Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Don't Understand Test Results


Carollynb

Recommended Posts

Carollynb Newbie

Hello All.

My son's blood tests came back but I don't really understand them. His allergist only said that he doesn't have celiac's according to the test results.

Here's what I'm looking at:

Endomysial Antibody IgA Negative Negative

t-Transglutaminase (tTG) IgA 1 U/ml 0-3

Negative 0-3

Weak Positive 4-10

Positive >10

Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive eneropathy.

Immunoglobulin A, Qn, Serum 23 mg/dL 20-100

The rest of the results are for his food and environmental allergies. The interesting thing about those is that his wheat allergy only shows to be a class II allergy but whenever he's exposed to foods with wheat (very rarely!) he has a reaction in less than 24 hours, sometimes in less than 8, like diarrhea, hot, itchy skin followed by these starnge blister/bumps that sometimes take a week or more to clear.

Would the daily antihistamine (Zyrtec) affect his results or lack of exposure to gluten? (His diet has been gluten-free for almost 2 years now.)

Also, does anybody have a latex allergy (I am but never tested) and know what the following results mean?:

IgE+Latex

Immunoglobulin E, Total 157 IU/mL 0-352

K082 Latex .05 Abnormal kU/L .05-.07

Thanks for taking the time to read this.


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



Celiac.com Sponsor (A8-M):



Rachel--24 Collaborator

I guess I'm a little confused....has he been on the diet for 2 years now...with only rare exposures to gluten? That would make any testing for Celiac Disease unreliable.

Even if your son has Celiac he would not test positive having been on the diet for such a long time.

He would have to have gluten as a constant in his diet for at least 3 months prior to testing.

ShayFL Enthusiast

And basically he is IgA deficient making all of those IgA tests useless.

Carollynb Newbie
I guess I'm a little confused....has he been on the diet for 2 years now...with only rare exposures to gluten? That would make any testing for Celiac Disease unreliable.

Even if your son has Celiac he would not test positive having been on the diet for such a long time.

He would have to have gluten as a constant in his diet for at least 3 months prior to testing.

Gluten free for almost 2 years. His toothpaste, soap, etc. has been gluten-free, mostly by accident but thank goodness!

3 months on gluten!?! I don't think I could take seeing him miserable for so long; not to mention tolerating his mood swings. I know I will keep him on a gluten-free diet anyway but it would certainly be nice to have an actual diagnosis.

When he was born he had severe reflux (treated with meds and a cow's milk protein free formula), projectile vomiting, almost head to toe eczema (still has some that flares), extreme fussiness, diarrhea, bouts of blood in his stool (GI only tested stool, no other tests), and anemia.

He was dx with a milk allergy and tested for some food allergies (milk, nuts, eggs) at 12 months of age and retested at 24 months and 3 yrs.

Like I said, his allergist doesn't believe he has celiac's bc of blood tests and the fact he is not malnourished. He also thinks if I use Enterolab for testing I'll get a positive result because they know we (as parents or patients) want that answer. I think that's ludicrous to think that a lab would "falsify" results just to appease patients.

What is involved with a gluten challenge? Does that just show sensitivity or intolerance?

Thanks for your reply to this.

Carollynb Newbie
And basically he is IgA deficient making all of those IgA tests useless.

What does that mean? What is Endomysial Antibody IgA versus Immunoglobulin A, Qn, Serum?

ShayFL Enthusiast

Your son IgA was 23 and the range starts at 20. Ranges are just that. Ranges. And what is normal for one may not be normal for another. You need to have a good amount of IgA (and your son doesnt have hardly any) to produce the IgA antibodies that they tested all of the others in the first place. He doesnt produce much of those IgA's....so all of those IgA tests are useless.

And Enterolab does not falsify results. I tested with them 2 years ago and everything came up negative. Everything. Some were close, but I was negative. And now positive. If they were on a crusade to just appease patients and get people to go gluten free then I would have tested positive the first time. I didnt.

Rachel--24 Collaborator
What does that mean? What is Endomysial Antibody IgA versus Immunoglobulin A, Qn, Serum?

Endomysial Antibody IgA is an antibody which the immune system produces during active Celiac Disease.

When there is no gluten in the diet the immune system does not produce these antibodies.

You can go here for an interpretation of the antibody tests.

https://www.celiac.com/articles/57/1/Interp...ults/Page1.html

Immunoglobulin A, Qn, Serum....this test is to determine how much IgA is produced. Some people are deficient which means that they cannot produce enough IgA to test positive even if they do have active Celiac Disease. If this is the case they would need to test for IgG antibodies instead of IgA.

There is an Endomysial Antibody IgG test available and that can be used in cases of IgA deficiency.

Your son tested on the low end of the reference range for IgA....I dont know that he is deficient since he is producing some....although I'm not sure that its enough to have positive bloodwork.

Regardless, your son is not consuming gluten and has been on the diet for too long to have any of these tests come back positive. The allergist should have informed you that the tests are useless when already on the gluten-free diet. I'm not sure that this Dr. has alot of knowledge/experience with diagnosing Celiac Disease??

What is involved with a gluten challenge? Does that just show sensitivity or intolerance?

A gluten challenge simply means to go back on gluten for the purpose of having the tests done....or to see how the body responds when gluten is reintroduced....and then again when gluten is eliminated.

Without the tests you will not be able to diagnose Celiac Disease. He may be intolerant to gluten and yet not have Celiac Disease. Enterolab cannot diagnose Celiac Disease.....they can only tell you whether or not your son is sensitive to gluten. If you already know that he improves while on the diet there is really no reason to test with Enterolab as it wont necessarily tell you anything that you dont already know.

Also, Enterolab claims to be able to detect antibodies in stool up to 1 year after the removal of gluten from the diet.....but your son has been off gluten for twice that long.

You can have the gene testing to see if your son carries either of the main Celiac genes. Having the genes doesnt necessarily mean that he has Celiac.....many people have the genes but dont ever develop the disease. However, if he is responding negatively to gluten and has a positive response to the diet it may be that he does have Celiac if he has a genetic predisposition.

Also, why would the allergist think he would be malnourished if he's been on the diet for 2 years now?? The point of the diet is to avoid damage/symptoms. If he DOES have Celiac after 2 years he would be healed and malabsorption shouldnt be an issue.

If he is still having problems after 2 years on the diet....and when no gluten is sneaking in... I would be looking into other factors.


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



Celiac.com Sponsor (A8-M):



Rachel--24 Collaborator

Another thing about Enterolab....The Dr. who runs the lab (Dr. Fine) has never published anything for peer review. I, myself have been waiting for a few years now....however, it doesnt appear that he is willing to publish his findings.....which to me indicates that there may be problems with the testing.

Basically, at this point noone really knows how valid the Enterolab tests are....and it is still an unproven method of testing.

  • 1 month later...
tipnpat Newbie
He also thinks if I use Enterolab for testing I'll get a positive result because they know we (as parents or patients) want that answer.

I started to question all of the positive results I was seeing with Enterolab. I fully expected my two sons' tests to come back positive. But my older son who has IgG food intolerances (including wheat) testing completely absolutely negative and he is not IgA deficient. My other son's were positive. The numbers were only mildly elevated but Dr. Fine's explanation says it's like a pregnancy test and the number doesn't really matter. You either are or you aren't. I would still like for him to publish his work so it can be an accepted form of testing.

Tip

gfpaperdoll Rookie

If Dr Fine publishes his work that is not a sign that anyone will accept it. You might want to read the book "Good Calories Bad Calories" by Gary Taubes, that explains all these "studies" & published papers used as fact in the U.S.

tipnpat Newbie
If Dr Fine publishes his work that is not a sign that anyone will accept it. You might want to read the book "Good Calories Bad Calories" by Gary Taubes, that explains all these "studies" & published papers used as fact in the U.S.

Believe me, I'm not a believer in studies and "the facts." I think it is all skewed and so thick in numbers and circumstances that it can't possibly be absolute. I just meant that if he published something then it would at least be more open for debate. As it is, he's just dismissed. I'm a believer.

Tip

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,103
    • Most Online (within 30 mins)
      7,748

    Judithann
    Newest Member
    Judithann
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.6k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • TerryinCO
      Thank you for the information. I did order/receive GliadinX to have on hand in the event of suspected exposure.
    • Dc91
      Just had a letter through from the Celiac team, they’ve diagnosed me through my bloods, no endoscopy/biopsy needed. I guess I’ll be sticking around on this forum and I’m sure I’ll be back soon. thanks for all your help 
    • Ryangf
      Hi everyone I’m somewhat new here- at least this is my first time posting.    I have been having persistent stomach issues since July of 2024- so around 7 ish months I’ve been having issues. At first I thought it was just a bout of constipation because I had had that issues before but- it simply did not go away at first I went to urgent care for my bloating and stomach pain and constipation and they basically didn’t really check anything and just passed it off as constipation and gave me stool softeners. Then I started having joint pain and a sharp stinging sensation in my back that debilated me and urgent care passed it off as muscle spasms. Then I finally went to my primary care doctor and they put me on a lowfodmap diet- and that didn’t help…(I was still eating gluten product),then I told her that didn’t help and then she didn’t contact me for several weeks not even trying to pinpoint the cause of my discomfort. So I started doing my own research from reputable sites- and analyzed my symptoms. Then suddenly I started losing weight rapidly 23 pounds in a month to be exact and I had like pale yellowish stool. Then I started realizing maybe it was gluten that was irritating me and I cut it out and started feeling a little bit better but still had some discomfort. Then I contacted my doctor again for a blood test for it and it came back negative. But I still was worried at least if it could be anything else going on in my stomach though I was sure it was celiac disease. Then after me practically begging her to let me get an endoscopy eventhough she insisted I was fine- I choose a doctor to see that was not my primary care doctor to evaluate me and they recommended I get an endoscopy…and I had an endoscopy a few weeks later. That came back negative for celiac with my biopsy too and no other damages from my ultra sound I got or anything. So I was naturally extremely confused. So I started to feel like maybe I was over exaggerating. But then I started researching on endoscopies- and found out for a confirmed positive blood test and endoscopy I had to be CURRENTLY eating gluten something neither of my doctors notified me about nor the GI specialists. So I realized my doctor probably would not order me another endoscopy…and also I just decided do I really need to go through the pain of eating gluten again for an endoscopy- when I could just stop eating it? So I weighed it and at the moment I decided- I would not get an endoscopy and just be gluten free- and for a little bit- I was fine- then my stomach started hurting again- a few times could’ve been from cross contamination but I also saw that a lot of the gluten free products I was eating contained corn and I tested it and stopped eating corn products for a few days and felt better. So I also did research on corn and found that some people with celiac disease can respond negatively to corn because it has a protein in it similar to gluten. So I cut that out completely and felt better for a long time. Except for ocassional corn cross contaminations I felt fine- until recently where I think I may have had corn products a few times consistently- and not noticed despite my stomach upset because I had been dealing with stomach issues so long I thought it was the norm. Now for the past few days possibly because of the consistent corn exposure for the past month I’ve been having an upset and bloated stomach eventhough I stopped eating the corn- because I think (though studies are not sure on corn damaging celiacs stomach lining) corn may have been damaging my stomach lining again during that time- and I may be developing some new intolerances or conditions. I want to go get that checked out but I don’t want to be gaslighted by doctors again- cause it makes me feel crazy. And I’m also debating on whether or not I want to go through the pain and stomach damage again for 2-6 weeks to really confirm if I have celiac disease- and I’ve been even more reluctant because now I am in classes again and I have to be in class consistently standing up a lot (culinary class) for multiple hours on end and I don’t think me being fatigued and sick and in pain is going to be good for me during that time. Should I get an endoscopy to confirm if I have celiac disease again this time actually eating gluten up to that point- or should I just first try to figure out what intolerances I may have developed or other conditions via a doctor- or wait for a while until my stomach lining has repaired sufficiently or at least enough before getting an endoscopy and a blood test again at a time when I am not busy a year or so from now while maintaining a gluten free corn free diet until my endoscopy is booked and then I will begin eating gluten and corn up until the endoscopy? (Sorry I know that was a lot.) 
    • trents
      I have no specific recommendations but I would suggest looking for products that are advertised as produced in a dedicated gluten-free facility. That should eliminate one possible route of cross contamination. It doesn't guarantee that none of the ingredients going into the product are totally gluten free but is should eliminate adding more CC to the mix via processing machinery.  One of the issues you may be experiencing is that testing has shown that a significant percentage of "Certified Gluten Free" products can test far in excess of 10ppm. There was an article appearing in this forum back last summer outlining the results of testing that showed this to be true. So, it may be somewhat of a pig in a poke when you buy this stuff, regardless of how it is billed. It may be safe for you if it actually fits within the stated requirements of it's billing.
    • Hauama
      I can still have a reaction from “certified gluten free” products I don’t like having to use the eat and see what my body does approach are there really any purely gluten free products or do I just have to make all of my own food? 
×
×
  • Create New...