Celiac Skeptics? New Saliva-Based Test Facilitates Diagnosis

Do you remember when The View first did a profile on celiac disease?  If you do, then you probably remember (with horror) the fabulous comic Susie Essman, of Curb Your Enthusiasm fame, saying “I don’t know if I have it [celiac disease], but I know I’m gluten intolerant.”  Okay, maybe that’s not so bad, but then she continued to say “Well, my mother has celiac.”  Fast forward to minute 1, second 35, of the video, then minute 2, second 40, to see for yourself.

I suspect that everyone with celiac disease watching The View at those moments released a collective “arghhhhhhh.”

Susie knew that a) gluten bothers her and b) her mom has celiac disease. All signs point to the fact that she should get tested.  With celiac specialist Dr. Peter Green on national television hinting that she should, I would be surprised if she didn’t get tested eventually.

But we’re not just talking about Susie – people with this attitude abound. We hear from dozens of people every year that have relatives that refuse to get tested for celiac disease – despite the fact that they have a family member with it, or even sometimes despite the fact they themselves have symptoms of celiac disease. And not all of us have the opportunity to have Dr. Green show up to family functions and convince our look-the-other-way family members to get tested.

I’m no psychologist, so I don’t know why people do what they do, but I suspect if testing were easier (no two-month wait to see the doctor) and less invasive (no blood draws or endoscopies), people might be more likely to get tested.

Prometheus Labs has a new saliva-based genetic test for celiac disease called MyCeliacID that may fit the bill. For $329 you can order the test, and the company will send you a special vial to store your spit. This isn’t some slick mouth swab, like we were expecting. You literally must drool into the test tube, mix it with some stabilizing solution, seal it, toss it into a prepaid mailing envelope and send it back. Seven days later, you can access your results online. Quick, painless, and only a little bit icky.

The test itself checks DNA for genetic patterns that are associated with the presence of celiac disease. Positive results, however, don’t automatically equal a celiac diagnosis. They simply mean that there’s  a chance of the subject developing celiac disease. Because of the fickle, unpredictable and largely mysterious nature of autoimmune disorders such as celiac disease, even genetic makeup can’t definitively forecast the presence of illness. But hopefully, those who test positive will get the kick in the pants they need to see the doctor.

So what do you think? Do you think people who are otherwise doctor-phobic might take the test, if it’s presented as a simple “all you have to do is drool” type of chore?

Do you have any tips to share when handling relatives like Susie?

10 thoughts on “Celiac Skeptics? New Saliva-Based Test Facilitates Diagnosis”

  1. I didn’t get tested because it was a lot cheaper and simpler (and less invasive) to simply do as my doctor instructed and stop eating gluten. When I did that, I stopped getting sick, so that’s good enough for me. $329 is a LOT of money, so I definitely wouldn’t choose that route if I were so inclined. Besides, I know (A) If I eat any type of gluten I will get EXTREMELY sick, (B) If I avoid gluten I won’t get sick and (C) If I get an official diagnosis, many insurance companies will either state it is a declinable condition OR give me an insanely huge premium.

  2. I agree with Amanda. I tested negative for the blood test, likely because I had too little gluten in my system, so my next option is the invasive biopsy. What will I gain from a final diagnosis? Insurance problems. I know that I can’t tolerate even a little gluten, 30% of my mother’s family (if not more) are diagnosed celiacs, so why bother? The only reason I don’t call myself celiac is to avoid someone calling me a hypochondriac because I don’t have an official diagnosis. I call myself gluten-intolerant and that seems good enough for most people.

  3. question- i am a non-secretor- meaning i have no bloodtype antigens in my saliva- do i still have dna in the saliva for the test to work?…. i had inconclusive blood tests- and then my insurance would not pay for part of the endoscopy – so i dont know 100% if i have CD… i am def. G intolerant- but would be more vigilant if i had an official diagnosis- and i could get people off my back about my eating

  4. ps- isnt there some sort of stool test too??? but also- i just cannot do that “wheat challenge” ever again- awful

  5. When my sister read a book and figured that she and I were both gluten intolerant, it was a challenge just to get the doctor orders for the blood tests as we did not have a regular doctor at the time due to insurance no longer covering ours in any way. Now it is too late to get the endoscopy without going on a gluten challenge, and we are not doing that! It would be nice to know if we are celiac, but we probably never will. As for family, we beleive that our dad and many of his siblings and some of our cousins are gluten intolerant, but everyone refuses to get the blood test or even try going gluten free! It is frustrating since we know how much better we feel now, and they might be able to as well. They might be okay with the saliva test, but it seems sort of expensive to me.

  6. yes, there is a stool test, but there’s some disagreement on its accuracy. the biopsy, gene test (like prometheus) and blood tests are generally better accepted by the medical community. the biopsy is the gold standard. gene testing can’t diagnose celiac, but it DOES tell you whether you have the genes for it. and if you don’t, then you probably don’t have celiac. the nice thing abt the gene test is that it’s non-invasive. and the blood test, from what i understand, can be somewhat inaccurate but is also non-invasive and more highly regarded than a stool test.

  7. The biopsy is only going to be accurate if you’ve been eating lots of gluten. I didn’t know that when I scheduled my biopsy, and the doctor’s office called me a week before the test and told me to start eating gluten.
    At that point, I had been GF for 4-5 months. I told the doc I could not eat gluten because I would have to take a week of sick leave (not an option when you’re self-employed). The doc’s office told me to come anyway, and SURPRISE! the results were negative.
    Call me gluten intolerant or call it celiac, doesn’t matter to me. One sister has it (confirmed), and I believe my mom has it, but she denies it. She’s been tested twice — a blood test was given when she had not eaten anything for about 72 hours — negative. Another doctor performed a STOMACH biopsy and declared her negative for celiac. I only wish I could take her to a competent doctor who would tell her the real truth.

  8. It is possible to do the mouth swab genetic test for about $100 from Enterolab.com, so there’s no need to spend three times that amount for the saliva test. But the genetic test, while interesting, won’t tell you whether you are in a disease state. It is not true that being in a different HLA group than most celiacs is proof you haven’t the disease. A physician friend of mine who has been diagnosed celiac in the past year is an HLA type which is rarely mentioned as susceptible to celiac, yet she has had terrific success and relief from going gluten free.

  9. I had the saliva test and it came up positive for the antibody. In fact it was way over the level that indicates a gluten intolerance. I never had the intestinal issues typically associated with celiac so I opted not to get the biopsy. As Susan says, whether it’s celiac or a gluten intolerance, the solution is the same, eliminating gluten from the diet for the rest of your life. Since going gluten free, the most debilitating symptom, the migraine headaches, have almost completely disappeared. Now I only get them when I have an accidental encounter with gluten (like when the waiter at the Greek restaurant assured me that the saganaki only had cheese in it; it didn’t it was dredged in flour before being flamed).

  10. i just recently started having issues with a strange rash and upset stomach. i noticed after stopping eating gluten and drinking beer(which was hard living where there is sooo much great beer) i noticed my conditions improved. i called the doctor after they shewed me away with a typical rash, and told them the corrilation i had made. after a blood test and a upper endoscopy they could tell me i tested positive for celiacs.

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