Celiac Disease Testing at Home (Or the Office)

June 28, 2011 at 4:54 pm 14 comments

[Update! Dr. Dan Leffler is hosting a LIVE Teleseminar about this research study on Monday, July 25th, 3-5 p.m. ET. Dr. Leffler will also talk about the pharmacist’s role in distributing kits and educating consumers. Pharmacists are encouraged to register at www.pharmacybusinessceliacwebinar.com. While you’re at it, learn more about gluten in medications and NFCA’s GREAT Pharmacists training program on CeliacCentral.org.]

I don’t care for needles, which is why I was thrilled when our friends at Beth Israel Deaconess Medical Center (BIDMC) asked us to try out the Biocard fingerprick test kit. The at-home test is part of a research study Dr. Dan Leffler, Director of Clinical Research for The Celiac Center at BIDMC, and his team are conducting.

“While not currently approved by the FDA, these tests are still being researched as it is both imperative and necessary to explore any new possibilities for increasing celiac diagnoses in the U.S.,” said Dr. Leffler, noting the importance of this study.

My daughter has celiac disease, and our family’s trusted clinician, Dr. Ritu Verma at The Children’s Hospital of Philadelphia, recommends screening every 3 years for first degree relatives who have the celiac gene. For me, it was about time for a follow-up antibody test, so I volunteered.

Celiac Disease Home Test Kit

Ready for testing!

When the kit arrived, the staff and I gathered around and disassembled the package. I admit that the instructions were a little difficult to understand (especially because we had a reproduced copy and it was hard to see the photos). But once we understood the process, it was simple as could be.

Fingerprick test for celiac

It's not as scary as it looks.

You place the small, plastic device on your finger and release the trigger. There was a startling pinch, and then a numb feeling that lasted longer than I expected. The kit includes a small tube in which to collect the blood sample, which is then mixed with a solution and dropped onto a test strip that will display a control line. If antibodies are present, the control line will be joined by an additional line after 10 minutes.

While I am thankful that I have access to the most amazing gluten-free food (Shout out to Main Line Baking Company, which made Nancy’s delicious birthday cake this month!), I was still relieved when the 10 minutes passed and only one line appeared on the strip.

Blood sample for celiac disease test

Preparing the solution.

I thought a lot in those 10 minutes about what it would be like for someone who doesn’t know anything about celiac disease to see a second line appear on the test strip. What kind of educational materials would be important to include in such a kit to empower possible celiac patients? Getting the right information is critical, but what’s the best way to share it?

What are your thoughts on this form of testing? Do you think self-diagnosis would increase if kits like this were readily available, and is that a concern? Weigh in with your comments below.

– Jennifer

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14 Comments Add your own

  • 1. Alison St. Sure  |  June 28, 2011 at 5:08 pm

    What antibodies are they testing for?

    Reply
    • 2. Cheryl  |  June 29, 2011 at 9:16 am

      Great question! The Biocard kit tests for IgA antibodies.

      Reply
    • 3. Stev  |  May 29, 2012 at 2:00 pm

      If you want an FDA approved way to get tested for celiac disease without a doctor’s order, there is a website http://celiac-disease-test.com that offers such testing at a local lab (Labcorp). The test is complete, tissue transglutaminase IgA and IgG, deamidated gliadin peptides IgA and IgG, endomysial antibody , and even total serum IGA. Great for those who are tired of visits at doctor’s offices.

      Reply
  • 4. Barb  |  June 28, 2011 at 7:03 pm

    I have mixed feelings about this. Some people will be in denial no matter how easy the test is, including my daughter and sister. People who are willing to believe that they could have it with or without any symptoms probably would be more willing to try this than to take off work to see a doctor and then a lab.

    Reply
  • 5. Traci Lammey  |  June 29, 2011 at 10:20 am

    I have Celiac Disease. I went through extensive blood testing to see whether I had it or not. But my mom & I went through it together, both have it but went through HLA testing which proved to be accurate as far as what diseases were coming up for us. Dead on! With the test for Celiac Disease being sent to Salt Lake City, UT, the Dr. In our case had to call the lab to make sure she was reading the tests right. The at home test would be nice for relatives that don’t have insurance but otherwise I would suggest taking on this task. Human error can play a big part in the outcome. I would like to volunteer myself for Celiac research if there’s a Dr. out there interested in it’s affect on the body, more specific the glandular system. I have several autoimmine diseases & I’d be curious as the affect on my situation!

    Reply
  • 6. Ann  |  June 29, 2011 at 10:28 am

    If someone from your office who has Celiac’s and maybe has been “glutened” lately- I’m curious if they took the test if it came back positive. Just wondering how sensitive the test is.

    Thanks!

    Reply
  • 7. Marilyn  |  June 29, 2011 at 10:33 am

    My daughter has Celiac Disease. My son has the Celiac Gene but not the disease yet. Since he is five and the last blood test was very truamatic, I think this would be a great solution for us to check him periodically.

    Reply
  • 8. Izzy  |  June 29, 2011 at 11:05 am

    So do you have to be eating gluten prior to taking this test?

    Reply
    • 9. Cheryl  |  June 30, 2011 at 9:28 am

      Yes. In order to get the best results, you must be eating a gluten-containing diet. Eliminating gluten prior to testing may affect the results.

      Reply
    • 10. Jennifer  |  July 1, 2011 at 7:46 am

      Since celiac is an autoimmune disease, you must be eating a regular gluten-containing diet prior to testing. If the trigger (gluten) is withheld, your body won’t make the antibodies we are testing for.

      Reply
  • 11. Jill Sokolowski Swift  |  June 29, 2011 at 12:02 pm

    Interesting idea…

    Reply
  • 12. kwei-meiandrwoman1@msn.com  |  June 30, 2011 at 9:38 pm

    how long do you have to be on the gluten-diet? inorder to take this test

    Reply
  • 13. Kathy Meritt  |  August 6, 2011 at 4:35 pm

    What is the cost and are they on the market?

    Reply
    • 14. Cheryl  |  August 8, 2011 at 3:05 pm

      The Biocard/CeliacSure test kit costs $50 and can be ordered at this link: https://www.glutenpro.com/store.php. Please note that these tests are not FDA-approved and are currently under research for use in the U.S.

      Reply

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