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Thread: Celiac: Positive blood test, negative biopsy?

  1. #31
    Join Date
    May 2008
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    Philadelphia
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    Kim,

    That was an interesting article. It sounds like he does the biopsy when there is a negative blood test, but when there is a positive TTG and EMA he does consider that to be diagnostic of celiac without a biopsy.

    The only reason he recommends the biopsy (both before and after the GF diet) is to see if the damage is healing. Children with Celiac who start a GF diet generally heal completely within 1 year, but adults sometimes take as long as 2 years and may not heal completely (http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/). He mentioned as an example a 70 year old patient who may have other issues that need to be monitored through regular endoscopies. So, I think his rationale for ongoining endoscopies is more related to adults than kids.

    I don't think the endoscopy does any harm, but still feel that a positive TTG/EMA indicates an autoimmune sensitivity to gluten and will necessitate a GF diet no matter what the endoscopy results may be...?
    Dad to Leah and Anna, married to Pam
    Leah is 16, dx 1/1/2007 at age 8. Omnipod since 2007, Guardian CGM 2007-2013, Dexcom G4 2007-present. Sang the National Anthem at the 2013 JDRF Walk!

    CGMS Calibration - DCCT: The Study That Forever Changed Treatment of Type 1 Diabetes - Improved Glycemic Control in T1 children Using Real-Time CGMS

  2. #32

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    Quote Originally Posted by Darryl View Post
    Kim,

    That was an interesting article. It sounds like he does the biopsy when there is a negative blood test, but when there is a positive TTG and EMA he does consider that to be diagnostic of celiac without a biopsy.

    The only reason he recommends the biopsy (both before and after the GF diet) is to see if the damage is healing. Children with Celiac who start a GF diet generally heal completely within 1 year, but adults sometimes take as long as 2 years and may not heal completely (http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/). He mentioned as an example a 70 year old patient who may have other issues that need to be monitored through regular endoscopies. So, I think his rationale for ongoining endoscopies is more related to adults than kids.

    I don't think the endoscopy does any harm, but still feel that a positive TTG/EMA indicates an autoimmune sensitivity to gluten and will necessitate a GF diet no matter what the endoscopy results may be...?
    Actually he says in his article that most of the healing hasn't been done by a year so he moved the interval time from 1 year to 2 years

    • Ive increased the biopsy interval from one to two years because only 40% of people had complete recovery after 12 months gluten-free5. EmA and TTGA disappearance is only a marker of how successful gluten exclusion has been and is not a reliable indicator of bowel recovery. Does persisting villous atrophy matter if the patient is doing well on a gluten-free diet? Intuitively, one might like to keep a closer eye on the patient with persistently flat biopsies,


    His example of the 70 year old patient has nothing to do with the healing rate.. he said nothing about children vs. adults on the healing problem and who heals quicker.. Its one of his many reason on why an endoscopy is important.

    • just because youre celiac doesnt mean you cant have something else. Its important to have a good look for bleeding lesions in the upper gut even if the blood work for a seventy year old with anemia says celiac (and check out the colon too, but thats a topic for another day).
    K, 11yrs, dx 1/06 @35months
    Pumping Since 7/06 w/ MM
    PUMPING w/T:Slim 5/14
    Apidra
    Celiac dx 5/08
    Cgms-ing 11/07
    Dexcom G4 2/14
    Podding for 'tubing' breaks 4/11

  3. #33

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    Quote Originally Posted by Darryl View Post
    Has anyone had a positive celiac blood test, followed by a negative biopsy?

    If so, what did the doctor then advise that you do?
    Did they want you repeat the biopsy each year?
    Did they say to eat GF, or not?
    If they say it's a "false positive" what is their explanation for the elevated antibodies?
    My daughter had a positive celiac blood test followed by a negative biopsy.

    The doctor advised that she continue to eat regularly and that we repeat the biopsy each year. She said not to eat gluten free. She assured us that Hannah will end up with celiac (her number was 85) but that, given her age and the fact that she was just diagnosed with diabetes, life would be easier if we just waited until the positive biopsy to put her on the GF diet.
    Susan
    Mom to
    Hannah born 11/9/2004; diagnosed 10/24/2008
    Sam, non-D, born 6/9/1999
    Wife to Glenn

  4. #34
    Join Date
    Apr 2006
    Location
    Asheville, NC
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    994

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    Our experience with this was nearly 3 1/2 years ago now but here goes. Zeb had a slightly elevated TTG about 6 months after being diagnosed type 1. The endo told us it could be a false positive due to type 1 particularly because it was only slightly elevated. We saw a GI who suggested endoscopy which we did. He took several samples and told us there was absolutely no sign of celiac. He told us at the time that the TTG test was good for screening but did give false positives often associated with other autoimmune disease, type 1 being the most common. He also told us that newer, more reliable tests were around the corner, I imagine those are now in use since it's been a few years. Zeb's results have all been in normal range since and he has never shown any symptoms. He is due for yearly tests in November so I am hoping the trend continues. We were told that as long as his test results remained normal we should assume the first test was in fact a false positive, if the results were to change retesting would be needed but the GI doctor thought it was unlikely that would happen. The more time passes the less I worry about it.
    Robyn
    happily married to Eric
    mom of Zebulon - born 5/15/04 dx 1/16/06 pumping with Animas 1250
    Raven - 11/15/97
    Dakota - 7/1/00

    I have a dream that one day my child will be able to say "I USED to have type 1 diabetes".

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