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. - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    2. - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    3. 0

      Celiac Friendly Sports Camps - Academy Camps - Virtual Open House

    4. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Low iron and vitamin d

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

    • Total Members
      133,217
    • Most Online (within 30 mins)
      7,748

    Beanography
    Newest Member
    Beanography
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • cristiana
    • trents
      Cristiana, that sounds like a great approach and I will be looking forward to the results. I am in the same boat as you. I don't experience overt symptoms with minor, cross contamination level exposures so I sometimes will indulge in those "processed on equipment that also processes wheat . . ." or items that don't specifically claim to be gluten free but do not list gluten containing grains in their ingredient list. But I always wonder if I am still experiencing sub acute inflammatory reactions. I haven't had any celiac antibody blood work done since my diagnosis almost 25 years ago so I don't really have any data to go by.   
    • cristiana
      I've been reflecting on this further. The lowest TTG I've ever managed was 4.5 (normal lab reading under 10).  Since then it has gone up to 10.   I am not happy with that.  I can only explain this by the fact that I am eating out more these days and that's where I'm being 'glutened', but such small amounts that I only occasionally react. I know some of it is also to do with eating products labelled 'may contain gluten' by mistake - which in the UK means it probably does! It stands to reason that as I am a coeliac any trace of gluten will cause a response in the gut.  My villi are healed and look healthy, but those lymphocytes are present because of the occasional trace amounts of gluten sneaking into my diet.   I am going to try not to eat out now until my next blood test in the autumn and read labels properly to avoid the may contain gluten products, and will then report back to see if it has helped!
    • lizzie42
      Hi, I posted before about my son's legs shaking after gluten. I did end up starting him on vit b and happily he actually started sleeping better and longer.  Back to my 4 year old. She had gone back to meltdowns, early wakes, and exhaustion. We tested everything again and her ferritin was lowish again (16) and vit d was low. After a couple weeks on supplements she is cheerful, sleeping better and looks better. The red rimmed eyes and dark circles are much better.   AND her Ttg was a 3!!!!!! So, we are crushing the gluten-free diet which is great. But WHY are her iron and vit d low if she's not getting any gluten????  She's on 30mg of iron per day and also a multivitamin and vit d supplement (per her dr). That helped her feel better quickly. But will she need supplements her whole life?? Or is there some other reason she's not absorbing iron? We eat very healthy with minimal processed food. Beef maybe 1x per week but plenty of other protein including eggs daily.  She also says her tummy hurts every single morning. That was before the iron (do not likely a side effect). Is that common with celiac? 
    • Scott Adams
      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
×
×
  • 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.