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


RNRN

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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 


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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.

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    • trents
      Unfortunately, the development of celiac disease usually is not an end in and of itself. It usually brings along friends, given time. It is at heart an immune system dysfunction which often embraces other immune system dysfunctions as time goes on.
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    • trents
      This does not seem to be an anaphylactic response but I agree it would be wise to seek allergy-food sensitivity testing. You might look into ALCAT food sensitivity testing.
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      @Celiacpartner, I agree with Scott. We have a food festival yearly in the town I live in, with artisan food stalls everywhere. I spoke to the owner of one of the artisan burger stalls, enquiring if the burgers were gluten-free when I said I was Coeliac ... he said he had a serious anaphylactic allergy to fish himself. He possibly carries an epi-pen or two everywhere he goes. I would go see an allergist as soon as possible as suggested.
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      After years of stable management, developing new symptoms to historically safe foods like nuts and fish strongly suggests a secondary issue has developed. It is highly unlikely to be a new gluten issue if the foods themselves are certified gluten-free. The most probable explanations are a new, separate food intolerance (perhaps to a specific protein in certain nuts or fish) or a true IgE-mediated food allergy, which can develop at any age. The symptoms you describe—cramps and the urge to vomit—can be consistent with either. It is crucial he sees an allergist for proper testing (like a skin prick or blood test) to identify the specific culprit and rule out a serious allergy, as reactions can sometimes worsen with repeated exposure.
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