This is sort of how I see the villi of someone with Celiac disease – flattened with big gaps between.

I missed this one, but in November 2019, there were some results from the Nexvax study involving endoscopic biopsies. It confirms what we already knew – blood tests and biopsy results are unrelated and celiac patients are sicker that they should be.

The study lists that 93 patients underwent endoscopic biopsies as part of their participation in the Nexvax2 clinical trial. Only SIX patients had Marsh 0 or 1 damage. Marsh 0 or 1 damage is considered normal. Thirty had Marsh 2 damage and fifty-six were Marsh 3a or 3b. The good news is that some people had complete healing. But out of 93 patients, 86 people had enough damage to warrant a celiac diagnosis.

More specifically, seventy-eight patients were on a gluten free diet for greater than two years and seronegative (had negative blood tests). 72 out of 78 patients have Marsh 2 or higher damage. Fourty -five or 58% of those tested still had Marsh 3 or higher damage. Typically, Marsh 3 or higher damage is required for celiac diagnosis.

So, even after two years of a gluten free diet and clean blood tests, these patients are just as damaged as someone who is just diagnosed with celiac disease. That is disheartening. Now, we always knew there was a chance that people with celiac may never heal. We also know that blood tests and damage are not correlated and this proves that again. How do we know the damage is ongoing without endoscopic biopsies? We don’t at this point.

Look, I can go off on this and talk about how frustrating it is. How we really need some way to know what is going on in our bodies. How we need something to help us because this diet alone isn’t working and these results prove it. But we just have to be patient. I know scientists are working on it. I know volunteers are volunteering to participate in trials. I’m just ready!

Here is the study.

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