I post about celiac disease almost every day. I cover a little bit of everything — new research, clinical studies, personal experiences, and the daily reality of living gluten free.

I started doing this back in 2018 for two reasons.

1) To Document My Clinical Trial Experience

At first, this space was a diary — a place to record my time in the Nexvax2 clinical trial. Participating in a trial is surprisingly tough mentally. You’re always wondering whether you’re getting the real drug or the placebo, and that guessing game can wear you down. I wanted to capture the good, the bad, and the ugly — an honest, unfiltered record of science in motion.

2) To Combat Misinformation

Around the same time, I began digging into the claims I saw online about celiac disease and the gluten-free diet. The deeper I looked, the more misinformation I found. This site became my way to push back — to share facts grounded in research, not rumors, and to steady the conversation when it gets noisy.

If you’re new here, these myth-busting posts are a good place to start:

• The Raw Chicken Analogy for Cross-Contact
• Celiac Disease Screening, Part 2: Myths vs. Reality
• The Clinical Trial Effect in Celiac Studies

My Lived Experience

These days, my writing focuses more on the lived experience of celiac disease. I’m fortunate: my kids don’t carry celiac-associated genes, my family remembers the “before celiac” years when I was always sick and they’re supportive, and I live near several 100% (or nearly 100%) gluten-free restaurants. I don’t take any of that for granted.

After years of work, I consider my celiac disease in remission. It took three years for my blood tests to normalize and two more years for my intestines to heal. Looking back, I likely should have been evaluated for refractory celiac, but it wasn’t on the radar at the time. There’s research suggesting that, in specific severe or refractory cases, steroids can help speed healing — something I wish had been discussed then (source).

Understanding My Reactions

One unexpected benefit of the Nexvax2 trial was learning exactly how I react to gluten. My experience matches what the literature describes: within about two hours of significant gluten ingestion, vomiting starts; then I’m wiped out for a few days. A controlled challenge study found that many people with celiac experience symptoms within roughly 90 minutes to 3 hours of exposure — remarkably similar to my timeline (Tye-Din et al., Gut, 2018).

As for the lingering diarrhea I had for years, that may have been something else (possibly IBS), and it has improved significantly since reaching remission.

Why I Keep Posting

The goal behind everything I share is simple: to inform, to suggest, and to encourage. If one post helps you feel less alone or gives you a clearer way to understand your own celiac journey, then it’s worth it.

Living with celiac can be overwhelming and confusing. Sharing our wins, mistakes, and the messy middle makes it more manageable for everyone.

If this honest, sincere look at celiac life resonates, please share, follow, like, or subscribe. Your support helps keep the conversation real — and going.