Weak Positives for every marker- celiac or not?

[Kaylee G]

Over the past few weeks, I’ve had serology testing, an endoscopy, and an immunohistochemical stain study done, and each test has been just barely above the normal threshold and largely inconclusive. My blood EMA’s were negative, with a TTG of 5 (normal 0-3, but my local lab “runs low” with results). My endoscopy and histopathology was summarized with “The duodenal mucosa demonstrates mostly preserved villous architecture with a mild widening of the villi and a mild to moderate increase in intraepithelial lymphocytes in the lower limits of abnormal. (6-8 per 20 by co3 staining)”. I went gluten free for maybe two weeks before the endoscopy, but I was on my normal diet before the blood test (which was still relatively low in gluten, but definitely high enough to hurt a person with celiac disease).

I’m about to speak with my doctors regarding the most recent test results, and I just want to know if there are any other diagnoses I should ask about testing for? I’ve heard of other autoimmune diseases causing false positives before, but I’m not sure how common that is. It’s a little hard for me to believe I have celiac disease when my symptoms are atypical and the test results turn out so mild.

[trents]

There is a question in my mind if you were ever consuming enough gluten to render valid test results.

[Kaylee G]

16 hours ago, trents said:

consuming enough gluten to render valid test results.

Hey Trents, thanks for your help!! Does this mean I may gain clarity from a gluten challenge and retesting serology or some other marker? If so, I’ll definitely bring this up with my GP as an option (if he’s not already certain in one direction or the other).

[trents]

3 hours ago, Kaylee G said:

Hey Trents, thanks for your help!! Does this mean I may gain clarity from a gluten challenge and retesting serology or some other marker? If so, I’ll definitely bring this up with my GP as an option (if he’s not already certain in one direction or the other).

Yes. And the gluten challenge protocol has of late been revised to reflect the need for more intense exposure to gluten during the challenge period because medical professionals have come to realize the former protocol was to lax and failing to reliably produce positive test results in those who actually proved to have celiac disease. The thinking of late is 4-6 slices of bread daily (or the gluten equivalent) for at least two weeks leading up to the day of testing. So, it's more intense but of shorter duration.

[RMJ]

You said “positive for every marker”, but I’d edit that to “every marker tested” (unless there were other tests you didn’t list). Was total IgA tested to be sure that other IgA tests would be valid? What about TTG IgG, DGP IgA and DGP IgG? Perhaps a full gluten challenge as Trents described, and a full celiac panel.

On the other hand, do you feel better on a gluten free diet? If so, maybe that’s all you need to know.

 

[Kaylee G]

Thanks so much for the advice and support! I’ll make sure to go ahead and do some research on IBD and Crohn’s now. I cannot express how great it feels to have my emotions validated.

[Scott Adams]

A weak positive test is still a positive test, so it's likely that you may have celiac disease.

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:

 

 

[knitty kitty]

@Kaylee G,

Have you asked for a DNA test to look for Celiac Disease genes? 

If you don't have any of the genes for Celiac, you may have something else like colitis or crohns.  

Your two weeks gluten free before the endoscopy/biopsy and a low gluten diet in general would have affected your test results.  

Anti-gluten antibodies (tTg IgA, DGP IgA, etc) are only present when gluten is consumed.  A low gluten diet and going gluten free prior to testing will definitely affect test results.  

Ten grams of gluten a day are required to produce sufficient antibodies in the bloodstream and damage on endoscopy.  If a slice of bread has 2-3 grams of gluten, consumption of three to five slices every day for a minimum of two weeks would be necessary.  

Hope this helps!