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8 replies to this topic

#1 imsohungry

 
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Posted 25 April 2011 - 05:57 AM

Hi guys,

I haven't written in awhile. The truth is that I am homebound b/c of my frequent diarrhea and illness. Nobody knows what it is! I've been hospitalized 2 or 3 times in the last 6 months and been to the ER 4 or 5 times. I am VERY sick.

Anyway, they had diagnosed me with Celiac a long time ago and then changed it to ulcerative colitis and now changed it to nothing!

I requested a copy of my medical records and discovered that 18 months ago when I was tested for Celiac, these were my results:

IGA antibody: 13 (11 is cut-off for "normal")
IGA serum: 44 (80-something is cut-off for normal)
TTG antibody was 3 (negative)


I was told I didn't have any signs of gluten intolerance/celiac, but only one of those tests came back a definite negative. What are your opinions? What other tests have ya'll had done? My great aunt has Celiac, my mother never goes to the doctor, but she has (at a minimum) IBS and rectal cancer. I may not have Celiac disease, but I do wonder about gluten intolerance and would like to ask for a full panel of bloodwork just to see what I can find out. I have fissures and hemmoroids that the surgeon said he can't fix until the GI or GP gets my diarrhea under 10 times a day.

I have had a biopsy recently, and it was normal.

Thanks for any feedback!
Julie
  • 0
Loves of my life: God, my hubby, and my baby boy!

"I will never give up on my dreams; I will simply modify my path for reaching them." (JH-me).

"Life's a dance you learn as you go, sometimes you lead, sometimes you follow"
(John Michael Montgomery).

"I'm gonna be somebody, one of these days I'm gonna break these chains" (Travis Tritt).

"Life is better left to chance. I could have missed the pain, but I'd have had to miss the dance."
(Garth Brooks).

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#2 ravenwoodglass

 
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Posted 25 April 2011 - 06:18 AM

Are you gluten free or when tests came back negative did you stick with a gluten diet? If your still consuming gluten my first suggestion would be to go with a very strict trial of the diet for a couple of months as false negatives are pretty common. My own diagnosis was delayed by years because I show false negative on testing.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 txplowgirl

 
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Posted 25 April 2011 - 06:31 AM

I agree with Raven, I think you need to be gluten free. It sounds as if you have at the very least an intolerance. I have never heard of a false positive test. I would start your gluten free diet today.
  • 0

Lupus, Connective Tissue Disease with Fibro type symptoms, Anemia, Anxiety, Depression, RA, Rynauds Syndrome, Chronic Fatigue Syndrome, Erosive Gastritis, Osteoporosis, Degenerative Disc Disease, Scoliosis, Bulging discs in lower back and neck, Pinched Nerves.

 

Soy free, MSG free, mostly Dairy free. Endoscopy shows blunted Villi which dr states as gluten sensitivity, so goin back to being gluten free


#4 imsohungry

 
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Posted 25 April 2011 - 06:36 AM

Hi there! How have you been? :)

Well, only one of my tests came back definitely negative for Celiac, and it was TTG. I can't remember if I was eating gluten at the time or not.

Do you happen to know what tests I should have done to have a full panal of bloodwork for gluten intolerance?

Good hearing from you!
Julie
  • 0
Loves of my life: God, my hubby, and my baby boy!

"I will never give up on my dreams; I will simply modify my path for reaching them." (JH-me).

"Life's a dance you learn as you go, sometimes you lead, sometimes you follow"
(John Michael Montgomery).

"I'm gonna be somebody, one of these days I'm gonna break these chains" (Travis Tritt).

"Life is better left to chance. I could have missed the pain, but I'd have had to miss the dance."
(Garth Brooks).

#5 ravenwoodglass

 
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Posted 25 April 2011 - 07:13 AM

Hi there! How have you been? :)

Well, only one of my tests came back definitely negative for Celiac, and it was TTG. I can't remember if I was eating gluten at the time or not.

Do you happen to know what tests I should have done to have a full panal of bloodwork for gluten intolerance?

Good hearing from you!
Julie


This is only my opinion but since you have already had positive tests I wouldn't even bother to have more testing done. We have recently been hearing of folks being denied health insurance because of diagnosis. With positive blood tests you really already have a diagnosis, IMHO.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#6 GlutenFreeManna

 
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Posted 25 April 2011 - 10:25 AM

I requested a copy of my medical records and discovered that 18 months ago when I was tested for Celiac, these were my results:

IGA antibody: 13 (11 is cut-off for "normal")
IGA serum: 44 (80-something is cut-off for normal)
TTG antibody was 3 (negative)


Thanks for any feedback!
Julie


I agree with Raven. You have a positive test. The one positive trumps the negative ones. You dr was no good. They should have at least advised you to try goign gluten free. Get a new dr and get retested (since this was 18 months ago it could change) if you really need a dr diagnosis befor egoing gluten free. If you are even gluten light at the time of testing it could make the results false negative. So retest if you cna and try the diet ASAP no matter what the results say.
  • 0
A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

#7 imsohungry

 
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Posted 25 April 2011 - 01:02 PM

Thank you! I'm just trying to figure this out. Sigh... You guys are more knowledgable than the doctors.

Blessings,
Julie
  • 0
Loves of my life: God, my hubby, and my baby boy!

"I will never give up on my dreams; I will simply modify my path for reaching them." (JH-me).

"Life's a dance you learn as you go, sometimes you lead, sometimes you follow"
(John Michael Montgomery).

"I'm gonna be somebody, one of these days I'm gonna break these chains" (Travis Tritt).

"Life is better left to chance. I could have missed the pain, but I'd have had to miss the dance."
(Garth Brooks).

#8 cassP

 
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Posted 25 April 2011 - 04:22 PM

Hi guys,

I haven't written in awhile. The truth is that I am homebound b/c of my frequent diarrhea and illness. Nobody knows what it is! I've been hospitalized 2 or 3 times in the last 6 months and been to the ER 4 or 5 times. I am VERY sick.

Anyway, they had diagnosed me with Celiac a long time ago and then changed it to ulcerative colitis and now changed it to nothing!

I requested a copy of my medical records and discovered that 18 months ago when I was tested for Celiac, these were my results:

IGA antibody: 13 (11 is cut-off for "normal")
IGA serum: 44 (80-something is cut-off for normal)
TTG antibody was 3 (negative)


I was told I didn't have any signs of gluten intolerance/celiac, but only one of those tests came back a definite negative. What are your opinions? What other tests have ya'll had done? My great aunt has Celiac, my mother never goes to the doctor, but she has (at a minimum) IBS and rectal cancer. I may not have Celiac disease, but I do wonder about gluten intolerance and would like to ask for a full panel of bloodwork just to see what I can find out. I have fissures and hemmoroids that the surgeon said he can't fix until the GI or GP gets my diarrhea under 10 times a day.

I have had a biopsy recently, and it was normal.

Thanks for any feedback!
Julie

if your Iga Serum was only 44- then u are Iga Deficient- which means any of your antibody tests that test Iga will be INNACCURATE! only your Igg tests could be looked at to show anything. Iga deficiency is also common in those with Celiac.
  • 1
1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#9 mushroom

 
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Posted 25 April 2011 - 04:58 PM

Whether or not you were eating gluten at the time of the biopsy, it is possible to have a false negative on this test but have positive blood results. The biopsy depends on the skill of the doctor, whether he takes enough samples, and whether he takes them from the right places.

I would consider myself diagnosed and start a gluten free diet immediately so that you can clear up your diarrhea, fissures and hemorrhoids. :)
  • 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

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