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JustJust

Do I Have The Highest Antibody Level On This Forum?

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Hello,

My level for all three Antibody tests where each over 100. The range was like 3 -9. Does anyone else have OR HAD an antibody level this high before? I read a few people had 14 or 28 but 100, that's pretty bad don't you think? Also, does anyone know what that means? Does the higher the number mean the worse the condition? Thanks, justine


Justine REGISTERED NURSE

DOB 1-80

Dx w/ celiac disease via Biopsy and Seurologies 08-06-07

Misdiagnosed for 10 years, MisDx on 01-07 with RSD/Complex regional pain syndrome

Anemia, Osteoporosis (bone pain), Nerve Damage, Bruising, Depression, Fatigue, Swollen Glands, Gas, Constipation

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I had one level that was close or over 200, and my other levels were sky high, too (I was diagnosed 3 years ago, so the exact numbers are hazy). However, I've heard that even if your numbers are very high that that doesn't mean the damage is worse. Whether that is true or not, I'm not sure. I'd love to hear what others think about the correlation between damage and testing results. I only had an endoscopy after I continued to have problems 2 years later, so I don't have a scope test result to compare with my blood test results.


*Julie*

Gluten free since December 2004

Soy free since June 2005

Dairy free since July 2006

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Hello,

My level for all three Antibody tests where each over 100. The range was like 3 -9. Does anyone else have OR HAD an antibody level this high before? I read a few people had 14 or 28 but 100, that's pretty bad don't you think? Also, does anyone know what that means? Does the higher the number mean the worse the condition? Thanks, justine

When my daughter was diagnosed in May, she tested at just under 100.

When she was retested after 3 months gluten-free, she was at 7.6.

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I don't know what the exact number was, he just said I was "well over 100". I didn't know enough then to ask for specifics!


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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Guest kivmom3

My levels at diagnosis were at 98. Biopsy was stage 3A of the disease which is destructive but not flattened villi.

Gg

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If it goes by that number to see how damaged you are, I must have been wayyyyy over 100. I didnt have a blood test at the time I was diagnosed, I had the biopsy. I had complete villi atrophy. I had none, not even a little bit. I imagine my number must have been sky high, now I just had a blood test about a month and a half ago and I am at a 4, and very happy with it!!


Stephanie

Gluten free since October 05

son born severly premature due to

celiac

"True love stories never end" Richard Bach

"Did you ever stop thinking and forget to start again?" AA Milne

If you live to be a hundred, I want to live to be a hundred minus one day so I never have to live without you" AA Milne

Swimming Instructor #2 and Town Crier of Rachelville

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My daughter's was 124, she was 3 years old at the time. 6 months later, we had it down to a 4....I was pretty happy about our progress! I don't know what stage villous atrophy she had though, our GI just said she had flattened villi. I didn't know there were different stages at the time or I would have asked. She was one sick little puppy.


Tamara, mom to 4 gluten & casein free kiddos!

Age 11 - Psoriasis

Age 8- dx'd Celiac March 2005

Age 6- gluten-free/cf, allergy related seizures

Age 4 - reflux, resolved with gluten-free/cf

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Hello,

My level for all three Antibody tests where each over 100. The range was like 3 -9. Does anyone else have OR HAD an antibody level this high before? I read a few people had 14 or 28 but 100, that's pretty bad don't you think? Also, does anyone know what that means? Does the higher the number mean the worse the condition? Thanks, justine

Here is my bloodwork from my diagnosis in '05, including the lab ranges. I had total villous atrophy and was near death.

TISSUE TRANSGLUTAMINASE, IGA (UNITS)

8/16/05 - 189.05

Lab ranges

Less than 20 units ..... NEGATIVE

20 - 30 units .......... Weak Positive

Greater than 30 units .. Moderate to Strong Positive

Different labs have different ranges. When you see someone referencing a lower number as being a positive result, it could simply be because the lab uses a different scale of measurement.

I will also mention that my son was diagnosed at about the same time as I was, and his TTG was nearly as high as mine was. Yet he had no outward symptoms.

Don't get bogged down in the number. Your antibodiy levels can go down rather quickly once you beging the gluten-free diet.


-Colleen

Dx 8/05 via bloodwork and biopsy (total villous atrophy)

13-year old son Dx 11/05 via bloodwork and biopsy

Daughters (16 and 5) have tested negative via bloodwork

A woman is like a tea bag - you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

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Wow those numbers seem huge. I was diagnosed before my mother was last week, and her numbers were totally different. So when I asked the doc about my levels, she said she only tested me on one test (the tissue one), not the other IGA levels, where my mother was tested for all three.

I don' think the numbers have much to do with it, because it is just the inflammatory reaction levels. I think they come down once you maintain a gluten free environment. As someone said to me, there is neither 'good or bad' celiacs. You either have it, or not. But hey, I'm in Australia so it might all be 'upside down-under' here!!


Mum to 3 wonderful "mini-me's"

Misdiagnosed for how long!

Dx with celiac disease Aug 2007

gluten-free since Oct 2007 (I'm gettin' there!)

DD1, DS2 & DD3 >> ?

Husband just loves fishin'...

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My son's was 222 at age 10. A year later it was under 20, where it is supposed to be.


Kim

"Life isn't about how to survive the storm

but how to dance in the rain."

Positive bloodwork 1/9/06

gluten-free since 1/12/06

Very positive dietary response

DS (12 years old)

Biopsy 7/7/06 ~ Diagnosed Celiac 7/12/2006

gluten-free since 7/15/2006

DD (almost 6)

HLA-DQ2 positive

Celiac Bloodwork negative 2 different times

Still eating gluten for now.

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Ty's test result was for Anti-endomysial antibodies "screened at a titre of 1:2.5" and he had 1:160. I don't know the result for the IgA.

I do have the results for everyone else's IgA, but our Anti-endomysial antibodies just said "negative". I think they said because Ty's Anti-endomysial antibodies (sorry, I don't know the abbreviation for that) were that high that they didn't bother to firgure results for IgA. I don't know why or anything about that. After the biopsy we were told he had areas with normal villi and other areas with severely blunted villi.

He has never had follow-up blood work done. He's been gluten free for 2 years and he has his next follow-up appointment with the GI probably in March (about 2.5 years gluten-free).


Linda, Mom to Ty (11 years old)

Ty was diagnosed by blood test June 7/05

biopsy Aug 11/05, diagnosis confirmed Aug 18/05

Mom, Dad and big brother Celiac-free.

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Hello,

My level for all three Antibody tests where each over 100. The range was like 3 -9. Does anyone else have OR HAD an antibody level this high before? I read a few people had 14 or 28 but 100, that's pretty bad don't you think? Also, does anyone know what that means? Does the higher the number mean the worse the condition? Thanks, justine

Hello, My levels were also over 100, too numerous to count. The higher the number does indicate that the disease is full blown.

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Wow, my intial levels were IgM 166 and ttg-IgA about 150 with IgA 25 (i think) and that was about 4 months ago. I just had my levels checked week or so ago and they were higher! IgA was 173 and tTG-IgA 217..... Did anyone have this same problem immediately after going g.f.? Maybe I'm too ocd and having my levels checked so soon after diagnosis was kind of moot? Any thoughts?

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