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homemaker
Joined: 06 Oct 2009
Posts: 47
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 Posted: Tue Oct 06, 2009 12:36 pm Post subject: Blood Tests Negative? Now what? |
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I just got my bloodwork back...Dr. says I am negative
I have a sister who has Celiac dx by endoscopy and bloodwork
I have had chronic constipation and gas for years..joint pain and fibromyalgia like symptoms for years as well....
I went Gluten Free after the blood work and have been gluten free for 4 days now and feel SO much better the stomach pains are gone and constipation gone...it is nothing short of amazing...
BLOOD WORK BELOW:
Celiac IgA Serum Units mg/dL Ref Range (68-378) 209
Tissue Transglutaminase Ab IgA Units (0-19) 10
Gliadin Antibody IgA Units 3 |
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ostrich
Joined: 30 Mar 2006
Posts: 4960
Location: Nebraska
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| Posted: Tue Oct 06, 2009 12:43 pm Post subject: |
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The endoscopy is still the gold standard for diagnosis. People have tested negative via blood but positive via endoscopy. So you could always push for that.
However, it sounds like you already have your answer. If you feel good being GF, by all means go GF. You may be one of those people who fall in the "fuzzier" category of gluten sensitivity. It all depends on if you need an official diagnosis or not.
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Ostrich :>--O==={
Time falls away, but these small hours
These little wonders still remain |
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aklap
Joined: 02 Oct 2004
Posts: 10602
Location: WI, USA
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| Posted: Tue Oct 06, 2009 12:44 pm Post subject: |
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Hi Homemaker,
Welcome to the board!
If you are comfortable with the fact you don't have any "solid proof" [aka official diagnosis] that gluten is no friend of yours - you could go GF and stay that way. If you feel better - there's your proof.
Have you had testing done for other medical issues? Have the done a colonoscopy or endoscopy to check things out? That might be another option. If they'll do an EGD, you can request they take samples to check for CD [even though blood says you don't have it. Sero-negative CD is not uncommon]. If you do the EGD, keep eating gluten!
If you feel you and your doc have explored all other medical issues and have come up with nothing - go GF and see how it goes.
You may find other foods along with gluten might be causing you problems.
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Al
“We cannot all do great things, but we can do small things with great love.” Mother Teresa |
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cruelshoes
Joined: 23 Sep 2005
Posts: 3380
Location: Washington State
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| Posted: Tue Oct 06, 2009 1:11 pm Post subject: |
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False negative bloodwork occurs much more frequently than you might expect. Here are some links you may find interesting.
False Negative Serological Results Increase with Less Severe Villous Atrophy
| Quote: | Celiac.com 08/27/2004 – Dr. Peter Green and colleagues at the Department of Medicine, Columbia University College of Physicians and Surgeons, New York, New York, conducted a study designed to determine the sensitivity of the various serological tests used to diagnose celiac disease. To do this they looked at 115 adults with biopsy-proven celiac disease who fulfilled strict criteria which included serological testing at the time of their diagnosis, and a positive response to a gluten-free diet. Out of those studied, 71% had total villous atrophy, and 29% had partial villous atrophy. Serological results indicated that only 77% of those with total and 33% of those with partial villous atrophy actually tested positive for celiac disease, and it did not matter whether the patients presented with classical or silent symptoms. All patients who were positive for anti-tissue transglutaminase had total villous atrophy. The researchers conclude:
Seronegative celiac disease occurs. Endomysial antibody positivity correlates with more severe villous atrophy and not mode of presentation of celiac disease. Serologic tests, in clinical practice, lack the sensitivity reported in the literature. |
Seronegative celiac disease
| Quote: | | Both the anti-tTG and the EMA titers correlate with the severity of villous atrophy [26-29]. As a result in the presence of partial villous atrophy either antibody may be negative. In addition the mode of presentation of the celiac disease, i.e. presence of silent or subclinical celiac disease may be associated with a negative EMA [30]. Clinically seronegative celiac disease is similar to sero-positive celiac disease [23, 28] In view of the possibility of the presence of celiac disease in the absence of a positive anti-tTG or endomysial antibody the presence of a positive IgA AGA should prompt a biopsy [13]. Several studies have demonstrated that reliance on either anti-tTG or endomysial antibody as a single test will underestimate the prevalence of celiac disease [23, 25, 31, 32] |
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-Colleen
Where are we going, and what am I doing in this handcart? |
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homemaker
Joined: 06 Oct 2009
Posts: 47
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| Posted: Tue Oct 06, 2009 1:21 pm Post subject: That must explain a few things... |
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No wonder I feel better without Gluten! It is sort of a no brainer for me to just go Gluten Free...I plan on scheduling a colonoscopy anyway, due to all those years of constipation, without getting graphic, you know..hemorrhoids..and just to be sure...maybe they will take a "look see" by endoscopy as well...but I have already gone GF anyway..why not?
In retrospect my family has an interesting history
Scottish, English & Swedish
Mother
Childhood failure to thrive survived on rice first 3 years of life
Had early onset Alzheimer's Died 1997
Aunt
Infertility
Unknown Muscular Disorder Lost mobility died in her early forties
Sister
Positive for Celiac by both bloodwork and endoscopy
Infertility
Migraines
Positive response to Gluten Free Diet
Self
Chronic Constipation
Late Puberty
Migraines
Dental Problems
Stomach Pain for the last few years due to bloating and gas
Has physical just a few weeks ago
Bloodwork for Celiac Negative
Positive Response to Gluten Free Diet |
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