Jump to content

  • 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):

Positive Biopsy Followed By Negative Blood Work

JodyM75

Recommended Posts

JodyM75 Apprentice
JodyM75
Posted

My GI diagnosed me with celiac after my EGD the beginning of April, which showed "mild celiac" in a biopsy.  (Yes, I know you either have it or you don't, but those are the words they used when they told me - I'm assuming that means "mild damage").

 

Blood work just came back today as normal.  This is what they told me when I called:

 

IGG:  3  (she said anything under 20 was considered normal)

IGA:  7  (same as above, under 20 was normal)

IGM: antibodies not detected

 

-How common are false negatives?

-I was gluten free for about 4 weeks prior to the blood being drawn.  When I asked my GI, he said no, don't start eating gluten again before the test.  Thoughts?

-What are my next steps?

 

Any other thoughts would be helpful.  Also, I don't present with the obvious and debilitating symptoms many of you have so I can't really tell if a gluten-free diet is helping.  The most I can say is my pressing fatigue has cleared up.

 

Thank you all so much!

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

My initial blood work was barely positive and my only symptom was anemia (went to GI for routine colonoscopy and he suspected celiac disease) but my biopsy showed Marsh Stage IIIB moderate to severe-damage. I have not gone back for another blood test since I was barely positive on it, I am no longer anemic, and my husband is gluten-free, so I am very sure I am diet compliant. Also, I should say that anemia was my only symptom, but between my blood test and biopsy (7 weeks), I consumed enough bread that brought intestinal symptoms (e.g. Rock feeling in stomach, etc.) and I get those symptoms when i get glutened eating out.

Why no blood test prior to the endoscopy? I would think insurance would require it.

Looks like you were just at the beginning stages of celiac disease and four weeks of the diet brought your antibodies down. Good job!

Let's see what the others have to say.

CajunChic Explorer
CajunChic
Posted

Look at your pathology report and read what type of damage was seen, (increased IELs, villi blunting, scalloping, was the structure normal, crypt ratios, etc.)

Mine was only increased IELs (Marsh 1) and negative bloodwork, still got a celiac dx.

False negatives happen all the time, especially if you're catching the disease in the beginning. That's what my GI told me about having negative bloodwork. He said I had seronegative celiac.

Everyone has different symptoms, keep going gluten-free and see how you feel a couple months from now. Some people don't have any symptoms but are damaging their bodies.

Good luck!

JodyM75 Apprentice
JodyM75
Posted
  • Author

Cycle:  It was a fluke.  I have a hiatal hernia and just switched GIs in January after I found out my previous GI diagnosed me with Barretts on sight only, no biopsy.  I had been researching wheat and it's relationship with thyroid problems (which run in the family) and stumbled on some things that related celiac to gastroparesis, which my new GI also diagnosed me with in January.  So I was sitting on the gurney waiting to go in for my EGD in April and asked the doc if he was going to do a biopsy for celiac in addition to the Barretts.  He initially said no because I didn't have a medical history, but then saw the gastroparesis DX and said he would do it.  We both said afterward: SO glad we did that! 

 

LMC: I don't have it with me, but it did say something about villi blunting that corresponds with celiac. And I don't have Barretts (yay!). I'll have to take another look to see the exact wording.

 

I have a gut feeling (haha) that I was lucky and caught this early.  Very, very lucky. 

thepeach80 Rookie
thepeach80
Posted

See a new GI. I'm in the process now of getting a second opinion on my scope from last year. I was told there was damage but it was inconclusive. tTG of 4 in January and 5 in June. 

JodyM75 Apprentice
JodyM75
Posted
  • Author

This was my second opinion, with a much better GI than I had before who just looked around and gave me erroneous DXs.  The biopsy showed villious atrophy, the blood tests (apparently) show nothing.  Not sure why I need a second third opinon.  So far, everything he's said and done has been dead on. 

CajunChic Explorer
CajunChic
Posted

Lol!!! I feel the same way! I thank God I found it before I suffered what other celiacs have suffered without the correct dx. Now on to better days : )

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

Celiac.com Sponsor (A8-M):


nvsmom Community Regular
nvsmom
Posted

Blood work just came back today as normal.  This is what they told me when I called:

 

IGG:  3  (she said anything under 20 was considered normal)

IGA:  7  (same as above, under 20 was normal)

IGM: antibodies not detected

 

-How common are false negatives?

-I was gluten free for about 4 weeks prior to the blood being drawn.  When I asked my GI, he said no, don't start eating gluten again before the test.  Thoughts?

-What are my next steps?

 

Those may not be  celiac tests that you have listed there. The Immunoglobulin A, G, and M (IgA, IgG, IgM) are just measurements of the immune response in different area of the body. The IgA is made in the mucosal linings of the body (mouth, intestines, etc) and is deficient in 1/20 celiacs. IgG is the most common immunoglobulin found in all bodily fluids; it fights viruses and bacteria. The IgM is in the lymphatic system and is a first line of defense against infection.

 

Celiac tests are:

tTG IgA and tTG IgG

DGP IgA and DGP IgG (newest tests)

EMA IgA

AGA IgA and AGA IgG (older and less accurate tests)

 

Your tests could be a tTG based tests as they often have reference ranges of 0-20, but I have never ever seen a tTG IgM test before - you might want to double check with the doctor that the correct tests were done.

 

If you need to re-test, you will need 8-12 weeks of 1-2 slices of bread per day to be accurate if you have gluten-free for quite a while.  If you have only been gluten-free for a month, you may not need the full gluten challenge, but there is no way to know for sure. Your GI was wrong, you should have been eating gluten for testing.  :(

 

You could always try testing ASAP. Sometimes autoantibodies linger for months before dropping - the tTG tests are the worst for that. Try testing now, and then again after a gluten challenge if you wish.

 

This report discusses the validity of the tests; page 12 has an easy to read chart: Open Original Shared Link

 

I'm glad that you were not feeling too poorly, but an improvement of any sort would point to celiac disease.  I hope you continue to feel better on the gluten-free diet!  :)

JodyM75 Apprentice
JodyM75
Posted
  • Author

I called them back and they said they run the anti-gliadin, tTG, and anti-endomysial tests.  All my numbers were within normal ranges.

 

I'm still going to go with the biopsy results and just assume at this point that I caught it early.  I may do a gluten challenge at some point in the future to see what happens, but not any time soon. 

nvsmom Community Regular
nvsmom
Posted

I called them back and they said they run the anti-gliadin, tTG, and anti-endomysial tests.  All my numbers were within normal ranges.

 

I'm still going to go with the biopsy results and just assume at this point that I caught it early.  I may do a gluten challenge at some point in the future to see what happens, but not any time soon. 

 

That's definitely the safe, and smart, way to go. Good luck with the diet!  :)

Archived

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

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

  • Member Statistics

    • Total Members
      134,077
    • Most Online (within 30 mins)
      10,442
    terrificterry
    Newest Member
    terrificterry
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...