Inconclusive Newbie Test Data?

[SunshineFace]

Hey All! Found my way here accidentally by eating grain-free to lower my A1c levels for the past 6 months. It worked, but then noticed hypothyroid symptoms and met with PCP. She suggested celiac panel test, but said it might be false positive if not eaten gluten recently. So I started back eating bread that same day. That was 2 weeks ago. I had sudden onset of horrible (returning) symptoms that I thought were gone for good - cramping, diarrhea several x day, pacing, brain fog, not sleeping, mental/mood issues, apathy, etc. Went back to PCP and she agreed to run the panel again. Kaiser’s basic celiac panel tests only IgA & Tissue Transglutaminase IgA. Kaiser IgA range is 40-350. 1st test: 250 and 2nd test (2 wks later) 268. tTG-IgA was 1.9 both times. She seems unwilling to refer me to Gastro now since my antibody tests fall within Kaiser ‘normal’ ranges. I’m not convinced that she understands Celiac either; she would prefer I stop eating gluten so I feel better, rather than confirm with biopsy that I’m Celiac. I agree with her that I need to avoid gluten, but not seeing a Gastroenterologist leaves me with more questions than answers. Would avoiding gluten for 6 months completely heal my small intestine after 50 years of heavy wheat intake (and show a negative biopsy)? Is this blood testing enough to rule out Celiac already? Can she refuse to refer me? And should I find a new doc? Thank you for all the info here!  Appreciate any insights! 

[Scott Adams]

Your symptoms after reintroducing gluten could indicate celiac disease or gluten sensitivity. Blood tests like tTG-IgA aren't always conclusive, especially after being gluten-free. An endoscopy and biopsy are the gold standards for diagnosis. Advocate for a gastroenterologist referral, even if it means seeking a second opinion or a new doctor. Healing from celiac can take 6 months to 2 years, so a biopsy after gluten exposure is best. Keep pushing for the care you need!

Also, the proper protocol for doing a blood test for celiac disease is 6-8 weeks of eating lots of gluten daily, at least 2 slices of wheat bread, before the test, otherwise the results might be false negative--or lower than they should have been.

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

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"...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;

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

 

 

[SunshineFace]

Thank you @Scott Adams for the links and the encouragement! And just to be sure I understand, the 6-8 weeks is only for bloodwork - as it takes a while for antibodies to build up, but they remain elevated for weeks after stopping consumption. And it sounds like bloodwork isn’t always that accurate?

But only 2 weeks to show damage to vili verifiable on biopsy? What’s the catch!?  What am I missing here? 

[Scott Adams]

That is correct--if you have celiac disease it takes longer for the antibodies to show up in your blood than it does for the damage villi damage to appear.

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

 

 

[SunshineFace]

YaY!!  Thank you!! 🥳