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Go Back On Gluten Or Not

SAVANNAH21

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SAVANNAH21 Apprentice
SAVANNAH21
Posted

I had a biopsy done and showed Celiac. My doctor then ordered me blood work which, 11 days later, came back negative so he now says I do not have Celiac. During the 11 days that it took for my blood work to come back I cut out all Gluten and was just starting to feel better when he called and said I do not have it. I've read that biopsy trumps blood work so I am going for a second opinion but I cannot get in until the middle of June. Do I continue to go gluten free or should I add it back in and suffer for the next month? I don't think my physician did all the gluten studies so if I stay off gluten it may change the outcome if the second opinion doctor wants to do more. Any suggestions?

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sa1937 Community Regular
sa1937
Posted

I had a biopsy done and showed Celiac. My doctor then ordered me blood work which, 11 days later, came back negative so he now says I do not have Celiac. During the 11 days that it took for my blood work to come back I cut out all Gluten and was just starting to feel better when he called and said I do not have it. I've read that biopsy trumps blood work so I am going for a second opinion but I cannot get in until the middle of June. Do I continue to go gluten free or should I add it back in and suffer for the next month? I don't think my physician did all the gluten studies so if I stay off gluten it may change the outcome if the second opinion doctor wants to do more. Any suggestions?

You're right...a positive biopsy trumps the negative blood work. False negatives are not uncommon on the blood tests for celiac. And the biopsy is considered the "gold standard" for diagnosis of celiac. So I would consider yourself already diagnosed. Your doctor is wrong.

Personally I'd stay gluten-free and never look back. It will not interfere with tests for any other conditions. You couldn't pay me enough to ingest gluten ever again just to satisify a doctor's curiosity.

ravenwoodglass Mentor
ravenwoodglass
Posted

Negative blood work or biopsies are pretty common. If either is positive you have a diagnosis. Personally I wouldn't even bother with a second opinion. Stay gluten free and consider yourself diagnosed.

color-me-confused Explorer
color-me-confused
Posted

I had a biopsy done and showed Celiac. My doctor then ordered me blood work which, 11 days later, came back negative so he now says I do not have Celiac. During the 11 days that it took for my blood work to come back I cut out all Gluten and was just starting to feel better when he called and said I do not have it. I've read that biopsy trumps blood work so I am going for a second opinion but I cannot get in until the middle of June. Do I continue to go gluten free or should I add it back in and suffer for the next month? I don't think my physician did all the gluten studies so if I stay off gluten it may change the outcome if the second opinion doctor wants to do more. Any suggestions?

Hey, join the club! I had a positive biopsy during an EGD for acid reflux, negative bloodwork several months ago. Going gluten-free made a huge improvement in my health (briefly: much better digestion, tons more energy, vastly fewer migraines, lactose tolerance restored, no more joint aches, moodiness/irritability greatly reduced, finally able to get off of Prilosec). However - the biopsy wasn't 100% for celiac, meaning it showed inflammation and damage but it wasn't the atrophied villi that's characteristic of full-on celiac. My GI doc believes that it was detected in the early stages and between the inflammation,health response from the gluten-free diet, and family health history is pretty certain that I've got celiac. The clincher will be a follow-up biopsy in a few months. If the inflammation is gone while on a gluten-free diet, despite more stomach acid (since I'm off Prilosec), then it'll be "officially" diagnosed. Well, we're there already but she likes to be very thorough since there was the conflict between the biopsy and bloodwork. Also she doesn't want to prescribe a restrictive diet in the face of some ambiguity without doing a best effort to resolve it. In the meantime I'm living gluten free and am adjusting to life with celiac disease...I'm convinced at this point. Especially since I've now experienced being "glutened". ugh. I think that was what really erased doubt from my mind...

Look - if you have the biopsy, you feel better on the diet, then don't sweat the bloodwork. You'll see poking around this forum that some people truly suffer before getting a diagnosis. I consider myself lucky to have had this discovery before ending up with atrophied villi, malnutrition, etc etc.

SAVANNAH21 Apprentice
SAVANNAH21
Posted
  • Author

Hey, join the club! I had a positive biopsy during an EGD for acid reflux, negative bloodwork several months ago. Going gluten-free made a huge improvement in my health (briefly: much better digestion, tons more energy, vastly fewer migraines, lactose tolerance restored, no more joint aches, moodiness/irritability greatly reduced, finally able to get off of Prilosec). However - the biopsy wasn't 100% for celiac, meaning it showed inflammation and damage but it wasn't the atrophied villi that's characteristic of full-on celiac. My GI doc believes that it was detected in the early stages and between the inflammation,health response from the gluten-free diet, and family health history is pretty certain that I've got celiac. The clincher will be a follow-up biopsy in a few months. If the inflammation is gone while on a gluten-free diet, despite more stomach acid (since I'm off Prilosec), then it'll be "officially" diagnosed. Well, we're there already but she likes to be very thorough since there was the conflict between the biopsy and bloodwork. Also she doesn't want to prescribe a restrictive diet in the face of some ambiguity without doing a best effort to resolve it. In the meantime I'm living gluten free and am adjusting to life with celiac disease...I'm convinced at this point. Especially since I've now experienced being "glutened". ugh. I think that was what really erased doubt from my mind...

Look - if you have the biopsy, you feel better on the diet, then don't sweat the bloodwork. You'll see poking around this forum that some people truly suffer before getting a diagnosis. I consider myself lucky to have had this discovery before ending up with atrophied villi, malnutrition, etc etc.

my biopsy showed bluntening of the villi and inflammation. is that the same as athropy of the villi?

cahill Collaborator
cahill
Posted

It took me 40+ years and one very wonderful GI doc to get my "official" diagnoses.The only reason I even pursued an official diagnoses was to (hopefully) make things easier for my children and grandchildren .

Do YOU need the second opinion? How do you feel gluten free?.

With or with out an official diagnoses ( a positive biopsy is an Official diagnoses by the way )the treatment is the same: a strict gluten free diet, no prescription needed :P

cahill Collaborator
cahill
Posted

my biopsy showed bluntening of the villi and inflammation. is that the same as athropy of the villi?

My understand is blunting( starting to wear away) of the villi is an earlier stage than atrophy(worn down flat) of the villi.

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color-me-confused Explorer
color-me-confused
Posted

my biopsy showed bluntening of the villi and inflammation. is that the same as athropy of the villi?

Blunting is more than my biopsy showed. Welcome to the club! :P

MissBonnie Apprentice
MissBonnie
Posted

i was hospitalized with pain and inflamation to the point where i couldnt eat for 4 days. i had a positive blood test. when i had the endoscopy the looked ant it and said it was definitely celiac but the biopsy came back negative. i went gluten free anyway and have never looked back. im out of hospital and free from pain for the first time in 6 months. sometimes things just dont add upp but you know what your body needs. stay gluten free i say!

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    • trents
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