Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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

Bis-quit

Recommended Posts

Bis-quit Rookie
Bis-quit
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Igg postive Rookie
Igg postive
Posted

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 Rookie
Bis-quit
Posted
  • Author

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 Enthusiast
cyberprof
Posted

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 Enthusiast
salexander421
Posted

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

cyberprof Enthusiast
cyberprof
Posted

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 Enthusiast
MsCurious
Posted

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. :)

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


cyberprof Enthusiast
cyberprof
Posted

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 Enthusiast
salexander421
Posted

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 Enthusiast
cyberprof
Posted

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 Enthusiast
salexander421
Posted

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 Apprentice
chasbari
Posted

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 Contributor
zus888
Posted

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 Enthusiast
salexander421
Posted

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 Enthusiast
MsCurious
Posted

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" :P 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 Enthusiast
MsCurious
Posted

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 Enthusiast
cyberprof
Posted

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" :P 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 Enthusiast
MsCurious
Posted

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?

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,939
    • Most Online (within 30 mins)
      7,748
    Michelle C.
    Newest Member
    Michelle C.
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Theresa2407
      Is this celiac?

      By Theresa2407 · Posted

      Usually when I digest gluten or wheat I have a 4 hour window before reacting.  If it is immediate it may be an intollerence to another food.  Dairy, Frutose, and bacteria (SIBO) will react with many of the celiac disease symtoms.Has your Doctor ran a  Fructose test which is measuring your Fruit Sugar?  A Hydrogen Beath Test which checks your intestinal bacteria and Dairy?After my biopsy and blood work, these (3) tests were also ran, along with allergy tests, which allery test was sent out of State.  It was a mouth swab. How fast you heal depends on the diet you are following… The following are my personal recommendations to healing. I talk to many newly diagnosed people who start the gluten-free diet with pasta, breads, snacks, and pizza. After a month or so, they do not know why they don’t feel any better and still are sick with their original symptoms: They worry the diet is not working for them. For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. They need a good support group, with people who have been through this and knows what works!  This is what I have found will work for you.                                                                                            First 6 weeks should be:                                                                                                                                 lean meat (beef, pork, chicken, turkey, salmon, sardines, buffalo, deer)                                                   fresh vegetables (steamed or roasted with a little Olive Oil) with 2 cups per day being raw (5 servings; a serving is 1/2 cup)                                                                                                                                      fresh fruit (3 servings; include strawberries, blackberries and blueberries daily)  Makes good shakes with Almond milk.                                                                                                                                        A hand full of almonds daily (pecans and walnuts can be substituted)                                                        brown rice, lentils, Citrucel daily (or the equivalent) Good source of fiber. I use Calm because my body doesn’t absorb Magnesium and I only need to take once in evening.                                                    No dairy of any kind (milk, cheese, yogurt, No breads, No past,  No oats, No pizza, No gluten-free beer, No snacks like cake, biscuits, pies, donuts.                                                                                                Many dietitians will tell you to follow a gluten free diet but you have to heal first. Don’t misunderstand me, dietitians are our friends and help us.                                                                                              10% of people with gluten-free will be intolerant to dairy                                                                                  10% can not tolerate oats                                                                                                                     After the six weeks, you can start to add these foods back into your diet. 1 new food every 4 days; this way you know if you react to this food.                                                                                                  Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. Only gluten-free Oats are acceptable.                                                                                                                                              You should have results within 3 days of following a correct healing diet. Bloating should be leaving, migraines should be gone. Might take bowels a little longer to respond. If you start with 5 times a day on the Citrucel and cut back as your bowels return to normal; then use 1 Tbsp. daily. This works if you have constipation or diarrhea.                                                                                                        Meanwhile make sure you have had a Dexa test (bone density) and a blood test to check your vitamin and mineral levels: Zinc, D,K,B,C and iron levels.                                                                                  Don't take supplements while healing as your body is not accepting them and they will flush through your body.                                                                                                                                              Have you had a breath test for Dairy, Fructose, and bacteria overgrowth? Should have done when first diagnosed.                                                                                                                                        How fast you heal depends on the diet you are following… The following are my personal recommendations to healing. I talk to many newly diagnosed people who start the gluten-free diet with pasta, breads, snacks, and pizza. After a month or so, they do not know why they don’t feel any better and still are sick with their original symptoms: They worry the diet is not working for them. For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. They need a good support group, with people who have been through this and knows what works! This is what I have found will work for you. First 6 weeks should be: lean meat (beef, pork, chicken, turkey, salmon, sardines, buffalo, deer) fresh vegetables (steamed or roasted with a little Olive Oil) with 2 cups per day being raw (5 servings; a serving is 1/2 cup) fresh fruit (3 servings; include strawberries, blackberries and blueberries daily) a hand full of almonds daily (pecans and walnuts can be substituted) brown rice lentils Citrucel daily (or the equivalent) Good source of fiber. No dairy of any kind (milk, cheese, yogurt) No breads No pasta No oats No pizza No gluten-free beer No snacks like cake, biscuits, pies, donuts. Many dietitians will tell you to follow a gluten free diet but you have to heal first. Don’t misunderstand me, dietitians are our friends and help us. 10% of people with gluten-free will be intolerant to dairy 10% can not tolerate oats After the six weeks, you can start to add these foods back into your diet. 1 new food every 4 days; this way you know if you react to this food. Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. Only gluten-free Oats are acceptable. You should have results within 3 days of following a correct healing diet. Bloating should be leaving, migraines should be gone. Might take bowels a little longer to respond. If you start with 5 times a day on the Citrucel and cut back as your bowels return to normal; then use 1 Tbsp. daily. This works if you have constipation or diarrhea. Meanwhile make sure you have had a Dexa test (bone density) and a blood test to check your vitamin and mineral levels: Zinc, D,K,B,C and iron levels. Don't take supplements while healing as your body is not accepting them and they will flush through your body. Have you had a breath test for Dairy, Fructose, and bacteria overgrowth? Should have done when first diagnosed. Remember to have a tTg IgA blood test repeated at 6 months then every year after, with another scope done in 3 years. Only way to know if you are healed. I don’t have all the answers; we are learning everyday new ways of doing things, but this is a start! Remember to have a tTg IgA EMA blood test repeated at 6 months then every year after 
    • Wheatwacked
      Is this celiac?

      By Wheatwacked · Posted

      Marsh 3b is the Gold Standard of diagnosis for Celiac Disease.  Until recently, regardless of antibody tests, positive or negative, you had to have Marsh 3 damage to be awarded the diagnosis of Celiac. As I understand you,  you were having constant symptoms..  Your symptoms improved on GFD, with occassional flare ups. Did your doctor say you do and you are questioning the diagnosis? Regarding your increasing severity when you get glutened it is "normal".  Gluten acts on the Opiod receptors to numb your body.  Some report withdrawal symptoms on GFD.  I was an alcoholic for 30 years, about 1/2 pint of voda a day. Each time I identified a trigger and dealt with it, a new trigger would pop up.  Even a 30 day rehab stint, with a low fat diet (severe pancreatis) during which I rarely had cravings.  Stopped at a Wendys on the way home and the next day I was drinking again.  20 years later, sick as a dog, bedridden on Thanksgiving, after months of reasearch, I realized that gluten free was my Hail Mary.  Back in 1976 my son was diagnosed at weaning by biopsy with Celiac Disease and his doctor suggested my wife and I should also be gluten free because it is genetic.  At 25 years old I felt no gastro problems and promised if I ever did I would try gluten free.  Well, I forgot that promise until I was 63 and my wife 10 years dead.  Three days of gluten and alcohol free, I could no longer tolerate alcohol. Eleven years gluten and alcohol free, with no regrets. Improvement was quick, but always two steps forward and one back.  Over time I found nineteen symptoms that I had been living with for my entire life, that doctors had said, "We don't know why, but that is normal for some people". Celiac Disease causes multiple vitamin and mineral deficiency.  It is an autoimmune disease, meaning your immune system B and T cells create antibodies against ttg(2) in the small intestine in Celiac Disease, and sometimes ttg(3) in skin in Dermatitis Herpetiformus.  'Why' is poorly understood.  In fact, it wasn't even known that wheat, barley and rye gluten was the cause.  Celiac Disease was also called Infantilism, because it was deadly, and believed to only be a childhood disease. So, as part of your recovery you must deal with those deficiencies.  Especially vitamin D because it contols your immune system.  Virtually all newly diagnosed Celiacs have vitamin D deficiency.  There are about 30 vitamin and minerals that are absorbed in the small intestine.  With Marsh 3 damage you may be eating the amount everyone else does, but you are not absorbing them into your system, so you will display symptoms of their deficiency.   As time passes and you replenish your deficiencies you may notice other symptoms improve, some you did not even know were symptoms. Our western diet has many deficiencies built into it.   That is the reason foods with gluten are fortified.  Gluten free processed food are not required to fortify.  Vitamin D, Iodine, choline.  The B vitamins, especially Thiamine (B1) run deficient quickly.  We only store enough thiamine for 2 weeks so the symptoms of Gastrointestinal BeriBeri can come and go quickly.  Magnesium, zinc, etc. each having its own symptoms affecting multiple systems.  High homocystene, an indicator of vascular inflamation can be cause by deficient Choline, folate, B6 and or B12.  Brain fog symptoms by deficient choline, iodine, thiamine B1. Dietary intake of choline and phosphatidylcholine and risk of type 2 diabetes in men: The Kuopio Ischaemic Heart Disease Risk Factor Study  
    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      I cut out the rice because it was affecting my stomach at the time ... not necessarily dermatitis herpetiformis. It was Tilda Basmati Rice, sometimes wholegrain rice. I was willing to do whatever it took to heal. Too much fiber also disagrees with me as I have UC.
    • trents
      Is this celiac?

      By trents · Posted

      But you didn't answer my question. When you consume gluten, is there an identifiable reaction within a short period of time, say a few hours?
    • Scott Adams
      Is this celiac?

      By Scott Adams · Posted

      You can still have celiac disease with negative blood test results, although it's not very common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/   
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.