How Many Of You Had Negative Bloodwork, But Positive Biopsy?

[Bis-quit]

Just curious, how many of you had negative bloodwork for celiac done, but then went on to test postive with the biopsy?

[Igg postive]

Many do not have the choice of biopsy if their bloodwork is negative. Doctors many times use positive bloodwork to determine to go on to a biospy.

What has been your experience?

[Bis-quit]

My doctor insists that I do the biopsy, he told me that bloodwork is not accurate enough to properly diagnose celiac.

Many do not have the choice of biopsy if their bloodwork is negative. Doctors many times use positive bloodwork to determine to go on to a biospy.

What has been your experience?

[cyberprof]

Just curious, how many of you had negative bloodwork for celiac done, but then went on to test postive with the biopsy?

I did. I had the endoscopy with biopsy first (doc thought I had an ulcer) and it showed stage Marsh I, meaning early celiac disease. I had the blood test to follow-up.

I am so thankful that the biopsy was taken and that they looked for thngs other than an ulcer. With the amount of bad things I had going on, I'd hate to have waited to see what the damage was if I'd waited until the blood test was positive and/or biopsy at Marsh II or III.

[salexander421]

I have not had my endoscopy yet but I had negative bloodwork and have an endo scheduled for Fri.

[cyberprof]

My doctor insists that I do the biopsy, he told me that bloodwork is not accurate enough to properly diagnose celiac.

Well, that may be true and in that case, he is probably a pretty good doctor. The blood test shows lots of false negatives and very few false positives. In my case, it would have been true.

In any event, Bis-quit (cute name, BTW), go gluten-free after the endoscopy even if it shows negative. Sometimes, the diet is the truely the only way to really see if someone should be off gluten.

[MsCurious]

I did. I had the endoscopy with biopsy first (doc thought I had an ulcer) and it showed stage Marsh I, meaning early celiac disease. I had the blood test to follow-up.

I am so thankful that the biopsy was taken and that they looked for thngs other than an ulcer. With the amount of bad things I had going on, I'd hate to have waited to see what the damage was if I'd waited until the blood test was positive and/or biopsy at Marsh II or III.

Lucky you, cyberprof! Sounds like you have a great doctor. I have DQ2.5 also, and am very curious about your story. How did it unfold, symptoms, timeframe etc... Share if you'd like. Really happy for you that you got such an easy diagnosis.

[cyberprof]

Lucky you, cyberprof! Sounds like you have a great doctor. I have DQ2.5 also, and am very curious about your story. How did it unfold, symptoms, timeframe etc... Share if you'd like. Really happy for you that you got such an easy diagnosis.

I didn't have a very good doctor but was told that my clinic - Virginia Mason in Seattle - routinely checks biopsies for celiac.

As far as history, I started getting symptoms in high school but for some reason I thought everyone had stomach problems, namely pain (sometimes writhing on the floor) and diarrhea after meals. I also had low level depression but again thought it just ran in the family. Other symptoms over the years were near-constant mouth ulcers (2-3 times a month) and anxiety that got worse over the years. I was also tested for rhuematoid arthritis (which they said was negative) in high school and had pretty bad joint problems since hich school.

Luckily I had no fertility problems - had two healthy kids and no miscarriages.

My symptoms got worse as I got older. I had a huge stomach and bloating - I gained 3 inches in the waist in a month - told doc I thought I had ovarian cancer but when that was negative she didn't ask for other symptoms or look for other causes. I also gained about 20 pounds in the year immediately proceeding diagnosis.

I blamed stress. Went through menopause early and quickly -bam - at age 47. After getting what I thought was stomach flu where I was literally unable to get off the toilet for hours while also throwing up, I went to the doctor and told her I thought I had an ulcer because of the pain. She didn't even try to ask about other symptoms, just scheduled the endoscopy. The biopsy was negative for h. pylori and ulcers.

I was 47, so about 30 years undiagnosed.

I had almost immediate relief from the diet and knew right away that even though I had no villi damage the diet was the solution for me. I would wake up in the morning amazed that I wasn't in pain - joint pain, back pain all mostly gone. Anxiety and depression much better. No more mouth/canker sores unless glutened. Much improved digestion.

I think I'm pretty sensitive to CC but am lucky that I feel pretty good.

[salexander421]

I didn't have a very good doctor but was told that my clinic - Virginia Mason in Seattle - routinely checks biopsies for celiac.

As far as history, I started getting symptoms in high school but for some reason I thought everyone had stomach problems, namely pain (sometimes writhing on the floor) and diarrhea after meals. I also had low level depression but again thought it just ran in the family. Other symptoms over the years were near-constant mouth ulcers (2-3 times a month) and anxiety that got worse over the years. I was also tested for rhuematoid arthritis (which they said was negative) in high school and had pretty bad joint problems since hich school.

Luckily I had no fertility problems - had two healthy kids and no miscarriages.

My symptoms got worse as I got older. I had a huge stomach and bloating - I gained 3 inches in the waist in a month - told doc I thought I had ovarian cancer but when that was negative she didn't ask for other symptoms or look for other causes. I also gained about 20 pounds in the year immediately proceeding diagnosis.

I blamed stress. Went through menopause early and quickly -bam - at age 47. After getting what I thought was stomach flu where I was literally unable to get off the toilet for hours while also throwing up, I went to the doctor and told her I thought I had an ulcer because of the pain. She didn't even try to ask about other symptoms, just scheduled the endoscopy. The biopsy was negative for h. pylori and ulcers.

I was 47, so about 30 years undiagnosed.

I had almost immediate relief from the diet and knew right away that even though I had no villi damage the diet was the solution for me. I would wake up in the morning amazed that I wasn't in pain - joint pain, back pain all mostly gone. Anxiety and depression much better. No more mouth/canker sores unless glutened. Much improved digestion.

I think I'm pretty sensitive to CC but am lucky that I feel pretty good.

You mentioned you had no villi damage so did they diagnose you due to your improvements with the diet or what?

[cyberprof]

You mentioned you had no villi damage so did they diagnose you due to your improvements with the diet or what?

No, I have a full celiac official diagnosis. My level was Marsh I, which is defined as: "Marsh stage 1: increased number of intra-epithelial lymphocytes, usually exceeding 20 per 100 enterocytes"

See this wikipedia article under "Pathology". Open Original Shared Link Anyone with villi damage is Stage III, which has A, B1 and B2 levels. My damage was enough to be noticed with a microscope.

[salexander421]

No, I have a full celiac official diagnosis. My level was Marsh I, which is defined as: "Marsh stage 1: increased number of intra-epithelial lymphocytes, usually exceeding 20 per 100 enterocytes"

See this wikipedia article under "Pathology". Open Original Shared Link Anyone with villi damage is Stage III, which has A, B and C levels. My damage was enough to be noticed with a microscope.

Ok, thanks for the info!

[chasbari]

Me. Negative blood work, very positive biopsy done because of overwhelming anecdotal evidence that suggested that we needed to go in this direction plus a very cooperative and understanding physician.

[zus888]

I had an endoscopy and colonoscopy as a routine follow-up for Crohns Disease. The endoscopy showed villous blunting and the doc wanted to diagnose me right then and there with celiac. I insisted on the blood tests because I wasn't convinced. The transglutaminase was normal and only one of the gliadin antibodies was a weak positive. If any other doc had seen the bloodtests, they wouldn't have done a biopsy based on those results. So, it was just dumb luck that I was diagnosed. I have no outward symptoms of celiac, that I'm aware of.

[salexander421]

Thanks for posting this question Bis-quit, this gives me reassurance that I'm doing the right thing by having a endoscopy despite my negative blood work.

[MsCurious]

I did. I had the endoscopy with biopsy first (doc thought I had an ulcer) and it showed stage Marsh I, meaning early celiac disease. I had the blood test to follow-up.

I am so thankful that the biopsy was taken and that they looked for thngs other than an ulcer. With the amount of bad things I had going on, I'd hate to have waited to see what the damage was if I'd waited until the blood test was positive and/or biopsy at Marsh II or III.

Hey cyberprof, if you see this... may I ask you a few questions? Which blood tests did they do on you that were negative? I'm so curious, how long you think you might have had symptoms before you were diagnosed. Like you I have DQ2.5 marker and negative blood tests. Doctor suggested doing biopsy AFTER I try gluten-free for 6-8 weeks! OMG... I told him I want to see a different GI "Joe" Anyway, interesting that you have same marker, and neg blood tests like me. Curious about your story. Glad things got resolved for you... I would count you a lucky one.

WOW... okay I just read the last few posts here..and MANY of you had negative bloodwork and positive biopsy! Hmmm... that makes me wonder if I should just bite the bullet and get the biopsy before I completely go gluten-free. Every time I do that (mostly unintentionally) for a few days I feel about 99.9% better.

[MsCurious]

Thanks for posting this question Bis-quit, this gives me reassurance that I'm doing the right thing by having a endoscopy despite my negative blood work.

When is your biopsy scheduled? How long till your challenge is done? Good luck to you!

[cyberprof]

Hey cyberprof, if you see this... may I ask you a few questions? Which blood tests did they do on you that were negative? I'm so curious, how long you think you might have had symptoms before you were diagnosed. Like you I have DA2.5 marker and negative blood tests. Doctor suggested doing biopsy AFTER I try gluten-free for 6-8 weeks! OMG... I told him I want to see a different GI "Joe" Anyway, interesting that you have same marker, and neg blood tests like me. Curious about your story. Glad things got resolved for you... I would count you a lucky one.

WOW... okay I just read the last few posts here..and MANY of you had negative bloodwork and positive biopsy! Hmmm... that makes me wonder if I should just bite the bullet and get the biopsy before I completely go gluten-free. Every time I do that (mostly unintentionally) for a few days I feel about 99.9% better.

MsCurious, I don't know what blood tests were done. When the doc called and told me about the positive celiac biopsy, everything just fell into place. I went gluten-free for one day (as best I could) and felt so amazing that I didn't care what the blood test would say. Plus I'd already talked to people here who told me that a positive biopsy overruled a negative blood test. The day after I went gluten-free I served a frozen Beef Bourguignon dish that I had made previously and it had like 2 tablespoons of flour in eight whole servings. Sick as a dog. So technically I was still eating gluten when I had the test but was gluten-free for one day before that.

However, that being said, I wonder if you're on to something with the negative blood tests. My son also has the same 2.5 gene and his blood test was negative. But I'll never know what his biopsy would say because he didn't have one. Endoscopies for kids have more risk than that for adults, so my husband nixed it. Who knows, maybe someday he'll do a gluten challenge. Or maybe he'll be a biochemist and develop a better, quicker, cheaper, faster and not requiring gluten!!

Now you've got me curious to see what my blood tests results showed. Maybe I'll ask. Sorry I can't be of more help. Oh and Patty in Jersey is also 2.5.

[MsCurious]

MsCurious, I don't know what blood tests were done. When the doc called and told me about the positive celiac biopsy, everything just fell into place. I went gluten-free for one day (as best I could) and felt so amazing that I didn't care what the blood test would say. Plus I'd already talked to people here who told me that a positive biopsy overruled a negative blood test. The day after I went gluten-free I served a frozen Beef Bourguignon dish that I had made previously and it had like 2 tablespoons of flour in eight whole servings. Sick as a dog. So technically I was still eating gluten when I had the test but was gluten-free for one day before that.

However, that being said, I wonder if you're on to something with the negative blood tests. My son also has the same 2.5 gene and his blood test was negative. But I'll never know what his biopsy would say because he didn't have one. Endoscopies for kids have more risk than that for adults, so my husband nixed it. Who knows, maybe someday he'll do a gluten challenge. Or maybe he'll be a biochemist and develop a better, quicker, cheaper, faster and not requiring gluten!!

Now you've got me curious to see what my blood tests results showed. Maybe I'll ask. Sorry I can't be of more help. Oh and Patty in Jersey is also 2.5.

Thanks for answering so quickly. I am really curious... just read a study where something like 177 people ALL diagnosed with postive celiac were given blood tests (EMA) of those 177 ... 22 had NEGATIVE results. They were ALL "older" and all had significantly more advanced celiac and more digestive symptoms than the others that tested positive. I just had a negative EMA.. thinking I should get the biopsy before I go gluten-free. I should really copy and paste the correct figures... but it was very close to that. I'll try to find it and edit this post. Thanks again for your reply!

Okay ...here's the direct quote from the study: "Dr. Katri Kaukinen and colleagues at the University of Tampere looked at 177 celiac disease patients and found that 22 were serum EmA-negative. A common theme among the 22 serum EmA-negative patients was that they were older and had more abdominal symptoms and other complications that indicated a more advanced stage of celiac disease than their serum EmA-positive counterparts."

Interesting, huh?