Unsteady in my new diagnosis

[drjay]

About 2 years ago I got a referral to a GI because I was experiencing gut pain, bloating, and some other not so fun symptoms. He scheduled a colonoscopy and that came back fine with the exception of very small healing ulcers in my TI. I have a family history of stomach ulcers so I was prescribed a round of antibiotics and then placed on a PPI w/o an endoscopy to confirm. I think I may have convinced myself it was helping for about a year but I likely just acclimated to how I was feeling. Fast forward to January and my symptoms had gotten to be persistently unbearable and nothing was helping except some minor pressure relief from gasx. I get another appt with the GI and get an endoscopy done. There’s no ulcer so I stop the PPI and we do a SIBO test which comes back negative. The Dr orders a Labcorp celiac test immediately after he gets the biopsy results w/o the gluten challenge thing. I already don’t consume much if any because I suspected I may be sensitive to  gluten.  They grade the biopsy Marsh class 3 but my lab tests are weird and listed below

IgA 11 (weak positive is 19)
IgG 5 (weak positive is 19)
tTG IgA 3 (weak positive 4)
Positive for DQ2 and homozygous for DQB1*02 but negative for DQ8

My GI did diagnose as Celiac but the blood test makes me unsure.

Even though I’ve been unsure, I immediately went on a strict gluten free diet. Yesterday makes 12 days and it was the first day with a normal bowel movement in last several weeks.

Anyone have similar experience? 

[trents]

@drjay, your mixed test results experience is exceedingly common for someone having been consuming reduced amounts of gluten. A Marsh scale score of 3 indicates "significant villous atrophy" according to a quick google search I did and the biopsy is the gold standard diagnostic test anyway, not the blood antibody testing. It doesn't look like a "total IGA" blood test was ordered and without that we cannot tell if you are IGA deficient. If IGA deficient, other celiac IGA antibody scores, such as the tTG-IGA, cannot be trusted. They will likely be artificially low. And given the fact that there is significant improvement in your symptoms once you went on a strict gluten free diet, there is no doubt in my mind that your doctor's diagnosis of celiac disease is the correct one.

By the way, welcome to celiac.com.!

[Aretaeus Cappadocia]

@drjay in addition to what @trents wrote, I wanted to comment on your statement,

"Positive for DQ2 and homozygous for DQB1*02 but negative for DQ8"

You don't need DQ2 >and< DQ8 in order to be susceptible to getting celiac. Either one is good enough. DQB1*02 is a specific genetic allele that encodes part of the DQ2 protein. "Homozygous" means two copies of the same allele (the opposite is "heterozygous", where the two copies are different alleles). If you are homozygous for DQB1*02, you couldn't have DQ8. In other words, your genetic test tells you that you definitely have the potential to get celiac. 

 

[drjay]

Thanks, yall! The tough part now is figuring out if I’m actually feeling better or is it some form of placebo effect. I do actually feel better but I’m not positive if I may just be gaslighting myself lol