Waiting on biopsy results but wanted opinion on bloodwork

[Lynnard]

New member here.  I have had bloodwork which is "suggestive" of celiac and just had an endoscopy and waiting on results.  My question is:  based on this bloodwork, as well as being symptomatic, would you be surprised if the biopsy does not confirm Celiac?

Deamidated Gliadin Abs, IgA           83 (H)    Reference range: Negative 0 - 19, Weak Positive  20 -30, Moderate to Strong Positive >30

t-Transglutaminase (tTG) IgA             4 (H)     Reference range:  Negative 0 - 3, Weak Positive 4 - 10, Positive >10

Immunoglobulin A, Qn, Serum         35 (L)     Reference range: 87 - 352

Thanks for your feedback.

[Scott Adams]

Welcome to the forum. You have two positive blood tests for celiac disease, and have symptoms, so there is a high probability that you have it, or non-celiac gluten sensitivity, regardless of the biopsy results. Unfortunately studies have shown that biopsies often miss taking samples in the appropriate areas, or taking enough samples, or properly interpreting the samples that are taken, so false negatives can be common.

Were you eating gluten daily, lots of it (at least 2 slices of wheat bread's worth) for 6-8 weeks leading up to the blood test, and for at least 2 weeks before the endoscopy? If  not, your blood test results might be lower scores than if you had followed this protocol, and your biopsy results could also be false negative.

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. 

 

 

[trents]

Another factor revealed in your test results is that you are IGA deficient. Look at the line: Immunoglobulin A, Qn, Serum         35 (L)     Reference range: 87 - 352

We also call that "total IGA". IGA deficiency results on in artificially low scores in the individual IGA celiac antibody test scores. In other words, the test score for the tTG-IGA would likely have been higher if you were not IGA deficient. From: 

 

IgA Levels/Deficiency Blood Test

This should always be included in any blood panel for celiac disease, but it does not test directly for celiac disease, and is done to determine the accuracy of the other blood tests. People who are IgA deficient may score lower, of have no measurable levels on certain celiac disease blood tests. This test measures the levels of Immunoglobulin A (IgA) in the bloodstream. IgA is an important antibody that plays a significant role in the immune system, particularly in protecting the body's mucosal surfaces (e.g., respiratory and digestive tracts). Low IgA levels can indicate IgA deficiency, a condition where the body does not produce enough IgA, leading to an increased risk of infections and other health issues. The IgA Levels/Deficiency Test helps healthcare providers diagnose and monitor IgA-related conditions.

Other Names for the IgA Levels/Deficiency Test:

Immunoglobulin A (IgA) Test

Total IgA Test

Serum IgA Test

IgA Serum Levels Test

IgA Blood Test

IgA Quantitative Test

IgA Antibody Test

IgA Immunodeficiency Test

 

Whether or not your biopsy shows celiac damage may also depend on how long ago the onset of celiac disease began.

Edited January 21 by trents

[Lynnard]

Thank you!  This is super helpful and confirms everything I have read. I was definitely eating lots of gluten before both testing and endoscopy. If the biopsies do come back negative, I'm wondering how conclusion/distinction is made between celiac and gluten intolerance is made.  Or does it matter because presumably recommendation of gluten-free diet will be the protocol??  

[trents]

Let's talk about terminology for the sake eliminating (as much as possible) confusion. Unfortunately, the terms "gluten sensitive" and "gluten intolerant" have, historically, been used indiscriminately. There are two primary categories of gluten disorders whose "official" terms are 1. celiac disease and 2. Non Celiac Gluten Sensitivity or NCGS for short. 

I believe there is an evolution toward using the term "gluten intolerance" to refer to celiac disease and "gluten sensitive" to refer to NCGS. I say that because the words "gluten sensitivity" are actually found in the official medical term for the non celiac medical disorder involving gluten. Does that make sense?

The difference between celiac disease and NCGS is that celiac disease causes inflammation in the small bowel lining and (over time) does damage to it so that it becomes inefficient in absorbing nutrients from what we eat. This is the area of the intestinal track where all of our nutrients are absorbed. Of course, this can lead to any number of other medical problems. NCGS, on the other hand, does not cause inflammation or damage to the lining of the small bowel and therefore does not produce the antibodies that celiac disease antibody tests look for. Neither will NCGS, therefore, produce a positive biopsy result. NCGS and celiac disease, however share many of the same symptoms in the area of GI distress and NCGS is 10x more common than celiac disease. There is, at the present time, no defining test for NCGS so an NCGS diagnosis is arrived at by first eliminating celiac disease for which we do have tests for. Having said that, some experts believe that NCGS can be a precursor to celiac disease. 

Yes, you are correct in stating that both conditions require a gluten free diet. 

So, in the absence of official testing for celiac disease (and official testing done under the proper conditions) a person who is experiencing distress when consuming gluten cannot be certain whether they are dealing with celiac disease or NCGS. Not to have an official diagnosis of celiac disease while actually having the condition makes it difficult for some folks to stay on the gluten free bandwagon. It's just the psychology of the situation and wanting to rationalize away a very inconvenient and socially isolating medical condition.

Edited January 21 by trents

[Lynnard]

Thank you - that makes perfect sense and I understand. celiac disease is an autoimmune disease which will cause further damage while gluten sensitivity is different. Based on my symptoms and bloodwork, I am almost certain I have celiac disease.  I kind of hate to hope for a positive biopsy but a negative one would be frustrating for sure. Regardless, I have done a lot of research on gluten-free diet and am prepared to begin a new lifestyle journey - with a lot of questions along the way.  I appreciate your information and advice! 

[Lynnard]

Hi again - I received the biopsy results but haven't had follow up appointment with Dr. yet.  Wondering if you could comment on this:

"Duodenum, random, Biopsy (Cold Forceps): MILD VILLOUS BLUNTING WITH PROMINENT INTRAEPITHELIAL LYMPHOCYTES, CONSISTENT WITH SPRUE (MARSH TYPE 3A). See Comment. Negative for Infectious Organisms, Dysplasia or Malignancy. COMMENT: While characteristic, the histologic findings are not diagnostic for gluten-sensitive enteropathy / celiac disease. A number of additional entities can enter into the differential diagnosis of celiac disease based on the histologic features, including tropical sprue, bacterial overgrowth / stasis, unclassified sprue, specific food allergies, many drugs including NSAIDs, olmesartan and immune checkpoint inhibitors, and a wide range of autoimmune diseases including adult-onset autoimmune enteropathy, diabetes, thyroiditis, lupus and multiple sclerosis and occasionally common variable immune deficiency. History of drug take, celiac serologies, HLA-DQ status and response to a gluten-free diet might be a key for a definitive diagnosis"

They say "consistent with Sprue (Marsh Type 3A)" and then comment that the findings are not diagnostic for celiac disease.  I thought Marsh type 3 was conclusive (and I know that 3A is the best outcome as it relates to intestinal damage). Is this just normal caveat language or am I missing something?  I had appt scheduled for tomorrow but Dr. is sick and now rescheduled to over a week from now.  Appreciate any insight you can offer in the mean time.  Thanks!!

[trents]

By far, the most likely cause of villous atrophy in the Marsh 3 range is celiac disease but there are other possible causes. Did you also have positive antibody tests? My guess is that when you see your physician he/she will declare you to have celiac disease. Of course, the ultimate proof of the pudding will be if you experience definite improvement in symptoms after going gluten free which, since you have now completed testing, you should begin to do.

 

[Lynnard]

Thank you!  Yes - labs are above but Deamidated Gliadin was super high, tTG was a weak positive and Immunoglobulin A was way below normal which gives "bonus points" to the positive tests because it can also cause false negative results.  This information confirms my thinking and I really appreciate your feedback!!!

 

[trents]

"Bonus points". I like that analogy! 

At this point, the following article might be helpful:

Eating out will be the biggest challenge and will present the most threat to avoiding gluten since you don't have control over how food is prepared and handled back in the restaurant kitchen. Become comfortable with asking questions of restaurant staff and requesting that your food be cooked in clean pots/pans/surfaces that haven't been used for gluten containing foods since last washed. In time, you will become more comfortable with taking control in these situations and learn to be appropriately assertive.

One thing that will take time for you to get a handle on is how sensitive you are to minor amounts of gluten such as you might get in cross contamination scenarios. Each of us is different in that sense and there is no substitute for personal experience. When in doubt, however, avoid foods that you feel may be significantly cross contaminated. Better safe than sorry. In time, you will develop a sixth sense about these things.

Edited January 29 by trents

[Lynnard]

Thank you! Eating out/take out has been half of my meals for a while so you are correct that this will be my biggest challenge. This has been a journey and I appreciate your help!