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Newly diagnosed

trying2heal
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trying2heal Newbie
trying2heal
Posted

I've been very careful since diagnosis this past Saturday. Today my friend made me supposedly gluten free spaghetti. I enjoyed it but since then I have horrible body rash that feels like stinging all over and intense itching! I was also cleaning with comet earlier but this is a severe reaction.  Do you think I've been glutened?

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trents Grand Master
trents
Posted

Welcome to the forum, trying2heal!

Before diagnosis, did you get this type of reaction when consuming gluten?

trying2heal Newbie
trying2heal
Posted
  • Author
1 minute ago, trents said:

Welcome to the forum, trying2heal!

Before diagnosis, did you get this type of reaction when consuming gluten?

I would occasionally get raised lines always on neck sometimes back and shoulders but wasn't sure from what. They would itch horribly just like now. Been eating gluten all my life only recently like past month have I developed bloating, pain, gas, etc. Went to Dr. And ran blood test and diagnosed. I was going to post a pic of it, but not sure how lol

trents Grand Master
trents
Posted

Just type the test results in a new window. There is a very short time window for editing a post (for security reasons) and that is now past for your original post. Make sure you include the reference range for negative vs. positive for each test as there is no industry standard. Each lab develops their own. Did your physician discuss with you a follow-up endoscopy with biopsy to confirm the serum antibody tests? This is the normal process unless your antibody scores are very high.

Scott Adams Grand Master
Scott Adams
Posted

This article has some detailed information on how to be 100% gluten-free, so it may be helpful:

   and this one may be helpful:

 

  • 2 weeks later...
trying2heal Newbie
trying2heal
Posted
  • Author
On 8/29/2023 at 5:24 PM, trents said:

Just type the test results in a new window. There is a very short time window for editing a post (for security reasons) and that is now past for your original post. Make sure you include the reference range for negative vs. positive for each test as there is no industry standard. Each lab develops their own. Did your physician discuss with you a follow-up endoscopy with biopsy to confirm the serum antibody tests? This is the normal process unless your antibody scores are very high.

Thank you for taking the time to reply. Turns out I was diagnosed with cholinergic uticaria. A little gift courtesy of celiacs disease. It causes extremely itchy stinging hives when you're body temperature raises and you sweat. The body sends out a histamine response and it's pretty miserable. I take Zyrtec and make sure to try to cool down quickly. It's made exercise quite difficult lately as you can imagine, but it seems to be calming down some.

On 8/30/2023 at 10:29 AM, Scott Adams said:

This article has some detailed information on how to be 100% gluten-free, so it may be helpful:

   and this one may be helpful:

 

Thank you very much for these informative articles!

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      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/
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      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:  
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      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
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      By trents · Posted

      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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