou and back! Truely! (Timbuktu in English) photos and more Travel Adventures at www.flickr.com/photos/cdnnomad/sets
Recognizing Celiac Disease www.recognizingceliacdisease.
com/21.html

10 Tests that could save your life www.50plus.com/health/10-tests-that-
could-save-your-life/1676/

Dr. Alejandro Junger - 'Healing the gut' (from Dr. Oz) www.doctoroz.com/videos/3-day-jumpst
art-cleanse


 current weight: 134.4 
 
151
144.5
138
131.5
125
TEDDYBEARDONNA's Photo TEDDYBEARDONNA Posts: 11,953
8/15/08 8:38 A

My SparkPage
Send Private Message
Reply
I have never got below 7 and I was very surprised it was even that when I had worked so hard and was very careful. My biggest issue is cross contamination, since I don't have a GF home. I also like to eat out and I am sure they don't pay close attention. My high was over 200 when I was first diagnosed. I know I should be concerned about the numbers, but I just do the best I can and move on.



 Pounds lost: 10.2 
 
0
4.5
9
13.5
18
YOSOYLINDA's Photo YOSOYLINDA Posts: 5,948
8/15/08 7:48 A

My SparkPage
Send Private Message
Reply
I've not been tested either, or even talked to my physician about it yet, but I was diagnosed with food allergies years ago (so I'm thinking it's a definite possibility.) I've been looking over some of the gluten-free books available in the library, and preparing myself "just in case." Either way, I need to avoid wheat, which I've never done all that well--along with corn, soy, rice, tomatoes and green beans, if my original tests were accurate.

Either way, it's time for retesting, and I hope to get things going before the serious allergy seasons for other things (Mountain Cedar, Live Oak, etc.) get into full swing a bit later in the year.

Good luck on your journey!

Linda C

Linda C
Oklahoma (CST)

"Food is essential to life; Therefore, make it good."
--S. Truett Cathy (Chick-Fil-A)

Come on 5%!!!!!

Member Since Nov 06!


 Pounds lost: 0.0 
 
0
10
20
30
40
MARGIE100%PURE's Photo MARGIE100%PURE Posts: 1,514
8/15/08 12:47 A

My SparkPage
Send Private Message
Reply
Hi Janissue, I have not been diagnosed, but from the books I have read recently some symptoms can last for 24 months or more after you start a gf diet and life style--even while doing your best. Congratulations for your forward progress. One Doctor wrote that most people take 36 months just to get out of the denial stage! ! The gluten tolerance limit is quoted by a Finland study of 300milligrams of gluten per day on average. Even a simple coating on a vitamin pill or one teaspoon of birthday cake is the average daily limit. And thanks for the other tTG test range as I have yet to be tested. I think for me it is next week!

The greatest love story is your own.
If you miss out of life to the fullest; they win.
You are the happiness master of your own mind.
Thought is an active dynamic energy to harmonize and corrolate good.
Clear all paths to love thru forgiveness.
I may not recognize the significance until some time later.
Is my resistance to change really that strong?
Impatience does not provide the time to learn the lesson;
Awaken new ways to approach the dissolving of a problem;
JANISSUE Posts: 20
8/14/08 7:25 P

Send Private Message
Reply
Hi, I've been diagnosed with celiac disease since March of this year. My first Transglutaminase (tTG) IgA result was 178 which was very high. I just had a recheck on my blood test after 5 months and my number now is 22 which is still above the normal range. Does anyone know if this is normal. Does it take a while for a blood test to register in the normal range which I undeerstand from my gastroentologist is from 0 - 3. Anything above 3 is positive for celiac disease.
I've not intentionally eaten anything with gluten since I was diagnosed 5 months ago so I'm wondering if anyone can share their experience as to how long it took to lower their IgA numbers to the normal range.

Page: 1 of (1)  

Report Innappropriate Post

Other Celiac Disease and Gluten-Free General Team Discussion Forum Posts

Topics: Last Post:
Pls share your 'glutened' symptoms 7/6/2013 9:04:45 AM
Are you a GF Vegan / Or considering it? 8/1/2013 10:07:43 AM
anyone have dermatitis herpetiformis? 11/13/2013 10:29:32 PM
Gluten free and lower cholesterol 10/13/2013 12:06:08 AM
Gluten Free menu Planner - Free! 9/30/2013 2:01:46 PM

Thread URL: http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x948x17679288

Review our Community Guidelines