Welcome to 2024!

The scientific journey is winding and complicated. Along the way, we learn things that challenge our current beliefs and push our knowledge of what it means to have celiac disease.

My niece has celiac disease. She is a teenager, navigating a teenager world, and has been eating gluten. Her lack of consistent reactions when consuming gluten are causing her to question her diagnosis.

Experience trumps scientific research in her mind and in many online forums. There is a lot to be said for experience, but when a scientific path is well-worn, you have to respect the path.

For example, the need for a celiac patient to have gluten free personal hygiene products. Gluten molecules are too big to be absorbed by the skin. A 2019 study showed that gluten above 20ppm was in less than 6% of in products that had no known gluten ingredients. https://loom.ly/nFliBKc Dr. Alessio Fasano says that you don’t have to worry about it. https://loom.ly/0bf_Jog. There are more articles, but you can find the same thing from a variety of reliable sources.

Lots of vexing questions remain in celiac disease research. What is the cause of celiac? Why are the genes so common but only a few people get celiac? Does some environmental factor affect whether celiac develops or not? Why do some take much longer to heal from celiac damage versus others? When will an adjunct to the gluten free diet or a cure for celiac disease be available? On and on….

But, assuming your skin reaction is due to gluten exposure is not something I’m willing to give on. Please note, I’m sure you are having a skin issue when you say you are. I’m saying the root cause of that skin reaction is unlikely due to gluten or related to celiac disease.

My niece was diagnosed at 4 with Marsh 3c damage (total villous atrophy) in her small intestine with positive blood tests. Her experience with gluten does not make her not have celiac disease. Her celiac diagnosis is a fact that isn’t affected by her consumption of gluten.

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