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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,548
    • Most Online (within 30 mins)
      7,748

    Lunaluv
    Newest Member
    Lunaluv
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.