I started writing this blog in 2018.

Initially, my goal was twofold. First, to fight the misinformation and bad advice I was seeing on social media about celiac disease. Second, to document my experience in a clinical trial about the drug Nexvax2.

Well… Nexvax2, as a drug, was a complete failure. The company running the trial shut it down after it completely missed its targets. (Here’s one clear summary of the discontinuation.)

During the trial, I was removed for my own safety. I had my first incident of idiopathic urticaria and edema — hives and swelling due to an unknown cause. We thought it was due to receiving the drug.

I later found out I was given placebo. The swelling and hives were unrelated to the clinical trial.

But here’s the thing: some really good science came out of that failure.

One of the most exciting developments? A blood test approach that can identify celiac disease without requiring a full gluten challenge is moving through research right now — using gluten-specific immune activation markers like IL-2. (Primary research in Gastroenterology (full text) and a plain-English breakdown from the Celiac Disease Foundation.)

This test will be a game changer in the celiac community.

I’ve seen surveys showing roughly 1 in 5 Americans report actively including gluten-free foods in their diet. (Gallup) To be fair, I think most casual “gluten-free” dieters have reduced their bread and pasta intake and call themselves gluten-free. That’s okay.

But what this test does is confirm immune system activation from gluten exposure. Will it make celiac patients ill? Yep — nausea and vomiting are likely. But there will be no confusion and no six-week gluten challenge.

Sometimes the drug fails. The science doesn’t. And that’s what people forget.

The other reason I started: to combat the festering cesspool of misinformation.

To be fair, I’m just a small voice in a sea of bad advice and misinformation.

Here’s an example:

I saw a post the other day with people talking about getting glutened from aerosol dry shampoo. Is it possible? Sure. Is it likely? No.

There were over 600 comments on that post. It took me 20 comments to get to one person talking about how gluten isn’t absorbed by the skin and how exceptionally rare it would be for someone to get glutened that way. Once this person posted, it was a pile-on: “I got symptoms,” “even the smallest amount causes damage,” “skin is the largest organ,” “it absorbs things,” and on and on.

Meanwhile, we live in a world covered in gluten.

Eating 100% gluten-free is the goal, but not the reality.

We aim for zero. Reality is closer to 100 mg a day — even on a strict gluten-free diet. And research suggests intestinal damage can begin at just 10–50 mg. (Gluten exposure estimates via GIP work (Syage et al., AJCN))

Thinking you got glutened because you may have inhaled a small amount of hair product misses the bigger picture. If you think you got glutened, it is more than likely from something you ate or drank.

And getting glutened isn’t “oops.” It’s a full immune event.

Getting glutened is not a trivial thing. It is a massive immune response to a foreign invader. One reason I get so annoyed watching misinformation spread is that we actually have research mapping immune activation to symptom timing — including IL-2 rising before vomiting begins. (Goel et al., open-access paper)

Just because your celiac blood tests are negative does not mean you are 100% gluten free. The standard celiac blood tests are not sensitive enough to pick up small, repeated gluten ingestion. If a gluten challenge with multiple slices of bread over time is required for diagnosis, that tells you exactly how much it can take to make common tests light up.

Don’t even get me started on the invasive and expensive endoscopy to check the status of your small intestine. Another necessary boondoggle that in this day and age should not be required to monitor celiac disease the way we still rely on it.

Anyway, I’ve been on a tirade this morning.

All of this to say…

FatCeliac posts across all channels have been seen almost 8 million times. That’s a lot of eyes on posts from a woman who started writing because she was angry at the sad state of celiac disease social media.

If you’ve ever felt overwhelmed by the noise: you’re not crazy. The noise is loud. But the science is getting louder — and better. And I’m going to keep translating it into real life, one post at a time.

Comment with the wildest celiac misinformation you’ve seen lately — and I’ll keep doing my part to stomp it out with facts.