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Negative Blood/ Positive Biopsy?

tmk

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tmk Explorer
tmk
Posted

Hello! This may have already been a topic, but I wanted to ask how many people out there have had negative blood results but went on to get a biopsy and it was positive? I keep going back & forth w/ the biopsy thing -- if I really want to deal w/ it all. Whoever wants to share, it would be greatly appreciated!!!!

Thank You! :D

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nikki-uk Enthusiast
nikki-uk
Posted

My husband had negative bloods - and went on to have a positive biopsy (total villous atrophy :blink: ) ...so it came as quite a suprise!!!

Whether you go on to have the biopsy is completely up to you.

For some people, they try the gluten-free diet - feel much better - never look back :)

In a way, I'm glad my hubby had the biopsy as when he started the gluten-free diet he didn't feel any better (he was very ill)

If he hadn't of had proof - he would of abandoned the diet!! :o ...as it turned out, it took around 6 months to feel the benefit of the diet :)

Good luck in what you choose to do :)

GeoffCJ Enthusiast
GeoffCJ
Posted

Me. I was negative on the blood test, but the biopsy showed damage even after having eaten gluten free for 4-6 weeks before biopsy. (no one told me that I needed to keep eating gluten)

Geoff

Nancym Enthusiast
Nancym
Posted
Hello! This may have already been a topic, but I wanted to ask how many people out there have had negative blood results but went on to get a biopsy and it was positive? I keep going back & forth w/ the biopsy thing -- if I really want to deal w/ it all. Whoever wants to share, it would be greatly appreciated!!!!

Thank You! :D

Someone posted something recently that unless you have total villious atrophy there's a 33% chance your blood work will be negative for EMA and TTG.

tmk Explorer
tmk
Posted
  • Author
In a way, I'm glad my hubby had the biopsy as when he started the gluten-free he didn't feel any better (he was very ill)

If he hadn't of had proof - he would of abandoned the diet!! :o ...as it turned out, it took around 6 months to feel the benefit of the diet :)

that's kind of what i'm worried about -- that if i just try the diet and don't see some improvement right away that i would just abandon the thought and go w/ -- well, i must not of been celiac. i'm leaning towards just going and getting the biopsy done -- i've just never had much luck w/ doctors!

Thanks to all of you for your replies!!!!!!!!!!

tom Contributor
tom
Posted

It happens all the time.

Following link goes to a summary of a study by the esteemed Dr. Green at Columbia U.

https://www.celiac.com/st_prod.html?p_prodid=1023

laurie1067 Contributor
laurie1067
Posted
Hello! This may have already been a topic, but I wanted to ask how many people out there have had negative blood results but went on to get a biopsy and it was positive? I keep going back & forth w/ the biopsy thing -- if I really want to deal w/ it all. Whoever wants to share, it would be greatly appreciated!!!!

Thank You! :D

I'm a seronegative celiac. I had an endoscopy done for GERD to see if I have a hernia. The gastro did random biopsies while he had the scope in, and imagine my surprise when they called me with the results! We weren't even looking for celiac disease! My symptoms have been 1) weight loss of 35 lbs in 5 months, 2) peripheral neuropathy, 3) GERD, 4) a "lump" feeling in my chest when I swallow, 5) a bout of fainting and/or seizure, and 6) a persistent cough for a year that didn't respond to allergy or asthma meds. Even the gastro hadn't suspected celiac disease although I had/have a lot of the symptoms. Even now he's still testing me since my blood tests came back negative. (I go back on 6/18...I'm guessing for genetic testing next.) I can tell you that I have noticed a difference since going gluten-free. My GERD is better, the ulcers in my mouth are gone, and my cough is getting better. The endoscopy was no big deal...I rolled on my side & the next thing I knew I was waking up in recovery. I definitely recommend having one done if you are concerned.

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cyberprof Enthusiast
cyberprof
Posted

This Laura had similar results as Laurie.

I had an endoscopy for acid reflux and suspected ulcer. GI did biopsies as a matter of course, not suspecting anything. I had a lot of other symptoms but no-one suspected celiac: D, gas, stomach noises constantly, mouth ulcers routinely, anxiety, low-level depression. All of these have gone on the gluten free diet, except for accidental glutening, which brings them back. Blood tests done after the biopsy were negative.

Good luck to you.

I'm a seronegative celiac. I had an endoscopy done for GERD to see if I have a hernia. The gastro did random biopsies while he had the scope in, and imagine my surprise when they called me with the results! We weren't even looking for celiac disease! My symptoms have been 1) weight loss of 35 lbs in 5 months, 2) peripheral neuropathy, 3) GERD, 4) a "lump" feeling in my chest when I swallow, 5) a bout of fainting and/or seizure, and 6) a persistent cough for a year that didn't respond to allergy or asthma meds. Even the gastro hadn't suspected celiac disease although I had/have a lot of the symptoms. Even now he's still testing me since my blood tests came back negative. (I go back on 6/18...I'm guessing for genetic testing next.) I can tell you that I have noticed a difference since going gluten-free. My GERD is better, the ulcers in my mouth are gone, and my cough is getting better. The endoscopy was no big deal...I rolled on my side & the next thing I knew I was waking up in recovery. I definitely recommend having one done if you are concerned.
newlyfree Rookie
newlyfree
Posted
It happens all the time.

Following link goes to a summary of a study by the esteemed Dr. Green at Columbia U.

https://www.celiac.com/st_prod.html?p_prodid=1023

Hey - my brother's getting tested right now (because I am positive and he has many GI/'classic' symptoms), and I'm wondering if anyone knows if the tests have gotten better since this summary (dated 2004)? I'm afraid if he tests negative he'll give up on further exploration of the possibility of celiac disease :(

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