Dr. testing following Everlywell test

[mrsdelore]

Hello all. I posted a while back about having a "positive" indication on an Everlywell home Celiac screening test. I did get a referral to a gastroenterologist, who set me up for an endoscopy (which isn't scheduled until April because they are so booked) but did not order any new blood testing.

I have continued eating gluten since then since they put me on the waiting list in case there was a cancellation. Most days I just eat "normally" where I don't look to add gluten, but don't look to avoid it either if that makes sense. (Most days, I'm having at least 1 serving of gluten although there are some days where I have none.) Other than some flares of heartburn here and there, I have not been having many symptoms of anything.

In late December, I came down with a pretty bad case of RSV that ultimately landed me on some antibiotics and steroids in mid-January. Since that time, I've noticed even fewer symptoms that I was attributing to possible celiac. Bathroom issues have improved. Heartburn has improved even more although there are still occasional flares.

Out of curiosity, I asked my primary doc to run new blood tests are here are the results:
TISSUE TRANSGLUTAMINASE AB, IGA 4.7 U/mL

Notes: TISSUE TRANSGLUTAMINASE AB, IGA: Value Interpretation ----- --------------

<15.0 Antibody not detected

> or = 15.0 Antibody detected

 

So, if I'm reading this correctly, Celiac is NOT indicated?

I have forwarded the results to my gastroenterologist and am waiting for their reply. Because obviously I don't want to go through with the endoscopy (and the associated costs) if it's not indicated.

[Scott Adams]

Technically speaking you should be eating about 2 slices worth of wheat bread daily for 6-8 weeks before any tests, so it's possible the lower levels were due to you eating less gluten. The fact that you had a positive test before is still not fully explained, and you could still have celiac disease and/or non-celiac gluten sensitivity. Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

I would keep your scheduled endoscopy and be sure to eat 2 slices of bread daily at least 2 weeks leading up to it.

Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy:

Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

• Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
• Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

and this recent study recommends 4-6 slices of wheat bread per day:

 

 

 

[mrsdelore]

I guess I was more questioning the veracity of the Everlywell test, especially since it doesn't give actual numerical value results.

I have been eating gluten fairly consistently since November at this point. Like I said, there may be days where my menu choices don't include gluten but that's just because of what I've chosen to eat and not to avoid gluten.

I would think that if I was celiac, it would still show up as a much higher number than the 4.7 I received, even with a day here or there with no gluten. Additionally, symptoms have generally resolved. It all makes me wonder if something else was going on before - just not celiac.

 

[Scott Adams]

It's probably fair to say that Everlywell results are not as accurate as what you got from your doctor. It is possible for test results to fluctuate in celiacs who are still eating gluten, especially if there are variations in the amount of gluten they are eating. Many celiacs have no symptoms, so going by symptoms alone may lead to a missed diagnosis. I would still recommend doing an endoscopy if your doctor will allow it.

[knitty kitty]

@mrsdelore,

Your antibody tests may be giving inconclusive results because you are not eating sufficient gluten consistently to get your antibody production up to a level that is measurable in the bloodstream.  Diabetes, anemia and Thiamine deficiency can affect antibody production, causing false negatives, too.

In an earlier post, you had two positive DGP tests.  DGP antibodies show up in the bloodstream before tTg antibodies antibodies do.  TTg antibodies are produced in the intestines and then move into the bloodstream if gluten is consistently consumed.  Your inconsistent consumption of gluten is affecting your test results. 

Steroids given to you in December were given to reduce inflammation and the immune response to RSV.  Those steroids will also reduce the immune response to gluten in Celiac Disease.  So, it's no wonder your symptoms of suspected Celiac Disease have lessened.  It's a band-aid.  Your symptoms of suspected celiac disease will return when the steroids wear off. 

Have you had a genetic test for Celiac Disease?  If you have Celiac Disease, you will have celiac disease genes that never change, no matter if you eat gluten or not.  

In order for your upcoming endoscopy to show damage caused by anti gluten antibodies, you need to be eating sufficient gluten consistently.  

According to recent research, updates to the gluten challenge are being implemented.
Recommended intake of gluten should be increased to 10 grams of gluten per day for at least two weeks.  Several months may be necessary.

While three grams of gluten will begin the immune response, ten grams of gluten is needed to get antibody levels up to where they can be measured in serum antibody tests and changes can be seen in the small intestine.  

Keep in mind that there are different amounts of gluten in different kinds of bread and gluten containing foods.  Pizza crust and breads that are thick and chewy contain more gluten than things like cake and cookies.  

A slice of bread can contain 2 grams of gluten, so five slices of bread would equate 10 grams of gluten.

References:
https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/

And...
Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/?report=reader

 "In our study, limited changes in Vh:celiac disease (villi height vs crypt depth - aka damage to the small intestine)  following 14-day challenge with 3 g of gluten were observed, in accordance with Sarna et al.  While the 3 g dose was sufficient to initiate an immune response, as detected by several biomarkers such as IL-2, the 10 g dose was required for enteropathy within the study time frame. Based on our data, we would suggest that gluten challenge should be conducted over longer durations and/or using doses of gluten of ≥ 3 g/day to ensure sufficient histological change can be induced."

Keep us posted on your progress!

Edited March 2 by knitty kitty
Typo correction