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- Scott Adams replied to Fabrizio's topic in Related Issues & Disorders15Kan-101
So just to be cautious, there is a big difference between cured, and responding to their medication. I assume you mean that your daughter responded well while taking KAN-101 during the trial, but the drug would not cure celiac disease, but may manage it while you are taking it. Let me know if I got this right. -
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- trents replied to Godfather's topic in Gluten-Free Foods, Products, Shopping & Medications1Is Caputo gluten free flour really free of gluten?
Welcome to the forum, @Godfather! "Gluten-free" is not the same as zero gluten. The FDA standard for allowing the food industry to us the gluten-free label on a product is that it cannot exceed 20 ppm of gluten. That is safe for most celiacs but not for the subset of celiacs/gltuen sensitive people who are super sensitive. "Gluten-free" wheat starch products... -
- trents replied to Dana0207's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms1
Celiac symptoms
Welcome to the forum, @Dana0207! Another diagnostic approach would be to get biopsied for dermatitis herpetiformis which would not require an extensive exposure to gluten. But it would need to be done during an active outbreak of the rash. Celiac disease is the only known cause for dermatitis herpetiformis so it would be a definitive diagnosis. It might be...- 1
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- trents replied to Fabrizio's topic in Related Issues & Disorders15
Kan-101
Here is another one that is currently active. I know someone who has recently signed up to participate in it: https://celiac.org/aspirion-us/
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By Scott Adams · Posted
We have a category of articles on this topic if you really want to dive into it: https://www.celiac.com/celiac-disease/miscellaneous-information-on-celiac-disease/gluten-free-diet-celiac-disease-amp-codex-alimentarius-wheat-starch/ -
By Scott Adams · Posted
I agree with @trents, and the rash you described, especially its location and resistance to steroids, sounds highly characteristic of dermatitis herpetiformis, which is the skin manifestation of celiac disease. The severe and prolonged reaction you're describing five days after a small exposure is, while extreme, not unheard of for those with a high sensitivity; the systemic inflammatory response can absolutely last for several days or even weeks, explaining why you still don't feel right. Your plan to avoid a formal gluten challenge is completely understandable given the severity of your reactions, and many choose the same path for their well-being. While experiences with GliadinX (they are a sponsor here) are mixed, some people do report a reduction in the severity of their symptoms when taken with accidental gluten, though it is crucial to remember it is not a cure or a license to eat gluten and its effectiveness can vary from person to person. For now, the absolute best advice is to continue being hyper-vigilant about cross-contamination—buffets are notoriously high-risk, even with good intentions. Connecting with a gastroenterologist and a dermatologist who specialize in celiac disease is essential for navigating diagnosis and management moving forward. Wishing you a swift recovery from this last exposure. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch: -
By Scott Adams · Posted
So just to be cautious, there is a big difference between cured, and responding to their medication. I assume you mean that your daughter responded well while taking KAN-101 during the trial, but the drug would not cure celiac disease, but may manage it while you are taking it. Let me know if I got this right. -
Welcome to the forum, @Godfather! "Gluten-free" is not the same as zero gluten. The FDA standard for allowing the food industry to us the gluten-free label on a product is that it cannot exceed 20 ppm of gluten. That is safe for most celiacs but not for the subset of celiacs/gltuen sensitive people who are super sensitive. "Gluten-free" wheat starch products have been processed in such a way to remove enough of the protein gluten to comply with the FDA regulation but usually do retain some gluten and we usually get reports from some people on this forum who fall in the more sensitive range that such products cause them to react. Hope this helps. So, you may just have to experiment for yourself.
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Welcome to the forum, @Dana0207! Another diagnostic approach would be to get biopsied for dermatitis herpetiformis which would not require an extensive exposure to gluten. But it would need to be done during an active outbreak of the rash. Celiac disease is the only known cause for dermatitis herpetiformis so it would be a definitive diagnosis. It might be tricky, however, to time the dermatology appointment with the gluten exposure and outbreak.
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