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The Celiac Project Podcast

The Celiac Project Podcast: 2 Guys Talking Gluten Free--hosted by Michael Frolichstein (Director of The Celiac Project Documentary) and Cam Weiner. Join Mike and Cam as they discuss living with celiac disease and navigating a safe gluten free lifestyle. They will feature special guests in the gluten free community, discuss current events and topics of interest.
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Feb 22, 2017

Cam is slightly disturbed by the results of a positive celiac blood test even after being hyper-vigilant about his gluten free diet. He talks openly to Mike about the test and they speculate on what might be the cause. Cam also talks about the more extensive tests he has coming up and his hope to get some answers about some of his ongoing health issues.

1 Comments
  • two and a half months ago
    Amelia Sherry
    Hello! I'm a registered dietitian and fellow celiac patient. I listened to your podcast for the first time yesterday. Kudos for talking about such a little-understood disease and pushing for answers. I feel for Cam and his perplexing tTG-IgA results. I think be now he has has his endo and colonoscopy. Hopefully, he's feeling better. Two thoughts as I was listening -- you both kept reassuring that Cam was very fastidious in his diet, that he is not exposed to any gluten in his diet as far as he knows. Never did you mention the body and hair care products or medications he uses. It could very well be that those have all been routinely checked for gluten, too; however, you did not mention it in the podcast so I wanted to bring up the issue. I was recently hospitalized and an ICU nurse with celiac told me a story about how he had been very ill and unable to eat solids for a week or so. During the course of his illness, he was only strong enough to get up and shower every day (dramatic, I know!). Finally, it dawned on him that he should check his shampoo. Sure enough, it had wheat gluten in it as an ingredient, which--once removed--proved to be the culprit. We often hear the idea that we need to check all lotions, creams, body care products, etc when we are first diagnosed, but we don't often talk or hear about it again. Please let listeners know that this is an issue and possible source of exposure, one they might also mention to their providers, so many of which also seem to be learning as they go. Secondly, and equally as important, the condition that you are describing that Cam has actually has a name, which is Nonresponsive Celiac Disease. It's good for listeners to know this, again, so that they can use it when having a dialogue with their care providers. NRCD has a set of diagnositic criteria, which Cam would fulfill based on his blood screen and could be from accidental gluten exposure, as well as a few other things, like small bowel bacteria overgrowth (SIBO), microscopic colitis (which is sounds like his GI is on to and is testing him for), wheat allergy, and probably other conditions that medical science just has not caught onto yet.

    Hope this was helpful. Let me know if Cam regularly checks his shampoo! And looking forward to catching up on other episodes of your terrific work.