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Yvonne Casey

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Yvonne Casey Rookie

I have a question for my longtime Celiac people….if by chance you go out to dinner at a restaurant and you’re as careful as possible, but somewhere along the line there was cross contamination; how soon do you get sick or have effects from it?  Is it possible for it to hit you the next day?  


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captaincrab55 Collaborator
16 hours ago, Yvonne Casey said:

I have a question for my longtime Celiac people….if by chance you go out to dinner at a restaurant and you’re as careful as possible, but somewhere along the line there was cross contamination; how soon do you get sick or have effects from it?  Is it possible for it to hit you the next day?  

First, you never defined the amount of cross contamination.   Reactions may vary widely amongst us.  I happen to have DH too and it's not very forgiving.   A small serving of Hunts Ketchup can cause a rash on me that may last days or weeks.  My observation is that we all may react different.

 

Scott Adams Grand Master

I agree that reactions vary so much from person to person that you likely won't be able to find two people who are just alike.

I've never heard that Hunts Ketchup contains any gluten...on their web site there are no gluten ingredients, and there are none of the top 8 allergens (milk, peanuts, eggs, fish, crustacean shellfish, soy, tree nuts, and wheat):

https://smartlabel.labelinsight.com/product/6124932/ingredients

 

captaincrab55 Collaborator
3 hours ago, Scott Adams said:

I agree that reactions vary so much from person to person that you likely won't be able to find two people who are just alike.

I've never heard that Hunts Ketchup contains any gluten...on their web site there are no gluten ingredients, and there are none of the top 8 allergens (milk, peanuts, eggs, fish, crustacean shellfish, soy, tree nuts, and wheat):

https://smartlabel.labelinsight.com/product/6124932/ingredients

 

Scott, I have DH and it cost me two visits to my Dermatologist, one in Florida and one in Maryland.  I broke out in Maryland just before driving down to my new home in Florida and made an appointment with my Dermatologist there.  By the time I was seen the rash was clearing up.  I returned to Maryland 2 weeks later and the rash broke out again. I made an appointment at my Maryland Dermatologist who diagnosed me with DH in 2009.  On the way to my appointment, I was talking to my daughter telling her the only food difference was the Hunts Ketchup in Maryland and Heintz Ketchup in Florida.  My daughter looked up Hunts Ketchup and found the following.   FYI, is hunt's 100 natural ketchup gluten free - Google Search  Instead, the company states that all varieties of Hunt's ketchup "do not contain added gluten," but aren't tested to see if they're legally gluten-free. In addition, the vinegar used to make Hunt's ketchup can be derived from gluten grains (primarily wheat).Mar 9, 2022

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    • Scott Adams
      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/
    • Scott Adams
      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:  
    • Scott Adams
      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.
    • trents
      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.
    • trents
      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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