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

Elisa/act Lymphocyte Reactivity Testing- Anyone Heard Of This?


RNRN

Recommended Posts

RNRN Newbie

Hi Everyone- 

I went to my doctor recently and had my second Celiac blood test. I have been gluten free for about 9 months now.

My first test was "inconclusive" because of a low IgA. My second test is negative- but again, Im gluten free now.

 

My doctor does not want me to have to eat gluten again for a months, so he suggested ELISA/ACT Lymphocyte reactivity testing.

Has anyone ever heard of this? Its a blood test that tests my white blood cells reactivity to MANY foods and chemical additivies-

gluten /wheat being one of them. 

 

The test is fairly easy, though I have to go off all antihistamines for 4 days, and for 2 days, I have to consume/use NO chemicals-

so no body lotion, hair conditioner, make up, etc. The test also is not covered by insurance, so there is a cost I have to consider. 

Wondering if anyone had heard of this kind of testing, or better yet had any experience with it?

I really do want a true diagnosis as I am getting married soon, and we are talking about children and I want to know

what Im dealing with before I go down that road. But.... Im pretty convinced be it celiac or intolerance, my body doesnt like 

gluten - so I dont want to have to eat it to find out!!
 

Thanks !!
RNRN 


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

I don't know anything about those tests but they are not tests for Celiac disease. 

 

 

Open Original Shared Link

 

Open Original Shared Link

Adalaide Mentor

The reason it isn't covered by insurance is because insurance companies consider it to be experimental/unproven. Open Original Shared Link

 

As pointed out, it is not a valid medical test for celiac and can not be used to diagnose. 

 

This is a fun website that I find has lots of interesting information about "medical" tests, practices and such. Open Original Shared Link

 

If you feel you must have a diagnosis, you must eat gluten. You can also simply get a genetic test to see if you are at risk for the disease and passing the genes, regardless of whether or not you actually have the active disease. Many with celiac have children who don't have it (I have two) and many without celiac have children who do have it. (Where else would we have gotten the first celiac?) 

1desperateladysaved Proficient

All of My comments are from my own personal experience and what I learned when I had antibody tests done.

 

I did an Elisa test from Genova labs.  This looked for antibodies to 60 different foods.  I am not sure this is the same test that you were talking about, but I think it may be similar.  Any food that you were not eating before the test, may false negative, so if you had no gluten lately; you may not get conclusive results for it.  I tried to eat all foods on the tested in the two weeks before the test.

 

Did the test work well for me?  YES, I discovered 49 of 60 items tested that I was eating I had antibodies to. I discovered 11 foods that I was currently eating that I did not have antibodies to.   When I cut these out, my mind cleared.  Now, I am consuming most of them in a 4 day rotation and doing well.

 

My insurance company agreed to pay for this testing in 2012 when I discovered I had celiac.  Since, my tests were ordered by a chiropractor, they later declined.  I feel they were worth every penny I paid for them.

  • 3 years later...
NanCcan Newbie

RNRN, did you ever have the ELISA/ACT testing done?

I, too have been searching for some of the people the local lab tells me are constantly coming by with the kits for this test.  I test negative for IgE (immediate reaction) to all 80+ foods I've had regular blood tests for every couple of years (including wheat and gluten), but I test positive for IGg4 (delayed reactions) on many foods.  Still these tests only mean something if you test positive; negative IGg4 reactions don't necessarily mean the food is safe for you.

The ELISA/ACT is different from Elisa or IgG testing.  It tests lymphocyte response.

I cannot do the elimination diet test because I have a family to cook for, but I have kept a journal of food and other daily inputs, symptoms, weather sleep, activity, etc. for over 10 years. It is still nearly impossible to pinpoint most foods (or more likely combinations of foods) that cause my my delayed symptoms.  Some, however I have definitely been able to pinpoint.

Still, I'd like to try the ELISA/ACT test, as I've spent more than the costs of the tests on growing and buying special foods over the years, and still get reactions to some of those.

Victoria1234 Experienced
 

RNRN, did you ever have the ELISA/ACT testing done?

I, too have been searching for some of the people the local lab tells me are constantly coming by with the kits for this test.  I test negative for IgE (immediate reaction) to all 80+ foods I've had regular blood tests for every couple of years (including wheat and gluten), but I test positive for IGg4 (delayed reactions) on many foods.  Still these tests only mean something if you test positive; negative IGg4 reactions don't necessarily mean the food is safe for you.

The ELISA/ACT is different from Elisa or IgG testing.  It tests lymphocyte response.

I cannot do the elimination diet test because I have a family to cook for, but I have kept a journal of food and other daily inputs, symptoms, weather sleep, activity, etc. for over 10 years. It is still nearly impossible to pinpoint most foods (or more likely combinations of foods) that cause my my delayed symptoms.  Some, however I have definitely been able to pinpoint.

Still, I'd like to try the ELISA/ACT test, as I've spent more than the costs of the tests on growing and buying special foods over the years, and still get reactions to some of those.

She hasn't signed in since 2013.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      30

      My journey is it gluten or fiber?

    2. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

    3. - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

    4. - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,819
    • Most Online (within 30 mins)
      7,748

    Charlette Jillie-Martinez
    Newest Member
    Charlette Jillie-Martinez
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      Is there a digestive enzyme that helps build a healthier gut? I see people taking them but not sure what really works
    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High 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 enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
×
×
  • 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.