Everlywell Testing

[aeddleman]

Hi all!

I ordered an Everlywell celiac screening test and received it today. However, I cut out all gluten approximately 2 weeks ago because it felt like I was legitimately dying from symptomology that has continued to worsen over the past year or so (anxiety/panic, brain fog/glitching, seizure-like episodes, stomach and breathing trouble, anemia, etc.) I just couldn’t take one more day of feeling so miserable.

Since quitting gluten I’ve felt absolutely amazing and I’m 100% certain that I have some sort of gluten intolerance, if not full-blown celiac disease. My question though is will I need to incorporate gluten back into my diet and for how long in order to receive an accurate test? I’m finding varying answers on the Internet, so I was hoping someone in the forums might have some insight or experience with this kind of testing. I’m honestly terrified of what might happen if I ingest even a slice of bread at this point, but I would also really like an accurate test result.

I realize I could just continue to eat gluten free and not care about a test result, but I feel it’s important to put a label on whatever I’ve been experiencing because my docs have done all kinds of tests for other heart/brain/lung issues that they thought might be causing my symptoms. So far, every test they’ve run has come back negative, which is great, but also awful because I still don’t know what’s wrong. If I can verify that I have celiac disease, perhaps this can put a stop to any other testing and guide my docs on a healing path that’s more direct instead of taking shots in the dark like they’ve been doing.

So, have any of you taken the Everlywell test? What are your thoughts on its accuracy if I haven’t eaten gluten in about two weeks? Thank you all in advance for your advice and opinions! I’ll be grateful to read them!

[Scott Adams]

Welcome to the forum!

The recommendations from the Mayo Clinic are to eat at least 2 slices of wheat bread worth of gluten daily for at least 6 weeks before your blood test for celiac disease.

It's likely you will still have higher antibodies after being gluten-free for 2 weeks, however they will be lower than if you had continued eating gluten, so may cause a false negative result.

 

[trents]

I am not familiar with the Everlywell test. In fact, I have never heard of it. The home celiac test kit I would probably recommend would be the one by Imaware. I have never used it myself but it seems to be popular.

The Mayo Clinic guidelines for the pretest gluten challenge is the daily consumption of two slices of wheat bread (or the equivalent) for 6-8 weeks leading up to the antibody test and the same gluten amount for two weeks leading up to an endoscopy/biopsy.

Most of your mentioned symptoms could be caused by either NCGS (Non Celiac Gluten Sensitivity) or by celiac disease. The one that would not be caused by NCGS would be anemia.

If your symptoms dramatically improve or disappear when gluten is eliminated from your diet then it would seem logical to conclude that you have a gluten disorder. The antidote for either NCGS or celiac disease is the same, namely, strict avoidance of gluten for life. You don't need to prove anything to your doctors and you aren't obligated to consent to any testing they want to perform. Would would be the point of more diagnostic workup if the symptoms disappear when you eliminate gluten?

If you have celiac disease, it typically takes around two years for thorough healing of the small bowel villi. You would do well in the meantime, e.g., your anemia, to address any nutritional deficiencies through supplementation with appropriate gluten free vitamins and minerals.

Edited November 7, 2022 by trents