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Spit Test For Celiac?


ButtercupSarah

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ButtercupSarah Rookie

I was getting bloodwork done a few days ago to test my thyroid and a few other things and I was recommended a cortisol test for adrenal function as my cortisol was double the highest number. I got the test home and realised that it also has a box to test for celiac. My doctor recommended testing as my symptoms are many.

 

Does anyone have any experience with the saliva test? I was confused because I have only ever heard of the blood tests and the endoscopy..

 

I am dx'd hypothyroid and taking armor also gluten free for 8 months.

 

After going gluten free my peripheral neuropathy improved dramatically, and my heartburn and gas also improved greatly. I'm still dealing with issues though....I am pretty careful with my diet, but when I do get glutened it is an awful experience. before going gluten free I hadn't had a solid BM in 2+ years! In the last month or so I have developed ridges in my nails, and I am concerned that they are from malnutrition. I am a fitness instructor and eat very well.

 

My main concern is that before I went gluten free I was hospitalized twice with extreme stomach and intestinal issues that they could find no reason for...vomiting, extreme pain, and *cough* having "accidents" ONE IN AN AIRPORT!! They just put me on percoset and sent me home. My Great Grandmother is hyothyroid and has stomach cancer, my Grandmother is hypothyroid and has a "wheat" allergy, and my uncle has MS.

 

My Dr. has the "just don't eat gluten and if you feel better great" attitude but I feel like I need to know the seriousness of the issue...and I don't know how accurate these saliva tests are! Or if it is worth glutening myself for an endoscopy?

 

Thanks so much for your input!


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1desperateladysaved Proficient

I think someone talked about it on the gluten summit.  They said it is a saliva test for antibodies for gluten.  When I asked about it on the forum someone said it is unproven.  The forum as a whole supports the use of blood tests.

Thursdaysangel77 Newbie

I am new to this whole thing and correct me if I am wrong but if someone has been gluten free for 8 months, wouldn't that potentially make antibody testing (Blood or Saliva) invalid? I am under the impression that you must be consuming gluten for the tests to be truly accurate and that your body can only produce the antibodies when you are exposed to gluten. Now of course, the levels can remain high for some time after discontinuing gluten consumption but more than likely testing after being gluten free for so long would result in a negative, whether you have Celiac Disease or not. 

So I am pretty sure you'd have to do a gluten trial regardless of the method you wish to test with. As far as the validity of a Saliva test in regards to Celiac Disease, I have no clue what it's efficacy is. I'd go with the standard blood tests if it were me but remember to research first and make sure you are following correct procedure to give yourself the best chance of accurate test results and I believe that would require gluten in your diet. Again, that is only if you wish to pursue it. Good luck, research everything and my apologies if I said anything inaccurate. Someone wiser, please correct me if I am wrong on anything I said.

~ Thursday

IrishHeart Veteran

There are no tests for diagnosing celiac disease using saliva (except those done for genetic testing.) at this time. ( but I think they are working on that one.)

 

"Salivary antibodies to gliadin lack sensitivity and specificity for celiac disease." That's according to Dr. Murray, a leading celiac researcher. 

 

But as you probably know, just having the genes associated with celiac is not a diagnosis, so that wouldn't help --unless you want to know if you carry those genes. It may be helpful for you in deciding if you wish to do a gluten challenge..

 

The screening process is here:

 

Open Original Shared Link

 

and unfortunately, yes, you would have to resume gluten for several weeks in order to have accurate testing done.

 

Because you have experienced symptom-resolution off gluten,I would guess you are not willing to go back on it for testing--and I do not blame you one bit!! But only you can decide if it is worth it or not.

 

Best wishes !

  • 2 weeks later...
ButtercupSarah Rookie

Bit of an update on this: I have been informed that the spit test I did for my high cortisol will also test for the celiac GENE, which makes a lot more sense. Hoping to get that test result back soon. Thanks a bunch guys!

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    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
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      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
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